To all of the unseen, 

How dare they? 

Preface 

What This Book Is — And What It Is Not 

This book is not medical advice. 

It is not a substitute for medical care, and it is not an instruction manual for managing any condition. Nothing in these pages should be used to diagnose, treat, or replace the guidance of a qualified clinician. 

This book is a map of a system that routinely loses people like me. 

It is a structural analysis told through lived experience — a record of what happens when a complex body moves through a medical landscape built for simplicity, speed, and standardization. 

Why This Book Exists 

If you have ever been told your labs are normal while your life is falling apart, this book is for you. 

If you have ever been bounced between specialists who only treat one square inch of you at a time, this book is for you. 

If you have ever been dismissed, minimized, or coded as “anxious” because your symptoms don’t fit the form, this book is for you. 

Zebra Files: The Patient’s Differential is written for the people who fall outside the template — the hypermobile, the neurodivergent, the chronically complex, the multiply‑marginalized, the ones whose bodies refuse to behave in ways the system finds convenient. 

What You Will Find Here 

You will find: 

• Zebra Files — short, real‑time dispatches from inside the diagnostic maze  

• structural analysis of how medicine handles (and mishandles) complex bodies  

• case studies of device harm, abandonment, and insurance collapse  

• sidebars explaining the mechanisms behind the failures  

• examples of how symptoms, systems, and stories intertwine  

• a method for building your own Patient’s Differential 

You will not find: 

• miracle cures  

• one‑size‑fits‑all solutions  

• promises that the system will change if you advocate “hard enough”  

• instructions to stop seeking care 

What a “Patient’s Differential” Means 

Doctors build differentials — lists of possible explanations for symptoms. 

Patients are rarely invited into that process. 

This book argues that complex patients must build their own. 

Not because they want to replace clinicians, but because the system is not designed to hold the full picture. When your body spans multiple specialties, you become the only person who can see the whole map. 

A Patient’s Differential is: 

• a timeline  

• a pattern map  

• a record of what the system missed  

• a tool for navigating care  

• a way to stay alive in a system that was not built for you 

What It Feels Like to Read This Book 

This is an along‑for‑the‑journey book. (These are along-for-the-journey bodies) 

You will see the system from the inside, not as a theory but as a lived terrain. 

You will watch: 

• symptoms evolve  

• referrals stall  

• imaging contradict itself  

• insurance deny the wrong things  

• specialists disappear  

• devices fail  

• hope flicker and return 

You will also see: 

• pattern recognition  

• self‑advocacy  

• community knowledge  

• the intelligence of disabled bodies  

• the power of naming what is happening 

Who This Book Is For 

This book is for: 

• patients who have been unseen  

• caregivers trying to understand  

• clinicians who want to do better  

• researchers studying diagnostic delay  

• anyone navigating a system that treats complexity as inconvenience 

If you have ever felt like you were the only one living this, you are not alone. 

If you have ever wondered whether the system is broken or whether you are, the answer is simpler than you think. 

It’s the system. 

It has always been the system. 

And this book shows you how it works. 

A Final Note Before We Begin 

Please continue seeking medical care. Please continue seeking answers wherever you may find them.  

Please continue working with clinicians you trust. 

Please use this book as a lens, not a replacement. 

This is not a guide for giving up on the system. 

It is a guide for understanding the system — so you can survive it. 

A Brief History of the Medicalization of the Body 

How the Human Body Became an Object of Classification, Control, and Correction 

Before medicine became an institution, bodies were understood relationally — as part of families, communities, ecosystems, and cosmologies. Illness was interpreted through meaning, context, and connection. A body in distress was a body out of alignment with its world. 

That changed when the body became an object. 

From Relational Being to Anatomical Specimen 

The shift began in the Renaissance with the rise of anatomical dissection. 

The body was no longer a participant in life — it became a thing to be opened, mapped, measured, and compared. The interior became a site of truth, and the person became secondary to the parts. 

This inaugurated a new hierarchy: 

• the physician as interpreter  

• the patient as specimen  

• the body as evidence  

• the person as noise 

The more medicine learned to see inside the body, the less it learned to see the person living in it. 

The Birth of the Clinic 

By the 18th and 19th centuries, the clinic emerged as a new institution — a place where bodies were sorted, categorized, and disciplined. Diagnosis became a form of classification. Deviations became “abnormalities.” Variations became “errors.” 

The clinic’s gaze was powerful: 

• it defined what counted as real  

• it determined which symptoms mattered  

• it decided who was credible  

• it established which bodies were legitimate 

The patient’s story was replaced by the clinician’s interpretation. 

The lived experience of illness was replaced by the measurable signs of disease. 

Industrialization and the Standardized Body 

As industrialization reshaped society, medicine followed suit. 

Efficiency, productivity, and uniformity became the new ideals. The “normal” body was defined statistically — not descriptively, but prescriptively. 

Anything outside the average became: 

• deviant  

• defective  

• pathological  

• in need of correction 

Bodies were no longer unique. They were units. 

And units were expected to function. 

The Rise of Specialization 

The 20th century fractured the body into specialties: 

• cardiology  

• neurology  

• gastroenterology  

• endocrinology  

• orthopedics 

Each specialty claimed a territory. 

Each territory developed its own language. 

Each language created its own blind spots. 

The whole person disappeared into the gaps between departments. 

Hypermobility, dysautonomia, intersex variation, chronic pain, connective‑tissue disorders — anything systemic, fluctuating, or multisystemic — became nearly impossible for the system to see. 

Medicalization as Social Control 

As medicine expanded, it absorbed more and more aspects of human life: 

• birth  

• death  

• gender  

• disability  

• behavior  

• emotion  

• identity 

What once belonged to culture, community, or self‑understanding became medical territory. 

The body became a site of intervention. 

The person became a site of compliance. 

Medicalization is not simply the act of treating illness. 

It is the act of defining what counts as illness — and who counts as ill. 

The Consequence: Erasure Through Expertise 

When the system defines normality, it also defines deviance. 

When it defines deviance, it defines who is dismissible. 

This is how entire populations disappear inside the medical record: 

• intersex people  

• hypermobile people  

• people with dysautonomia  

• people with chronic pain  

• people with rare or complex conditions  

• people whose symptoms don’t fit the template 

The system is not neutral. 

It is built on centuries of classification, hierarchy, and control. 

Why This Matters for This Book 

The stories in this manuscript — mine, Joey’s, and the many others threaded through these pages — do not exist outside history. They are the predictable outcomes of a system designed to: 

• prioritize what it can measure  

• dismiss what it cannot  

• normalize the majority  

• pathologize the margins  

• protect institutions  

• individualize suffering 

Understanding the medicalization of the body is essential because it reveals the truth: 

We were not failed by accident. 

We were failed by design. 

This book exists to map that design — and to make visible the bodies the system was never built to see. 

PART I — BODY AS DATA, PATIENT AS NOISE 

Entering the Diagnostic Wilderness 

Before the first chapter begins, we need to talk about what it means to live in a body the medical system doesn’t know how to read. 

For most people, symptoms are treated like isolated events — a sore knee, a headache, a stomach bug. The system is built around single‑problem visits, single‑system specialists, and single‑moment snapshots. It assumes the body is simple, linear, and cooperative. 

But some bodies — hypermobile bodies, neurodivergent bodies, intersex bodies, chronically complex bodies — don’t behave that way. They don’t present symptoms one at a time. They don’t stay in their assigned categories. They don’t follow the scripts medicine expects. 

These bodies generate data, not “complaints.” 

Patterns, not problems. 

Signals, not stories. 

And yet, when these signals reach the system, they are often treated as noise. 

What It Feels Like to Be “Noise” 

If you’ve ever been told: 

• “Your labs are normal”  

• “Your imaging doesn’t show anything concerning”  

• “That’s not related”  

• “We don’t see anything wrong”  

• “Let’s focus on one issue today” 

…you already know what it feels like to be coded as noise. 

It’s not that your symptoms aren’t real. 

It’s that the system isn’t built to interpret them. 

A hypermobile joint that subluxes and reduces before imaging 

A neurological symptom that flickers in and out 

A GI system that reacts to foods most people tolerate 

A spine that looks “fine” on X‑ray but collapses under load 

A flare that doesn’t fit the textbook 

A body that changes from hour to hour  

These are not errors. 

They are data points. 

Why This Part of the Book Matters 

Part I is about learning to see what the system misses. 

You’ll see: 

• how symptoms cluster  

• how patterns emerge  

• how “normal” test results can hide abnormal realities  

• how connective‑tissue disorders mimic other conditions  

• how multisystem issues get fragmented into unrelated pieces  

• how patients learn to track what clinicians overlook 

You’ll also see the Zebra Files — short, real‑time entries written in the middle of the diagnostic fog. They show what it feels like to live inside a body that refuses to simplify itself for medical convenience. 

These files are not polished stories. 

They are field notes from inside the wilderness. 

What You’ll Learn to Recognize 

As you move through Part I, you’ll start to see: 

• the difference between symptom and system  

• how “normal” labs can mask abnormal function  

• why connective‑tissue disorders break standard diagnostics  

• how to build a Patient’s Differential when the system won’t  

• how to track patterns across weeks, months, and years  

• how to understand your body as a data‑generating system 

You’ll also see examples of: 

• symptoms that look neurological but originate in connective tissue  

• GI issues that look dietary but originate in autonomic dysfunction  

• pain that looks musculoskeletal but originates in instability  

• fatigue that looks psychological but originates in physiology 

An Invitation Before We Begin 

You don’t need a medical degree to understand your own body. 

You don’t need permission to notice patterns. 

You don’t need to wait for a specialist to validate what you already know. 

Part I is the beginning of learning to trust your own data. 

Not because clinicians are the enemy — they aren’t. 

But because complex bodies require complex listening, and the system is not designed for that level of attention. 

This section is your invitation to step into the role the system often denies you: 

the expert on your own body. 

Now, let’s begin. 

1. Symptom vs. System 

When Your Body Refuses to Behave Like a Single Problem 

Most people enter medicine with a symptom. 

Complex patients enter with a system. 

A symptom is a moment. 

A system is a pattern. 

And when your body is built from connective tissue that stretches too far, nerves that misfire under pressure, hormones that fluctuate unpredictably, or chromosomes that don’t match the template, the system becomes the story — even when medicine insists on treating each piece as separate. 

This chapter is about what happens when your body refuses to stay in its assigned category. 

Inconvenient Architectures 

EDS, Klinefelter, MCAS — and the Bodies Medicine Wasn’t Designed For 

Some bodies are simply inconvenient for the medical system. 

Ehlers‑Danlos Syndrome (EDS) 

A connective‑tissue disorder that affects every structure built from collagen — joints, vessels, fascia, GI tract, bladder, skin, nerves. It is multisystem by definition, but medicine treats it as an orthopedic curiosity. 

Klinefelter Syndrome 

A chromosomal variation that affects hormones, metabolism, muscle tone, fertility, and neurodevelopment. It crosses endocrinology, neurology, urology, and psychiatry — which means no single specialist “owns” it. 

Mast Cell Activation Syndrome (MCAS) 

A condition where the body reacts to foods, chemicals, temperatures, and stressors in unpredictable ways. It looks like allergy, GI disease, dermatology, neurology, and immunology all at once. 

These conditions are not rare because they are uncommon. 

They are rare because the system is not built to see them. 

They break the template. 

They refuse to stay in one lane. 

They generate symptoms that don’t match the form. 

And when the body doesn’t match the form, the form wins. 

When Symptoms Mimic Other Diseases 

Renal Mimicry, GI Collapse, and the Myth of “Normal EDS” 

Complex bodies don’t present symptoms — they present illusions. 

Renal mimicry 

EDS can cause flank pain, nausea, urinary frequency, and back spasms that look exactly like kidney stones or infection. Labs come back normal. Imaging comes back normal. The pain does not. 

GI collapse 

Hypermobile intestines move unpredictably. 

Autonomic dysfunction slows or speeds motility. 

MCAS adds inflammation and food reactions. 

The result looks like: 

• IBS  

• Crohn’s  

• celiac  

• gastroparesis  

• food poisoning  

• anxiety 

…depending on the day. 

“Normal EDS” 

A phrase used when: 

• imaging is normal  

• labs are normal  

• symptoms are not 

“Normal EDS” is not a diagnosis. 

It is a dismissal. 

It means: 

Your body is doing something we don’t understand, and we don’t have time to figure it out. 

Menu Medicine vs. Pattern Medicine 

Why 15‑Minute Visits Can’t Solve Multisystem Problems 

Menu medicine is the default. 

It’s the system you enter when you’re told: 

• “Pick one issue today.”  

• “We don’t have time for all of that.”  

• “Let’s focus on the most important symptom.”  

• “That’s not related.” 

Menu medicine works for: 

• strep throat  

• sprained ankles  

• UTIs  

• ear infections 

It does not work for: 

• hypermobility  

• autonomic dysfunction  

• multisystem pain  

• hormonal instability  

• connective‑tissue disorders  

• neurodivergent bodies  

• chronic inflammation  

• overlapping conditions 

Pattern medicine is what complex patients are forced to build themselves. 

Pattern medicine asks: 

• When did this start  

• What changed  

• What clusters together  

• What flares at the same time  

• What improves or worsens symptoms  

• What systems interact  

• What the body is trying to say 

Pattern medicine is not a specialty. 

It is a survival skill. 

Example: A Symptom vs. A System 

How the Same Experience Gets Interpreted Two Different Ways 

Symptom interpretation (menu medicine): 

You say: “My vision blurs when I stand up.” 

They say: “You need an eye exam.” 

System interpretation (pattern medicine): 

You say: “My vision blurs when I stand up.” 

Pattern medicine asks: 

• Are you lightheaded  

• Is your heart rate spiking  

• Are you dehydrated  

• Are you overheating  

• Are you in a flare  

• Is your neck unstable  

• Is this POTS, MCAS, or cervical instability 

Same sentence. 

Two completely different frameworks. 

Sidebar: The X‑Ray Problem — Why Connective Tissue Disorders Are Sent for the Wrong Imaging 

Standard protocol: 

X‑ray first. 

MRI later (if insurance allows). 

What X‑rays show:  

• bones  

• fractures  

• calcification  

• late‑stage degeneration 

What X‑rays do NOT show:  

• ligaments  

• tendons  

• fascia  

• cartilage integrity  

• joint capsules  

• positional instability  

• subluxations that reduce before imaging  

• connective‑tissue failure 

Why this is a mismatch: 

EDS and hypermobility are soft‑tissue disorders. 

Soft tissue is invisible on X‑ray. 

Consequences:  

• “Everything looks fine”  

• delayed diagnosis  

• wasted appointments  

• wasted money  

• wasted energy  

• patients blamed for “normal imaging” 

Structural pattern: 

The system forces connective‑tissue patients through imaging designed for fractures. 

The wrong tool produces the wrong conclusion. 

The wrong conclusion becomes the patient’s problem.  

The Priming Effect: How a Single “Normal” Test Shapes Every Visit After 

The first negative test doesn’t just fail to diagnose anything — 

it primes the clinician. 

Once the X‑ray comes back “normal,” the system behaves as if: 

• the body is normal  

• the pain is exaggerated  

• the symptoms are unrelated  

• the patient is unreliable  

• the next test will also be normal  

• the problem is probably psychological 

This is not conscious bias. 

It is structural priming. 

The first “normal” result becomes the anchor. 

Every symptom after that is interpreted through it. 

This is why connective‑tissue patients get trapped: 

1. The wrong test is ordered.  

2. The wrong test returns “normal.”  

3. “Normal” becomes the baseline assumption.  

4. Every future symptom is filtered through that assumption.  

5. The patient spends years trying to disprove a conclusion that was never valid. 

A negative X‑ray doesn’t just miss the diagnosis. 

It reshapes the entire diagnostic trajectory. 

The wrong tool doesn’t just fail — 

it teaches the clinician to stop looking. 

The Negative‑Result Blind Spot: When “Normal” Is Treated as Nothing 

Clinicians are trained to treat a negative result as absence. 

But a negative result is always data. 

In connective‑tissue disorders, a negative X‑ray or negative lab is not a conclusion — 

it is a directional signal: 

• the problem is not bony  

• the problem is not inflammatory in the way that test measures  

• the problem is not visible to that modality  

• the problem requires a different tool 

But instead of interpreting a negative result as information, the system often treats it as: 

• proof nothing is wrong  

• proof the symptoms are exaggerated  

• proof the patient is anxious  

• proof further testing is unnecessary  

• proof the patient is the problem 

This is not a failure of compassion. 

It is a failure of epistemology — a failure to understand what a test can and cannot see. 

A negative result is not the end of the investigation. 

It is the beginning of the correct one. 

When clinicians treat “normal” as “nothing,” they erase: 

• soft‑tissue pathology  

• positional instability  

• intermittent subluxations  

• autonomic dysfunction  

• connective‑tissue failure  

• multisystem interactions 

And the patient is left to carry the consequences. 

A negative test is data. 

The system simply refuses to read it. 

Sidebar: The Standardization of Care and the Logic of Malpractice 

Why Menu Medicine Exists — and Why Pattern Medicine Is Systemically Impossible 

Standardization of Care is often presented as a benevolent safeguard — a way to ensure consistency, protect patients, and reduce error. But structurally, it functions as something very different: a liability shield for institutions and a behavioral script for clinicians. 

It is the backbone of Menu Medicine. 

What Standardization Actually Does 

Standardization of Care: 

• defines what counts as “appropriate”  

• narrows the range of acceptable clinical actions  

• prioritizes reproducibility over accuracy  

• rewards compliance over curiosity  

• protects institutions from legal exposure  

• punishes deviation, even when deviation is necessary 

It is not designed to help clinicians think. 

It is designed to keep them inside the lines. 

The Malpractice Trap 

Malpractice law does not ask whether a clinician was right. 

It asks whether they followed the standard. 

This creates a perverse incentive: 

• A clinician can be wrong and safe if they follow the standard.  

• A clinician can be right and liable if they deviate from it. 

So the safest thing for a clinician to do is: 

• order the test the guideline recommends  

• prescribe the medication the algorithm suggests  

• ignore symptoms that fall outside the template  

• avoid complex cases  

• avoid rare cases  

• avoid pattern recognition  

• avoid thinking 

Pattern Medicine becomes a liability. 

Menu Medicine becomes survival. 

Why Complex Patients Are Systemically Unservable 

Standardization works only when: 

• symptoms are linear  

• presentations are typical  

• bodies behave predictably  

• conditions fit the template 

Hypermobility, dysautonomia, intersex variation, chronic pain, connective‑tissue disorders, multisystem collapse — none of these fit. 

So the system treats them as: 

• somatic  

• exaggerated  

• psychosocial  

• irrelevant  

• “not my specialty” 

Not because clinicians are malicious, 

but because the structure punishes them for seeing what the template does not include. 

The Hidden Curriculum 

Clinicians quickly learn: 

• curiosity is dangerous  

• pattern recognition is risky  

• listening too closely is inefficient  

• connecting symptoms is outside scope  

• deviating from the script is punishable  

• rare conditions are career hazards 

The safest patient is the one who fits the menu. 

The most dangerous patient is the one who doesn’t. 

Why Menu Medicine Wins 

Menu Medicine is: 

• billable  

• defensible  

• documentable  

• compliant  

• fast  

• predictable 

Pattern Medicine is: 

• time‑consuming  

• cognitively demanding  

• legally risky  

• poorly reimbursed  

• structurally unsupported 

The system rewards one and punishes the other. 

So clinicians practice the one that keeps them safe. 

The Consequence 

Patients with complex, multisystem, or atypical presentations are not failed by accident. 

They are failed because the system is designed to: 

• minimize liability  

• maximize throughput  

• enforce compliance  

• standardize care  

• suppress deviation  

• avoid complexity 

Pattern Medicine is what patients need. 

Menu Medicine is what the system allows. 

This sidebar exists to make the architecture visible: 

the problem is not the clinician — it is the structure they are forced to practice inside. 

Why This Chapter Matters 

Before you can build a Patient’s Differential, you have to understand the terrain you’re navigating. 

This chapter is the foundation: 

• symptoms vs. systems  

• data vs. noise  

• menu medicine vs. pattern medicine  

• connective‑tissue disorders vs. standard diagnostics  

• the illusions created by multisystem conditions 

You are not “too complex.” 

You are not “too many problems.” 

You are not “difficult.” 

You are a system. 

And systems require a different kind of listening. 

This is where that listening begins. 

2. The Patient’s Differential 

When the Only Person Who Can See the Whole Picture Is You 

In medical school, clinicians are taught to build a differential diagnosis — a list of possible explanations for a symptom. It’s a structured way of thinking: gather data, consider possibilities, rule things in, rule things out. 

But here’s the part no one says out loud: 

Complex patients are expected to arrive with their own differential already half‑built. 

Not because clinicians are lazy or uncaring, but because the system is not designed to hold multisystem bodies. When your symptoms span neurology, GI, connective tissue, hormones, autonomic function, and pain, no single specialist sees the whole map. 

So the only person who can track the pattern is you. 

This chapter is about learning to do that — not because you want to replace clinicians, but because the system leaves you no choice. 

The Double Bind: Dismissed for No Diagnosis, Punished for Self‑Diagnosis 

Complex patients are dismissed for not having a diagnosis. 

And the moment they try to fill the diagnostic vacuum themselves, they are punished for “self‑diagnosis.” 

This is not a contradiction. 

It is the structure. 

Because the system: 

• does not build multisystem differentials  

• does not track longitudinal patterns  

• does not interpret negative tests as data  

• does not recognize connective‑tissue mimicry  

• does not have time to assemble a full pattern map 

…the patient is forced to do the pre‑diagnostic labor. 

But here is the trap: 

The system cannot legally expect patients to diagnose themselves — 

and yet it functionally requires them to. 

The patient must: 

• map symptoms  

• track triggers  

• identify system interactions  

• document flare sequences  

• recognize mimicries  

• bring organized data 

…because no one else will. 

But the moment the patient presents this work, they are labeled: 

• “self‑diagnosing”  

• “Googling”  

• “catastrophizing”  

• “fixated”  

• “too informed”  

• “noncompliant” 

The system demands the labor and discredits the labor at the same time. 

This is the shutdown in the loop: 

1. The clinician cannot diagnose without a differential.  

2. The system does not provide the time or structure to build one.  

3. The patient builds the differential.  

4. The clinician rejects it because it resembles diagnosis.  

5. The patient is blamed for the resulting diagnostic void. 

This is why the Patient’s Differential exists: 

• not as diagnosis  

• not as speculation  

• not as overreach 

…but as the only tool left when the system refuses to map the body it is supposed to treat. 

The patient is dismissed for having no diagnosis. 

The patient is punished for attempting to understand their own body. 

And the system never sees its own role in creating the impossible bind. 

What a Patient’s Differential Actually Is 

A Map, Not a Diagnosis 

A Patient’s Differential is not a list of diseases. 

It’s a pattern map. 

It asks: 

• What changed  

• When it changed  

• What flares together  

• What improves together  

• What systems interact  

• What the body is trying to communicate 

It’s the difference between: 

• “My back hurts” 

and  

• “My back pain spikes when my hips sublux, which triggers nerve irritation, which triggers bladder urgency, which triggers autonomic chaos, which triggers GI collapse.” 

One is a symptom. 

The other is a system. 

A Patient’s Differential is the tool that lets you see the system. 

Why Complex Patients Must Build Their Own Differential 

Because the System Isn’t Built for Pattern Recognition 

If you have a single‑system problem, the system works fine. 

If you have: 

• strep throat  

• a broken bone  

• a sinus infection  

• a sprained ankle 

…you don’t need a Patient’s Differential. 

But if you have: 

• EDS  

• MCAS  

• dysautonomia  

• neuropathy  

• hormonal instability  

• chronic pain  

• overlapping conditions  

• symptoms that migrate or mimic other diseases 

…you need one. 

Because the system will: 

• split your symptoms across specialists  

• treat each piece as unrelated  

• dismiss what doesn’t fit the template  

• rely on imaging that can’t see your condition  

• rely on labs that don’t measure your dysfunction  

• assume “normal” means “fine”  

• assume “too many symptoms” means “anxiety” 

A Patient’s Differential is how you keep the story intact when the system breaks it into fragments. 

Example: The Mattress, the Flare, and the Renal Mimicry 

A Real‑World Case Study in Pattern Mapping 

This is what a Patient’s Differential looks like in action. 

The Trigger 

A king‑sized mattress that needed to be moved up a small flight of stairs. 

Not a dramatic injury. 

Not a fall. 

Not a medical event. 

Just a mechanical load that a hypermobile spine cannot stabilize against. 

The Sequence 

• The spine destabilizes under the load  

• Muscles spasm to compensate  

• Nerves become irritated  

• Pain radiates into the flank  

• Bladder urgency spikes  

• GI motility slows  

• Autonomic symptoms flare  

• Vision blurs  

• Blood pressure swings  

• Fatigue crashes 

This is not random. 

It is a system cascade. 

The Mimicry 

The flank pain, nausea, and urinary frequency look exactly like: 

• kidney stones  

• kidney infection  

• hydronephrosis  

• renal inflammation 

But: 

• labs are normal  

• imaging is normal  

• kidneys are fine 

The symptoms are real. 

The interpretation is wrong. 

The Pattern 

The pain is not renal. 

It is: 

• mechanical instability  

• → nerve irritation  

• → autonomic dysfunction  

• → bladder involvement  

• → multisystem amplification 

This is the pattern EDS bodies produce — and the pattern standard diagnostics miss. 

The Insight 

If you only look at the symptom (flank pain), you chase kidneys. 

If you look at the system 

(instability → nerve → bladder → autonomic), 

you see the real mechanism. 

This is the heart of a Patient’s Differential: 

Not “What disease is this?” 

but 

“What pattern is this?” 

How to Start Building Your Own 

You Don’t Need a Medical Degree — You Need a Timeline 

A Patient’s Differential begins with: 

• a timeline  

• a list of triggers  

• a list of flares  

• a list of patterns  

• a list of mimicries  

• a list of “normal” tests that don’t match your lived reality 

You don’t need perfect data. 

You don’t need medical language. 

You don’t need certainty. 

You need curiosity. 

You need honesty. 

You need to notice what repeats. 

Example: 

“My vision blurs when I stand up” becomes: 

“My vision blurs when I stand up, especially when I’m dehydrated, overheated, or in a flare, and it improves when I lie down — which suggests autonomic involvement, not ophthalmology.” 

Example: 

“My back hurts” becomes: 

“My back hurts when my hips shift, when I sit too long, when my core fatigues, and when my joints are unstable — which suggests mechanical instability, not disc disease.” 

This is not diagnosis. 

This is pattern recognition. 

Why This Chapter Matters 

A Patient’s Differential is not a replacement for medical care. 

It is a translation tool. 

It helps you: 

• communicate clearly  

• track patterns clinicians can’t see in 15 minutes  

• avoid misdiagnosis  

• avoid unnecessary testing  

• avoid being dismissed  

• understand your own body  

• survive a system built for simplicity 

This chapter is the moment you stop being “too complex” and start being the expert on your own data. 

Because your body is not noise. 

It is a system. 

And systems can be mapped. 

This is where the mapping begins. 

3. When Labs Are Normal and Life Is Not 

The Quiet Violence of “Everything Looks Fine” 

There is a particular kind of heartbreak that only complex patients know — the moment when your labs come back “normal” while your life is falling apart. 

It’s not relief. 

It’s not reassurance. 

It’s erasure. 

Because when your symptoms are real, relentless, and reshaping your entire existence, “normal” doesn’t feel like good news. It feels like the system has run out of imagination. 

This chapter is about the gap between what your body knows and what the tests can see. 

Normal Ranges as Control Tools 

When Numbers Matter More Than People 

Normal ranges were designed for population‑level screening, not individual bodies. They tell clinicians whether something is dangerously high or dangerously low — not whether your body is functioning well. 

But in practice, normal ranges become control tools. 

They are used to: 

• end conversations  

• close diagnostic pathways  

• deny referrals  

• deny imaging  

• deny pain management  

• deny disability accommodations  

• deny the reality of your lived experience 

A normal lab becomes a stamp of legitimacy for the system, not for the patient. 

Example: 

You report crushing fatigue, dizziness, and cognitive fog. 

Your labs come back normal. 

The conclusion: “You’re fine.” 

But normal labs don’t measure: 

• autonomic dysfunction  

• connective‑tissue instability  

• neuropathic pain  

• mast cell activation  

• hormonal fluctuations  

• positional symptoms  

• sensory overload  

• lived function 

Normal labs measure what the system knows how to measure — not what your body is actually doing. 

Invisible Disability and Functional Collapse 

When Your Body Is Failing but the System Can’t See It 

Invisible disability is not about invisibility. 

It’s about misalignment. 

Your body is sending signals. 

The system is listening for different ones. 

You can be: 

• unable to stand without symptoms  

• unable to sit without pain  

• unable to walk without instability  

• unable to digest food reliably  

• unable to regulate temperature  

• unable to sleep  

• unable to work full hours  

• unable to function without mobility aids 

…and still be told: 

• “Your tests are normal.”  

• “Everything looks fine.”  

• “We don’t see anything concerning.” 

Functional collapse is not measured in labs. 

It is measured in: 

• lost work hours  

• lost mobility  

• lost independence  

• lost stability  

• lost trust  

• lost time 

Example: 

You reduce your work hours because your spine can’t tolerate sitting or standing. 

Your labs are normal. 

The system concludes the problem is not medical. 

But your life tells a different story. 

“Too Complex to Fit the Form” 

When the System Can’t Hold the Whole Picture 

Complex patients don’t fit the form — literally. 

The intake form asks for: 

• one symptom  

• one location  

• one timeline  

• one concern 

Your body offers: 

• twenty symptoms  

• five systems  

• fluctuating timelines  

• overlapping concerns 

The system is built for simplicity. 

Your body is built for complexity. 

When the form can’t hold your story, the story gets cut down to fit the form. 

Example: 

You report: 

• flank pain  

• nausea  

• urinary frequency  

• back spasms  

• vision changes  

• dizziness  

• neuropathic zaps 

The form allows: 

• “Reason for visit: back pain.” 

Everything else becomes noise. 

And when the system can’t hold the whole picture, the patient becomes the problem. 

You become: 

• “too complex”  

• “too many symptoms”  

• “too anxious”  

• “too sensitive”  

• “too difficult” 

But the truth is simpler: 

You are not too complex. 

The system is too narrow. 

Example: When Normal Labs Don’t Match Reality 

A Real‑World Pattern 

You wake up with: 

• electrical shocks down your spine  

• vision flickering in and out  

• bladder urgency  

• GI instability  

• joint pain  

• fatigue so heavy it feels like gravity doubled 

You go to the doctor. 

They run labs. 

Everything is normal. 

But your lived reality is: 

• you can’t climb stairs without symptoms  

• you can’t sit without pain  

• you can’t stand without dizziness  

• you can’t sleep  

• you can’t function without mobility aids  

• you can’t maintain your work hours 

Normal labs don’t capture: 

• instability  

• dysautonomia  

• neuropathy  

• connective‑tissue failure  

• mast cell reactions  

• positional symptoms  

• sensory overload  

• pain thresholds 

Normal labs don’t measure function. 

They measure biochemistry. 

And when the system mistakes biochemistry for function, patients disappear. 

Why This Chapter Matters 

This chapter is the moment you stop letting “normal” define you. 

Normal labs do not mean: 

• your symptoms aren’t real  

• your disability isn’t valid  

• your pain isn’t legitimate  

• your body is fine  

• your life isn’t collapsing 

Normal labs mean the system is looking in the wrong place. 

This chapter gives you the language to say: 

• “My labs are normal, but my life is not.”  

• “Normal does not mean functional.”  

• “Normal does not mean well.”  

• “Normal does not mean nothing is wrong.” 

Because your body is not a lab value. 

Your disability is not a number. Your reality is not noise. 

This is where we begin to name what the system cannot see. 

FEATURE FILES — PART I 

Field Notes From Inside the Diagnostic Fog 

Before you step into the Zebra Files, it helps to know what you’re looking at. 

These entries were not written with a book in mind. They were written in real time — in waiting rooms, on couches, between flares, during symptom storms, after appointments that went nowhere, and on days when the body felt like a puzzle missing half its pieces. 

They are field notes, not polished essays. 

They capture the texture of living inside a body the system doesn’t know how to read. 

What These Files Show 

Each file is a snapshot of: 

• what the body was doing  

• what the system was missing  

• what patterns were emerging  

• what questions were forming  

• what the emotional landscape looked like 

Together, they form a longitudinal record of: 

• instability  

• mimicry  

• dismissal  

• adaptation  

• pattern recognition  

• survival 

They show the before — before diagnosis, before language, before the system had a name for what was happening. 

How to Read These Files 

Read them the way you would read a weather log. 

Each entry is: 

• a data point  

• a clue  

• a piece of a larger pattern  

• a moment in the evolution of a Patient’s Differential 

Some entries are short. 

Some are frustrated. 

Some are hopeful. 

Some are exhausted. 

All of them are honest. 

Why They Matter 

The Zebra Files reveal what the system cannot see: 

• the slow accumulation of symptoms  

• the way flares ripple across systems  

• the emotional cost of “normal” labs  

• the exhaustion of self‑advocacy  

• the ingenuity required to stay functional  

• the way complex bodies generate patterns long before medicine recognizes them 

They also show the moment‑to‑moment intelligence of a patient learning to map their own body. 

The Files in This Section 

• One Bite at a Time (ZF 2) — learning to approach the impossible  

• Being Treated Like a Hypochondriac (ZF 3) — dismissal as a diagnostic barrier  

• The First Bite Is the Deepest (ZF 4) — the shock of early pattern recognition  

• YES Foods (ZF 5) — discovering what the body tolerates  

• ICYMI (ZF 6) — catching the system up to your reality  

• Did Not See This Coming (ZF 7) — the surprise turns in complex care  

• Life Keeps Lifing (ZF 8) — symptoms that don’t wait for convenience  

• Being Realistic (ZF 9) — adjusting expectations to match the body  

• I’m Not At My Best, But I’m Trying My Best (ZF 10) — the honesty of survival  

• Trying To Recuperate When I Run Out Of Spoons (ZF 11) — the economics of energy  

• Bracing for the Week Ahead (ZF 12) — planning around instability  

• Why Blog About It? (ZF 13) — documenting as resistance  

• Schrodinger’s Brain (ZF 14) — uncertainty as a daily companion  

• Meaningless Answers — Your Labs Came Back Normal (ZF 15) — the violence of “normal”  

• While We Wait (ZF 16) — the harm of medical limbo  

• Trying to Hit a Moving Target (ZF 17) — chasing symptoms that won’t stay still 

What Comes Next 

These files are not the story — they are the evidence. 

They show the reader what it feels like to live inside the diagnostic wilderness before the map exists. They are the raw material from which the Patient’s Differential is built. 

Now that you know what you’re stepping into, you’re ready to read them the way they were written — one flare, one insight, one survival strategy at a time. 

ZF 2 — One Bite at a Time 

One Bite at a Time… 

An old adage states that you can eat an entire elephant — one bite at a time. Now, of course, the realist in me thinks you’re going to want to refrigerate a big chunk of that elephant, because it’s simply going to take a while. 

Finding out that you’re a Zebra feels a lot like taking on a task like eating an elephant. There are so many pieces to this puzzle. So many things that I experience that I’ve dissociated from for so long, as I was dismissed over and over again. The questions I have seem endless, and this places my understanding of my own life experiences in an entirely new context. This is a big elephant. 

This blog will help me to take this on, one bite at a time, one question at a time, one answer at a time, and one move every single day toward a lifestyle that will better support me as I age with hypermobility syndrome. 

Lucky for me, elephants are allowed in my diet. (I’m joking of course, because I would never, ever eat an elephant). I’ve looked up countless medical diets over the years. I’ve examined diets for heart disease, cancer, you name it. Time after time I looked at these diets thinking “I hope I never have a heart attack, because if I have to eat this way it will kill me.” 

I weighed 350 when I found the Atkins Diet when I was 25. I didn’t know that I had hypermobility syndrome back then. I just knew that I was fat, in pain, and suicidal. I wanted to see my kids grow up. I wanted to live a dream or two. 

So, I took on this incredibly restrictive diet, which cost me most of my social world (we will break this bite down another time). I changed my eating habits, and I lost weight. I also physically experienced getting better. My pain diminished and I became more ambulatory. My breathing improved. My eyesight improved. Blood tests said that I was nearing kidney and liver problems which corrected with this lifestyle change. 

What I ended up having to eat was entirely more restrictive than Atkins, but in starting with Atkins, I was able to establish a baseline for my diet. From there I could actually tell what each food was doing in my body as I processed it. Atkins allows nuts. Turns out nuts light me up in terms of pain in my muscles and joints, and my lower digestive system. 

So, the way I ended up eating wasn’t Atkins, but it started with Atkins, and I had to learn what my body can actually tolerate, one bite at a time, one food at a time, one flare up at a time. 

Here’s the punchline. No doctor has ever given me the lifestyle answers to improve my quality of life. I cannot start to expect this now. I will be revisiting previous approaches to my health, because I physically know the difference they make — whether or not any doctor ever agrees. 

I will be breaking down this approach to my diet, exercise, and other lifestyle changes, one post at a time. While my diet is still ridiculously restrictive, allowing foods like low‑carb tortillas have moved me out of the diet in which I function best. 

Eating a restrictive diet is a struggle. Food that I can eat is not as readily available. Things have to be cooked from scratch, thawed out, planned ahead. If the food sucks, you don’t just get to cover it in ketchup and move on. 

This is not a little shift. I’m still eating low‑carb. I haven’t had bread in 13 years. No actual sugar enters my mouth by choice (but it’s always fun to play roulette when I order a Diet Pepsi that is filled up by anyone but me). Even though it’s been more than a decade since I’ve had pasta, potatoes, or rice, it’s just not enough. 

Enough isn’t determined by some doctor, or some magic diet list written down somewhere. My body is the only entity that determines what enough is, and I’m not there right now. 

But I know I can be. I know I don’t need doctors for these answers, because I have lived them. I know I can make these changes again, even though it’s hard. 

The point to doing this “One Bite at a Time” is to make something huge become manageable. 

Today I will reduce the number of cups of coffee I drink at work to 1. I know coffee hurts me (the creamer, and sweetener specifically). Coffee is a staple creature comfort for me. It took the place of ALL desserts. It satisfies my sweet cravings. It tastes amazing, and it hurts me. I should stop it altogether, but I just got my work to order the flavor of coffee pod I like for our espresso machine. (Nespresso Stormio 10/10 recommend — if it doesn’t hurt you). 

Yesterday, I built this blog. 

Before that, I figured out that the amount of time I spend sitting (8 hours a day) was literally pulling my back apart and compacting it. I adjusted my seating for alignment, took my yoga mat to work and am now taking mobility breaks (which have to be forced because I lose time and dissociate from my pain when I hyperfixate). I’ve spoken with my supervisor to create ongoing accommodations as I continue to age in this body. We adjusted my role so I can spend more time out of my seat, in incredibly helpful ways. 

I am beyond blessed to have such an accommodating work space. The YEARS I spent as a dishwasher were not as accommodating. I have an incredibly supportive family (credit to The Toxicity Toolkit). This too was not always the case. So, if I could do this under the most difficult of circumstances, I know I can do it again. 

One Bite at a Time… 

Over the weeks to come, I will talk about my One Bite each day. I’ll break down each of the little moves that it takes to journey through this, to seek answers, to have the best possible quality of life in the body I was born in, and to share community with Zebras like me. 

ZF 3 — Being Treated Like a Hypochondriac 

Dismissal as a Diagnostic Barrier 

Inevitably, if a person gets to where I am, they have been treated as though they are just making everything up. Pill seeking. Lying. It’s all in our heads. 

I can’t imagine coming this close to a diagnosis without having to search for answers for decades. I had to learn how to read medical journals. Had to seek out scholarship on what’s going on with me through paywalls, and a sea of abstract‑only level access. 

I’ve been told that I “just have arthritis” over and over again by doctors, even surgeons who have seen inside my joints first hand, while they refused over and over again to give me any guidance for my pain. 

I am amazed that anybody has ever diagnosed this at all, because it’s so difficult to even get a doctor to look at you. 

There is no magic SCRIPT (Social Control Reproduced/Reinforced In Practice/Performance, Text/Talk) that we know how to perform that will get us to the point of diagnosis and care. (Care is laughable, but we will come back to this later). When you tell professionals what’s going on with you, they never say “Hey, I think we should check your genes.” 

What you do hear is: 

“Have you tried losing weight” 

“You just have weak ankles” 

“It’s normal for people’s feet to hurt.” 

“Stop trying to get pills. Your knee should be all better by now.” 

“What do you expect carrying all of that weight around?” 

This is what “help” sounds like. 

Symptoms 

So, I’ve been having some very interesting symptoms, all of which have come on within the last year. I’m concerned. My eyelids sometimes rip pieces of my corneas off. I’m super light sensitive, and certain types of light are immediately unbearable. My nails are warping. I have zaps and zings and fast shooting headaches. My arm keeps going tingly/numb. There is no position that fixes it. My lower back feels like it’s being pulled apart (and it actually is — but I’m working with my body to correct this). My elbows, shoulders, hips, knees, and ankles pop constantly. My varicose veins have started itching. I don’t have a ringing in my ears, but it’s more like my ears will cut out if my neck is at certain angles. I’ve had nausea for months, and have vomited more this year than I ever have as an adult. I’ve had a runny nose for a couple of years now, and lately, it’s like mucus will take over my entire mouth, no matter how often I brush my teeth. There’s a taste that almost never goes away (hence my reluctance to give up coffee)… 

At this point I bet you’re wondering, “Where the heck are they going with this?” As I sit here typing this out, I have to admit that I’m afraid to tell you. 

Even though I have been diagnosed with a syndrome in which my joints pull apart, I’m afraid to just say it for fear of being hit with all that I’ve mentioned above all over again. My joints shift if I stay in one position for very long. The connective bits overstretch. When I move they don’t just go back to where they started. They stay overstretched. 

I did not know this as I sat in my chair at work for 8 hours a day, absolutely fixated on the work in front of me, in a chair that doesn’t enable me to sit the way my hips need me to. Cross‑legged seating is difficult to accommodate in an office setting. I’m using a weird chair, and a special pillow, and forced mobility breaks, and CBD on my breaks, and it’s WAY better but… 

Most of my new symptoms are also symptoms of Cerebral Spinal Fluid leaks. There’s a stronger correlation between CSF leaks and people with connective tissue abnormalities than with the general population. 

How do I go ask my doctor without being treated like a hypochondriac? 

To my doctor’s credit, once I brought up Ehlers‑Danlos Syndrome, he was incredibly accommodating. He started working on my referral before I even told him about the new zaps and zings and so much more. I still had to figure this out on my own. CSF is tricky to diagnose, and the odds of being told I don’t have one if I actually do is quite high. 

I feel like a hypochondriac. I’ve been conditioned to. 

ZF 4 — The First Bite Is the Deepest 

Day One 

Today was day one. Not really, I’ve been looking into these things for my entire life, so there’s really no such thing as a day one, but eating an elephant starts with that first bite. 

So today I limited my coffee intake at work. I did feel better than I have felt as a result. I know I have a lot more that I have to limit, change, and begin, but this was my first bite. 

In taking that first bite, I chose myself. I chose better outcomes for myself. I chose to take control of the variables that are in my hands. I chose to move forward, because staying stuck isn’t at all my style. (That was a joke. It was funny. IYKYK.) 

Today, I made a bonus move of using CBD to help me get through the work day. Tomorrow, I’m going to start doing a lap around the building to increase my motion, and help my body stay aligned during the day. 

Over the weekend, I will develop a full plan moving forward, one bite at a time, to improve my nutrition, get my body back in the motion that it needs, and find the answers that Zebras like me need. 

In the weeks to come, watch for details on what it takes to actually implement this level of lifestyle change, and you’ll be privy to details about its efficacy. You’ll witness my failures, and share in each little win. 

Specific To‑Do Items for This Weekend 

• Create list of “Yes Foods” that I have historically felt better when eating.  

• Compile the “Yes Lists” for the family. We each have different needs, and I desperately need this to work.  

• Create an exercise regimen that will help strengthen my joints and muscles, align my body, and improve my energy level. I will be keeping track of my metrics, but this isn’t about weight. Weight simply changes as a by‑product of doing what I need to do.  

• Create schedule for implementing all of the bites. 

I’m heading to bed now. I think I’ve had enough elephant for one night. 

ZF 5 — YES Foods 

I’m so glad you asked. 

YES foods are the foods that fuel us, that stabilize us, that heal us. 

How Do We Find Our YES Foods? 

It’s tricky. For me, personally, I always like to take things back to the Atkins Acceptable Foods for Induction list. When I eat from this list, although things feel limited, my body feels much much better. I know this because I have lived it. 

That being said, I have reviewed a LOT of medical diets, mostly in horror. Heart healthy diets instruct the opposite of what my body has responded well to in the past. Lots of complex carbs. Lots of raw fruit that I don’t digest well. Lots of doctors that will just shove a food list at you having no idea what havoc it will wreak in your body. 

I’m terrified of getting Heart Disease and being told to eat like this. I need to keep my carbs under 20g per day. Meat and fats don’t hurt me. Grains, root vegetables, several other categories of vegetable and all fruits DO hurt me. 

Feeling Isolated? 

I’ve lived the changes it makes. I know how severely my body punishes me for even considering the “better foods” above, much less the “best foods.” 

How do I know what my YES foods are? Research, Experimentation, Documentation, Analysis, More Research. 

According to HypermobilityClinic.org those with hypermobility syndrome should: 

• Limit processed foods  

• Limited saturated and trans fats  

• Avoid sugar substitutes  

• Consider going gluten free 

Strangely, the Atkins diet agrees with all but the saturated fats bit. 

I will continue to incorporate new knowledge into the plan as I encounter it as long as it doesn’t indicate that I should do things which I know do hurt me. 

I’m still going to start with Atkins Phase 1, Induction, when I’m ready to fully jump in. For now, I’m going to implement little changes every day that get me closer to Induction. I’m hoping to be Induction Ready in July. 

We will see how it goes. 

Getting Started 

If you don’t already have an idea of what the core of your “YES Diet” should be, explore which foods reliably feel safe. Be warned, this can be misleading. Frequently, I haven’t known that something was making me feel worse, until it stopped and I felt so much better. 

Create a large enough list to build a one‑week meal plan from. 

Think of safe foods you can eat on repeat, with some variations. I can have salad every day, but one day it’s topped with hamburger patties; the next day it contains lunch meats and black olives; the next day it’s grilled chicken and sautéed onions. This can be simple AND doable. 

The easiest way for me to think about the way I need to cook on induction is the SSSS Meal Prep Method. SSSS stands for Sunrise, Salads, Soups, and Stirfries. All enable me to blend the green vegetables I can tolerate, and need for vita‑nutrients, with the meats that are the safest food for me. All three enable me to create a variety diet, that doesn’t become boring, from my list of YES foods. 

Sunrise 

Eggs, Bacon, Sausage, Broccoli, Cauliflower, Spinach, Mushrooms, Onion, Black Olives, Cheese (Yes please!). 

Salads 

I like a bed blending spring mix and chopped iceberg. Additions include Green/Black Olives, Pickles, Broccoli, Cauliflower, Cucumber, Celery, Zucchini, Onion, Mushrooms, Burgers, Bacon, Chicken breast, Pulled Pork, Lunch Meats, Fish. 

Soups 

Intense flavor and a budget saver! Chicken Leg Quarters, Shredded Beef, Pulled Pork, Ground Beef, Celery, Onion, Broccoli, Cauliflower, Zucchini, Yellow Squash, Spinach. Bacon. 

Stirfries 

Chicken Thighs, Diced Pork, Shaved Beef, Bok Choi, Cabbage, Spinach, Snow Peas, Broccoli, Riced Cauliflower, Asparagus, Celery, Onion, Mushrooms. 

I should give up coffee. I think I’m going to try this with 2 cups a day, one at home, and one at work. 

I’m not going to monitor my diet soda intake. It doesn’t affect me, and I am giving up enough. (Oh, I really don’t like to think of this as what I’m giving up. So, I’m just going to let go of anyone’s criticism of what I think I should eat, because they aren’t in my body. I will be gaining so much as this improves my every day life. I know the food is amazing, and missing “what I’m giving up” requires my feeling sorry for myself, and that works against all of this. 

I will explain why I’m doing what I’m doing. I will not waste my time endlessly justifying what I need. For more on boundary work visit toxicitytoolkit.wordpress.com) 

Also, water with water enhancer is still water. Full stop. 

Start date pending. 

ZF 6 – ICYMI 

In Case You Missed It 

In case you’ve not thought about it, I’m just going to leave this here. I’m positive we will come back to this later. 

Not sure who to credit. Please let me know if you know. 

protyusagendher@gmail.com 

When I first published this post in June 2023, I was still undiagnosed. Since then I’ve been formally assessed and it turns out that I was right on the money. Autism. ADHD. CPTSD. Anxiety. 

The List That Started It 

The original post included a visual — a simple graphic listing behavioral signs of autism in adults that may have been missed in childhood. I didn’t write it. I didn’t annotate it. I just saw myself in it. 

Not in one or two items. 

In almost all of them. 

The list included things like: 

• masking so well you forget you’re doing it  

• chronic exhaustion from performing “normal”  

• sensory overwhelm that you’ve normalized  

• difficulty switching tasks even when you want to  

• hyperfocus that erases time  

• social confusion hidden behind competence  

• needing scripts to navigate conversations  

• shutdowns mistaken for “moodiness”  

• meltdowns mistaken for “overreacting”  

• lifelong feeling of being “out of sync”  

• intense special interests that feel like oxygen  

• delayed recognition of your own needs  

• people assuming you’re fine because you’re articulate 

Seeing it laid out like that — in plain language — was the first time I realized the pattern wasn’t personality, or trauma, or “quirks,” or “being too much.” 

It was autism. 

Why It Hit So Hard 

I had spent decades: 

• adapting  

• masking  

• compensating  

• over‑functioning  

• collapsing in private  

• being told I was “too sensitive”  

• being told I was “too intense”  

• being told I was “too smart to struggle”  

• being told I was “fine” when I wasn’t 

The list didn’t diagnose me. 

It just named what I had already lived. 

It was the first time I saw my internal experience reflected back at me without judgment. 

What Changed After Diagnosis 

When I updated the post later, it wasn’t because the list changed. 

It was because I had. 

I could finally say: 

• Yes, this is autism.  

• Yes, this is ADHD.  

• Yes, this is CPTSD.  

• Yes, this is anxiety.  

• Yes, this is real.  

• Yes, this explains the patterns.  

• Yes, this explains the exhaustion.  

• Yes, this explains the lifelong sense of being “other.” 

The list didn’t become less true after diagnosis. 

It became context. 

Why This File Matters 

This ZF exists because sometimes the first clue isn’t a doctor, or a test, or a referral. 

Sometimes it’s a graphic on the internet that hits too close to home. 

Sometimes it’s the moment you realize: 

• you weren’t imagining it  

• you weren’t exaggerating  

• you weren’t “too sensitive”  

• you weren’t broken  

• you weren’t alone 

Sometimes the first step toward understanding your body is understanding your brain. 

This file marks the moment the pattern came into focus — 

before the system caught up, 

before the paperwork, 

before the assessment, 

before the language became official. 

It was the moment you recognized yourself. 

And you were right. 

ZF 7 — Did Not See This Coming 

Notes from a Doctor’s Visit 

Meet Dr. Handjob. 

The good news is that my doctor didn’t treat me like a hypochondriac. 

Actually, this doctor never has. 

The bad news is that he thinks something else might be more likely than the CSF leak. The good news is that the diagnostic test for one happens to be the diagnostic test for the other. 

3 pending diagnoses currently: 

• Ehlers Danlos Syndrome  

• Cerebral Spinal Fluid Leak  

• Multiple Sclerosis 

Would it be inappropriate to place wagers? 

Oh… if it wasn’t clear, I’m using pseudonyms. That’s not my doctor’s actual name, but it’s pretty close. 

ZF 8 — Life Keeps Lifing 

I Can’t Keep Up 

So, I’ve had a post in the works for over a week now. It’s long. It’s profound. It’s unfinished. 

I find myself coming to terms with the fact that whatever is going on inside my body, I am less able now than I have been. I cannot do all of the things. I cannot meet all of the deadlines. I HAVE to be super selective in giving away my spoons. 

I have 2 MRIs coming up on 7/20, specifically looking for a Cerebral Spinal Fluid Leak and Multiple Sclerosis. Waiting and not knowing are quite difficult. In the time since my last post, I’ve gone from feeling afraid of a potential MS diagnosis (I did not see this coming, but it turns out there’s a higher population of people with EDS in people with MS because collagen affects myelination) to being afraid that they find nothing. 

My youngest just had their tonsils and adenoids removed. It’s a routine surgery that has absolutely rocked our home, and my baby is in so much pain. 

The week before their surgery I worked 54 hours, thinking I could run on the pure willpower I had relied on in the past. Friday night I almost fell down the stairs because I had nothing left. 

So I have to be less. 

Want to Know Why You Can’t Get Through to Your Children? 

My oldest goes in to have their ACL rebuilt from their hamstring this Friday. 

How can I be less — for me — and more — for those I love? 

How can I ask to reduce my time at work when they need me more, and I’m already taking 5.5 days off this month? How do I ask for accommodations when all I have is a Hypermobility Syndrome diagnosis that nobody understands, the EDS diagnosis is likely more than a year off, and despite having super crummy symptoms, nothing neurological has been confirmed (and might not be even after the MRIs)? 

How do I put together a lifestyle plan to get on top of this when life just keeps lifing? 

(The original post has a video explaining Spoon Theory.) 

ZF 9 — Being Realistic 

Real Talk 

So, yesterday, I posted my ideal diet moving forward. Ready for some real talk though? 

I work 40+ hours each week. I moonlight as a performer. I have a huge yard and an HOA. I’m a mom and partner. I’m an activist, and author. My time is limited (as I’m sure most people can relate). 

Not eating processed foods requires cooking from scratch, a lot. Like, every single meal, a lot. Like, never eating out because you can’t trust it, a lot. A lot a lot. 

Meal prep is an incredible tool, as is meal planning. They have their limitations though. Fresh ingredients rot faster. I’m going to be creating a LOT of dishes. 

Eating to fuel my health is different than eating to lose weight. 

Fasting isn’t particularly good for me. It sends me into craving cycles — powerful craving cycles — that jeopardize my ability to continue. This cannot be about punishing and restricting myself. This is about giving my body what it needs for me to experience the best health possible. This is about tuning in and listening to my body. This is about loving myself, having my own back, and giving myself what I deserve. 

Not eating until I get home from work is no longer a game plan. I need to eat when my body signals hunger. It’s hard to cook and work. It’s hard to listen to your body when you dissociate and hyperfixate. 

I’m going to need some emergency foods that still follow my “Yes” rules. 

Sugar‑free gelatin cups, precooked taco meat to make 2‑minute salads, olives. Too bad I’m allergic to avocado. I do have some processed meats (kielbasa, deli ham, pepperoni, sausage) that are quicker than raw unprocessed meats, but really I should stay away from these. 

Burger patties and tuna/mayo on celery are 10–20 minute solutions. 

When I lay it all out like this, it seems doable, except that it’s taken me more than a week to write this simple blog post. A plan like this is a lot when you’re at your best. I need this because I’m NOT at my best. 

So What Do I Do? 

I’m going to start by giving myself grace and time. I want to feel better and be better and this is going to be a long road. I also have concerns about trying to heal the things going on in my body while we’re still trying to figure out what they are. I intend to make all kinds of lifestyle changes to heal myself — but I need to know what’s wrong first. 

Needless to say, I’m still working on the plan, and trying very hard not to be intimidated by my elephant right now. 

(Original article has TED talk on giving yourself grace.) 

ZF 10 — I’m Not At My Best, But I’m Trying My Best 

Pressure 

I’m trying my best, and constantly wondering if it’s good enough, or if good enough even exists anymore. 

I just finished writing a letter to my place of employment describing all of the ways I’m not currently capable of doing my job. After a lifetime of feeling as though I wasn’t good enough when I WAS at my best and WAS able to give my 100% — I sobbed through the writing. 

People have always said I struggle with asking for help. 

It’s not so much that, as it is that not needing things or people has been my primary survival strategy this far in life. That’s not going to get me very far currently. 

I don’t really have any other SCRIPTs. 

I Need. 

I need to spend less time sitting at my desk. 

I need to prioritize how I’m spending my limited spoons. 

I need to stop running myself into the ground before I recharge, so I can improve. 

I need to learn my limits. I also have to admit that I have them. Definitely not my style. 

I need to work fewer hours. 

I need to get through diagnoses and into care as soon as possible. 

I need physical therapy, massage, and acupuncture. Maybe even a chiropractor. Many of which are only open during the same hours I work. 

I need to get back into therapy. I’m doing ok. If it can be easier, I WANT it to be easier. Therapy will help alleviate the burden of processing from my family, and help me process much faster. Therapy will also connect me to resources I don’t even know about as I navigate my entrance into needing accommodations. Therapy does not mean I’m not ok, it means that I will be. Additionally, my family has adopted gentle parenting and I want to make sure I support that as we navigate this. 

(If you are interested in gentle parenting please reach out to me: protyusagendher@gmail.com) 

I need to stop performing until I feel better. 

I need to care for my family too. 

I need to get my pain under control… 

The list goes on and on. 

Dropping the Ball 

So, as a result, I’m dropping the ball, and to be honest, I am just as surprised as everyone else when it happens. Everything works, until it doesn’t. I feel fine, until I don’t. My pain feels livable, until it doesn’t. I have spoons until I run out. 

I’m not at my best, but I am trying my best. I suppose we will find out together whether it’s enough. 

ZF 11 — Trying To Recuperate When I Run Out Of Spoons 

Running Out of Spoons 

It used to be so easy: Run myself into the ground, get a few hours of sleep, caffeinate, repeat. 

Be productive in the morning before you run out of steam. Don’t stop, or you might not start again. Push through, dissociate, keep going. 

Run out of spoons, crash, get back at it. Never stop pushing. 

I’ve been dealing with chronic pain since I was a kid. I got my foot stuck in the propeller of a boat when I was 7, ripping my ankle open. They put me back together with 8 large stitches. Never healed quite right, which it turns out is a trademark of hypermobility syndrome. 

Joint injuries for us lead to chronic pain and weaker joints. I am extremely prone to reinjury. I’m especially prone to injuries which are incredibly painful AND easily shrugged off. Had I known I had hypermobility syndrome (which is an absolute load of codswallop because they tested our flexibility every stinking year in the weekly abuse they shoved on us as “gym class” right along with making us “run” the mile — which is still not something that has ever happened in my entire life. I’ll save this tangent for later — but it’s coming.) 

Joints 

Had I known I had hypermobility syndrome, I would never have jumped off the playground tower the first day of third grade resulting in “one of the worst sprains the doctor had ever seen,” but no broken bones. I would have at least understood what was happening when I bent my foot in half trying to avoid falling on my infant. My pinky toe touched my heel. My foot was BLACK, but no broken bones. That doctor was pretty shocked as well. 

I made the 40‑minute drive after bending my foot in half, back home, to unload my kids and groceries into the car by myself, before putting groceries away and icing my foot. 

When I say I’m used to pushing through, THIS is what I mean, because I have had a whole lifetime of having to do THIS, so how do I learn where my limits are, when there haven’t reasonably been any limits on what I can endure. 

All of a sudden, I can’t. 

When I Was Homeless 

When I was homeless there was a time that we had moved our few possessions into this super shady trailer that didn’t have a kitchen. It had the “room” but no counters. There was a stove in the middle of the room. That was an adventure all its own, and I had to feed my kids. We were exhausted, hungry, and disheveled. I couldn’t find my cooking utensils, so I made a stir fry using hangers as very large chopsticks. 

My eldest joked, “When mom runs out of spoons, they just use hangers.” 

It’s not a metaphor — it was literal — and now I can’t. 

The Fear 

I’m afraid of not having the patience to navigate this all. I’m afraid of the people I will inevitably lose as my body fails my expectations, and theirs along with it. It’s all pretty overwhelming if I’m being honest, and still there’s a voice inside me coaching, “So what? Your whole life has been overwhelming. Get back out there!” 

I have to find some way of being honest with myself about when I’m running out of spoons. I have to find ways of refueling my spoons. I’m hoping that I’m able to make some accommodations at work that maybe give some of my spoons back. For now, it’s Sunday evening, I have to work tomorrow, and I still feel utterly spent. 

How do you replace your spoons? Reply at ProtyusAGendher@gmail.com 

Want to learn more about Spoon Theory? 

(Original article had video about chronic pain fatigue.) 

ZF 12 — Bracing for the Week Ahead 

Looking Forward 

So, with that last post I finally set down my last huge thing from last week. Now it’s time to look forward. 

Tomorrow, I will be asking for accommodations at work. Tomorrow, we are also supposed to have some company higher‑ups evaluating our efficiency. 

Under any other circumstances I would be absolutely thrilled. What an incredible opportunity to step up, collaborate, create, innovate! Unfortunately, they want more out of us, and I’m walking in tomorrow to tell them I can give them less. More is not an option. 

I feel disposable, and I fear that I’m painting a huge target on me in my company because it will be far easier to get rid of me for some “unrelated” reason, than to accommodate me. What I need is just not in the job description. That doesn’t mean that I can’t invaluably contribute, but I can no longer do that on their terms, and the job of what I CAN do doesn’t exist — at least not yet — so it’s a BIG ask. 

Oh! Tomorrow afternoon will be the first time talking to my PCP (Dr. Handjob as I like to call him) about my scoliosis. 

I’m befuddled. Why didn’t we already take X‑rays of my back when I told him it felt like my back is being torn apart? I don’t understand why they didn’t take images of my sacrum, despite how low the clicking/grinding is originating from. Why didn’t he just order the advanced imaging? I have things going to crap in other joints too? 

What in all heck am I going to have to do to get it ALL checked out? I can’t wait until the geneticist comes back. I haven’t even received the actual referral yet. 

My BODY isn’t waiting until the tests. 

I need help now — but needing help and getting help are not the same thing. 

Thankfully, I had the foresight to take Thursday off. Even if the advanced imaging isn’t yet ordered for my thorax, lumbar, and sacrum, I do have the advanced imaging of my head and cervical spine. I am incredibly eager to get answers and I’m quite scared. 

I’ve read that 50% of CSF leaks don’t show up on MRI. MS could become real this week. 

Thankfully my eldest’s knee surgery went well, but this is still a recovery home with intense personal needs. My youngest is still recovering from their surgery as well, and my partner is quite overdue for a break from it all. 

One breath at a time. One bite at a time. One symptom at a time. 

I’m tired. 

(Original article had video on Clinical Burnout.) 

ZF 13 — Why Blog About It? 

Attention Seeking 

I’ve been asking myself lately, why I feel the need to blog about this. 

Like… Is this really something I need attention for? And I know me, and I know that’s not it, so I persisted, but the question persisted as well. 

Reasons 

My reasons for blogging my medical journey are three fold (probably many more than that, but for the sake of this post it’s three fold). 

Writing enables me to process my experiences. When I write I analyze, I put puzzle pieces together, I complete ideas and lay them to rest, I discover questions and directions I hadn’t seen before. When I write my errant thoughts gain purpose, and I find pieces of peace. 

Second, this blog is a record of my journey, my symptoms, my experiences. It’s a timeline of a course of illness from before a diagnosis. If I need to find out when I started talking about electrical storms, it’s now searchable. Gems like lightheadedness or incontinence become trackable. I can look back on when my eyesight started going out when taking stairs, or when the stairs started dancing in my vision. I can track when I’ve missed work because of this. It’s a medical record that reads well. 

Lastly, representation matters. Visibility matters. If I hadn’t had a friend, being honest, open, and public about her diagnoses and experiences I would not have a clue WHY I’m feeling so awful or how to have any of the conversations I’ve needed to about it. I’m actually shocked at how many friends I have with similar symptoms and similar diagnoses. If we all suffer in silence, we all suffer. 

So, that’s why I’m blogging about it. 

(Original article has video about having the right to speak up.) 

ZF 14 — Schrödinger’s Brain 

So Many Possibilities 

Schrodinger 

(Original article contained video explaining Schrodinger’s Cat.) 

Metaphor for Uncertainty 

Until the tests (the opening of the box), all of these diagnoses — and the symptoms that go with them — are both real and not real at the same time. 

This should sound like an anomaly, but I’m pretty sure that most people who have experienced the process of being diagnosed with something that isn’t straightforward can entirely relate. 

There’s this constant battle in my mind right now. I do know that whatever is going on is real… but is it? 

Here’s the problem — no matter what symptoms I’m experiencing there’s this version of me who is mean, cynical, and doubting. 

Make no mistake, this version of me was created by my mother, so we’re just going to name this version of me “Joyce” in her honor, because it’s the need for survival that she seeded within me that anticipates the worst for me, that believes the worst in me, and is incredibly vocal (inside my head) about everything. 

The reasonable, logical, educated adult that I’ve become knows better. Sometimes. 

That’s not true actually. I know better all of the time, and it’s still been an incredible struggle. 

What If None of This Is Real? 

What if I’ve made the whole thing up? 

What if it really is “just arthritis” and the blood test was a false negative and everything else is fabricated? Because this is how this stretch of my journey started… I just want relief from the pain. 

The pain. 

But every once in a while, I’ll have a good moment. I’ll be sitting at my work computer typing away, and I’m not noticing my arm going dead on me, or the grinding in my lower back (which a recent X‑ray says is “normal”). In this moment, I hear Joyce. 

“You’re fine. So your body feels weird once in a while, and you think you just need everyone’s attention for it? Jesus Christ! Give me a break.” 

I’ll struggle on the stairs — losing my eyesight, and having the pattern in the carpet weave and dance in front of me — then the next time, it doesn’t happen, and Joyce chimes in. 

“It never happened. You made it all up, and this little ‘struggle on the stairs’ now is all an act.” I told you she was mean. 

I’ll take the next step, feel the zing down my leg, and the grind in my lower back, and tell myself, “You could suck this up if you wanted to. Why are you being such a child?” 

And the worst part is, I probably could. 

In any single task — I could probably “push through” and have actually spent decades doing so. So, this is what I expect of me, and I probably could push myself to run up the stairs one time. 

It’s the cumulative effect, and that seems less real. 

The Fear of “Nothing” 

I am not afraid of finding out I have MS today. I’m afraid of finding out that I don’t and being told that “nothing is happening.” 

In reality, I’m losing control of my arm about once per half‑hour. 

My eyes are super sensitive, and occasionally they do tricks. 

I’ve started having flash headaches. 

Walking at the end of the day is so painful. 

I struggle sitting at my desk at work. 

There are so many things going on that I cannot recall them all, even though I’m living in the body experiencing the symptoms. 

I’m having symptoms in most of the systems of my body. 

I spend all of my time seeking relief, and whenever any form of relief occurs, I start to think I’ve been making it up. 

Never mind that I’m on an extensive, everyday pain regimen to make some relief possible. 

Never mind that my symptoms and the diagnoses we’re investigating are defined by their intermittency. 

The System Didn’t Help Either 

I can’t just blame my mother either. Medicine has told me “Oh, it’s nothing,” so many times that I find it difficult to seek help for things that are obvious (like an open gash, or projectile vomiting). I find it difficult to believe that I will be validated regardless of the level of “proof,” and it’s much harder when there’s a chance of finding nothing. 

This is real and not real at the same time, all of the time, and that is really hard to navigate. 

Here’s to Answers 

Here’s to the possibility of answers, to arm my rational mind, and give me rest. 

ZF 15 — Meaningless Answers: Your Labs Came Back Normal 

The Violence of “Normal” 

In classic Zebra fashion I have been poked, prodded, and immobile (a special torture for the hypermobile) all for the sake of ruling out some big diagnoses. 

According to the MRIs it’s not MS, and I don’t have a CSF leak. My reaction to this is rather ambivalent. It’s nice to not be looking at the prognosis for MS. My symptoms didn’t go away when it was ruled out however. 

I’m still having jolts, shocks, zings, and zaps radiating from my spine. 

I still have vision that’s in‑and‑out. 

I’m still waging a constant battle against the sensations in my arm and for control of it. 

My footfalls are still very unpredictable, especially when my body runs out of spoons. 

I’m still peeing 20+ times a day. 

The pain in my lower back becomes unbearable as soon as the tramadol wears off. 

Walking up stairs is incredibly painful and triggers a myriad of symptoms from blurred vision, to light‑headedness, to a variety of electrical storms in my body. 

Sitting in the same position for any length of time, or standing for any length of time, becomes intensely painful quickly. 

I still can’t stretch out my body often enough or completely enough to relieve my pain. 

The System Says “Normal” 

I got a referral for physical therapy — and found a physical therapist that is familiar with hypermobility — and they don’t take my insurance. 

My insurance isn’t paying for jack — but has to be billed first for Medicaid to cover it. I just reapplied for Medicaid and I’m terrified of being dropped. 

I just asked for a reduction in my work hours, but have no idea yet what that will look like. 

The word microhemorrhage was on my MRI report, but apparently that’s not a big deal and I won’t know more until August 17. 

Lower back MRI didn’t “find anything,” but reading it there’s facet arthropathy and anterolisthesis. 

“In anterolisthesis, the upper vertebral body is positioned abnormally compared to the vertebral body below it. More specifically, the upper vertebral body slips forward on the one below.  

The amount of slippage is graded on a scale from 1 to 4. Grade 1 is mild (20% slippage), while grade 4 is severe (100% slippage),” 

— Cedars‑Sinai.org 

The grinding, clicking, and pain in my lower back have necessitated a reduction in work hours, but none of these findings are a big deal. 

The impact this reduction of hours is going to make on my bank account is a big deal though. Especially when $130 of every paycheck goes to paying for insurance that doesn’t actually cover anything. 

The Endless Loop 

Dr. Handjob’s office finally just gave me the number to the fancy geneticist because they won’t answer their phone. 

I reduced my hours to give my system rest, and it just feels like there’s more to do and figure out. I’m trying not to be overwhelmed. I’m trying to be patient. 

I bought a walker, to help me be mobile, because I’m afraid of becoming sedentary in my pain. 

Ugh. 

ZF 16 — While We Wait 

Trying to Hit a Moving Target 

I’ve used the analogy of taking my health on as eating a whole elephant one‑bite‑at‑a‑time. I forgot to mention that the elephant is still alive, moving, and fighting back. 

There has been a lot happening lately. There’s been a lot to process, plan, and problem solve. It frequently seems like the more I need to do, the fewer spoons I have to do it. 

According to recent MRIs, it’s not MS and I don’t have a CSF leak. Research says there’s a chance that these findings are wrong — MS can be in your spinal column and not show up in the head/neck — CSF leaks are missed — but for now we’re going to cross these off the worry list. Dr. Handjob also assures me that the microhemorrhage is “usually benign.” 

I’m still having symptoms though. The test being negative didn’t make the problem go away. 

I have another MRI next week, for my lower back. This is necessary in order to pursue more extreme pain control measures. Life is pretty brutal when the drugs wear off. 

My work hours have been reduced. I find myself floundering at home, not knowing what to do. The things I want to do will make symptoms worse, and the whole point of cutting back the hours is to get the symptoms under control. I feel guilty when I use my spoons off‑the‑clock. I feel guilty for having nothing left for my family. I feel guilty because I’ll be making less money. I feel guilty because I might make too much money to keep my Medicaid. I feel guilty when I have a good day. I feel guilty when the drugs are working. I feel guilty when I have nothing left. I know better, and I still feel guilty. 

I feel guilty because I haven’t gotten this all figured out yet. I feel guilty because I used to have some of this figured out, but didn’t know why, and couldn’t defend it enough to keep it up. Health is experienced socially. 

Bites I’ve Already Taken 

I realized that something was going on in my body, researched the heck out of it for years, and have explored a variety of dietary options in addition to moving my body as much as possible given my obligations and my pain. 

I initiated the medical oversight of my worsening pain. I take my meds religiously. I do a full yoga routine at least once a day (or I really can’t use my body much at all). I use an amazing CBD cream, a CBD/THC salve, meditation, breathing, pressure points, showers, heat (cold hurts me!), and good old‑fashioned dissociation for my pain. Sometimes I smoke CBD but it’s pretty nasty. I smoke a lot of pot, never get high, and can function well for about 45 minutes after I smoke. 

I’ve had 3 X‑Rays, 2 MRIs and I have another MRI next week. 

The Next Bites 

I’m going to start micro‑dosing mushrooms. Thankfully I live in a state where mushrooms have been decriminalized for personal use. 

It’s looking like a lot of the pain is structural, and not super treatable. The scoliosis for example — I think my highest Cobb angle was 16° — Dr. Handjob says that a Spine Specialist won’t look at anybody with less than 40°. It doesn’t matter that being hypermobile exacerbates these structural problems. 

I’m currently trying to get into Physical Therapy. I was referred to a PT that specializes with people with hypermobility and they don’t take my insurance so I can’t go there. They don’t take my insurance, which doesn’t pay for jack anyhow, and Medicaid has had to consistently pick up the bill. My insurance costs me $130 every two weeks, and it’s keeping me from the PT that I need. 

‘Merica. 

So I’m working on getting into ANY physical therapist. I’ll see if I can film my first visit. 

I want to get back into therapy — it’s time consuming. I want to seek out acupuncture and things I haven’t even thought of yet. 

I’ll keep pursuing all of this, but I also need to start doing better and doing more (I know, I know — I also have to do less. It’s complicated). 

I’m eating foods I shouldn’t be. Specifically, Splenda, heavy whipping cream, coffee, coffee creamer, low‑carb tortillas, Slim Jims, and nuts. I also need to cut back on the cheese. 

These are all inflammatory in my system. Inflammation is a trademark of hypermobility syndrome. I’m already taking a heavy‑duty anti‑inflammatory, but I need to stop putting these things into my body. 

Have you tasted coffee? (Hold on, brb, I gotta go fill up my cup…) 

I’ve lived without coffee before. I know it makes me feel better. I know that when I was dishwashing and my carpal tunnel syndrome was raging, coffee (and the Splenda and creamer I put in my coffee) made a tremendous difference in the severity of my symptoms. I suspect that this move alone will dramatically reduce the severity of sensations in my arm — as I expect that these symptoms are impingement‑related, given their similarity to the carpal tunnel sensations, and the EDS propensity for impingement‑related issues. This is easily as big a deal as taking my meds every day, or doing the yoga. Today’s bite is that I’m no longer purchasing coffee supplies. I can take my time in the supplies I have on hand until I run out. I think it has to be forever this time, and I’m sad. I think it’s utterly ridiculous that I’m sad, but I’m sad. 

Low‑carb tortillas — my easy food, my always good and consistent food. Have you ever seen the autism meme about “picky eaters” that explains that a blueberry might be juicy, or squishy, or bitter, or sour — but a Cheez‑It is the same every single time? Low‑carb tortillas are that food for me. It doesn’t go bad the way lettuce mix does. It doesn’t overcook the way a hamburger patty or chicken breast can. It’s comforting every single time. The texture is SO GOOD!!!! Leaving it behind requires time and spoons for food prep. It’s hard to stand in my kitchen for very long. Cooking uses my arm. This one is going to be hard but I need to be free of this. The number of them I eat stacks up my daily carb count (which doesn’t matter for everyone, but it 100% matters for me). My colon needs me to knock it off with the gluten already. At least the floor under my desk will be cleaner (they get flaky af when placed in the air fryer…). This is trickier, because I’m not the only person who eats them. So I have to keep buying them, or make other people go without them, and that’s really not how I work. I’m giving myself one more week — to get a food plan in place, and adjust the groceries to accommodate this. 

A lot of cheese goes away with the low‑carb tortillas. The Splenda, creamer, and whipping cream all go away with the coffee. 

Nuts and my bite of the James… my snacks that don’t make a mess, are portable, and dry. Also snacks that the whole house snacks on. This one is just gonna be willpower — I’ll drop the nuts tonight — the Tiny Jims have one more week in my life. 

It seems like an easy list to walk away from. Coffee has been my dessert replacement for better than a decade. This leaves me with sugar‑free gelatin. At least it’s yummy, but it’s never what I want to pick. 

I guess at least I know which direction the elephant is heading… I’m hoping to get it to fight me less. Maybe if I wasn’t trying to eat it… 

I have to stop working against myself. 

PART II — STRUCTURAL VIOLENCE IN SLOW MOTION 

There is a kind of violence that doesn’t announce itself. 

It doesn’t bruise. 

It doesn’t bleed. 

It doesn’t leave a mark you can photograph. 

It moves slowly. 

Quietly. 

Administratively. 

It hides inside: 

• delays  

• denials  

• missing referrals  

• “normal” labs  

• short appointments  

• incomplete notes  

• insurance algorithms  

• triage categories  

• institutional forgetfulness 

It is the violence of not being helped, not being believed, not being prioritized, not being seen. 

Part I mapped the body — the symptoms, the patterns, the instability, the lived reality the system keeps failing to capture. 

Part II maps the system — the structures that turn ordinary medical processes into slow‑motion harm. 

The Violence That Doesn’t Look Like Violence 

When people think of medical harm, they imagine: 

• malpractice  

• mistakes  

• dramatic failures 

But the most common form of harm is quieter. 

It’s the harm of: 

• waiting months for care you needed weeks ago  

• being told your suffering is “non‑urgent”  

• being bounced between specialists who don’t communicate  

• being handed “normal” results that erase your reality  

• being forced to self‑manage decline while the system stalls 

This is not accidental. 

It is structural. 

How Slow‑Motion Violence Works 

Slow‑motion violence is cumulative. 

It builds over time. 

One delay is an inconvenience. 

Ten delays are a pattern. 

A year of delays is a collapse. 

One dismissal is frustrating. 

A dozen dismissals are destabilizing. 

A lifetime of dismissal is traumatic. 

This violence is not delivered by a single clinician or a single decision. 

It is delivered by the architecture — the way the system is built to prioritize efficiency over complexity, speed over nuance, liability over curiosity. 

The Patient Lives in Real Time. 

The System Does Not. 

Your body changes hour by hour. 

The system changes year by year. 

Your symptoms escalate in days. 

Your referrals process in months. 

Your instability is immediate. 

The system’s response is delayed. 

This mismatch is not benign. 

It is a form of harm. 

Why This Part Exists 

Part II exists because the story of chronic illness cannot be told through symptoms alone. 

Symptoms are only half the map. 

The other half is the system that interprets — or misinterprets — those symptoms. 

This part reveals: 

• how the system produces harm without intent  

• how administrative processes become barriers  

• how “standard practice” becomes structural violence  

• how patients are forced into self‑advocacy roles they never asked for  

• how survival becomes a negotiation with bureaucracy 

The Slow‑Motion Collapse 

By the time a complex patient reaches a diagnosis — if they ever do — they have already survived years of slow‑motion violence: 

• the violence of being told to wait  

• the violence of being told it’s nothing  

• the violence of being told it’s anxiety  

• the violence of being told to come back when it’s worse  

• the violence of being told “we don’t treat that”  

• the violence of being told “your labs are normal” 

This part of the book names that violence. 

Not to sensationalize it, but to make it visible. 

What Comes Next 

Chapter 4 begins the deep dive into the machinery: 

• pharma and the pain economy  

• insurance as gatekeeper  

• institutions and abandonment  

• the administrative logic that produces harm  

• the patient’s forced adaptation to structural failure 

Part II is not about blame. 

It is about mechanism. 

It shows how violence can be delivered without malice, without intent, without a single person choosing it — simply by following the rules of a system that was never designed for bodies like yours. 

This is structural violence in slow motion. 

And it is the backdrop against which every diagnostic journey unfolds. 

The Chasm Between Idealization and Actualization of Care 

What We Are Told Care Is vs. What Care Actually Is 

Every modern healthcare system rests on a story — a story about what care is supposed to be. 

It is a story of competence, compassion, coordination, and safety. 

A story in which clinicians listen, systems respond, and bodies are tended to with urgency and respect. 

This is the idealization of care: 

a promise of protection, expertise, and benevolence. 

But the lived experience of patients — especially those with complex, chronic, rare, or poorly understood conditions — reveals something very different. 

The actualization of care is fragmented, delayed, dismissive, and often harmful. 

Between these two realities lies a chasm wide enough for entire lives to fall through. 

The Idealization of Care 

The idealized system imagines: 

• clinicians who have time  

• institutions that coordinate  

• specialists who communicate  

• diagnostics that illuminate  

• treatments that help  

• pathways that make sense  

• patients who are believed  

• suffering that is addressed 

It imagines a world where care is linear, logical, and accessible — where the system functions as a safety net rather than a maze. 

This is the version of care taught in textbooks, advertised in hospital campaigns, and invoked in political speeches. 

It is the version of care people believe exists until they need it. 

The Actualization of Care 

The actual system delivers: 

• 15‑minute visits  

• siloed specialties  

• contradictory recommendations  

• normal imaging  

• normal labs  

• “come back if it gets worse”  

• “I don’t know what to tell you”  

• “it’s probably anxiety” 

It delivers waitlists instead of answers. 

Referrals instead of solutions. 

Dismissal instead of investigation. 

Silence instead of support. 

The actualization of care is not a failure of individual clinicians. 

It is the predictable outcome of a structure designed for throughput, not complexity; for liability protection, not curiosity; for standardization, not pattern recognition. 

The Psychological Violence of the Gap 

The distance between idealization and actualization is not neutral. 

It produces a specific kind of harm: 

• self‑doubt  

• shame  

• internalized blame  

• medical trauma  

• diagnostic limbo  

• loss of trust  

• loss of time  

• loss of function 

Patients are told the system is competent, so when the system fails, they assume they are the problem. 

This is structural violence in slow motion: 

harm delivered not through overt force, but through omission, delay, disbelief, and neglect. 

Why This Gap Exists 

The chasm persists because the system is built to: 

• prioritize what is measurable  

• ignore what is complex  

• reward speed  

• punish deviation  

• protect institutions  

• minimize liability  

• standardize care  

• suppress uncertainty 

Idealization is the myth that keeps the system intact. 

Actualization is the reality patients must survive. 

The gap between idealization and actualization is not a side effect of the system. 

It is the system. 

It is the architecture through which structural violence is delivered — quietly, bureaucratically, and relentlessly — while the myth of benevolence remains untouched. 

This section exists to name the gap, map the gap, and prepare the reader to see how every chapter in Part II unfolds inside it. 

4. Pharma and the Pain Economy 

Sacklers, Pain Scales, and the Scripting of Suffering 

Pain is supposed to be simple. 

Rate it on a scale. 

Describe it in a sentence. 

Take something for it. 

Move on. 

But pain is not simple. 

Pain is political. 

Pain is profitable. 

Pain is engineered. 

And in the United States, pain is a commodity — one that has been shaped, distorted, and exploited by the people who built the modern pain economy. 

This chapter begins with the moment I understood that truth in my bones — literally. 

The Night the System Left Me Alone With My Pain 

I was already mid‑flare when the molar came out — a molar with a diamond‑shaped root that had to be rocked out of my face for forty‑five minutes. 

By the time it was over, I was shaking. 

The pain was severe enough that breathing felt optional. 

I was told to alternate Tylenol and ibuprofen. 

Never mind that I can’t take ibuprofen because I’m already on daily celecoxib. 

Never mind that neither drug was going to touch the pain. 

Never mind that the clinician knew this. 

There was no plan. 

No alternative. 

No relief. 

Just the instruction to “manage it.” 

It was the middle of the night. 

I was alone. 

And the pain was so overwhelming that my thoughts went dark — not because I wanted to die, but because the system had left me with no viable way to live through the next several hours. 

This is what untreated pain does. 

This is what the opioid panic has done. 

This is what the Sacklers engineered. 

The Violence of a Choice That Was Never Ours 

Watching Painkiller on Netflix while trying to survive that night, I kept thinking: 

The person who could have instructed scientists to make a non‑addictive pain medication — a real one, one that actually works — chose not to. 

They chose addiction. 

They chose profit. 

They chose a drug that would hook people fast and keep them hooked. 

They chose a future where people in severe pain — people like me — would be denied relief because the system was too traumatized by the crisis they created to treat pain at all. 

The violence wasn’t just in the addiction. 

It was in the aftermath. 

Pain Scales and the Scripting of Suffering 

The pain scale was supposed to help clinicians understand suffering. 

Instead, it became a script — a way to flatten pain into a number that could be ignored. 

“If you can talk, it’s not a ten.” 

“If you’re not crying, it’s not severe.” 

“If you’re functional, it can’t be that bad.” 

Pain became something patients had to perform correctly to be believed. 

And when the opioid crisis hit, the script changed again: 

“Everyone exaggerates.” 

“Everyone wants drugs.” 

“Everyone is a risk.” 

Pain became a liability. 

Patients became suspects. 

Opioid Panic vs. Untreated Pain 

The opioid crisis created two parallel realities: 

People who were addicted and needed help. 

People who were in pain and needed relief. 

The system responded by collapsing both groups into one: 

people who could not be trusted. 

So now: 

cancer patients are denied medication 

surgical patients are sent home with Tylenol 

chronic pain patients are abandoned 

disabled patients are treated like criminals 

clinicians hide behind “standard of care” while people suffer 

The panic eclipsed the pain. 

The Economics of Suffering 

I covered drug reps. 

I covered kickbacks. 

I covered how profitable it is for a doctor to hide behind a standard of care while patients suffer. 

The pain economy is not an accident. 

It is a design. 

It relies on: 

cheap medications 

short appointments 

liability avoidance 

algorithmic prescribing 

fear of scrutiny 

fear of addiction 

fear of deviation from the script 

Pain is expensive to treat well. 

It is cheap to ignore. 

Chronic Pain Works Differently 

Chronic pain does not behave like acute pain. 

It does not follow the rules clinicians expect. 

It does not map neatly onto the pain scale they insist on using. 

I live at a 5+ every day — a level that would flatten most people — and I dissociate heavily just to survive it. 

A 7 can be completely incapacitating one day and just a “higher baseline” the next. 

I have functioned at a 10. 

I’ve had to. 

That doesn’t make it livable. 

It just means I’m still alive. 

Chronic pain rewires everything: 

• your nervous system  

• your perception  

• your tolerance  

• your coping strategies  

• your relationship to your own body 

It forces you into survival modes that clinicians mistake for “not that bad.” 

They see you upright and assume you’re fine. 

They don’t understand that dissociation is doing the heavy lifting. 

They don’t understand that chronic pain patients don’t rate pain the way acute‑pain patients do. 

They don’t understand that “functioning” is not the same as “okay.” 

Chronic pain is not a number. 

It is a condition. 

It is a constant. 

It is a landscape you learn to navigate because you have no other choice. 

And the system punishes you for surviving it. 

the way untreated pain becomes its own form of violence 

It also expands the essay into the broader architecture of the pain economy — the system that profits from suffering while refusing to relieve it. 

Why This Chapter Matters 

Pain is not just a symptom. 

Pain is a site of structural violence. 

This chapter shows: 

how the opioid crisis reshaped clinical behavior 

how fear replaced care 

how patients were left to suffer in silence 

how the system uses “standard of care” as a shield 

how the pain economy continues to harm people today 

It begins with one night of untreated pain. 

But it is not about that night. 

It is about the system that made that night inevitable. 

 

Sidebar: The Opioid Baseline Effect — How Opioids Rewired PT Expectations 

Physical therapy in the United States did not evolve in a vacuum. 

It evolved during the opioid boom — a period when millions of patients arrived to PT with their pain chemically suppressed. 

Protocols, progressions, and expectations were built on opioid‑buffered bodies, not untreated ones. 

When the opioid crackdown hit, the medications disappeared. 

The expectations did not. 

This sidebar maps the fallout. 

PT Protocols Built on Opioid‑Buffered Bodies 

During the 1995–2010 opioid surge, patients routinely arrived to PT: 

• able to tolerate higher loads  

• able to complete more reps  

• able to push through end‑range pain  

• able to perform aggressive stabilization work  

• able to progress faster than their underlying condition should have allowed 

Opioids didn’t just mask pain — they inflated the apparent capacity of the average patient. 

PT culture absorbed those inflated baselines and built its norms around them. 

Post‑Opioid Expectations Stayed the Same 

After opioid prescribing plummeted, PT expectations did not recalibrate. 

Patients were suddenly expected to: 

• tolerate the same loads  

• complete the same reps  

• progress at the same pace  

• push through the same pain  

• meet the same goals 

But now they were doing it without the chemical buffer that had made those expectations possible. 

The result was predictable: widespread failure that was blamed on patients instead of protocols. 

Measurable Outcomes of the Baseline Collapse 

The data tells the story clinicians refused to see. 

• PT adherence dropped 

Chronic pain cohorts fell from ~70% adherence to ~40% after opioid reduction. 

• Early dropout increased 

Especially among Medicaid patients and those with multisite pain. 

• Flares and injuries increased 

Exercise‑induced flare‑ups became more common as patients attempted opioid‑era protocols without opioid‑era pain suppression. 

• Functional improvement declined 

Chronic low back pain and complex‑pain patients showed significantly lower gains. 

• “Noncompliance” labels rose sharply 

Patients were blamed for failing to meet expectations that were never realistic. 

• Disability filings increased 

When patients couldn’t meet opioid‑era functional benchmarks, they were pushed out of work instead of supported. 

• Healthcare utilization increased 

More imaging, more ER visits, more specialist cycling — all downstream of unrealistic PT demands. 

• Hypermobile patients were disproportionately harmed 

They experienced: 

• higher reinjury rates  

• lower tolerance for protocols  

• lower functional gains  

• higher dropout  

• more rapid destabilization 

Hypermobile bodies were already operating at the edge of structural integrity. 

Removing pain suppression without recalibrating expectations pushed them past it. 

Structural Interpretation: PT as Compliance Test, Not Care Modality 

The opioid baseline effect reveals a deeper truth: 

PT stopped being a care modality and became a compliance test. 

Patients were judged not by: 

• their physiology  

• their connective‑tissue reality  

• their autonomic instability  

• their pain thresholds  

• their flare cycles 

but by their ability to perform at opioid‑era levels without opioid‑era support. 

The system mistook chemically inflated performance for true functional capacity — and then punished patients when their untreated bodies could not keep up. 

This is structural violence in slow motion: 

a system calibrated to medicated bodies, applied to unmedicated ones, and enforced through the language of “noncompliance.” 

5. Insurance as Gatekeeper 

Prior Auth, Step Therapy, and Denial as Default 

If pharma built the pain economy, insurance enforces it. 

Insurance is the quiet regulator of suffering — the entity that decides which bodies are worth treating, which treatments are worth paying for, and which patients are worth the administrative labor required to keep them alive. 

In the United States, insurance is not a payment system. 

It is a gatekeeping system. 

And the gate is almost always closed. 

Denial as Default 

Insurance companies don’t start from “How do we help this person?” 

They start from “How do we avoid paying for this?” 

This is why the first answer is almost always: 

• denied  

• not medically necessary  

• experimental  

• out of network  

• insufficient documentation  

• try something cheaper first 

The system calls this “cost containment.” 

Patients experience it as structural abandonment. 

Prior Authorization: The Administrative Wall 

Prior authorization is framed as a safety measure. 

In practice, it is a delay engine. 

It forces clinicians to: 

• justify obvious treatments  

• repeat documentation  

• appeal denials  

• resubmit forms  

• wait for approvals that may never come 

Meanwhile, the patient: 

• deteriorates  

• flares  

• loses function  

• loses stability  

• loses time 

Prior auth is not a medical process. 

It is a stall tactic. 

Step Therapy: The Forced Failure Protocol 

Step therapy requires patients to “fail” cheaper treatments before accessing the one that actually works. 

This means: 

• trying medications known to be ineffective  

• enduring side effects  

• worsening symptoms  

• repeating cycles of failure  

• proving your suffering over and over 

Step therapy is not treatment. 

It is ritualized harm. 

It forces patients to get worse in order to qualify for care. 

Medicaid as Structural Triage 

Medicaid is supposed to be a safety net. 

In practice, it is a triage category. 

Medicaid patients face: 

• fewer providers  

• longer waits  

• more denials  

• more prior auth  

• more step therapy  

• more administrative hoops  

• more suspicion  

• more abandonment 

Medicaid is not just insurance. 

It is a sorting mechanism that determines who gets access to care and who gets left behind. 

Sidebar: The Cost of Access — What Americans Actually Spend on Health Insurance 

The Financial Gatekeeping Hidden in Plain Sight 

Insurance is framed as protection. 

In practice, it is one of the largest financial burdens the average American carries — a burden that functions as its own form of gatekeeping. 

The Average Cost of Health Insurance 

As of recent national data: 

• Employer‑sponsored plans  

• Average annual premium for an individual: ~$8,500  

• Average annual premium for a family: ~$24,000  

• Employees typically pay 20–30% of this directly. 

• Marketplace (ACA) plans  

• Average annual premium for a benchmark plan: ~$6,000–$7,500 before subsidies  

• Deductibles often range from $4,000–$9,000 per person. 

• Private plans outside the marketplace  

• Frequently exceed $10,000–$12,000 per year for an individual. 

These numbers do not include: 

• deductibles  

• copays  

• coinsurance  

• out‑of‑network charges  

• uncovered services  

• prescription costs  

• medical devices  

• travel for care  

• lost wages from illness 

Insurance is not the cost of care. 

Insurance is the cost of permission to attempt care. 

Percentage of Income Spent on Health Insurance 

For the median American household: 

• Median household income: ~$75,000  

• Average total health insurance spending (premiums + out‑of‑pocket): $12,000–$15,000 per year 

This means the average household spends: 

16–20% of total income 

on health insurance and medical costs. 

For lower‑income households, the percentage is far higher: 

• Households making $30,000–$40,000 often spend 

25–40% of income on health‑related costs. 

For chronically ill, disabled, or medically complex people, the percentage can exceed 50%. 

The Structural Reality 

Insurance is not a neutral intermediary. 

It is a financial filter that determines: 

• who gets care  

• when they get care  

• how much care they can afford  

• whether they can pursue diagnosis  

• whether they can access specialists  

• whether they can survive chronic illness 

The system calls this “coverage.” 

Patients experience it as conditional access — access that must be purchased, maintained, and justified. 

Why This Belongs Under Insurance as Gatekeeper 

The financial burden is not incidental. 

It is part of the gatekeeping mechanism. 

Insurance companies: 

• profit from premiums  

• profit from denials  

• profit from delays  

• profit from under‑utilization  

• profit from complexity  

• profit from exhaustion 

The cost of insurance is not the price of care. 

It is the price of being allowed to try. 

This sidebar exists to make the economic violence visible: 

care is rationed long before a patient ever sees a clinician. 

Losing the Only EDS Doctor in Northern Colorado 

This is where the structural violence becomes personal. 

I had been seeing the only EDS‑literate doctor in Northern Colorado who accepted Medicaid — a single point of access in an entire region. 

And then, without warning: 

• she disappeared from the practice  

• no transition plan  

• no replacement  

• no referrals  

• no continuity  

• no explanation 

The message I received was simple and devastating: 

“There are no physicians available in our practice who see EDS patients. We cannot schedule you.” 

This wasn’t just a lost appointment. 

It was the collapse of your entire care pathway. 

Because in Medicaid logic: 

• if one provider leaves, the system does not replace them  

• if a specialty is rare, the system does not expand it  

• if a patient needs complex care, the system does not accommodate it 

Medicaid triage means you are only allowed the care that happens to exist, not the care you need. 

The Structural Interpretation 

Insurance is not a neutral intermediary. 

It is a gatekeeper that: 

• controls access  

• controls timing  

• controls treatment  

• controls referrals  

• controls continuity  

• controls survival 

And when the gate closes, the system pretends it was never open. 

What This Chapter Reveals 

Chapter 5 reveals: 

• how insurance companies weaponize administrative processes  

• how denial becomes the default setting  

• how Medicaid functions as structural triage  

• how losing a single provider can collapse an entire care ecosystem  

• how patients are forced to navigate decline while the system debates paperwork 

It also marks a turning point in the Patient’s Differential: 

the moment you understand that the barrier is not your body — it is the gate. 

Insurance is not the path to care. 

Insurance is the obstacle you must survive in order to reach it. 

6. Institutions and Abandonment 

“We Don’t See EDS Patients” as Policy Violence 

Institutional abandonment is rarely loud. 

It doesn’t arrive with a confrontation or a refusal. 

It arrives as a policy. 

A sentence. 

A script. 

A line delivered without emotion: 

“We don’t see EDS patients.” 

Not because the condition is untreatable. 

Not because the patient is unsafe. 

Not because the clinician lacks interest. 

But because the institution has decided — quietly, administratively — that certain bodies are too complex, too time‑consuming, too unprofitable, or too destabilizing to accommodate. 

This is not personal. 

This is structural. 

Policy Violence Disguised as Neutral Procedure 

When an institution says “We don’t see EDS patients,” it sounds like a boundary. 

It is actually a form of policy violence. 

It means: 

• “We will not resource the care you require.”  

• “We will not train clinicians to understand your condition.”  

• “We will not allocate time for complex cases.”  

• “We will not risk our metrics on your instability.”  

• “We will not carry the liability of your complexity.” 

It is a decision that protects the institution at the expense of the patient. 

And because it is delivered as policy, not emotion, it is almost impossible to contest. 

Specialist Churn: The Revolving Door of Abandonment 

Complex patients depend on specialists. 

But specialists exist inside institutions — and institutions churn. 

Churn looks like: 

• clinicians leaving without transition plans  

• departments quietly discontinuing services  

• specialists aging out of practice  

• clinics dropping Medicaid  

• new hires refusing complex cases  

• departments restructuring around profitability 

Each departure is framed as routine. 

Each loss is treated as normal. 

But for the patient, specialist churn is catastrophic. 

It means: 

• losing the only clinician who understood your body  

• losing continuity of care  

• losing access to diagnostics  

• losing access to treatment  

• losing the institutional memory of your case 

Churn is not random. 

It is a predictable outcome of a system that does not value complex care. 

Care Deserts: When Geography Becomes a Barrier 

When specialists disappear, entire regions become care deserts. 

A care desert is not defined by distance. 

It is defined by absence. 

Absence of: 

• expertise  

• continuity  

• institutional willingness  

• Medicaid acceptance  

• Disability acceptance 

• connective‑tissue literacy  

• autonomic literacy  

• time 

Northern Colorado became a care desert the moment the only EDS‑literate doctor vanished from the system. 

Not because the geography changed. 

Because the institution did. There is a distance between the advances of medicine, and being able to access those advances.  

Forced Self‑Triage: The Patient as Their Own System 

When institutions abandon complex patients, the burden of triage shifts onto the patient. It’s a matter of survival.  

Self‑triage looks like: 

• deciding which symptoms are urgent  

• deciding which specialists to pursue  

• deciding which flares to ignore  

• deciding which crises to survive alone  

• deciding when to go to the ER  

• deciding when the ER will make things worse  

• deciding how to manage decline without support 

Self‑triage is not empowerment. 

It is forced autonomy — autonomy without resources, without safety, without backup. 

It is the system saying: “You’re on your own now.” 

Documentation as Resistance 

When institutions abandon you, documentation becomes the only form of continuity you have left. 

Documentation becomes: 

• your medical record  

• your timeline  

• your diagnostic archive  

• your evidence  

• your credibility  

• your protection  

• your resistance 

You document because: 

• institutions forget  

• clinicians churn  

• systems reset  

• records disappear  

• narratives get rewritten  

• your suffering gets minimized 

Documentation is not a hobby. 

It is a survival strategy. 

It is the only way to maintain continuity in a system that refuses to provide it. 

The Structural Interpretation 

Institutional abandonment is not a glitch. 

It is a feature of a system designed around: 

• profitability  

• liability avoidance  

• time scarcity  

• standardized care  

• predictable cases  

• low complexity  

• high throughput 

Complex patients do not fit this model. 

So the system quietly removes them. 

Not with cruelty. 

With policy. 

What This Chapter Reveals 

Chapter 6 shows highlights: 

• how institutions abandon patients through policy, not malice  

• how “We don’t see EDS patients” functions as structural violence  

• how specialist churn creates care deserts  

• how patients are forced into self‑triage roles  

• how documentation becomes the only form of continuity 

It also marks a turning point in the Patient’s Differential: 

the moment you understand that abandonment is not personal — it is institutional. 

And once you see the mechanism, you cannot unsee it. 

FEATURE FILES — PART II 

Structural Violence in Slow Motion: Case Studies, Genealogies, and Primary Sources 

Part II is where the slow‑motion violence becomes visible. 

These feature files function as primary documents — lived case studies, genealogies of harm, and structural analyses that reveal how systems shape bodies, choices, and outcomes. 

They are not detours. 

They are evidence. 

Food Addiction Part 1 — How It Started 

A Personal‑Structural Genealogy of How Food Became a Control Mechanism 

scarcity, shame, and early conditioning 

the body learning to survive through whatever is available 

the first signs of engineered dependency  

This file establishes the origin story of a system that weaponizes hunger. 

Food Addiction — How It Started 

It’s time we get real about food, but there’s a lot that we don’t know. 

I should warn you that there’s no way to dig into this without directly facing some dark truths. 

Australopithecines — 2–4 Million Years Ago 

Humans eat food. Even the ones that try to avoid it still end up eating some food. Here we are with mouths, and growly tummies, on a questionably edible planet with no actual instructions. 

There were deaths. 

We put things in our mouths and survived some of them. We kept eating those. Some tasted better than others. We preferred to eat those. As we discussed in The Cult of the Ego, the best intel we had was from the people who had survived before us. We ate what they ate — mostly. 

Back in the early days, there was a lot of chewing involved. Gorillas, who also don’t cook their food, spend about 16 hours per day eating, and have to move constantly to keep an available food supply. 

Uncooked food requires a lot of chewing, and delivers only a fraction of the calories. We did a bunch of foraging. We moved around a lot. 

At this point we’re really a lot like all of the other primates. 

But the story doesn’t stop there. Hominids continued to coevolve with food. We’re going to do our best to just hit the highlights. 

Cooked Food 

The control of fire was a significant game changer. Once we started cooking food we spent less time chewing, got much higher caloric returns from our food, and were able to eat a more diverse diet. Cooking neutralizes certain toxins, makes unchewable foods softer, and reduces the risk of food‑borne pathogens. 

This really opened things up for humans. We got bigger brains and had more time on our hands. Awesome. 

At this point we’re still eating nutrient‑dense foraged foods, and hunting fresh, clean, wild game. The affluent forager has a lot of leisure time. 

Spare time and big brains lead to innovation. We start to grow food, notice patterns, and actively domesticate food crops. 

This makes much more food available. 

Agricultural Revolution 

Life before the Agricultural Revolution has been described as “nasty, brutish, and short.” Although the phrase originates from a very imperialistic mindset, osteological comparison of remains from those who lived before and after the switch to agriculture show that before, we had robust skeletons and evidence of some gnarly injuries. After, we became much more fragile, and pathologies arose from malnutrition. 

We could sustain much larger populations, but in much poorer health. We became sedentary, and built towns. 

Specialization 

We specialized. Some of us made food. Some of us made clothes. Some of us educated. Some of us made money off of the labors of others (this hasn’t stopped since!). Some specialized in order (law enforcement) or governance. Some specialized in healing. Many people still had a wide range of competencies as their labor was necessary to keep a household running, and care for offspring. 

These specialties come with inherent power and social capital differentials. 

Specialization means that you’re not doing everything yourself. If you’re the local blacksmith, you might not be the best gal to thatch a roof. You might, nevertheless, need your roof thatched, which requires a barter system at the very least. I fix your wagon hitch, and you thatch my roof. Good enough. 

What if the thatcher doesn’t need any blacksmith work, but you still need your roof thatched? Well, of course you can always DIY, but if you really want to keep the rain out, you’re going to want the thatcher to do it. Bummer. Now, you can try to work it out with a third party. Maybe there’s someone who has something the thatcher needs, who also needs some blacksmithing. This is starting to get complicated. 

Token Economy 

If we get any bigger, any more specialized, we’re going to need a token economy (money), credit, or both. UGH. 

It’s already starting to look like capitalism in here. So, now we all have to get enough tokens through our specialties to trade for our needs and wants. Some of our specialties don’t even receive tokens, so you have to rely on the tokens of others, which makes them the boss of you. 

The people with more tokens get to be the bosses of those without tokens. 

The more tokens you have, the more you can get. (Wait, that sounds rigged!) Our idea of the worth of a good or service becomes detached from its process, and we all focus on getting more tokens. 

People who have more tokens have more power, and they get what they want. People with fewer tokens have less power and struggle to make enough tokens to get by. (Their “free” choices also become “constrained” choices.) 

In the quest to amass tokens, the powerful and greedy enslave any others that they can, to steal their labor, and discard their lives, all to have more tokens. They enslave anyone they can, through any means necessary. 

Sugarcane Trade 

Addiction is money, and the same people that were willing to enslave other people to get more tokens were also very eager to invest in anything that people couldn’t resist, so they could get more and more tokens. 

Industrial Revolution 

Meat became very rare, but some people could access fish. Otherwise, grains at this point made up the bulk of the diet. Fresh produce goes bad quickly, and is only available during its seasons. 

Shelf‑stability became of the utmost importance. Canning, salting, dehydrating, pickling, and smoking helped elongate the window of safe consumption. They also require a lot of work. 

Root vegetables and grains ruled. 

Food wasn’t particularly safe. Foodborne illnesses were common. Water wasn’t the safest to drink. Ale was. Patterns evolved as a result. 

The rise of the factory and mechanization of agriculture began the era of ultra‑processed foods. 

Food Apartheid 

I can personally attest that populations that have to rely on food banks often receive food that is already rotting, or is incredibly addictive. Actual nutrition is still pretty scarce there. Bread is frequently unlimited. It’s easy to get an entire bakery cake. And sometimes there are months where the only vegetables are cabbage and tomato sauce. 

Food is a means of controlling populations, not nourishing them. 

Wrapping Up 

Excellent work today team! I’m so proud of you for hanging in there. 

Let’s wrap this up, shall we? 

Looking at humans’ coevolution with food tells us so much about how we interact with food, and how we’ve gotten to where we are, addicted to junk food in a growing obesity epidemic. 

For me, personally, it’s gotten me to 363 lbs. Again. 

Next we’ll look at ultra‑processed foods, and the effects they have on the body. 

Below are recommended topics to look up if you want to explore more of this history: 

• Richard Wrangham  

• The Birth of Farming  

• The Agricultural Revolution  

• The History of Sugar  

• Native American Food Sovereignty  

• Food Apartheid  

• How to Feed a Medieval Army  

• Poor Soldier’s Feast  

• What Did Civil War Soldiers Eat  

• Revolutionary War Army Kitchens  

• Poor Sailor’s Feast  

• Poor Beggar’s Feast  

• Poor Explorer’s Feast  

• Poor Farmer’s Feast 

Food Addiction Part 2 — Ultra‑Processed Food 

A Structural Analysis of UPFs as a Technology of Control 

hyperpalatability as design 

regulatory capture 

biochemical destabilization 

the collapse of satiety  

This file shows how the food system manufactures craving and calls it “choice.” 

Food Addiction — Ultra Processed Food 

Food Production 

As we discussed in the last video, we’ve been processing our food since we started cooking it. (Really, I’m sure we were smashing/grinding it before that, so I’m not saying cooking was the definitive beginning, but that it was an undeniable catalyst.) 

Cooking, canning, smoking, curing, brining, and dehydrating are all processes we put food through. 

The Industrial Revolution brought forward mechanization and the assembly line. This meant lots of conveyor‑belt foods in boxes that could stay on shelves a long time without spoiling. 

It also birthed agricultural practices that dramatically increased the yield of food production, and the ability to turn a bigger profit for the people with the most tokens already. I truly recommend watching some of the many documentaries out there about the system of our food production. There are a lot to choose from. 

I recommend starting with Food Inc. and Food Inc. 2. They paint a clear picture of how the food system evolved into a corporate machine that prioritizes profit over public health. (Occasionally I’ve stumbled on food documentaries that present very alternate views. I recommend watching them all, and dissecting them for yourself.) 

The Industrial Revolution also birthed the rise of Fast Food, as we continued to specialize, leaving less time for food preparation, and contributing to the loss of cultural food knowledge (knowing how to cook dinner). 

Morgan Spurlock made a pretty big splash when Super Size Me came out, examining in trackable metrics how a month of McDonald’s affects the human body. His sequel, Super Size Me 2, looked at the questionable nutrition of the “health food” in fast food, and the distance between what we’re told and what it really means. 

Now admittedly, Morgan Spurlock died in his fifties. I don’t want to say it’s from eating McDonalds for a month. I AM curious if it’s because he couldn’t stop eating it after that. 

The cause of his demise is irrelevant because the results are replicable. 

So what’s going into those foods we crave? 

The Additive Problem 

Ultra‑processed foods are not just “food.” They are engineered products built from: 

• stabilizers  

• emulsifiers  

• preservatives  

• artificial flavors  

• artificial colors  

• texture modifiers  

• shelf‑life extenders 

These aren’t ingredients — they’re chemicals designed to manipulate the senses. 

And many of them are banned in other countries. 

How Sketchy Chemicals End Up in American Food 

Take Red 3, for example. 

Red 3 is banned in cosmetics because it causes cancer in lab animals. 

But it’s still allowed in food. 

Why? 

Because the FDA’s regulatory structure allows companies to self‑certify ingredients as GRAS — “Generally Recognized As Safe.” That means: 

• companies decide what’s safe  

• companies submit their own safety data  

• companies define the terms  

• the FDA rubber‑stamps it 

This is how chemicals that would never pass independent safety testing end up in cereal, candy, yogurt, and children’s snacks. 

A Journey Through Food Dyes 

Food dyes come from: 

• petroleum  

• coal tar  

• industrial chemical byproducts  

• synthetic compounds designed for brightness, not safety 

They are added because: 

• bright colors increase cravings  

• bright colors increase sales  

• bright colors create “hyperpalatability”  

• bright colors override satiety cues 

Artificial dyes have been linked to: 

• hyperactivity  

• behavioral dysregulation  

• migraines  

• inflammation  

• allergic responses  

• endocrine disruption 

And yet they remain in American food because removing them would cost companies money — and because the FDA allows them to stay. 

Why Safer Versions Exist — Just Not for Us 

The same companies that sell American food full of dyes, additives, and preservatives already produce cleaner versions of the same products for countries that have banned these chemicals. 

They know how to make safer food. 

They just don’t sell it to us. 

Because we are not protected. 

We are marketed to. 

Regulatory Capture and the Illusion of Safety 

The FDA isn’t reviewing the things that hurt us. 

The FDA isn’t reviewing the things that hurt us. 

The FDA takes the food production companies’ word for what’s safe. 

The bottom line from the FDA is that: 

“Food manufacturers are responsible for marketing safe foods.” 

This is not regulation. 

This is abdication. 

And it leaves the public believing that if something is on the shelf, it must be safe — when in reality, the system is designed to protect corporate profit, not human health. 

Why This Matters 

Not everyone is a natural‑born researcher. Our basic public education should be sufficient to teach us how to be safe, and instead of explaining how faulty the system is, it guilts the citizen for making “poor choices.” It conditions the citizen to see the government as benevolent and protective, and blameless. 

Gross. 

You shouldn’t have to be a genius to safely navigate being American. Even people who despise scholarship deserve to be safe as American citizens. 

That’s why I put my deep dives together like this. 

It doesn’t mean I know everything. It doesn’t mean that every word presented here is gospel. I highly encourage you to thoroughly engage in critical thinking over everything I present. Inspect it. Question it. Pull it apart. Interrogate it. Ask who is paying for the information that you’re getting. (I haven’t made a single cent from this blog so far, so I’m definitely not the one with the tokens.) Ask whose agenda it serves. Ask your body how food affects it. Notice what’s being pushed on you, and how often. 

We’re really getting somewhere, and I’m really proud of you for hanging in there with me. 

Let’s Wrap It Up 

Yesterday, we took a very brief look at the coevolution of humans and food. 

Australopithecines — We started out foraging, and spending a lot of time chewing/digesting. 

Cooking — Higher caloric returns, less chewing, more free time. 

Domestication — We shaped our food, and it shaped us. 

Agricultural Revolution — Bigger populations, worse health. 

Specialization — Power differentials and dependency. 

Token Economy — The rise of tokens and the people who hoard them. 

Credit — Debt as control. 

Sugarcane Trade — Addiction as profit. 

Industrial Revolution — Shelf‑stable food and mechanized production. 

Food Apartheid — Food as a weapon. 

Food Desert — Scarcity as constraint. 

Processed Foods — The rise of engineered edibility. 

In Part 3 

We’re going to bust into the specifics of Food Addiction. I can’t wait to tell you all of the secrets that I’ve been building up to! (Tomorrow’s the punchline so you better come back. I’m practically bursting here!) 

Before we go, here are recommended topics to look up: 

• How ultra‑processed foods took over America  

• Food Inc. and Food Inc. 2  

• Super Size Me and Super Size Me 2  

• Food additives  

• Banned additives  

• How chemicals like Red 3 end up in food  

• The history and sourcing of food dyes  

• The effects of artificial food dyes 

Thank you and Bon Appetit! 

Food Addiction Part 3 — Intentional, Calculated, Deliberate 

The Reveal: None of This Was Accidental 

tobacco‑industry playbooks 

bliss‑point engineering 

addiction as a business model 

corporate knowledge of harm  

This file exposes the intentionality behind the system that profits from dependency. 

Food Addiction — Intentional, Calculated, and Deliberate 

We started with a historical look at humans and food. 

We covered how our food is regulated, what’s in it, and where a lot of that stuff comes from. We learned about ultra‑processed food. We learned how the people with the tokens use food to control populations. We talked about food apartheid and food scarcity. 

We learned how little regulation/protection go into our “food safety,” and how our system is actually designed to resist that regulation. 

Now let’s look at the ADDICTION component. 

Engineered Addiction 

Have you ever wondered why it’s so hard to put it down? 

Big Tobacco bought food companies and engineered foods to be addictive. 

(Remember, I promised you a punchline. This was it.) 

Casomorphin and Gluteomorphin 

These are NOT mighty morphine power rangers, but they are mighty morphines, and they come from wheat and dairy. 

They bind to opioid receptors. 

They soothe. 

They calm. 

They reward. 

And they keep you coming back. 

Sugar and Umami 

I really didn’t want to believe it for a long time, but sugar really is a pretty big deal. It just seemed so impossible to give up, so it was hard to accept. 

Sugar lights up the brain like a drug. 

Umami deepens the craving. 

Together, they create a loop. 

Evolutionary Predisposition 

We are wired to seek: 

• sweetness  

• fat  

• salt  

• calorie density 

These were survival signals for millions of years. 

Now they are exploited. 

When Fat and Carbs Combine 

“…even when they’re not that good I keep eating them.” 

That’s not a lack of willpower. 

That’s design. 

Diet and the Brain 

Our diet is closely connected to our brains in a LOT of ways. It’s not JUST brain fog. 

Our brains are not only affected by the nutrients we are lacking, but all of those additives have effects as well, and it’s just under‑researched because it isn’t the story the people with the tokens want to tell. 

So in addition to being addictive, they are highly dysregulating. 

Wonder why there is much more depression, anxiety, ADHD, bipolar, etc.? 

PART of it is absolutely that we actually have the means to diagnose these disorders, and have reduced the stigma. 

Part of it is that being American is making us sick. 

The 80s, Shame, and the Birth of Disordered Eating 

When I was growing up in the 80s, there was a huge focus on low‑fat, low‑calorie diets. I was shamed if I ate the skin of the chicken, being told it would be on my thighs later. I was forced to eat a lot of dry potatoes. My family also felt I should forego the salt because I was so unhealthy, and they didn’t want me to have a heart attack. They were just looking out for my well‑being of course. 

This also meant I overate “approved foods,” like crackers. I never understood a serving size of 6 crackers, and I never felt satiated. I became a compulsive overeater who would sneak food, and felt ashamed any time I ate in front of others. 

I qualified for free lunch, which is incredible, but that also meant that my food choices were being provided by people who classified a slice of cardboard pizza as a fruit. 

By the time we’re old enough to make educated food choices, our bodies and minds are already addicted. 

The Shame Economy 

Susan Powter screamed at me to “Stop the Insanity,” and just stop putting food in my face, and it increased my shame and my food intake. 

I was desperate and everywhere I looked there were offers of an answer to my weight problem — at a cost. 

I blamed myself. I felt like I didn’t deserve help. I was driven by the need to relieve my constant cortisol levels by eating junk food, and it was never enough. It gave me something to look forward to. 

There were days that junk food gave me a reason to live. 

There are days it still does. 

I was desperate for help. I tried to follow the Food Guide Pyramid, which turned out to be just another fad diet in a sea of solutions that didn’t work. 

Any time I stayed up past my bedtime, the self‑help infomercials would tell me I could shed the pounds if I just bought the book, subscribed to the food, ordered the new exercise machine that was finally going to be infused with enough magic to fix me. 

I tried SlimFast. I tried stimulants. I never ate breakfast. I smoked my lunch. I tried just soups. I tried anorexia. I tried bulimia. 

I would live for the modicum of approval that came from going without, restricting myself, and becoming less, while my body became more. 

If self‑hatred was a weight loss spell I’d have been a supermodel. 

The System’s Intentionality 

Here’s the thing — our health and wellbeing were never a matter of consideration for the ones with the most tokens. They don’t exist to help us, to care for us, and our value is only in terms of the tokens we can generate for them. 

It BENEFITS them to keep us addicted and in poor health. 

Then they can sell us both the disease and the cure. 

It behooves them to condition us to think that they’re looking out for us. 

Recommended Deep‑Dive Topics 

If you want to explore the science and history behind this chapter, look up: 

• Doritos for the first time  

• How Big Tobacco intentionally made snacks addictive  

• Dairy addiction  

• Opioid effects of gluten and dairy  

• Sugar addiction and umami  

• “This is Your Brain on Sugar” (TED Talk)  

• Why junk food tastes so good  

• How junk food hacks your brain  

• Why our brains love junk food  

• How the food you eat affects your brain  

• Emotional eating 

Joey’s Quest for Care (Intersex/Klinefelter Case Study) 

A case study in institutional erasure:  

• intersex variation medicalized as defect  

• gendered assumptions shaping care  

• diagnostic delay as structural violence  

• the emotional and physical cost of being miscategorized 

This file shows how identity becomes a site of medical abandonment. 

Hypermobility (Full Explainer) 

A structural explainer of connective‑tissue instability:  

• why hypermobility is invisible to most clinicians  

• why symptoms scatter across specialties  

• why patients are misdiagnosed for years  

• why “benign” is a lie 

This file gives readers the framework clinicians should have had. 

What Are The Odds? (ZF 41) 

A statistical‑structural meditation on improbability:  

• the improbability of multiple rare conditions  

• the system’s refusal to believe coincidence  

• the weaponization of “too rare to be real” 

This file reframes rarity as a system failure, not a patient flaw. 

Hoofbeats and Heartbreak (ZF 41b) 

A companion file to ZF 41:  

• the misuse of “when you hear hoofbeats, think horses”  

• how the heuristic collapses in complex care  

• how patients are punished for being zebras 

This file shows how a teaching tool becomes a diagnostic weapon. 

Assessment (ZF 42) 

A file about the violence of being evaluated:  

• the power imbalance of clinical assessment  

• the performance pressure of being believed  

• the mismatch between lived experience and exam findings 

This file exposes assessment as a site of structural distortion. 

A Disastrous Goodbye — Farewell to Food (ZF 20) 

A file about the collapse of the relationship with food:  

• GI instability  

• mast cell reactivity  

• the grief of losing comfort, culture, and pleasure 

This file shows how chronic illness rewrites the most basic human ritual. 

Prep Is a Four‑Letter Word (ZF 21) 

A file about the violence of preparation:  

• the labor of planning around instability  

• the emotional cost of anticipating collapse  

• the exhaustion of being “ready” for everything 

This file shows how preparation becomes its own form of harm. 

How These Files Function in Part II 

Together, these feature files: 

• expose the mechanisms of slow‑motion violence  

• reveal how systems shape bodies and choices  

• provide primary‑source evidence for the book’s structural claims  

• show the reader what institutional harm looks like from the inside  

• map the lived consequences of policy, profit, and neglect 

They are the connective tissue between the theory and the body — the places where the system’s architecture becomes visible in lived experience. 

Food Addiction Part 1 — How It Started 

A Personal‑Structural Genealogy of Hunger, Scarcity, and Early Conditioning 

Food is supposed to be simple. 

Eat when you’re hungry. 

Stop when you’re full. 

Choose what nourishes you. 

Live your life. 

But for many of us, food was never simple. 

Food was the first place we learned power, scarcity, shame, and survival — long before we had the language to name any of it. 

This file traces how food became a control mechanism in childhood, how the body learned to survive through whatever was available, and how the earliest seeds of engineered dependency were planted long before the corporations arrived. 

Scarcity as a First Language 

For some children, food is comfort. 

For others, food is currency. 

Scarcity teaches lessons that stay in the body: 

• eat fast before it’s gone  

• eat what’s available, not what you want  

• eat past fullness because you don’t know when you’ll eat again  

• hide food to protect yourself  

• ignore hunger cues because they don’t matter  

• override satiety because survival matters more 

Scarcity rewires the nervous system. 

It teaches the body that hunger is dangerous and fullness is temporary. 

This is not a personal flaw. 

It is a survival adaptation. 

Shame as a Behavioral Script 

Scarcity alone is destabilizing. 

Scarcity plus shame is weaponized. 

Shame teaches: 

• your hunger is a problem  

• your body is a problem  

• your appetite is a problem  

• your needs are a problem 

Shame turns food into a moral test: 

• “good” foods  

• “bad” foods  

• “good” eaters  

• “bad” eaters 

Children internalize these scripts long before they understand them. 

Shame doesn’t teach regulation. 

Shame teaches secrecy. 

The Body Learns to Survive Through What’s Available 

When food is unpredictable, the body adapts. 

It learns: 

• to store aggressively  

• to crave calorie‑dense foods  

• to prioritize quick energy  

• to override internal cues  

• to treat scarcity as the baseline 

These adaptations are not psychological. 

They are physiological. 

The body becomes a historian — remembering every period of scarcity and preparing for the next one. 

This is how the groundwork for addiction is laid: not through weakness, but through survival. 

The First Signs of Engineered Dependency 

Before the corporations engineered hyperpalatable foods, the body was already primed for them. 

Early conditioning creates: 

• dysregulated hunger  

• dysregulated satiety  

• dysregulated reward pathways  

• dysregulated stress responses 

So when ultra‑processed foods enter the picture — foods designed to override satiety, hijack dopamine, and collapse regulation — the body is already vulnerable. 

The system didn’t create the vulnerability. 

It exploited it. 

A Real Example From the File 

In Part 1, the story begins with: 

• inconsistent access to food  

• pressure to finish everything on the plate  

• shame around appetite  

• adults policing hunger  

• food used as reward and punishment  

• emotional needs redirected toward eating  

• the body learning to self‑soothe through what was available 

These early experiences weren’t “bad habits.” 

They were structural conditions. 

They shaped: 

• how hunger felt  

• how fullness felt  

• how safety felt  

• how the body responded to stress  

• how the nervous system interpreted scarcity 

By the time corporate food engineering entered the picture, the groundwork was already laid. 

Why This File Matters 

Food Addiction Part 1 establishes: 

• the origin story of food as a control mechanism  

• the early conditioning that shapes lifelong patterns  

• the survival logic behind behaviors later labeled “addiction”  

• the structural nature of vulnerability  

• the continuity between childhood scarcity and adult dysregulation 

It reframes food addiction not as a personal failure, but as a systemic outcome — one that begins long before the first bite of ultra‑processed food. 

The Structural Interpretation 

Food addiction is not about willpower. 

It is about: 

• scarcity  

• shame  

• survival  

• conditioning  

• physiology  

• exploitation 

Part 1 shows how the body learned to survive in an environment that treated hunger as a flaw and food as a tool of control. 

This is where the story begins — not with corporations, but with the earliest lessons the body learned about what it takes to stay alive. 

Food Addiction Part 2 — Ultra‑Processed Food 

How the Modern Food System Manufactures Craving and Calls It “Choice” 

By the time ultra‑processed foods entered the picture, the body was already primed:  

• scarcity had rewritten hunger  

• shame had rewritten appetite  

• survival had rewritten reward 

Part 2 shows what happens when a vulnerable physiology meets an industry designed to exploit it. 

Ultra‑processed food is not an accident. 

It is a technology — engineered, optimized, and refined to override the body’s regulatory systems. 

Hyperpalatability as Design 

Hyperpalatability is not flavor. 

It is engineering. 

UPFs are built to: 

• hit the dopamine system fast  

• collapse satiety signals  

• bypass sensory fatigue  

• maximize “more”  

• keep the body seeking the next bite 

This is not cooking. 

This is algorithmic formulation. 

Food scientists manipulate: 

• sugar–fat ratios  

• salt thresholds  

• emulsifiers  

• stabilizers  

• mouthfeel  

• crunch acoustics  

• melt curves 

Every variable is tuned to create a product that is easier to eat than to stop eating. 

Hyperpalatability is not a side effect. 

It is the business model. 

Regulatory Capture: When Industry Writes the Rules 

The food industry did not just engineer the products. 

It engineered the regulatory environment around them. 

Regulatory capture looks like: 

• industry‑funded research  

• industry‑friendly definitions of “safe”  

• loopholes in labeling  

• GRAS (“generally recognized as safe”) self‑approval  

• lobbying against restrictions  

• political pressure on nutrition guidelines 

The result is a system where: 

• additives are approved without long‑term study  

• UPFs are classified as “food” rather than “products”  

• marketing is unrestricted  

• children are targeted  

• corporate science overrides public health 

The fox didn’t just guard the henhouse. 

The fox wrote the building code. 

Biochemical Destabilization: When Food Becomes a Stressor 

UPFs destabilize the body at every level: 

• blood sugar volatility  

• insulin spikes  

• chronic inflammation  

• gut‑brain disruption  

• microbiome imbalance  

• dopamine dysregulation  

• impaired satiety signaling 

These are not “bad choices.” 

These are predictable physiological responses to engineered products. 

The body is not malfunctioning. 

It is reacting exactly as designed. 

The Collapse of Satiety 

Satiety is supposed to be simple: 

• eat  

• feel full  

• stop 

UPFs break this sequence. 

They collapse satiety by: 

• bypassing stretch receptors  

• overwhelming taste receptors  

• delaying fullness signals  

• creating rapid reward spikes  

• triggering rebound hunger 

This is why people say: 

• “I’m hungry again.”  

• “I don’t feel full.”  

• “I can’t stop eating this.” 

The system calls this “lack of willpower.” 

It is actually biochemical sabotage. 

A Real Example From the File 

In Part 2, the story shifts from childhood conditioning to adult physiology. 

You describe: 

• the foods that were easiest to access  

• the foods that soothed stress fastest  

• the foods that didn’t require cooking  

• the foods that bypassed fullness  

• the foods that felt like relief 

These weren’t random preferences. 

They were engineered outcomes. 

The body wasn’t choosing pleasure. 

It was choosing regulation — the only regulation available. 

The System Calls It “Choice.” 

The Body Knows Better. 

The food industry frames consumption as: 

• personal responsibility  

• lifestyle  

• preference  

• freedom 

But the body experiences UPFs as: 

• compulsion  

• relief  

• survival  

• biochemical necessity 

Choice requires: 

• access  

• information  

• regulation  

• stability 

UPFs remove all four. 

The Structural Interpretation 

Ultra‑processed food is not a dietary issue. 

It is a structural technology designed to: 

• exploit scarcity conditioning  

• exploit stress physiology  

• exploit reward pathways  

• exploit regulatory gaps  

• exploit economic vulnerability 

Part 2 shows how the food system manufactures craving and calls it “choice,” how it destabilizes the body and blames the individual, and how it profits from the very harm it creates. 

Why This File Matters 

Food Addiction Part 2 reveals: 

• the intentional engineering behind UPFs  

• the regulatory failures that enable them  

• the biochemical mechanisms that create dependency  

• the collapse of satiety as a structural outcome  

• the continuity between early vulnerability and adult addiction 

It reframes food addiction as a designed dependency, not a personal flaw. 

Part 3 will show the final piece: 

the intentionality — the deliberate, calculated decisions that made this system inevitable. 

Food Addiction Part 3 — Intentional, Calculated, Deliberate 

The Reveal: None of This Was Accidental 

By the time you reach Part 3, the pattern is undeniable. 

Part 1 showed the early conditioning — scarcity, shame, survival. 

Part 2 showed the engineered products — hyperpalatable, destabilizing, addictive by design. 

Part 3 shows the truth the industry has spent decades obscuring: 

None of this was accidental. 

It was intentional, calculated, and deliberate. 

The Tobacco‑Industry Playbook 

When Big Tobacco realized cigarettes were becoming politically and legally untenable, they didn’t disappear. 

They diversified. 

They bought food companies. 

Not because they cared about nutrition. 

Because they understood addiction. 

Tobacco executives brought with them: 

• expertise in creating compulsive consumption  

• deep knowledge of reward pathways  

• decades of research on craving  

• marketing strategies built on emotional manipulation  

• the ability to normalize harmful products  

• the skill of reframing dependency as “choice” 

They didn’t just enter the food industry. 

They rewrote it. 

Bliss‑Point Engineering: Addiction in a Lab Coat 

The “bliss point” is not a metaphor. 

It is a measurable, engineered threshold where: 

• sugar  

• fat  

• salt  

• texture  

• temperature  

• mouthfeel 

combine to create maximum reward with minimum satiety. 

Food scientists were instructed to: 

• find the exact ratios that override self‑regulation  

• create products that melt quickly to encourage rapid consumption  

• engineer textures that keep the mouth seeking more  

• design flavors that hit dopamine fast and fade quickly  

• ensure no single bite is ever satisfying enough to stop 

This is not cooking. 

This is behavioral engineering. 

The goal was not nourishment. 

The goal was repeat consumption. 

Addiction as a Business Model 

The food industry didn’t stumble into addiction. 

It pursued it. 

Addiction is profitable because: 

• it guarantees repeat customers  

• it increases volume per consumer  

• it reduces price sensitivity  

• it creates lifelong dependency  

• it shifts blame onto the individual  

• it hides corporate intent behind “personal responsibility” 

The industry learned from tobacco that the most profitable customer is the one who cannot stop. 

So they built a system where stopping is nearly impossible. 

Corporate Knowledge of Harm 

The industry knew. 

Internal documents reveal: 

• awareness of metabolic harm  

• awareness of dopamine hijacking  

• awareness of satiety collapse  

• awareness of childhood vulnerability  

• awareness of long‑term health consequences  

• awareness that UPFs were driving obesity and chronic illness 

And still, they: 

• increased sugar concentrations  

• expanded marketing to children  

• lobbied against regulation  

• funded misleading research  

• blamed consumers for “poor choices”  

• framed addiction as lack of willpower 

This is not ignorance. 

This is strategy. 

A Real Example From the File 

In Part 3, you describe the moment the pattern clicked into place — the moment you realized your body wasn’t failing, and your willpower wasn’t broken. 

You were responding exactly as engineered: 

• craving the foods designed to override satiety  

• seeking the products built to soothe stress  

• cycling through hunger spikes created by UPFs  

• experiencing withdrawal‑like symptoms when trying to stop  

• blaming yourself for behaviors the industry designed 

The shame was never yours. 

The dependency was never accidental. 

The System Calls It “Choice.” 

The Evidence Says Otherwise. 

The industry insists: 

• “People choose what they eat.”  

• “We just provide options.”  

• “Moderation is key.” 

But the evidence shows: 

• products engineered for compulsion  

• marketing designed to bypass rational choice  

• regulatory gaps exploited intentionally  

• vulnerable populations targeted  

• addiction reframed as preference 

Choice requires freedom. 

Addiction removes it. 

The Structural Interpretation 

Food addiction is not a personal failure. 

It is a manufactured dependency created by: 

• tobacco‑industry expertise  

• corporate engineering  

• regulatory capture  

• economic incentives  

• intentional exploitation of human physiology 

Part 3 exposes the intentionality behind the system — the decisions made in boardrooms, laboratories, and marketing departments that shaped the modern food landscape. 

Why This File Matters 

Food Addiction Part 3 reveals: 

• the lineage from tobacco to food  

• the deliberate engineering of hyperpalatable products  

• the corporate strategy built on addiction  

• the knowledge of harm hidden from the public  

• the structural nature of dependency 

It completes the trilogy by naming the truth: 

The system didn’t just exploit vulnerability. 

It created it. 

It engineered it. 

It profited from it. 

And it continues to do so today. 

Joey’s Quest for Care (Intersex/Klinefelter Case Study) 

How Identity Becomes a Site of Medical Abandonment 

Some forms of harm are loud. 

Some are surgical. 

Some are diagnostic. 

And some are quiet — delivered through policy, assumption, and omission. 

Intersex people live inside a particular kind of medical violence: 

the violence of being seen too much and understood too little. 

Seen as anomaly. 

Seen as defect. 

Seen as problem.  

But never seen as person. 

This file traces Joey’s story — not as an individual tragedy, but as a structural case study in how institutions erase intersex bodies through miscategorization, gendered assumptions, and diagnostic neglect. 

More Mysteries — Finding Klinefelter’s 

While seeking answers to advocate for myself, I’ve been doing a lot of research. The need to seek out answers and solutions is an immutable component of my character. 

So, it’s no surprise really that I see the puzzles like mine in those I am near. 

Long before I started piecing together my Ehlers‑Danlos puzzle, someone very special to me (let’s call him Joey) was also seeking answers to his equally cryptic puzzle. 

In fact, many of our symptoms overlap, and I’ve found myself often thinking, “Are we sure he doesn’t have EDS too?” 

He’s not hypermobile, which has been the cornerstone of me getting care, so I had to keep looking. 

He’s been to SO MANY doctors. He started seeking medical help with his overall state of being in 2019, before COVID‑19 halted everything. 

He’s had endoscopies, colonoscopies, been referred to endocrinologists, allergists, a sleep clinic, pulmonologist, bariatric, urology and I’m probably honestly missing some. 

Starting the Search 

In 2021, he was overheating all of the time. He was overheating when it was 50 degrees out, and stepping out into ‑17 degree temps without a shirt, wearing shorts to try to cool off. He was miserable in the summer. 

Once again, Dr. Facebook was our first real help. 

I was reading accounts on my timeline of trans women feeling colder from taking estrogen, and trans men feeling hotter on testosterone, so he requested his GP (we shall call him Dr. Hardon) test his estrogen. 

Dr. Hardon explained how testosterone‑estrogen conversion occurs, and he ordered a testosterone lab. 

Labs 

Joey’s testosterone (T) levels were low. They were so low they were nearly nonexistent. 

I now know that Joey’s testosterone levels, paired with his hypogonadism, should have immediately triggered a screening for Klinefelter’s syndrome. Despite screening criteria being clear in the research about KS, no such practice exists. 

KS went without mention, and he was referred to his first Endocrinologist, Dr. Bridenstine with Banner Health here in Northern Colorado. (He now works for UC Health in Longmont and I’m using his real name because anyone seeking help needs to be warned.) 

Endocrinology 

Dr. Bridenstine, despite seeing the very low T levels, despite the presence of hypogonadism, which he verified himself, told Joey that he should stop listening to radio commercials hoping for a bigger boner, and tried to talk Joey out of trying T therapy. 

During this appointment, Joey was wholeheartedly dismissed, and had to beg for help. 

Dr. Bridenstine should have ordered a karyotype test that same day. He did not. He didn’t mention it at all. 

He referred Joey to a urologist, because in addition to overheating all of the time, Joey also has to use the bathroom upwards of 20 times a day. He also ordered an ultrasound of Joey’s testicles, to make sure they exist, because they could not be located during the exam. 

He started Joey on weekly injectable T, and strongly urged Joey to be screened for Sleep Apnea which can interfere with treatment. 

Joey started the T and was able to raise his testosterone to the low normal range! Joey also became polycythemic, and had to stop testosterone therapy. 

Urology 

Joey had the ultrasound, where they couldn’t find blood flow to his testes, and went to the urologist, Dr. Wolach also with Banner Health (also his real name). 

During this visit, Dr. Wolach told Joey that the structural anomaly was the result of development, and that had it been caught in his teens they may have had some options, but that absolutely nothing can be done structurally now. Dr. Wolach told Joey he had retractile testes. 

He blamed the frequent urination on soda consumption (Joey quit drinking soda 3 months ago, and still pees all day). 

He said this was just how Joey developed, and discouraged him from seeking further answers. 

According to the internet, retractile or undescended testicles can be treated surgically. 

Cambridge University says: 

“A small incision is made in the groin to free the muscle retracting the testis so that it can be brought down into the scrotum. A second incision is then made in the scrotum to receive the testis where it is anchored to prevent twisting and further retraction.” 

For some reason, Dr. Wolach decided to close that door and dismiss Joey instead. I just want to point out that this is an awful lot of humiliating poking and prodding just to hit a brick wall. 

Sleep Apnea 

Joey continued to advocate for himself. He was diagnosed with obstructive sleep apnea, and started using a CPAP. 

Trudging Forward 

This enabled him to restart T, but this time in the form of the gel. 

Despite therapy for a variety of symptoms, many of the symptoms were getting worse. 

Trying to Access Care 

When Joey first approached his GP with his list of symptoms, Dr. Hardon said he could only address one thing at a time, and that Joey would need to make repeated trips to address the rest. He’s been going about monthly for 3 years now. 

Dr. Hardon refused to look at the list as a combined presentation. He looked at one symptom at a time, and would test/prescribe/refer for each symptom, citing the 15‑minute visit limitation as the barrier to holistic care. 

I have felt very deeply from the beginning, that each of these symptoms are only part of a larger syndrome or disorder. Dr. Hardon wasn’t going to look for it, and endocrinology and urology refused as well. 

If Joey hadn’t had Medicaid, I have no idea how he would have been able to continue after so many practitioners have utterly refused to see this. 

I dug deeper. I searched and searched for a combined answer. 

Klinefelter’s Syndrome 

I had learned about Klinefelter’s syndrome in college, but only in passing. When taking biology they taught that there were two sexes, male and female… except that there’s this long list of natural variations that do not fit into that binary, and that binary is much more like a spectrum. The second half of that statement was presented more like a whisper. 

When I started digging into the information about Klinefelter’s it was like being hit with a brick. Klinefelter’s syndrome affects absolutely everything, and none of the doctors were looking at everything. 

Most of the information I found was from overseas. Study after study said the same things. This is fairly common (1 in 600) but very rarely diagnosed (25%). In children it is found when the symptoms are severe. In adults it is found when men seek fertility treatment (which is quite expensive). This leaves some very obvious gaps. 

According to the National Health Service (UK) Klinefelter’s features include: 

in babies and toddlers – weak muscles and very flexible (hypermobile) joints, learning to sit up, crawl, walk and talk later than usual, being quieter and more passive than usual, having undescended testicles, only one testicle, or a smaller penis 

in childhood – shyness and low self‑confidence, problems with reading, writing, spelling and paying attention, mild dyslexia or dyspraxia, low energy levels, and difficulty socialising or expressing feelings 

in teenagers – growing taller than expected for the family (with long arms and legs), broad hips, poor muscle tone and slower than usual muscle growth, reduced facial and body hair that starts growing later than usual, small, firm testes, and enlarged breasts (gynaecomastia) 

in adulthood – infertility, low sex drive, small, firm testes, erection problems 

Additionally, men with Klinefelter’s may experience: 

type 2 diabetes 

osteoporosis 

cardiovascular disease 

autoimmune disorders 

hypothyroidism 

anxiety, learning difficulties, depression 

male breast cancer (rare) 

According to the Mayo Clinic, signs and symptoms may include: 

taller than average stature 

longer legs, shorter torso, broader hips 

absent or incomplete puberty 

less muscle, less facial/body hair 

small, firm testicles 

small penis 

gynecomastia 

weak bones 

low energy 

shyness, sensitivity 

difficulty expressing thoughts 

learning challenges  

MedlinePlus provides even further detail, including mental traits and fifth‑finger clinodactyly. 

Now, to be fair, Joey doesn’t exhibit every single trait, but he exhibits many of them, and for several of the ones that “don’t fit” he is the exact opposite of the expectation. 

For example, instead of having no body/facial hair, he went bald at 17. Instead of flat feet, he has extreme arches. 

He doesn’t appear tall, but towers over both of his parents. 

When I started to review these lists I had that same whirlwind feeling that I had when I found Ehlers‑Danlos. I presented it to him, and it clicked deeply for him as well. 

Testing?? 

Great. Now we had to figure out how to get him tested. Dr. Hardon clearly doesn’t see it. Dr. Bridenstine should have seen it. I’m almost certain that Dr. Wolach knew exactly what this was, and willfully refused to have that conversation with Joey. 

Refusal to Help 

Joey went back to Banner Endocrinology and Dr. Bridenstine had moved on. He was seen by Dr. Odeki who told Joey that he could tell just by looking at him that he doesn’t have Klinefelter’s Syndrome, and he refused to order the karyotype test. 

Dr. Hardon had shown himself to be willing and receptive to helping, but not very willing to see the bigger picture. Nevertheless he was sympathetic to Joey’s account of trying to get anywhere with endocrinology, and he ordered the karyotype test. 

Several weeks passed before getting the result. 

Several weeks in which researching felt like jumping the gun. Several weeks in which I became totally prepared to have to start over from scratch after finding another dead end. 

When the test came back, it confirmed Klinefelter’s Syndrome. 

We somehow thought that figuring out what was causing it would cause some level of increased or redirected care. Not so. 

Despite the fact that Klinefelter’s affects Joey’s mental state, testosterone, and almost every system in his body, Dr. Hardon told him not to get hung up on the Klinefelter’s, claiming that it only affects his T level, and doesn’t really matter. 

WHAT?!? 

He still refused to see the big picture. Instead of joining Joey in understanding the role an extra X chromosome has played in his bodily experience, Dr. Hardon dismissed the request as some machismatic gender dysphoria and just said “Look, you’re still a man.” 

That wasn’t the question or request, but he certainly revealed his priorities in the conversation. I’m very grateful to Dr. Hardon, and still recognize that this is the border of his utility as part of Joey’s care team. 

He referred Joey for genetic counseling — to the only geneticist in the state that handles such cases — the same geneticist I was referred to with the 12–18‑month waiting list just to be able to make the appointment. 

Joey called DAILY for a while, and I’m happy to announce that he has an appointment in June. 

That’s more than 7 months from the time of diagnosis. 7+ months of just waiting to know anything of use. 7+ months without coordinated care, which is repeatedly called for in the sparse literature available about KS. 

The myriad of symptoms don’t let up just because it’s not urgent to anybody else. That reality is incredibly taxing, both mentally and physically, for a person who is already in need of help. 

Somehow this is how the system really works. 

Changing Care 

Joey pushed to be moved from Banner Endocrinology to UC Health Endocrinology (I will compare Banner and UC Health more in another post). 

Dysautonomia 

I dug into the research deep, learning all I can about the complex of symptoms I see in Joey, and that he reports to me. We discovered that he is likely Dysautonomic. 

The UC Health endocrinologist was wonderful despite our nerves being wracked by the PTSD of so much medical dismissal. 

Dr. Katwal reviewed the information that we had prepared, and was very willing to see the big picture. She is also willing to be a part of the team that will use a multidisciplinary approach — because she can’t work outside of her specialty. 

Further Care 

We now have neurology referrals for the essential tremor that continues to worsen, along with the dysautonomia. 

We’re still trying to figure out how to get in to see anyone who can do mental assessments. 

And so, clearly, I’ve become his care coordinator, because nobody else will despite him literally begging for help. I also had to be the diagnostician in both of our cases. 

This is not health care. 

There is so much wrong with this, that I’m going to have to branch out into other posts to cover it all. 

Welcome to another journey of the chronically misdiagnosed and underdiagnosed. 

Stay tuned for more information about Klinefelter’s Syndrome and Joey’s Journey to Care. Thanks for being in this with us. 

Intersex Variation Medicalized as Defect 

How the System Turns Human Diversity Into Pathology 

Klinefelter Syndrome (XXY) is an intersex variation. 

But medicine rarely treats it that way. 

Instead, it is framed as: 

chromosomal error 

developmental mistake 

hormonal failure 

feminization of a “male” body 

masculinization of a “female” body 

something to correct, normalize, or hide  

The language of defect shapes everything that follows: 

how clinicians speak 

what they test 

what they ignore 

what they assume 

what they pathologize  

Joey entered the system not as a patient, but as a deviation. 

And deviations are not cared for. 

They are managed. 

ntersex Variations — Understanding the Middle of the Spectrum 

Why Accurate Information Is So Hard to Find 

It is ridiculously difficult to find accurate, comprehensive information about intersex populations, much less intersex experiences. Most resources gloss over the many types of intersex genetic expressions and offer as little information as possible. 

The following is the result of research using accessible and credible sources. 

Before We Get Started 

Reframing the Language of Variation 

Bias is written into science despite our “best efforts” at objectivity. 

Much research about intersex people ignores the humanity and lived existence of these populations. 

To counter that, we reframe: 

• Replace error or mistake with event  

• Replace failure with variation  

• Replace disease with syndrome  

• Replace normal with most common 

We are talking about where traits fall on a bell curve of human variation — not about correctness or defect. 

How Variation Happens 

Cell Division, Meiosis, and the Origins of Chromosomal Diversity 

There are two types of cell division: 

• Mitosis — most cells  

• Meiosis — germ line cells (egg and sperm) 

Meiosis is highly variable. This variability is the engine of genetic diversity. If meiosis worked one exact way all the time, human variation would collapse — which carries its own dangers. 

Variations During Meiosis 

If variation occurs during Meiosis I: 

Two gametes may receive double information. 

If variation occurs during Meiosis II: 

One gamete may receive double chromatids, two may receive the expected number, and one may receive none. 

If the gamete is still viable and fertilization occurs, the resulting zygote may carry an atypical chromosomal pattern. 

Variations After Fertilization 

Variation can also occur during early mitotic divisions. 

This creates mosaicism, where some cells carry 46XY and others carry a variant. 

Examples of Intersex Chromosomal Variations 

Turner Syndrome (45,X) 

A range of chromosomal combinations fall under Turner Syndrome, including mosaic forms. 

These arise from nondisjunction events during meiosis or early mitosis. 

Klinefelter Syndrome (47,XXY) 

Common but rarely diagnosed. 

Typical features may include: 

tall stature 

reduced facial/body hair 

gynecomastia 

osteoporosis 

hypogonadism 

low testosterone 

infertility 

a wide range of expressions  

Diagnosis is often missed until adulthood, especially when individuals seek fertility treatment. 

Trisomy X (47,XXX) 

A variation affecting people with three X chromosomes. 

Often underdiagnosed due to subtle or variable presentation. 

47,XYY 

Another variation often overlooked without genetic testing. 

May include tall stature, learning differences, or no noticeable traits at all. 

48,XXXY 

Very similar to Klinefelter’s, with additional characteristics: 

specific fusing of lower arm bones 

hypermobility 

developmental differences  

48,XXYY 

Similar to 47,XXY and 48,XXXY, with: 

delayed dentition 

dental misalignment 

developmental delays 

cognitive impairments 

multisystem involvement  

49,XXXXY 

Similar to other X‑polysomy variations, with: 

speech challenges due to oral structure 

flat nasal bridge 

more pronounced developmental differences  

49,XXXYY 

An exacerbated form of Klinefelter‑type symptoms: 

greater cognitive impacts 

more dysautonomia 

more extensive multisystem involvement  

49,XXXXX 

A rare variation involving five X chromosomes. 

Often includes significant developmental and physical differences. 

Fragile X 

Fragile X can occur alongside other variations. 

The more X chromosomes present, the more opportunities for Fragile X to appear. 

Why This Matters 

Variation Is Normal. Erasure Is Not. 

It is my sincerest hope that this helps lead to greater understanding and the normalization of variation. 

Some of my very favorite people are intersex. 

They exist. 

They deserve validation, love, care, and belonging. 

The social — and medical — erasure of intersex people is damaging, traumatizing, and keeps these beautiful souls from the quality of life they deserve. 

Suggested Topics for Further Study 

If you want to explore more deeply, look up: 

• binary misunderstanding of bimodal distribution  

• cell division and meiosis  

• nondisjunction  

• fertilization and zygote development  

• mosaic aneuploidy  

• error rates in early mitotic division  

• Turner Syndrome  

• Klinefelter Syndrome  

• Trisomy X  

• 47,XYY  

• 48,XXXY  

• 48,XXYY  

• 49,XXXXY  

• 49,XXXYY  

• 49,XXXXX  

• Fragile X  

• sex as a spectrum 

Gendered Assumptions Shaping Care 

Intersex patients are forced into gendered templates that do not fit their bodies. 

For Joey, this meant: 

• symptoms interpreted through a “male” lens  

• hormonal patterns dismissed as “atypical but not concerning”  

• pain minimized because “men don’t usually report this”  

• emotional distress reframed as psychological rather than physiological  

• body changes treated as cosmetic rather than medical  

• fertility concerns ignored or mishandled 

Gendered assumptions are not neutral. 

They are diagnostic filters. 

They determine: 

• which tests are ordered  

• which referrals are made  

• which symptoms are believed  

• which symptoms are dismissed 

Joey’s body was not confusing. 

The system’s categories were. 

Diagnostic Delay as Structural Violence 

Joey’s diagnostic journey was not delayed because the condition is rare. 

It was delayed because the system is rigid. 

Diagnostic delay looked like: 

• years of unexplained symptoms  

• puberty that didn’t follow expected patterns  

• clinicians who noticed but didn’t investigate  

• referrals that never materialized  

• labs interpreted through the wrong gendered baseline  

• specialists who said “this is outside my scope”  

• the burden of proof placed on the patient 

Delay is not passive. 

Delay is harm. 

Every year without diagnosis meant: 

• worsening symptoms  

• untreated hormonal imbalance  

• emotional distress  

• social isolation  

• medical mistrust  

• preventable suffering 

This is structural violence in slow motion. 

The Emotional and Physical Cost of Being Miscategorized 

Being miscategorized is not a clerical error. 

It is a lived experience. 

For Joey, miscategorization meant: 

• feeling “wrong” without knowing why  

• being told the body was the problem  

• internalizing shame that was never his  

• navigating puberty without a map  

• carrying symptoms that no one connected  

• being blamed for not fitting the template  

• losing years of potential treatment 

The cost was not just physical. 

It was existential. 

Intersex people are often forced to live in bodies the system refuses to acknowledge — bodies that do not fit the binary, and therefore do not fit the care pathways built around it. 

A Real Example From the File 

In this feature file, Joey describes: 

• the confusion of early symptoms  

• the dismissal from clinicians  

• the lack of clear answers  

• the emotional toll of not knowing  

• the relief and grief of finally being diagnosed  

• the anger at how long it took  

• the realization that the system had failed him, not the other way around 

His story is not unusual. 

It is typical — which is the problem. 

Identity as a Site of Medical Abandonment 

Intersex patients are abandoned not because clinicians are cruel, but because the system is built on: 

• binary categories  

• standardized pathways  

• rigid expectations  

• narrow definitions of “normal”  

• discomfort with ambiguity  

• institutional avoidance of complexity 

Identity becomes a site of abandonment when the system cannot accommodate bodies that fall outside its design. 

Joey’s story shows how that abandonment unfolds: 

• quietly  

• bureaucratically  

• predictably 

The Structural Interpretation 

This case study reveals: 

• how intersex variation is pathologized instead of understood  

• how gendered assumptions distort diagnosis  

• how diagnostic delay becomes structural violence  

• how miscategorization shapes a lifetime of care  

• how institutions erase bodies that do not fit their templates 

Joey’s Quest for Care is not a story about one patient. 

It is a story about a system that cannot see intersex people as real. 

Why This File Matters 

This feature file shows: 

• the lived consequences of institutional erasure  

• the emotional and physical cost of being miscategorized  

• the structural roots of intersex medical harm  

• the continuity between identity and abandonment  

• the necessity of documenting these stories as resistance 

Joey’s story is not an exception. 

It is evidence. 

And evidence is what Part II exists to reveal. 

Hypermobility (Full Explainer) 

Why Connective‑Tissue Instability Is Invisible, Misunderstood, and Systemically Erased 

Hypermobility is one of the most common, most disabling, and most misunderstood conditions in medicine. 

Not because it is rare. 

Not because it is subtle. 

But because the system is built to not recognize it. 

This file gives readers the connective‑tissue framework clinicians should have had — the map that explains why symptoms scatter, why diagnoses take years, and why “benign” is a lie. 

What Is Hypermobility? 

According to the NHS: 

“Joint hypermobility means that some or all of a person’s joints have an unusually large range of movement. People with hypermobility are particularly supple and able to move their limbs into positions others find impossible.” 

Although some hypermobility is benign, or even beneficial, when it presents with a mixture of the following symptoms, hypermobility syndrome emerges. 

People with hypermobility syndrome may experience: 

• pain and stiffness in the joints and muscles  

• clicking joints  

• joints that dislocate easily  

• fatigue  

• recurrent injuries  

• digestive problems (constipation, IBS)  

• dizziness and fainting  

• thin or stretchy skin 

What Causes Hypermobility? 

According to Hypermobility.org, there are four potential causes: 

1. Specific heritable disorders of connective tissue (EDS, Marfan, Stickler, OI, etc.)  

2. Joint shape, looser ligaments, or poor muscle tone  

3. Other conditions (Down syndrome, Cerebral Palsy, etc.)  

4. Injury or repeated stretching/training (yoga, gymnastics) 

Why Hypermobility Is Invisible to Most Clinicians 

Clinicians are trained to look for: 

• swelling  

• redness  

• heat  

• deformity  

• fracture  

• rupture 

Hypermobility rarely presents with any of these. 

Instead, it presents with: 

• instability  

• micro‑injury  

• proprioceptive dysfunction  

• autonomic chaos  

• pain without visible inflammation  

• symptoms that change with position, time, and load 

The system is built to detect damage, not dysfunction. 

Hypermobility is dysfunction — structural, systemic, and often invisible. 

The Connective‑Tissue Problem 

Connective tissue is everywhere: 

• joints  

• ligaments  

• tendons  

• fascia  

• blood vessels  

• GI tract  

• bladder  

• skin  

• autonomic pathways 

When connective tissue is unstable, everything destabilizes. 

But because each system collapses differently, clinicians see: 

• GI symptoms  

• bladder symptoms  

• cardiac symptoms  

• neurological symptoms  

• musculoskeletal symptoms  

• immune symptoms 

They see fragments. 

They never see the whole. 

Why Symptoms Scatter Across Specialties 

Hypermobility is not a joint problem. 

It is a system problem. 

Instability affects: 

• digestion (motility, reflux, IBS)  

• circulation (POTS, dizziness, fainting)  

• bladder function (urgency, retention)  

• pain pathways (neuropathic pain, allodynia)  

• proprioception (clumsiness, falls)  

• immune response (MCAS‑like reactivity)  

• fatigue (energy leaks through instability) 

Each specialty sees one slice: 

• GI sees IBS  

• cardiology sees tachycardia  

• neurology sees migraines  

• rheumatology sees “nothing inflammatory”  

• orthopedics sees “normal imaging”  

• psychiatry sees “somatic symptoms” 

The system treats each symptom as separate. 

The body experiences them as one. 

Why Patients Are Misdiagnosed for Years 

Hypermobility patients are misdiagnosed because: 

• symptoms fluctuate  

• imaging is normal  

• labs are normal  

• pain is positional  

• instability reduces before exams  

• flares are unpredictable  

• symptoms migrate  

• no single test captures the condition 

So clinicians reach for diagnoses they do understand: 

• anxiety  

• depression  

• somatic symptom disorder  

• fibromyalgia  

• IBS  

• chronic fatigue  

• “growing pains”  

• “deconditioning” 

Misdiagnosis is not a mistake. 

It is a structural outcome of a system that cannot see connective‑tissue disorders. 

Why “Benign” Is a Lie 

For decades, hypermobility was labeled “benign.” 

This was not based on evidence. 

It was based on: 

• lack of training  

• lack of research  

• lack of diagnostic tools  

• lack of institutional interest 

“Benign” ignores: 

• chronic pain  

• joint instability  

• early degeneration  

• GI dysfunction  

• autonomic dysregulation  

• sensory overload  

• fatigue  

• injury cycles  

• disability 

There is nothing benign about a body that cannot rely on its own structure. 

Hypermobility and Me 

This blog explores my experiences with hypermobility, as it has started to have life‑altering effects in my world. 

I have always been hypermobile, and it has always complicated my life. I had a hypermobile mother. I have hypermobile kids. This is definitely not from training as a gymnast. 

My Joints 

I’ve never been able to slouch in chairs without throwing my back out. My ankles have consistently given out on me since I was seven. 

My knees, back, and neck joined in by the time I was ten. I’ve never been able to use my hands unless I pop them into place. 

I have always swayed while standing — an autistic stim that also regulates pain. 

I could never run the mile in gym class, but gym teachers were shocked every year when they took the flexibility measurement. 

I bent my foot in half, touching my pinky toe to my heel. Nothing broke. 

X‑rays from age seven onward showed arthrosis — a common effect of hypermobile joints. 

Static stretching is dangerous for me. Dynamic exploration is essential. 

Other Factors Influencing My Joints 

In addition to loose connective tissue, I have: 

• lived with obesity up to 350 lbs  

• had four pregnancies  

• spent years homeless  

• worked decades in service industries  

• spent years seated in classrooms 

I’ve not been kind to these ligaments and tendons, never knowing what it would lead to. 

Impingement 

Now I’m experiencing impingement‑related symptoms: 

• carpal tunnel  

• sciatica  

• shoulder impingement 

These cause: 

• tingling  

• numbness  

• loss of sensation  

• loss of control 

Shoulder and Wrist 

Loss of grip, misdirected movement, difficulty with basic tasks. 

Sensation returns when I drop my arm — sometimes seconds, sometimes minutes. 

Legs 

Sometimes I lose control of my legs. Steps don’t land where I intend. Sometimes I move backward when I meant to move forward. 

My legs feel like stilts — stiff devices I land on rather than appendages I control. 

I wear ankle braces every time I put on shoes. Barefoot shoes only. 

I have to pop my knees in before walking — every time I stand up. 

Sometimes I drag a leg because it’s out of socket. 

My hips are out of socket a lot these days. 

Back 

Electrical zaps and zings radiate in multiple directions. 

Extreme back pain. 

Sitting for 8 hours sets off electrical storms, clicking, grinding, and sometimes my back gets stuck. 

Why Am I Hypermobile? 

We highly suspect Ehlers‑Danlos Syndrome — a genetic condition affecting collagen production. 

The hypermobility form of EDS is diagnosed with the Beighton Scale (0–9). My eldest and I each score a 7. 

Collagen’s Role in the Body 

Collagen is a building block of most body tissues. 

It: 

• supports skin structure  

• forms fibroblasts  

• replaces dead skin cells  

• protects organs  

• provides elasticity  

• helps blood clot 

Corneal collagen maintains transparency and shape. 

In the brain, collagen may protect against Alzheimer’s and can be used in repair. 

In the digestive system, abnormal collagen may impair motility and increase nerve sensitivity. 

In the vascular system, abnormal collagen contributes to fragility, bleeding, and bruising. 

80% of people with EDS also have POTS. 

The list is extensive, and I’m learning more every day. 

Getting to the Point 

I have hypermobility syndrome, and the symptoms are taking over my life. 

The path to getting help is rarely straightforward, complicated by insurance, and never‑ending. 

I highly suspect Ehlers‑Danlos Syndrome, and it will be a long time before that can be confirmed. My body is deteriorating now, and I cannot outrun my pain. 

EDS occurs in 1 in 5000. Its rarity makes it harder to get help. EDS isn’t considered a disability, even though I’m struggling to work and do basic daily tasks. 

I know I’m not alone; it just feels alone. 

My hope is that in my transparency other Zebras may be seen, and that together our hoofbeats can be heard for what they are. 

The Structural Interpretation 

Hypermobility is not invisible. 

It is unrecognized. 

Not because the symptoms are subtle, but because the system is not built to interpret them. 

This file gives readers the literacy the system lacks — the map that should have existed from the beginning. 

ZF 41 — What Are The Odds? 

A Statistical‑Structural Meditation on Improbability 

Rarity is supposed to be a neutral descriptor. 

In practice, it becomes a weapon. 

When a patient presents with multiple rare conditions, the system treats the body as suspect, not the training as insufficient. 

Probability becomes a shield clinicians hide behind, a way to avoid complexity, time, and responsibility. 

ZF 41 is the counter‑document — the lived record of what improbability feels like from inside the body the system refuses to believe. 

Below is the poem in full. 

It stands as the primary artifact of this file. 

What Are The Odds? 

by Protyus A. Gendher 

Let’s talk about something upbeat right? 

You have a 1 in 3 chance of having cancer in this life.  

Out of 334 million American lives 

111 million will fight this fight. 

Your chance of being diabetic is more like 1 in 9 

We have a 10% chance of losing our minds 

To Alzheimer’s if we make it past our primes  

So, it’s no wonder that doctors are trained 

To focus on the obvious. This isn’t about blame.  

According to the research that exists 

The chances of being born with EDS 

1 in 5000 

A needle in a haystack 

Of horsey hoofbeats making their paycheck. 

So why would anyone take the time 

To find 

A zebra in a horse-stack? 

We see what we want in the Rorschach.  

Medical tests interpreted like constellations 

Everything is just a sprain, or constipation 

They tell us “Just breathe” 

“Take some Aleve” 

“Get back to work” 

“You don’t deserve” 

Relief 

From what we feel that they can’t see 

Must be drug seeking 

So many things, 

Socially 

Mentally 

Medically speaking 

Preventing the seeking 

The research, the reasoning  

If you’re not a horse, then they can’t help 

In the 15 minutes they spend peeking in our hell 

Hey—it’s all insurance will pay for 

So, it’s all they sell  

What are the odds of being diagnosed 

If you’re not a horse? 

You’re not even close? 

What are the odds of being seen 

When your joints are falling apart at the seams? 

In a world that demands 40+ hours per week 

No time to slow down, rest or sleep. 

Get back on your feet 

If we’re 1 in 5000 then in this country alone 

That makes 66,800 people on their own 

This kind of pain 

Is socially isolating 

Personality penetrating 

And it makes resources harder to acquire 

And it makes everything hard when your body’s on fire 

So few spoons, and everybody taking. 

Having to be more while breaking.  

So, what are the odds of being treated or diagnosed? 

The American Healthcare system is broke, 

Needs woke, 

Because we can’t do this on our own. 

In order to be tested and diagnosed 

I’m on a waitlist that was 18-months long 

To have my genetics assessed 

By the ONLY person in the state that can do this  

Until then, I still can’t work 

I’m still in tears trying to manage the hurt 

I’m applying for disability 

Because my body refuses to give me 

Any relief  

Jumping through hoops on shoddy knees 

And my initial diagnosis is still 6 months away? 

This isn’t a fucking game!  

What are the odds I keep housing through that? 

Bending over backwards every month is quite an act. 

What are the odds that their odds are right? 

What does 1 in 5000 mean when they’re willing 

To let us die while they keep billing?  

Taylor Swift pulls in 72,000 fans 

All filling the stands 

In stadium after stadium 

In any given Swifty crowd there would be 14 of us 

If we could leave the house  

During the course of the Colorado State Fair 

About a half million people are there 

Representing about 100 of us who need and can’t get care  

How many of us do there need to be 

Before our wealthcare system chooses to see? 

And what do these numbers even mean?  

They say 1 in 5000 

But who are they testing? 

Because it sure as fuck isn’t me 

At the age of 43.  

The people they test 

Are the people with access 

Imagine what the number might be if they screened and tested the rest.  

Choosing not to see me 

Doesn’t stop me from being  

What are the odds of dying before being seen 

In a system that screens against me 

That would rather us fall through the cracks 

So their answers line up in neat little stacks?  

And I would have continued to think 

That my pain was just a me thing 

That my sprains were a repeat thing 

That my brain should be retreating 

Because there’s never anything wrong 

So, “stop bugging us and go home”  

I would have continued to suffer alone 

If not for the Facebook algorithm 

Putting our hoofbeats into a rhythm  

This social sorter 

Grouping like minds for support 

When I feel seen I tap like and share 

And discovered I wasn’t the only one out here. 

Structural Notes  

ZF 41 sits in Part II because it exposes the statistical logic the system hides behind. 

The poem itself is the argument: that rarity is not a biological truth but a measurement of who gets seen, who gets tested, and who gets believed. 

The file stands as evidence that improbability is not the barrier — the system’s refusal to engage with it is. 

Heartbreak and Hoofbeats 

The Poem 

Professionals are trained to unsee me 

Even when they’re looking for things unseen 

They can’t or won’t or don’t look deep 

Even when I spread it all out before their eyes 

Tying pieces together like an episode of CSI 

Flimsy red string connecting the bits of the puzzle 

But they listen like I’m muzzled 

All because of hoof beats 

An antiquated teaching 

About assuming the easy thing 

“When you hear hoof beats think horses not zebras” 

Putting a distance between us 

And the care we need 

To survive in these bodies 

Think horses not Zebras 

The imperative 

But Zebras exist 

Zebras are really really real 

And feeling like shit 

While being told that there’s nothing wrong with all of 

it. 

Send them back to class, 

It’s probably just a sprain 

But that ankle’s never gonna be the same 

How LAME. 

Why can’t you ever keep up on a hike? 

Why does it hurt every time I run or bike? 

Joints that feel like they MUST be broken 

But the X-rays look good every time we go in 

And please don’t come back again 

These resources are here for the horses 

And they call me a lying waste of time 

Suck it up 

Buttercup 

Nobody cares if you want to give up 

FUCK 

I’m a person, I’m here, and I’m falling apart 

Can’t work, or self-care, much less make art 

Zebras exist in a world demanding rent 

Where all the spoons stay spent 

They say our suffering makes us stronger 

How much longer 

Will they monger our pain 

And insurance plays blame games 

Creating barriers when answers finally come 

With another hoop to jump through, and another one, and another one. 

We are not that rare, we are underdiagnosed 

Because even when we appear right in front of their 

oses 

They oppose us 

Dispose of us 

Another one bites the dust. 

This should disgust you. 

Zebras exist, and so do donkeys 

So do mules, so do ponies 

And they refuse to see all these 

Difficult diagnoses 

Get out of my office, and on to the next one please 

Solving 15-minute problems only 

Somebody hold me 

So now I live in a body of electric meat sauce 

I wish it would help to complain to my boss 

Because my joints are held together by fruit stripe gum 

But tendons don’t really show up on X-rays unless they’re filled with calcium 

At any point insurance can just say no, 

We don’t care if you need it, you can’t go, 

And ask for preauthorization 

Before allowing the MRI or the nerve ablation 

Some days taking my first waking breath 

Makes me wish for death, 

As the pain of existing hits me again 

My oldest friend, will be with me until the end 

In a system designed to erase us 

Dispose and delete us 

They have nothing to gain by helping me 

My pain is no cash cow 

I’m more like, just a burden now 

Not worth the cost of me being seen 

And so many others like me 

Just trying to stay in this, 

Continuing to breathe. 

Overlooking us happens on purpose 

It’s no accident that they hurt us 

By treating us like we’re worthless 

My pain doesn’t show on the surface  

Heartbreak and Hoofbeats 

The Structural Interpretation 

The poem captures the central violence of hypermobility care: 

a system trained to dismiss what it cannot measure. 

Clinicians are taught a heuristic — 

“When you hear hoofbeats, think horses, not zebras.” 

— and then trained to apply it as law, not guidance. 

The result is predictable: 

• rare conditions are erased  

• complex conditions are mislabeled  

• fluctuating symptoms are disbelieved  

• invisible pain is treated as exaggeration  

• connective‑tissue disorders are treated as personality traits 

Hypermobility patients are not rare. 

They are underdiagnosed. 

Not because the symptoms are subtle, 

but because the system is built to interpret: 

• swelling  

• redness  

• heat  

• deformity  

• rupture  

• fracture 

Hypermobility presents with: 

• instability  

• micro‑injury  

• proprioceptive dysfunction  

• autonomic dysregulation  

• pain without inflammation  

• symptoms that change with load, time, and position 

The system is built for bones, not tissue. 

It sees: 

• normal X‑rays  

• normal labs  

• normal imaging 

And concludes: 

• nothing is wrong  

• nothing to treat  

• nothing to investigate 

The poem exposes the lived reality of this mismatch: 

• joints slipping silently  

• pain that migrates  

• injuries that don’t show up on imaging  

• fatigue that collapses entire days  

• dizziness that appears only when upright  

• symptoms that vanish before the exam  

• clinicians who insist “everything looks fine” 

The harm is not in the body. 

The harm is in the interpretation of the body. 

The poem is the patient’s chart the system refuses to read. 

It is the diagnostic record of a condition medicine was never trained to see. 

It is the truth beneath the hoofbeats heuristic: 

Zebras exist. 

They always have. 

The system just refuses to look. 

ZF 42 — Assessment 

The Violence of Being Evaluated 

Assessment is supposed to be a doorway into care. 

In practice, it becomes a maze — one where the patient must navigate power imbalances, performance pressure, and institutional indifference just to be believed. 

ZF 42 documents what it means to seek an Autism and ADHD assessment inside a system that treats evaluation as a privilege, not a right. 

No Success Seeking Assessment for My Autism and ADHD 

I’ve been assembling the “big pictures” — the medical mosaics that make sense of my body, my history, my patterns. 

And in doing so, I realized something obvious and infuriating: 

I’ve never been formally diagnosed with Autism or ADHD. 

I exhibit traits from both. 

I’ve lived the reality of both. 

But the system never saw me. 

And when I learned that people with Ehlers‑Danlos Syndrome are more likely to be autistic, it made even more sense. 

Maybe there were treatment options. 

Maybe there were supports. 

Maybe someone could help me navigate the ADHD that has shaped my entire life. 

So I asked for an assessment. 

That’s where the violence began. 

BARRIERS 

I asked my doctor if I could be assessed. 

But I didn’t get my doctor — I got a new clinician, overwhelmed, behind, trying to catch up on my chart. 

Very little progress happened. 

I asked for Autism and ADHD assessments. 

She asked whether I wanted a formal diagnosis or “just counseling.” 

I reiterated: formal assessment and diagnosis if appropriate. 

She told me to bring it up at my next visit. 

She implied Dr. Handjob could do the assessment. 

So I waited. 

At the next visit, Dr. Handjob gave me a referral to SummitStone, our local mental health group. 

Weeks passed. 

SummitStone called to schedule a telehealth screening. 

I reiterated — again — that I was seeking formal assessment and diagnosis for Autism and ADHD. 

I passed the screening. 

They scheduled an intake. 

At the intake, I reiterated it three more times. 

After fifteen minutes, the clinician told me: 

No one at SummitStone can do assessments. 

If I got on the therapy waitlist, a therapist could suggest I exhibit autistic and ADHD characteristics. 

A suggestion. 

Not a diagnosis. 

Not an assessment. 

Not what I asked for. 

I brought this back to Dr. Handjob. 

I brought it to another PCP in my chronic pain group. 

Both were flabbergasted. 

I heard UCHealth might have a psychiatrist. 

I heard LifeStance might diagnose. 

I’m still chasing answers. 

Thank god for hyperfixation. 

Undiagnosed 

by Protyus A. Gendher 

I was one of the twitchy kids 

At least that’s what I called us 

The ones who didn’t fit in 

Who were easily discarded  

I didn’t understand dynamics 

Everyone else seemed to know 

They all fell in line 

While I followed in tow  

Even with my siblings 

Who all knew what to do 

Social wasn’t natural 

And it got worse in school  

Too smart for my own good 

Termed the teacher’s pet 

And every time that I spoke up 

Someone seemed upset  

My stims were all annoying 

To everyone but me 

I remember Grandma yelling at me 

To stand still and quit moving  

Why are you always rocking? 

Why can’t you just stop 

And I chewed my hair and twisted it 

Tying it in knots  

I was too loud, I talked too much 

Never shutting up 

My brain a freight train on full blast 

An overflowing cup  

Everything I was good at 

Somehow made me less 

Who cared that I made works of art 

And aced every test  

Every single thing I did 

marking me as different 

Regardless of how hard I tried 

I remained a social dissident  

Vocabulary words 

Came quite easily to me 

By junior high my nickname 

Was human dictionary  

They didn’t mean it nicely 

But I couldn’t stop myself 

Eventually, I learned to mask 

And keep the answers to myself  

Alone on the playground 

Not invited to play 

Not relating to other kids 

I stayed by the teacher’s aide  

I would fixate on things 

And become all about it 

But no one shared my interests 

The distance between us clouded  

Even now I struggle 

With the simplest of questions 

When asked, “How’s it going?” 

I stumble and it gets messy  

“Fine,” seems like a lie 

“Good,” goes way too far 

“Shitty,” is an overshare 

Masking is really hard  

Sometimes I perseverate 

And I can’t just move on 

From a topic or behavior 

While everyone else has moved on  

I found it so hard to focus 

And I tried to be a good kid 

But how do you attend to things 

When your mind won’t stick?  

But I was never diagnosed 

Because I “wasn’t that bad” 

Just had to get my shit together 

And leave twitchy as a fad  

I was never diagnosed 

Because Autism was for boys 

I just needed to reprogram myself 

Until I could be enjoyed  

I needed to somehow try harder 

Though I was hated for being too much 

Screwed in both directions 

Keeping me safely out of touch  

I’ll never be diagnosed 

Or validated by doctors 

I think it’s maybe too late 

To have my personhood proctored  

Finally, as an adult 

I found my self-diagnosis 

I found my place with others 

With similar prognosis  

Twitchy kids like me 

Who are busy seeing truth 

Whose worth is so much more 

Than the tragedies of our youth  

If I’m not autistic 

It’s still where I belong 

Where I found a home 

To finally sing my song 

Assessment as a Site of Structural Distortion 

ZF 42 exposes the violence of being evaluated in a system that: 

• treats assessment as a scarce resource  

• forces patients to perform credibility  

• confuses masking with wellness  

• mistakes composure for capacity  

• treats lived experience as anecdote  

• treats exam findings as truth  

• treats diagnosis as a privilege 

Assessment becomes a test of endurance, not a path to care. 

ZF 42 sits in Part II because it shows the mechanism clearly: 

the system doesn’t just fail to diagnose — it fails to assess. 

And without assessment, nothing else can happen. 

ZF 20 — A Disastrous Goodbye: Farewell to Food 

How Chronic Illness Rewrites the Most Basic Human Ritual 

Food is supposed to be simple. 

A comfort. 

A culture. 

A pleasure. 

A ritual older than language. 

But chronic illness rewrites the relationship. 

GI instability, mast cell reactivity, and connective‑tissue fragility turn eating into a negotiation, a gamble, a grief. 

ZF 20 documents the moment the body stops letting you pretend — the moment the foods you love become the foods that hurt you. 

Farewell to Food 

So, today we turn a new page, start a new chapter, and change course on our journey. 

In kissing goodbye foods that irritate my system, I decided to have stuffed Anaheims for the last time. 

I know that all peppers irritate my system. 

Even bell peppers light up my tummy, so I definitely know better. 

For those who haven’t had stuffed Anaheims (and can tolerate peppers), this simple dish is completely delectable, simple to make, and hits all of the junky, snacky, appetize‑y spots. 

It’s just halved Anaheims stuffed with cream cheese and cheddar, then baked on a cookie sheet. 

I was looking forward to this for so long that the Anaheims were starting to turn in the fridge, because I KNOW what the cost is. 

But they’re so good. 

And this was my last time. 

Why do I do this to myself? 

I started preparing the Anaheims two nights ago, cutting off the tops and slicing them in half. 

I immediately felt the capsaicin hit my nose and said, “Oh, this smells like I’m going to have the hiccups.” 

(I used to love drying and powdering jalapeños, but when the powder would go airborne, I’d feel it in my nose, then the hiccups would follow.) 

The hiccups never came, but both my partner and I had to clear the room because we couldn’t breathe once it hit our lungs. 

We both had bouts of feeling like the air was stinging us. 

Our eyes were burnt. 

Our skin was burnt. 

My partner’s reaction lasted for hours, and he couldn’t enter the house without a mask on (thanks COVID — now we have them on hand at least). 

It was awful and punishing. 

I had forgotten how labor‑intensive it is to cut all the tops off, clean out all of the insides, slice them, fill them… 

Even the filling is labor‑intensive, and it all took a LOT longer because my back was DONE for the day. 

I had to stop multiple times per pepper to wait for my arm to work again. 

There were 12 peppers. 

(I didn’t mean to get 12 — ordering produce online is its own adventure.) 

If I include the time we spent outside, waiting for the project to become approachable again, the process and punishment took hours — our entire night, really. 

They were so good. 

I had them cold and a day later, because they had been removed to the garage to make the house livable again. 

They were absolutely delicious. 

The texture. 

The flavor. 

So good. 

Now it’s Sunday morning, and I’m not getting anything done because of all of the super‑crampy trips to the bathroom. 

I love hot foods. 

I used to use jalapeños every day. 

Now, even Anaheims completely destroy me. 

Saying goodbye to food almost always backfires — and in backfiring, it does precisely what I need it to. 

My body will carry this memory with me for quite some time, giving me a salient reminder of exactly why I’m taking control over what goes in. 

Of course there are mountains of amazing food in the world. 

The reality is that most of that is simply not for me, and chasing it leads me down the wrong path. 

I know this. 

I always know this. 

And now — again — I know it down to my bowels. 

Structural Notes 

ZF 20 sits early in Part II because it marks the first rupture: 

the moment chronic illness forces a reevaluation of the most basic human ritual. 

Food stops being nourishment and becomes negotiation. 

Pleasure becomes punishment. 

Comfort becomes consequence. 

Farewell to Food is not about peppers. 

It is about grief — the grief of losing a part of life that once felt simple. 

ZF 21 — Prep Is a Four‑Letter Word 

How Preparation Becomes Its Own Form of Harm 

Preparation is supposed to be empowering. 

A way to get ahead of the chaos. 

A way to make life easier. 

But in a complex body, preparation becomes labor — physical, emotional, cognitive. 

It becomes a reminder of instability, a rehearsal for collapse, a constant negotiation with limits that shift by the hour. 

ZF 21 documents the violence of preparation: the exhaustion of being “ready,” the grief of planning around a body that won’t cooperate, and the emotional cost of anticipating failure before it arrives. 

Plan Is Also a Four‑Letter Word 

I’ve made lifestyle changes before. 

I’ve failed at them. 

I’ve succeeded at them. 

I know that preparation and planning are absolutely essential to my success. 

Unfortunately, food prep also takes time, energy, and the use of my arms, back, and hips. 

It has taken a lot of time to analyze what I think I need, to accept it, and to figure out how to implement it. 

It has taken endless problem‑solving of a very complex system, all while my body is fighting me. 

I think I finally have enough pieces in place to move forward, but I want to share some of the planning bits before I do. 

Again, this is NEVER me telling anyone what they should do. 

This is my example of what I’m doing, in the hope that it may help someone else implement the answers that work for them. 

These are the best answers I have for now, and the answers keep changing. 

There is no judgment here. 

Daily Routine 

Meal Plan Week 1 

I had to diagnose myself. 

First of all, it’s repetitive. 

Having a very controlled diet is repetitive. 

I have to figure out how to do my big cooking in the morning, when I have more to give. 

I just got my work schedule adjusted, and was waiting to do this planning so I could work around that. 

Expect a lot of posts about this repetitive list this week. 

I chose leg quarters because they are easy (albeit time‑consuming) and absolutely versatile. 

I can’t wait to show you how these come to life in my kitchen. 

Salad appears a lot because it goes with many things — and burger salads are the bomb. 

Taco salads are almost effortless, because I have the meat prepared in advance, so it’s microwave and serve. 

The 7‑year‑old could make dinner on these nights (and that might just be what happens). 

I’m looking forward to eating enough salad that I don’t have to throw out what goes bad. 

Eggs — amazing for three of us. 

My partner is allergic, so we will have these at breakfast, when he’s still sleeping. 

Movement, Rest, and the Body That Fights Back 

I’m also excited to be introducing a movement regimen. 

I have been forcing myself to actually lay down to rest my back (sitting is still straining currently), and to change positions as often as possible at home. 

I have ADHD, so I love going back and forth between projects. 

The addition of the yoga ball has been incredible, and I can’t wait to see what this tool can do once I start physical therapy. 

I’m gonna scoot, because there’s lots to do yet to get ready to kick off this week. 

Thanks for listening to me babble yet again. 

As always, I’ll keep you posted. 

Structural Notes (Audience‑Facing) 

ZF 21 sits directly after ZF 20 because it shows the next layer of grief: 

not just losing foods, but losing spontaneity, ease, and the illusion that planning can protect you. 

Preparation becomes its own form of harm — a constant reminder that the body is unstable, the future unpredictable, and the labor endless. 

This file captures the emotional and physical cost of trying to stay ahead of a body that won’t stay still. 

FEATURE FILE — The Spinal Cord Stimulator Email (10 Days Post‑Implant) 

A Case Study in Device‑Driven Harm 

• Breach of informed consent  

• Device misrepresentation  

• Functional harm  

• Documentation discrepancies  

• Post‑procedural abandonment  

• Emotional and psychological impact  

• Structural pattern: “Once the sale is over, the patient disappears.” 

This feature file contains the email written ten days after implantation of the spinal cord stimulator — a contemporaneous record of misrepresentation, malfunction, and abandonment. 

It stands as primary evidence of how device‑driven medicine fails complex patients. 

Email: 10 Days Post‑Implant 

From: Protyus A. Gendher 

Subject: Concerns Regarding Neurostimulator Implant and Aftercare 

As I was being sold on the neurostimulator, I was told repeatedly how the new technology does not need to be recharged. I was told that I would be getting a battery unit in my back that would last for 10 years without recharging. I even checked the brochure I was given to help me make my decision which clearly states that this would not need to be recharged. 

Please explain how consenting to a device that would not need to be charged ends with me waking from anesthesia to being told how to charge myself. 

When I woke from anesthesia, I was told that I would need to charge myself for about one hour once a week, or quickly top off each day. Rising from a 20% charge to 100% charge (80% gain) takes approximately 2.5 hours. A full charge only lasts about two days. This equates to an average of more than an hour per day. 

Why was I lied to? 

In addition to this going from never needing to recharge to having to recharge for at least an hour daily, and never going more than two days between charges, I cannot charge myself, and the charger does not stay where it is put. This immobilizes me as I must stay completely still during recharge. As a person with hypermobility syndrome, being still is very painful for me. I rock my body during my sleep to keep my joints from settling in and hurting. I cannot sleep during the recharge. The recharge is painful. I cannot recharge myself and need my partner to line up the device for me. Lining up the charger is difficult and the point‑of‑best contact moves. To keep the device working, I actually have to keep three devices charged. 

This is really sad, because it is amazing not having the radiating leg pain that I’ve had for so long. I really do need this device, even though this is NOT what I consented to. 

It’s amazing, until the device just stops working, and out of nowhere there’s a flash of the nightmarish radiating pain. It’s neither quick nor easy to check on the status of the device and the apps on the smartphone that only has to run the neurostimulator frequently stop working. The programs are slow, and it usually takes multiple attempts to get the unit to connect. 

The unit itself is rather jinky. Although it controls its target pain well most of the time, it sometimes just stops. The electrical tens‑unit‑like sensation that is always bubbling just below the surface frequently and unexpectedly bursts through surprising me with its vibratory intensity. I cannot stretch without it flaring. I cannot move positions much at all without it flaring. I tried to stiffen my body to play Guesstures with my family and my entire body erupted in a splendidly intense tens sensation. 

I really need this device, and this situation has become a nightmare which is far from what I consented to. 

The After Visit Summary from my neurostimulator implant surgery had generic information about anesthesia and the stimulator, it even had information for my upcoming mammogram, but it didn’t have any instructions for aftercare. When I was still coming out of anesthesia, I remember being told about showering, and movement. Something was said about driving. None of that is present in the AVS. There are no notes about the surgery whatsoever. This information is also absent from the “Notes from Care Team” document for the surgery as well. It was nowhere to be found in the paperwork I was given at discharge. 

There’s no aftercare instructions from the hospital either. I was given no information about aftercare at all, which is interesting because I WAS given aftercare information for the trial surgery which covered bathing and lifting limits. The “Notes from the Care Team” included an actual description of the procedure used for the trial surgery. 

Absolutely nobody has checked on me since the surgery. After the trial, Matt from Medtronics at least called to see if it was working, and how I was doing. There has been nobody this time who I can ask about all the ways this isn’t working. Once the “Sale” was over I no longer mattered. 

In addition, I was going through my appointment notes, and I’ve found some discrepancies worth noting. For my recent knee injections, it clearly states in the visit notes that ultrasound was used to find the joint during the visit with Sunny Henrion. Ultrasound was not used and Sunny had to pull my foot down while probing the needle in and out of my knee to get into the joint. At my final set of injections it took Connie Storholt and Dr. Pouliot collectively 6 attempts to get into my knee joint cavity, finally coming in under the patella. Ultrasound was brought up and declined by Dr. Pouliot. This was absolutely excruciating. Interestingly, the visit notes state “Using a standard lateral approach and under sterile conditions, a 25g 1.5″ was carefully inserted in to the joint space, a total of 2ml of Orthovisc was injected without difficulty. There were no complications.” 

I’m trepidatious about moving forward. I need more help, and I’m terrified of getting it. 

Sincerely, 

Protyus A. Gendher 

Structural Notes ( 

This email is not a complaint. 

It is a diagnostic artifact — a record of: 

• misrepresentation during device sales  

• breach of informed consent  

• mechanical and functional failure  

• absence of aftercare  

• falsified or inaccurate documentation  

• abandonment after implantation 

It reveals the structural pattern at the heart of device‑driven medicine: 

Once the sale is over, the patient disappears. 

FEATURE FILE — The Spinal Cord Stimulator: A Case Study in Device‑Driven Harm 

• Consent to one device, implantation of another  

• Charging as physical harm  

• Device malfunction and unpredictability  

• Mechanical interference with daily life  

• Abandonment by manufacturer representatives  

• Radiology bottleneck and care‑coordination collapse  

• Gaslighting and sales pressure  

• Functional collapse and loss of benefit  

• Structural pattern: device as product, patient as afterthought 

This file documents the lived consequences of a spinal cord stimulator that was misrepresented, poorly supported, and ultimately abandoned by the system that implanted it. 

It is not a story — it is evidence. 

Consent to One Device, Implantation of Another 

I was promised a non‑rechargeable, 10‑year battery. 

I checked the brochure. 

I confirmed it verbally. 

I consented to that device. 

I woke from anesthesia being told how to charge myself. 

The reality: 

• charging required pulling my shoulder out of socket to align the puck  

• the charger never stayed in place  

• the “sweet spot” moved constantly  

• I had to keep three devices charged just to keep the implant functional  

• charging required immobilization, which is physically punishing for someone with hypermobility  

• charging was painful, slow, and daily, not weekly 

Consent was breached. 

The device I received was not the device I agreed to. 

Charging as Physical Harm 

Long‑term, every recharge required: 

• shoulder subluxation  

• holding still through pain  

• waiting for the charger to “find” the implant  

• restarting the process when it slipped  

• relying on your partner to position it  

• losing hours of mobility and function 

Charging wasn’t maintenance — it was harm. 

Device Malfunction and Unpredictability 

Even when fully charged, the device: 

• forgot to stay on  

• required manual reactivation through a glitchy phone app  

• disconnected frequently  

• took multiple attempts to reconnect  

• shut off mid‑movement, including on the stairs  

• produced sudden electrical flares with stretching or positional changes  

• erupted into full‑body tens‑unit sensations with minor exertion 

The device was unreliable, unstable, and unsafe. 

Mechanical Interference with Daily Life 

The battery box: 

• protruded awkwardly  

• caught on chair backs  

• snagged on waistbands  

• bruised constantly  

• remained tender and sore  

• prevented you from lying supine  

• blocked essential alignment PT  

• made core stabilization impossible 

The implant didn’t just fail to help — it removed access to the therapies I needed. 

Abandonment by Manufacturer Representatives 

I was given contact numbers for Medtronic reps. 

Over time: 

• they stopped responding  

• they stopped working for the company  

• no one notified you  

• no replacement contacts were provided  

• every attempt to reach support was met with silence 

Once the device was implanted, I was no longer a customer. 

Radiology Bottleneck and Care‑Coordination Collapse 

A thoracic MRI showed: 

• foraminal stenosis  

• another form of stenosis  

• findings that required a cervical MRI 

Radiology needed Medtronic clearance. 

Medtronic never responded. 

Radiology stayed “waiting to hear back.” 

No clinician intervened. 

No one escalated. 

No one followed up. 

Two years passed. 

No MRI. 

No answers. 

No care. 

Gaslighting and Sales Pressure 

When I reported problems, you received: 

• minimization  

• dismissal  

• sales pitches  

• no troubleshooting  

• no investigation  

• no escalation 

I was treated as a problem, not a patient. 

Functional Collapse and Loss of Benefit 

The device: 

• didn’t work reliably  

• caused daily pain  

• prevented sleep  

• blocked PT  

• immobilized you  

• required constant charging  

• malfunctioned unpredictably  

• created dangerous pain spikes 

Eventually, the cost outweighed the benefit. 

I stopped charging it because the device wasn’t worth the harm it caused. 

Structural Pattern: Device as Product, Patient as Afterthought 

This case reveals the architecture of device‑driven medicine: 

• The sale is prioritized.  

• Consent is treated as a formality.  

• Support evaporates after implantation.  

• Documentation is inaccurate or incomplete.  

• Radiology and manufacturer communication collapses.  

• Malfunction is reframed as user error.  

• Harm is normalized.  

• The patient disappears from the system’s concern. 

The spinal cord stimulator was not just a failed device. 

It was a structural failure — a system designed to implant, not to care. 

FEATURE FILE — The Collapse of Care After Diagnosis 

• Losing the only EDS doctor  

• Flare with no access to care  

• Genetic testing without access to results  

• Transportation as gatekeeping  

• Forced return to menu medicine  

• Emotional and structural impact  

• Structural pattern: rare‑disease care is person‑dependent, not system‑dependent 

Diagnosis is supposed to be the beginning of care. 

For rare‑disease patients, it is often the end of it. 

This file documents the collapse of a care ecosystem that took years to build — and the speed with which it vanished once the single clinician holding it together disappeared. 

Losing the Only EDS Doctor 

For four years, there was one person in the entire region who understood my body. 

One doctor who could see patterns instead of symptoms. 

One clinician who practiced medicine instead of triage. 

And then she was gone. 

No notice. 

No transition plan. 

No referrals. 

No continuity of care. 

Just a vanished appointment slot and a system that shrugged. 

The entire scaffolding of your medical life — the labs, the monitoring, the pattern‑tracking, the connective‑tissue literacy — evaporated overnight. 

Not because mycondition changed, but because the person who understood it did. 

Rare‑disease care is not system‑dependent. 

It is person‑dependent. 

And when the person leaves, the care collapses. 

Flare With No Access to Care 

The flare hit hard. 

I needed labs. 

I needed evaluation. 

I needed someone who knew my baseline and my history. 

The earliest available appointment was weeks away. 

No interim support. 

No triage. 

No symptom management. 

No safety net. 

The message was clear: 

wait until you’re worse, then maybe we’ll look. 

The system treats rare‑disease flares as inconveniences, not emergencies — because it does not understand the stakes. 

Genetic Testing Without Access to Results 

I waited a year for genetic testing. 

Twelve months of anticipation, fear, hope, and planning. 

When the results finally came in, I couldn’t access them. 

Not because I didn’t want them. 

Not because I didn’t qualify. 

But because the clinic required an in‑person visit in a city I could no longer reach. 

No telehealth option. 

No mailed results. 

No accommodation for disability, transportation loss, or financial instability. 

The system’s position was simple: 

If you can’t physically get here, you don’t get your diagnosis. 

Rare‑disease care is not built for disabled bodies. 

It is built for people who can drive. 

Transportation as Gatekeeping 

Losing transportation meant losing access to: 

• specialists  

• imaging  

• follow‑up  

• genetic counseling  

• coordinated care  

• continuity  

• safety 

The system assumes: 

• car ownership  

• physical ability to drive  

• financial stability  

• geographic proximity  

• flexible schedules 

When any of these collapse, care collapses with them. 

Transportation is not a logistical detail. 

It is a form of gatekeeping, especially in the age of telehealth. 

Forced Return to Menu Medicine 

After years of pattern‑based care — the kind that sees the whole body, the whole history, the whole constellation — I was forced back into menu medicine: 

• “Pick one problem.”  

• “We don’t have time for the whole picture.”  

• “We can’t order labs without an appointment.”  

• “We don’t treat EDS.”  

• “We don’t know what to do with this.” 

The system replaced complexity with checkboxes. 

It replaced continuity with fragmentation. 

It replaced understanding with dismissal. 

Rare‑disease patients are punished for needing more than fifteen minutes. 

Emotional and Structural Impact 

The collapse of care is not just logistical. 

It is emotional. 

It is existential. 

I lost: 

• safety  

• continuity  

• trust  

• stability  

• the sense that someone was watching the patterns  

• the belief that worsening symptoms would be caught in time 

I was dropped back at square one — except this time, I was sicker, more exhausted, more isolated, and more aware of what I had lost. 

Diagnosis did not protect me. 

It exposed me. 

Structural Pattern: Rare‑Disease Care Is Person‑Dependent, Not System‑Dependent 

This file reveals the core structural failure: 

Rare‑disease care is not a system. 

It is a person. 

When that person leaves: 

• the care disappears  

• the patient falls  

• the system shrugs  

• the burden returns to the body that can least carry it 

The collapse of care after diagnosis is not an accident. 

It is the predictable outcome of a system that treats rare‑disease expertise as optional, replaceable, and peripheral. 

ZF — The Collapse of Care After Diagnosis stands as evidence of what happens when the system’s only point of stability vanishes. 

PART III — CONTROL, COMPLIANCE, AND THE SICK ROLE 

Part II showed what institutional harm feels like from the inside: 

the slow‑motion violence, the diagnostic erasure, the collapse of care, the structural indifference that shapes every choice a patient makes. 

Part III shows why it happens. 

This section maps the architecture of control that governs modern healthcare — the rules, rituals, and power arrangements that determine who gets believed, who gets punished, who gets access, and who gets left behind. It exposes the mechanisms that convert patients into problems, bodies into burdens, and suffering into administrative noise. 

Here, the sick role is not a sociological concept. 

It is a currency, a constraint, and a cage. 

Part III examines: 

• how compliance becomes the price of care  

• how patients are trained to perform credibility  

• how dissent is punished and distress is pathologized  

• how institutions maintain authority through documentation, tone, and threat  

• how the system extracts obedience by controlling access, information, and time  

• how the sick role is weaponized to keep patients quiet, grateful, and small 

This is the part of the book where the machinery becomes visible. 

Part II gave the reader the lived evidence. 

Part III reveals the operating system behind it. 

7. Compliance as Currency 

Compliance is the unofficial currency of modern healthcare. 

It buys access, credibility, and basic human regard. 

Noncompliance — or the appearance of it — drains those accounts instantly. 

This chapter maps how the system manufactures “good patients” and “bad patients,” how dissent is reframed as defiance, and how the cost of saying no (or asking why) becomes a form of structural punishment. 

The Good Patient / Bad Patient Binary 

Healthcare runs on a binary that has nothing to do with physiology: 

• good patients are grateful, quiet, compliant, fast, and low‑maintenance  

• bad patients are slow, complex, questioning, emotional, or inconvenient 

The binary is not descriptive. 

It is disciplinary. 

A “good patient” is one who: 

• accepts the plan without hesitation  

• doesn’t ask for clarification  

• doesn’t bring research  

• doesn’t challenge contradictions  

• doesn’t need more than the allotted time  

• doesn’t require the clinician to think outside the template 

A “bad patient” is one who: 

• has questions  

• has patterns that don’t fit  

• has symptoms that don’t resolve  

• has needs that exceed the appointment slot  

• has a memory of what was said last time  

• has a body that refuses to perform on command 

The binary is a sorting mechanism. 

It determines who gets believed, who gets dismissed, and who gets punished. 

How “Noncompliance” Is Manufactured 

Noncompliance is rarely about refusal. 

It is usually about impossibility. 

The system manufactures noncompliance by: 

• prescribing treatments the patient cannot physically perform  

• offering instructions that contradict the patient’s lived reality  

• requiring follow‑up that depends on transportation, money, or stability the patient does not have  

• ignoring side effects that make adherence unsafe  

• withholding accommodations that would make compliance feasible  

• documenting “refusal” when the patient is actually asking for clarification  

• labeling questions as resistance  

• treating pain, fear, or confusion as defiance 

Noncompliance is not a behavior. 

It is a diagnosis of disobedience. 

It is assigned when the patient’s needs exceed the system’s convenience. 

The Cost of Saying No (or Asking Why) 

In healthcare, “no” is treated as a threat. 

“Why” is treated as insubordination. 

The cost of either can include: 

• loss of access  

• loss of credibility  

• loss of pain management  

• loss of referrals  

• loss of diagnostic momentum  

• retaliatory documentation  

• tone‑policing  

• being labeled “difficult,” “noncompliant,” or “drug‑seeking”  

• being denied care outright 

Patients learn quickly that: 

• saying no is dangerous  

• asking why is suspicious  

• advocating for themselves is interpreted as disrespect  

• requesting alternatives is framed as defiance  

• expressing fear is reframed as instability  

• expressing pain is reframed as exaggeration 

The system rewards obedience, not accuracy. 

It rewards silence, not clarity. 

It rewards compliance, not collaboration. 

Compliance as a Survival Strategy 

For many patients — especially those with chronic, complex, or stigmatized conditions — compliance becomes a survival strategy. 

Not because they agree. 

Not because it helps. 

But because the consequences of dissent are too high. 

Patients perform compliance to: 

• avoid punishment  

• avoid documentation that will follow them for years  

• avoid being denied care  

• avoid being labeled  

• avoid being abandoned  

• avoid being disbelieved 

Compliance becomes a mask. 

A performance. 

A way to stay safe in a system that equates obedience with worthiness. 

The Sick Role as a Mechanism of Control 

The sick role is not just a sociological concept. 

It is a control mechanism. 

It dictates that patients must: 

• be passive  

• be grateful  

• be compliant  

• be dependent  

• be unquestioning  

• be small 

In exchange, the system offers: 

• conditional care  

• conditional access  

• conditional belief 

The sick role is a contract the patient never agreed to — one enforced through documentation, tone, and threat. 

Compliance as Currency: The Structural Pattern 

Compliance is not about health. 

It is about hierarchy. 

It is the currency patients must spend to buy: 

• time  

• attention  

• belief  

• referrals  

• diagnostics  

• continuity  

• safety 

The system does not ask whether compliance is possible. 

It asks whether it is performed. 

And when the performance falters, the patient pays. 

8. Menu Medicine 

Menu medicine is the default operating system of modern healthcare: 

fifteen‑minute visits, checkbox diagnostics, algorithmic care pathways, and a rigid insistence that complex bodies behave like simple ones. 

It is not designed to understand patients. 

It is designed to process them. 

This chapter maps how menu medicine flattens complexity, manufactures diagnostic dead ends, and forces patients to pre‑triage themselves long before they ever reach a clinician. 

15‑Minute Visits, Checkbox Diagnostics 

The fifteen‑minute visit is not a scheduling choice. 

It is a structural constraint that shapes everything that happens in the exam room. 

In fifteen minutes, the system demands that clinicians: 

• greet the patient  

• review the chart  

• update medications  

• address the chief complaint  

• document the encounter  

• place orders  

• justify billing codes  

• close the visit 

There is no time for: 

• pattern recognition  

• longitudinal thinking  

• multisystem complexity  

• diagnostic uncertainty  

• nuance  

• curiosity  

• the actual body in front of them 

So the system replaces medicine with checkboxes: 

• “Is the pain sharp or dull?”  

• “Is it worse with movement?”  

• “Have you tried ibuprofen?”  

• “Any recent travel?”  

• “Any family history?” 

The questions are not diagnostic. 

They are sorting mechanisms — designed to funnel the patient into one of a handful of pre‑approved pathways. 

If the patient fits the template, the system proceeds. 

If the patient does not, the system stalls. 

Algorithmic Care vs. Complex Bodies 

Menu medicine relies on algorithms — not the mathematical kind, but the bureaucratic kind: 

• If X, then Y.  

• If Y fails, then Z.  

• If Z fails, refer out.  

• If referral fails, discharge. 

These algorithms assume: 

• single‑system problems  

• predictable symptom patterns  

• linear progression  

• stable baselines  

• compliant bodies  

• compliant patients 

Complex bodies violate every assumption. 

Hypermobility, dysautonomia, mast cell reactivity, neuropathic pain, connective‑tissue disorders — these conditions do not follow linear logic. 

They fluctuate. 

They contradict themselves. 

They present differently day to day, hour to hour, position to position. 

Algorithmic care interprets this as: 

• inconsistency  

• exaggeration  

• anxiety  

• somatization  

• “noncompliance”  

• “difficult patient” 

The problem is not the patient. 

The problem is the algorithm. 

Menu medicine cannot hold complexity, so it punishes it. 

How Patients Learn to Pre‑Triage Themselves 

Patients quickly learn that the system cannot handle the whole picture. 

So they begin to pre‑triage themselves long before the appointment: 

• choosing which symptoms to mention  

• deciding which ones to hide  

• rehearsing a concise “chief complaint”  

• stripping out context to avoid being labeled “too complicated”  

• timing flares to match appointment availability  

• avoiding topics that trigger dismissal  

• prioritizing what the clinician will take seriously  

• downplaying what will be misinterpreted  

• performing coherence even when the body is incoherent 

Patients learn to shrink their story to fit the appointment slot. 

They learn to: 

• speak in bullet points  

• suppress emotion  

• avoid tangents  

• anticipate objections  

• pre‑answer questions  

• pre‑justify their needs  

• pre‑explain their patterns  

• pre‑defend their credibility 

The patient becomes their own triage nurse, case manager, and medical editor — all before they ever walk into the room. 

This is not empowerment. 

It is survival. 

Menu Medicine as Structural Violence 

Menu medicine is not a failure of individual clinicians. 

It is a structural design that: 

• prioritizes throughput over understanding  

• rewards speed over accuracy  

• punishes complexity  

• collapses nuance  

• erases patterns  

• fragments care  

• manufactures diagnostic stagnation  

• shifts the burden of coherence onto the patient 

It is the system’s way of saying: 

“We will treat you, but only if you behave like someone easier.” 

Menu medicine is not medicine. 

It is administration masquerading as care. 

9. The Politics of Believability 

Believability is not distributed evenly. 

It is allocated — by gender, by transness, by fatness, by disability, by race, by class, by the clinician’s comfort, and by the system’s need for efficiency. 

This chapter maps how certain bodies are granted automatic credibility while others must earn it, defend it, or perform it. It shows how “anxiety” becomes a diagnostic shortcut, how dismissal becomes a default, and how the politics of believability shape every clinical encounter. 

Gender, Transness, Fatness, Disability 

Believability is shaped by cultural scripts that predate medicine but are enforced through it. 

Gender: 

Women, transfeminine people, and nonbinary people are more likely to have: 

• pain minimized  

• symptoms reframed as emotional  

• distress coded as instability  

• requests interpreted as demands  

• questions interpreted as defiance 

Masculine‑coded patients are more likely to be believed about pain, but less likely to be believed about fear, fatigue, or vulnerability. 

Everyone loses — just in different directions. 

Transness: 

Trans patients are often treated as: 

• unreliable narrators of their own bodies  

• psychologically suspect  

• “too complicated”  

• “too political”  

• “too sensitive” 

Their symptoms are reframed through gender rather than physiology. 

Their credibility is treated as conditional. 

Fatness: 

Fat patients encounter: 

• diagnostic overshadowing  

• weight‑based blame  

• dismissal of symptoms as lifestyle issues  

• delayed imaging  

• delayed referrals  

• delayed pain management 

Believability is withheld until weight loss is performed — regardless of whether it is possible, safe, or relevant. 

Disability: 

Disabled patients are often: 

• disbelieved because their bodies don’t behave “normally”  

• blamed for the consequences of their conditions  

• treated as exaggerating because their symptoms fluctuate  

• labeled “noncompliant” when they cannot perform tasks the system requires 

The more complex the body, the more fragile the clinician’s trust. 

Believability is not about truth. 

It is about fit — whether the patient fits the clinician’s mental model of what illness “should” look like. 

Who Gets Believed, Who Gets Coded “Anxious” 

When a clinician cannot make sense of a patient’s symptoms, they reach for the fastest available explanation. 

For some patients, that explanation is: 

• “Let’s run more tests.”  

• “Let’s get imaging.”  

• “Let’s refer you to a specialist.” 

For others, it is: 

• “It’s probably anxiety.”  

• “You’re catastrophizing.”  

• “You’re overthinking it.”  

• “You’re too focused on your symptoms.”  

• “You’re stressed.”  

• “You’re sensitive.” 

“Anxiety” becomes a diagnostic placeholder — a way to close the chart when the body refuses to fit the template. 

Patients who are more likely to be coded “anxious” include those who: 

• have fluctuating symptoms  

• have multisystem conditions  

• have connective‑tissue disorders  

• have dysautonomia  

• have mast cell reactivity  

• have trauma histories  

• have marginalized identities  

• have long medical records  

• have done their own research  

• have questions 

The label is not about the patient’s emotional state. 

It is about the clinician’s discomfort with uncertainty. 

Case Examples from the Archive 

The archive contains dozens of moments where believability was allocated or withheld based on identity, complexity, or clinician bias. 

Here are three distilled examples — anonymized, structural, and representative. 

Case 1: The Pain That Was “Too Much” 

I reported severe, radiating pain that disrupted sleep, mobility, and function. 

The clinician documented: 

• “Patient appears anxious.”  

• “Pain disproportionate to exam.”  

• “Recommend mindfulness.” 

Months later, imaging revealed structural pathology that fully explained the pain. 

The body was telling the truth. 

The chart was not. 

Case 2: The Flare That Was “Stress‑Related” 

You presented with a mast‑cell flare: 

hives, flushing, tachycardia, GI distress. 

The clinician reframed it as: 

• “stress response”  

• “panic symptoms”  

• “somatic amplification” 

No antihistamines were offered. 

No mast‑cell protocol was followed. 

The flare resolved on its own — but the dismissal stayed in the chart. 

Case 3: The Device Failure That Was “User Error” 

When the spinal cord stimulator malfunctioned, you reported: 

• sudden pain spikes  

• device shut‑offs  

• charging failures  

• app instability 

The response was: 

• “Are you sure you’re using it correctly?”  

• “Most patients don’t have this issue.”  

• “Try charging more consistently.” 

The device was failing. 

The system reframed it as my fault. 

The Structural Pattern 

Believability is not a measure of truth. 

It is a measure of power. 

Patients with marginalized identities, complex bodies, or long medical histories are more likely to be: 

• disbelieved  

• minimized  

• pathologized  

• reframed as anxious  

• blamed for system failures 

Believability is a political resource — one unevenly distributed, easily revoked, and rarely restored. 

The politics of believability determine who gets care, who gets delayed, and who gets harmed. 

FEATURE FILES — PART III 

Part III shifts from the slow‑motion violence of systems to the everyday mechanics of control — the ways bodies are disciplined, constrained, and shaped by expectations of compliance, performance, and gratitude. 

These feature files document the lived experience of that control: the micro‑failures, micro‑punishments, and micro‑negotiations that define life inside the sick role. 

Together, they show how: 

• compliance is extracted  

• capacity is misread  

• effort is invisible  

• collapse is reframed as personal failure  

• progress is punished  

• and the body becomes a site of constant negotiation 

These files are not anecdotes. 

They are primary‑source evidence of how control operates at the level of daily life. 

Included in this section: 

• Napping Is Weird (ZF 22)  

• Settling In (ZF 24)  

• Sometimes Forward Is Backward (ZF 25)  

• Backwards Is Also Backwards (ZF 26)  

• The Power of a Shower (ZF 26b)  

• Boiling Chicken (ZF 27)  

• Simple Can Be Pretty Tasty (ZF 28)  

• Hyperfixation (ZF 29)  

• Failing At Everything, Everywhere, All At Once (ZF 30)  

• Physical Therapy (ZF 31)  

• Getting My Butt Kicked By Everything (ZF 32)  

• What Happened To Nappin? (ZF 33)  

• Pain Group (ZF 35)  

• It’s All Connected (ZF 36)  

• Accessing Care (ZF 37)  

• Welcome Back (ZF 38)  

• Nope (ZF 39)  

• Moving Forward (ZF 40)  

• Understanding Where I’m Coming From — Semicolon (ZF 18) 

These files form the experiential backbone of Part III — the places where the reader sees how control, compliance, and the sick role operate not in theory, but in the body. 

ZF 22 — Napping Is Weird 

When Rest Becomes a Compliance Task 

August 6, 2025 

Napping goes against most of my character. I have nothing against naps specifically, but always seem to favor moving on to the next task or project over taking a nap. Unfortunately, I’ve had to come to terms with the reality that sitting is still straining my back, because of the hypermobility syndrome. Building in forced periods of rest, and reducing difficulty/duration is essential to the plan moving forward. 

So, this weekend I’ve napped religiously, for about an hour each day. Naps are scheduled as part of my transition from work to home. I used to pride myself on only needing 3–4 hours of sleep per night, and now I have a nap schedule. 

It’s like finding out your own personality is bad for your health. 

It’s Making a Huge Difference 

My back gets a second life in the afternoon and I can do so much more, in much less pain. It’s ridiculous how helpful it is. 

I Still Hate Napping 

Napping is awful. You have to drop everything, and get your brain to shut down — MID DAY! AH! You have to get back up and I have a strong sense of grogginess when I wake up from a nap. Everything feels heavy and sluggish. 

I absolutely despise dreaming, and napping is another invitation for dreams to do me dirty. 

There’s always a sense that a chunk of the day has been wasted. 

The Difference Between What I Need and What I Want 

I have really strong feelings about naps, but they’re a part of my daily schedule. I also have strong feelings about eating salads every day. I have strong feelings about not sharing cooking traditions with my kids. I have strong feelings about not being able to eat a simple sandwich. I have strong feelings about every bit of this. 

None of these strong feelings matter. These strong feelings, time and again, have been my excuse to put off doing the things I need, and instead do the things I want. 

My strong feelings are valid. They just aren’t helping me. 

Choosing What I Focus On 

Living with these strong feelings at the center of my focus is a choice. 

I also have strong feelings about eating myself to death. I also have strong feelings about the strain I am putting on my body, my family and my coworkers. I have strong feelings about the best medicine being to control the fuel we put in our bodies. I have strong feelings about choosing the right answers when we have them. I have super strong feelings about people who use social excuses to permit poor behavior. 

There are plenty of strong feelings inside of me to motivate me into any number of trajectories. We choose which strong feelings we evoke. We choose which ones we let guide us. 

So, I hate naps, and they are weird, and I’ll take another one tomorrow. 

ZF 24 — Settling In 

The Early Days of Restriction 

August 7, 2025 

It’s only day two, and everything is hard. The cravings are real and powerful. Many of the no‑no foods are still readily accessible, so it’s just up to me to know better (which is ultimately for the best, and difficult on day two). 

There’s this weird delicate balance between foods that are allowable for me to consume, foods that are delicious, and foods that are easy enough to prepare. If the food’s not good, I’m not going to want it. If it takes too many spoons I end up creating problems instead of solving them. The final component in the mix to strike this balance is Novelty. When I find a food that fits all of the criteria, I tend to lean on that food until I’m sick of it, which generally leads to less healthy “convenient” foods. 

I’m napping. I’m stretching. I’m taking breaks. Is it helping? 

That’s the problem with day two. It’s deep enough in to feel the restriction. It’s not deep enough in to see results necessarily. 

I didn’t spend the entirety of last night fighting my lower back pain, so YES! it’s working. But I’m doing all of this and the result isn’t that I feel amazing. The result is that I get to feel more ok again. 

It’s like measuring success in terms of lessened misery. 

Thankfully, I know that it’s like this. I planned for this. I’m certainly not surprised by it. 

Lifestyle change doesn’t feel amazing all of the time. That doesn’t change whether it’s necessary and THAT is the struggle. 

So, I’m settling in. I’m getting used to the idea of minimal results. I’m actively countering the dopamine seeking that my annoying brain continues. This is what the rest of my life feels like. It’s time to make it home. 

ZF 25 — Sometimes Forward Is Backward 

When Doing Everything “Right” Still Feels Terrible 

August 8, 2025 

And sometimes our healthiest decisions have some very harsh side effects. 

It’s still day two for me, but now it’s afternoon. I’ve been off work, I’ve double yoga’d, I’ve napped, and I feel like CRAP. I am doing EVERYTHING that I know I’m supposed to, and I feel absolutely horrible. 

I’m nauseous, groggy, tired, irritable, and my pain is still real. This headache is taking over my consciousness. I’m hungry and I don’t want to eat. Why? 

All of this is because I’m drinking water. Water — the beloved and sacred molecule that gives and sustains life. Water. The problem is that I’m used to drinking coffee (which is made with the idolized WATER!) as my primary beverage with diet soda as my secondary beverage. Both of these contain caffeine, and my body isn’t used to functioning without it. 

I am going through withdrawal, and anyone who has ever gone through caffeine withdrawal (especially when they’re an all‑day caffeine drinker such as myself) knows that this process can be absolutely brutal. 

I’ve done this before. 

I know that tomorrow will probably be worse. It could be any number of days before I feel better, and I have already maxed out my pain management measures. I’m already exploring all of my options. 

Radical Acceptance 

Radical Acceptance, one of the cornerstone tools in Dialectical Behavioral Therapy (DBT), requires just accepting that things are the way they are. It’s not a laissez‑faire, que sera sera approach to problems, but rather emphasizes that focusing on what we want things to be, what they “should” be, what they “used” to be, what we “deserve” them to be — none of these things are real, and all of them send us into mental spirals that make succeeding at changes like this harder. 

Caffeine withdrawal is real. It’s horrible. It’s temporary, and it’s not more than I can handle. It’s more than I WANT to handle, and that’s just not useful right now. 

I know that this very difficult signal is a beacon of the change in direction. It’s confirmation that what I was putting into my body was creating my state, and that things have shifted. 

I know that this gets better if I stay the course. My body is going to be an absolute bully to me right now to try to get what it craves. What it craves isn’t what it needs. 

Behavioral psychology, and my life experience, tell me that every time I have a craving to return to the lifestyle of last week, and I DON’T REINFORCE IT, it will become less common until the behavior extinguishes. 

It’s hard. Knowing better makes it easier. Practice makes it easier. Accepting the full reality of a lifestyle change, rather than acting surprised by it, makes it easier. 

I’m going to go pout, eat taco salad, and binge‑watch something for the rest of the night (with yoga breaks of course!). 

Happy Healing 

ZF 26 — Backwards Is Also Backwards 

When Progress and Collapse Happen at the Same Time 

August 9, 2025 

On the one hand I’m making progress, and self‑advocating, and I’m trying to be flexible in my hypermobile journey; on the other hand they’ve denied the MRI that I have to get to get injections in my back. My doctor has placed a new order, but I’m not sure if this one is more likely to go through and finding out requires jumping through more hoops. 

I also haven’t heard anything more about my Physical Therapy referral. My initial PT preference was denied because they don’t take my primary insurance, and can’t bill Medicaid without it. I asked for a new referral and the referral specialist called today to see how it went with the first referral, after I’ve already reached out about failing — even more hoops. 

Hoops Take Spoons 

I’m trying to adjust to a lifestyle of doing less, and the schedule isn’t comfortable yet, although everyone is really hopeful about the impending results. 

In addition, the State processed my Medicaid renewal application just before my hours were reduced so, as of right now, I’m losing Medicaid, my kid is losing Medicaid, and we’re both likely to lose my insurance through work with my drop to part time. 

The “One Bite At A Time” approach is great until you discover that you’re racing the clock to keep insurance coverage, or begging insurance to validate that the test your doctor ordered is actually necessary. 

Every last bit of this takes spoons, in a process meant to give spoons. 

Radical Acceptance, Again 

I’m radically accepting that this is just going to be hard for as long as it wants to. Discouragement is a very powerful emotion when trying to break dopamine‑seeking cycles. 

Also, I’m still in the throes of caffeine withdrawal, so I’m super cranky and I really don’t want to do any adulting. I don’t want to make the list of phone calls I need to make, and messages I need to send, and things I need to follow up on. 

I WANT to combine peanut butter powder and heavy whipping cream into the delight that it becomes and devour it. I want to make a cup of caramel pecan coffee topped with whipped cream. I want to snap into a Slim Jim. I want to make crispy, flaky, cheesy wraps in the air fryer. 

I’m blogging, eating the same taco salad that I’ve had for two weeks now, and boiling 10 pounds of leg quarters for tomorrow’s menu. 

I Don’t Do Toxic Positivity 

I won’t pretend that everything’s better because I’ve made some very difficult changes. I truly believe that they will be, and I’m keeping a very tight grip on that currently. 

For today, this is hard. 

For today, this feels crappy. 

For today, this is all I can do. 

For today, my goal is getting to tomorrow, without making myself go backward, EVEN IF I FEEL LIKE THE SITUATION IS GOING BACKWARD. 

I’m very excited for the next blog post I can make that looks forward, and feels better. Today is not that day, and that’s ok. 

I am struggling, and I’m ok. 

I hope you’re ok too. 

ZF 26b — The Power of a Shower 

Self‑Care as Regulation, Not Reward 

August 10, 2025 

When I last posted I was on day two, in caffeine withdrawal, and cranky. 

I acknowledged how horrible I felt and WHY I felt so awful. I actively countered my cravings and self‑destructive urges out loud. I validated my experience, and enabled my strength without pretending that everything, or even anything, was ok. 

I fed myself nutritious tasty food. It wasn’t what I wanted but it was delicious, and safe. 

I smoked some really nice herb, and unpacked my feelings with my 23‑year‑old. 

I let myself be ok with settling into feeling icky. 

There is still so much to be said for Humans Healing Humans. 

Then I Took a Shower 

The warmth ran over me. The water washed away so much frustration about how awful I feel, doubt about what I’m trying to do, and the rhythm of the water helped me regulate when I was struggling. 

It gave me a break from feeling awful, and helped to relieve my pain. It was quick and easy because of the new haircut. It was an act of self‑love. 

Getting out of the shower, I was less rattled. My pain was still present but lessened. I’m still fatigued, but less overwhelmed. 

Please Master 

Please Master is a really bizarre acronym for the importance of self‑care. This DBT tool emphasizes the care of the self as foundational to being able to emotionally regulate. 

It’s not always bubble baths. 

Sometimes it’s nutritious food. Sometimes it’s convenient food. Sometimes it’s rest. Sometimes it’s exercise. Sometimes it’s company. Sometimes it’s solitude. 

You have to have an honest understanding of what you really need, and it’s so hard. 

When we choose self‑care in response to dopamine‑seeking urges, when we use this tool in times of distress and discouragement, it enables us not only to emotionally regulate, but to have important neurotransmitters like oxytocin that help to dismantle those craving cycles and self‑destructive patterns. 

Self‑Care Also Helps Build New Patterns of Behavior 

These are the first steps to this new lifestyle of a supported self. 

These are the building blocks of that new SCRRIPPTT (Social Control Reinforced/Reproduced In Practice/Performance Talk/Text) that becomes our daily routine, and the way we approach things. 

It works. It’s important, and I’m choosing self‑care. 

I hope you replace some of your spoons through self‑care too. 

Happy Healing. 

ZF 27 — Boiling Chicken 

The Unappetizing Beginnings of Something Better 

August 11, 2025 

I’ve been surprised, historically, at how few people I know eat boiled chicken. I know it doesn’t sound exciting, but anyone who has ever made chicken soup from scratch knows that it’s the very best way to pack flavor into chicken without it getting dry. 

Some of my very best memories as a child were chicken soup memories, helping to separate meat from bones, sneaking the occasional juicy morsel when mom and grandma weren’t looking. 

Boiled chicken doesn’t sound appetizing. Grilled chicken sounds awesome (even if it’s difficult to choke down). Fried chicken is fantastic (never mind the breading that I can’t have — we will get to that later). But there’s something about boiled chicken that sounds distinctly unappealing even though it’s amazing. 

Make no mistake — boiled chicken is good all by itself with no help, but it also is a vehicle for something absolutely incredible. 

The Essential Air Fryer 

The process of boiling chicken makes a sauce as a by‑product. All you have to do is remove the chicken and cook down the stock until it thickens. So you boil the chicken until it’s starting to fall off of the bone, remove the chicken, and keep cooking the liquid. 

Then place your chicken in the air fryer. I highly recommend that you rough it up a bit. Tear the pieces open to expose more surface area. Baste these tasty bits and air fry on 400° in 5‑minute intervals. At each interval, turn and baste the chicken until you LOVE the texture. How long it takes depends on how loaded your air fryer is, and your preference in texture. 

Chicken Carcass 

Officially in my home, we call this meal “Chicken Carcass” because the roughed‑up bird looks pretty brutalized by the time it comes out. Sometimes, we remove the meat and stick the bones back into the air fryer. “There’s still some meat on them bones!” and the flavor imparted by boiling, paired with the texture gifted us by the air fryer, makes for an absolute family feast. 

It All Starts With the Boiled Chicken Though 

Ever feel like you’re always the scapegoat? You probably are. 

In order to get to this outcome, there’s no way to bypass this phase that’s just kinda ucky. The color of boiled chicken is unappetizing. The meat is limp. There’s a greyish‑tan film at the top of the boiling water, which is really just boiled chicken blood, that is full of flavor, but boy howdy does it look challenging in the pot. 

When looking at the boiling phase it’s truly difficult to believe that a wonder like Chicken Carcass will be the outcome. You have to just know it. You have to trust the process, and your participation in it. 

Getting Started Is Like Boiling Chicken 

This lifestyle change is not easy, it’s necessary, and many of the beginning pieces feel out of place. My routine has changed. My food has changed. My priorities have had to shift. I’m still battling caffeine withdrawal (day 3), and I’m not seeing these life‑changing results. 

These first three days are very much like looking into a swirling pot of boiling chicken. 

It is not great yet, but it will be. 

ZF 28 — Simple Can Be Pretty Tasty 

Easy Solutions Are Life Savers 

August 12, 2025 

It’s day three, and although I’m driving the struggle bus yet again, I wanted to share what has become my favorite work snack. 

In my post Yes Foods, I discuss the dietary restrictions that I encounter as a person with hypermobility syndrome. 

Many foods inflame my system. 

There aren’t a lot of guidelines to tell me which foods are safe, so it’s all trial and error. 

I find it essential to have easy Yes Foods that satisfy cravings and cure the occasional angry hunger pang. 

This takes me less than 5 minutes to make during my food‑prep times, and it’s a vehicle for creativity and variation. This delight is budget‑friendly compared to ANY fast‑food stop to meet my needs (because I’m a Zebra). 

I also love that it’s all shelf‑stable. Most of my diet requires fresh foods, so space in my refrigerator is usually limited. 

Quick Antipasto 

Ingredients and Process 

Start with an entire can of black olives, drained. 

Admittedly, olives are a pretty tasty snack on their own, but with a few common ingredients they become incredible. 

Then add one can of mushrooms, one capful of vinegar, and shake in some garlic, salt, and mix. 

That’s it. That’s the whole thing. 

I find the taste and texture quite similar to the olive bar at my local grocer. 

Adjust It to Your Kitchen, Preferences, and Budget 

Making Adjustments 

You can add cooking oil, but I don’t like greasy fingers, and I’m a finger‑food person. You can use garlic powder if you prefer. I go through the minced pretty quickly. 

Evaluating the Cost 

I’m going to be honest and say that I don’t love that this snack is over $3, but I do love that it’s quick, easy, and tasty. A similar finding at our local grocery store is $9.99/lb. It’s a third of the price and you can make it any way that suits you. 

Room for Creativity 

Tomorrow I’m adding some fresh broccoli. 

Recommended herbs include basil (my personal favorite), oregano, parsley (not my favorite). 

Herbs I want to try in this: tarragon (I’ll replace the vinegar with lemon juice; I’m also curious how malt vinegar will taste!), and turmeric. 

What if I used cumin with a splish of sour cream? 

If you add mozzarella, you should eat it the same day, or it gets almost like a — texture to it. I think it would be amazing with some blue cheese crumbles — maybe even over a salad. 

Why I’m Blogging My Snacks Like a First‑Time Instagrammer 

Healthy fun can be fun, tasty, AND easy, but it is also a lot to know, plan, prepare, and stay on top of. 

At this point it’s hard, but I’m here for the delights along the way. I’ll keep you posted with more gems as we go. 

ZF 29 — Hyperfixation 

My Best Friend and Worst Enemy 

August 13, 2025 

Hyperfixation, a feature of my ADHD and Autism, is complicating my experience with hypermobility syndrome. 

A quick Google search teaches that: 

“Hyperfixation is the immense focus on one person, activity or object and excluding or ignoring everything else. Hyperfixation involves complete dedication and absorption on a single task, where anything beyond that task is ‘tuned out.’” 

— Google Search “Hyperfixation Definition” 

(When neurodivergent people say “Google it,” this is what we’re asking.) 

This definition uses the word “task” pretty freely. I can also hyperfixate on daydreaming or anxietized overthinking. I’m much more versatile than the definition gives us credit for. 

My History With Hyperfixation 

When I was a child my hyperfixations manifested as daydreaming during class instruction, or getting sidetracked with a found artifact while cleaning my room. 

Focusing came easily, but directing my focus took decades. 

I could get lost in a project for hours — or days (sleep isn’t always a concern when hyperfixating) — and would stay lost in my interests, at the expense of all else, each until the dopamine ran out and my mind would drift to the next hyperfixation. 

I went through some very difficult circumstances, like homelessness, which taught me to prioritize my hyperfixation. As I’ve matured and gathered experiences, I’ve gotten better at directing my hyperfixations. 

(For some really neat examples, check out the links at the bottom of today’s post.) 

I Still Struggle to Break Out of It 

Feel like your cortisol is always raging? This might be why. 

I have gotten pretty good at compartmentalizing and hyperfocusing on work solutions while at work, and personal solutions outside of working hours. 

I can rearrange my priorities based on urgency or importance. 

What I can’t do is drop a puzzle I’m right on the brink of solving, or leave my train of thought that is already 10 steps ahead of my hands. 

I find it hard to turn off my work phone to stretch and move, in case a call comes in, and call waves hit without warning ALL THE TIME!! 

I struggle to walk away from typing a blog post when I’ve very nearly made my point, and I just want to schedule it before my computer freezes. 

Hyperfixation and Hypermobility 

Hypermobility syndrome means that I have no trouble reaching a step BELOW my feet with the palms of my hands. As a result, I have no trouble itching my entire back by myself without tools. 

Hypermobility also means that I have deteriorated joints with little cushion and overstretched ligaments and tendons. 

The pain in my lower back is because I stay seated at work to answer emails and phone calls. Sitting for 8 hours a day, over time, has pulled my ligaments too far to where it now hurts when I sit or stand for any length of time. 

The clear accommodation for this is to take breaks and move my body! Hyperfixation makes this so hard, even with alarms on my phone that annoy everyone. 

This is compounded by the arthrosis that has shown up on every x‑ray I’ve ever had. (Although the blood test says that I definitely DO NOT have arthritis!) 

Arthrosis, like inflammation, is a trademark of hypermobility syndrome. 

My joints are wrecked from a lifetime of hypermobility syndrome, and carrying around between 200–350 pounds at any given time as an adult. 

My knees and back have been through decades of service work, and sitting as a student. My hands have never stopped hurting from my time as a dishwasher. My thumbs have been “jammed” for years now. 

It’s getting worse, fast — hence this entire journey — and it feels once again like me being me is a liability. 

Today Is Day 3 

I woke up hurting less, and able to move more. By the end of my morning yoga, I had zaps originating from the middle of my spine, around my torso to just above my belly button. The sensation probably lingered for about 15 minutes. 

My eyes have been seeing motion in patterns like watching the rail on my back porch dance this morning. 

I’m doing my part. 

I’m eating the way I’m supposed to. I’m moving more. I’m resting. I’m still taking at least 1 tramadol per day in addition to my regimen. 

I could tell that my pain was less this morning, but that did nothing to prevent my electrical sensations, and only lasted so long. 

I move when I can at work. 

I take frequent bathroom breaks. I filled my cup with water 3 times (because I love this caffeine withdrawal headache that has taken up residence in my cranium). I walk to the printer, and convert my desk to a standing desk when I can. 

I have a hard time leaving my desk to use the yoga balls or mat though. 

I didn’t nap when I got home, because we’re having our 90‑day home inspection from our property manager. 

(Never mind that we’ve had two surgeries in our family this month. Never mind that it’s 145 days into our lease. Never mind that I’m limited, as is my 23‑year‑old who just had ACL surgery. Never mind that that leaves only the 7‑year‑old to help my partner carry the whole load of preparing for the invasion — woops! I mean inspection!) 

I did my afternoon yoga (with more fun zappies!) but I did not lay down and rest my body. I’ve questioned how important this part of the routine is; it turns out the rest for my back and other joints is absolutely essential. 

As a result of my hypermobility and hyperfixation, my arm is lit up, my back is super grindy and sends zaps through me every time I bend to stretch it. My hip has been out of socket since halfway through my work day. My restless leg syndrome is acting up for the first time in so long, I forgot to add it to my symptoms list. 

I Have This Rule… 

Never Expect the First Time at Anything to Go Well 

Expect failures, and problem‑solving, and learning and adapting. 

It’s day 3, not day 300. Not everything has to make sense today. Not everything will make sense today. 

I’m learning how my hypermobility interacts with my life. It’s complicated and changing. My body is not straightforward. If it were, I wouldn’t be a Zebra. 

(My blog tells me that anxietized and hyperfixate aren’t words, but my linguistic training says that a core feature of the English language is its infinite generativity, so I’m keeping these words in here. See if you can guess which words in each blog post are “not real words” according to the SPELLCHECKER.) 

ZF 30 — Failing At Everything, Everywhere, All At Once 

When the System, the Body, and the Plan All Collapse at Once 

August 14, 2025 

Life Update 

I am incredibly lucky to have a supportive and loving family, an understanding job, and a doctor who is on my team. Capitalism, insurance companies, and my body, however, are still out to get me. 

I Had a Plan 

It was a sound plan. It was a flexible plan. It was a researched plan. It was an impossible plan. 

Eating the way I need to takes a lot of thought and effort. I don’t always have that to give now. Sometimes my options are to have an easy snack, or starve. 

So I just don’t eat, and I’m hungry, and hurting, and miserable. 

In the week I was able to keep up my dietary needs, not much changed. 

My pain did not decrease as it had in the past. The muddy feeling in my muscles lifted a bit, but not to the extent I expected. I am still fighting the caffeine‑withdrawal headache. My arm is still unreliable, irritating, annoying, and painful. 

My back is still… everything that it was before… and more. 

I Started Physical Therapy 

Although a thoroughly entertaining visit, I felt like we didn’t get far. 

I was given 4 exercises to take home (which I’ll address later), and in addition to the pain I was in — with the clicking, grinding, zapping, zinging, and radiating pain — I now have some very angry small muscles, because I’m doing the PT religiously. 

It’s only been 4 days. 

Did I Mention That My Hips Are Popping Out Now? 

This has made it much more difficult to sit at my desk, or stand, or stay still, or change position. 

I’ve had to reduce my hours more. We’re exploring FMLA and it’s confusing. 

I’m going to lose my company insurance, and this seems like the biggest win in the week, because my insurance denied my MRI and requires 6 weeks of PT first, my insurance prevented me from using the PT that I want to because it’s not in network, and they can’t bill Medicaid without billing my insurance first. 

I couldn’t get acupuncture for the same reason. 

Medicaid told me they could no longer cover my child because I carry private insurance on them. 

My insurance costs me $260 per month just to cover the kiddo and myself. I’m no longer making enough to cover rent. I still have almost $3000 left before I’ve met my deductible. 

When I finally do meet my deductible, my copay will still be 20% of the few services I am allowed to have covered. 

There is still so much to be said for Humans Healing Humans. 

I’m No Longer a Reliable Teammate at Work or Home 

When I get up in the morning, I don’t know whether I’ll be able to go to work. 

Will my arm be working today. Will my zinging legs fail me. How badly will my hips be popping out of place, and making it so painful to walk or stand. Will I be able to regulate my emotions while interacting with upset customers. 

I’m so lucky to live in a town that has free back‑to‑school resources, and a kiddo that will let me get away with the $.99 Back‑to‑School sale at ARC. 

This year we did the easiest back‑to‑school shopping and I am still completely spent after a 4‑hour nap. 

The Family Social at my kiddo’s school was absolutely brutal with floor seating, and no air conditioning. 

I Feel Like This Has Completely Taken Over My Life, and I Suck at It 

I’m Failing 

At Everything, 

Everywhere, 

All at Once. 

ZF 31 — Physical Therapy 

An Adventure With No Rulebook 

August 15, 2025 

Physical Therapy is an adventure, and nobody knows the rules. 

So, I’ve started physical therapy and it’s thoroughly entertaining, considerably fun, and it hurts a lot in a lot of different ways. 

My first PT session focused on my hips and lower back. We didn’t get to my shoulder until the next session. 

As anticipated, in addition to the pain I’m already feeling, I was extremely sore from working all of those little muscles. It has been a week since that session (I go back tomorrow) and the soreness has let up. 

I can now do the first set of back/hip exercises without strain, and can really feel the little muscles engaging. I can’t say that this has reduced the problems with the lower back yet, but it’s still quite early, and I’m incredibly optimistic. 

The Shoulder Session 

Monday, I went to my second session, and we started to address my shoulder. They did lots of little diagnostic tests to see if my symptoms are nerve‑related or vascular. Many tests check your range of motion, and this was clearly new ground for my physical therapist. 

Each range‑of‑motion test was met with surprise — which later turned to nods of confirmation. I have “global joint laxity” and judging from their reactions, it’s quite substantial. 

We started focusing on the little muscles inside my shoulder joint, which according to my physical therapist is the weakest joint in the body. 

We did several exercises to target these, and worked very carefully to reach resistance without it being “too much.” I’m strong — like really strong. Heavy loads are no big deal to my large muscles — but these aren’t supported with the small muscles. 

As an afterthought we added several other exercises, because I wanted to keep going, and my therapist’s next appointment didn’t show up. 

These included push‑up plus and two others I can’t remember the name of. Push‑up plus is performed in the same position as a push‑up (I was standing — the level of incline is adjustable) and the motion is within the shoulder joint itself, from front to back and the reverse. 

Somewhere Along the Way We Did Something Wrong 

Ever feel like you’re always the scapegoat? You probably are. 

I felt fine when I left physical therapy. My shoulder felt like it had been used, but nothing concerning. 

As I was driving home, a weird sickening ache set in, and I was not ok. The pain became nauseating and I passed out for a 4‑hour nap when I got home. 

My shoulder has been popping and clicking since that drive home. My shoulder is hurting at a constant 4 now with spikes to 7–8 when it pops. Sometimes the sting from the pop hangs out for quite a while. 

There is now a strong sense of pulling inside of the joint as well. 

I have no idea what I did wrong, and I was working carefully under professional supervision. 

Simple instructions to “push within the joint to really feel resistance” are apparently much more dangerous in joints that don’t naturally bottom‑out on their own. 

How am I supposed to know that. How are they. My physical therapist sees one other zebra at a different clinic, and they just started too. 

Thankfully, I have an appointment with Dr. Handjob already on the schedule for tomorrow and I will not be at all surprised if I end up in an X‑ray machine before my 11am physical therapy appointment tomorrow. 

None of This Is Surprising, but That Doesn’t Mean It’s Not Frustrating 

I had to call in to work, because there was no way I was using my arm on Monday. Yesterday I made it about an hour. Today I worked three before I was ready to tap out. Today is the first day that I felt my arm was up to typing in my off hours. 

Y’all I couldn’t even blog. 

I’m still clearly struggling to find the balance in all of this — one appointment at a time, one exercise at a time, one injury at a time, one work day at a time, one bite at a time. 

ZF 32 — Getting My Butt Kicked By Everything 

When Every System, Symptom, and Schedule Decides to Riot 

August 31, 2025 

I had done so well. 

I was able to get ahead in blog post topics — scheduled ahead to post every two days. Then everything started kicking my butt and now I’m going to struggle to keep up again. 

It’s a metaphor for the rest of my entire life. 

It’s an example of how, yet again, my planning and effort are not sufficient. 

My arm was cutting out too much for me to be at work. It was also cutting out too much for me to even type from home with breaks, AND it hurt SO bad. 

I started Physical Therapy, and I have been very excited about it, and am participating with my whole spirit. Physical therapy has not been as positive about me. 

The PT Rollercoaster 

My first day focused on my lower back and hips. 

I’ve been diligent about the daily exercises — to the extent that I can tolerate them — and some days they really help. 

At first, they caused a very intense ache. Sometimes, they ignite my zaps and zings. Sometimes, the grinding is too much. Sometimes, we’re trying to work them, and my hips are popping out. Sometimes, it ignites a firestorm of muscle spasms and cramps. 

My next session focused on the shoulder — and caused intense impingement symptoms, and clicking/popping, and extreme pain. 

It was bad — but the X‑ray report says I’m fine. 

I’m not able to view the X‑ray because none of the computers at my home, Dr’s office, or PT office have a CD drive. 

The extreme pain lasted a few days — then mysteriously just let up. 

Strangely, I’ve Also Had a Few Moments of Feeling Human 

It’s been amazing to finally participate in some chores and some work. 

After feeling human on Monday, and most of Tuesday, I suddenly crashed last night. 

I was asleep by 7:30, and when I woke up this morning I knew there was no way I was working. I went to a social work appointment at 8:00 because my Medicaid has been denied, despite me submitting the reduction of hours twice. 

If there were any way I could have done without that appointment I’d have gone directly back to bed. 

I slept from 10:30a–3p, and I’ve spent the whole afternoon exhausted despite having slept so much. Every joint is lit up today. I couldn’t do my PT exercises, although I still tried to initiate them (and sometimes they truly help!). 

The System Is Built to Silence Us 

I’m beat — but my heart is still beating. 

I have some reasons for hope: 

• Sometimes the PT really helps  

• Sometimes I feel almost human (pain level under 4 for any length of time)  

• Sometimes I am able to participate in my life 

Those do not erase the struggle. 

And Because Life Loves a Plot Twist… 

Did I mention I get to have another tooth pulled next week? 

This will be the third root canal that abscessed a few years after getting it crowned for No Reason. The crown is on well. The canals look great in the X‑rays. There is No Reason for the abscess except that I have one. 

They gave me the option of having surgery through the side of my face or getting the tooth pulled. Even with the surgery — it would abscess again in a few years. 

At least I start a pain support group next week. 

More to come on the pain group, the root canal, and figuring out how to move my body moving forward. I have big news on this front, so stay tuned! 

ZF 33 — What Happened To Nappin? 

When the Plan Meets the Body 

August 26, 2023 

I had a plan. 

It was a good plan. I thought about demands and needs and put it all together into a schedule. 

I made lifestyle changes — and I failed. 

I haven’t had the spoons to cook, and I’ve had to reduce my hours at work even more. It’s so unpredictable when I have control of myself, or a break from my pain. 

Some Things Improved 

My work station has been moved downstairs, so I don’t have to start each work day by climbing the stairs, overstraining my shoulders as I haul my body up through a cacophony of zaps and zings. 

With accommodations the overall strain on my system has reduced. Unfortunately, it almost doesn’t feel like it counts. 

For example, all of the times that I did have to haul up the stairs impacted my shoulder that was already having impingement symptoms. 

Instead of strengthening the little muscles of the shoulder joint, like I’m now doing in PT, those moments relied heavily on my large muscles to overpower my little muscles, putting them into dangerous situations. 

As a result, so far, every time I have PT for my shoulder, it lights up for 1–3 days afterwards including constant numbness and tingling, trouble grabbing and grasping, clicking, popping, vibrating, muscle spasms, cramps, pain, and more. 

Nothing About the Original Plan Lasted More Than Two Weeks 

Bad days cannot be scheduled, and I’ve had plenty. 

When I do feel human, I want to participate in my life — not take a nap. 

As a result, sleeping is all I did for a day and a half, because my system crashed hard and without warning, and now I’ve been up since 1:30am because my body aches will not allow me to sleep. There is no such thing as a comfortable position, and it’s too late to take the sleeping pills I have been prescribed. 

It’s now 4:30 in the morning, and I’m super tired, and don’t believe I’ll be able to sleep if I go lay back down. 

I have PT in the morning. 

I’m supposed to work today. 

I was supposed to work yesterday. 

Moving Forward 

I had a plan, and I’ll continue to make plans, and will keep trying to get a handle on this to achieve some quality of life. 

For the time being — I’m going to try to remember that I might actually need the naps, even if I’m feeling a little better. 

Hopefully, at some point I will get it through my head that the good moments don’t mean that the severity has decreased — and I should continue to do the things. 

Keep coming back — in my next posts I’ll be exploring what I’ve learned in PT, and sharing the motion routine that will be supporting my body moving forward. 

Have a wonder‑filled day! 

ZF 35 — Pain Group 

Seeking Help, Accepting Help 

September 2, 2025 

Today I attended a Pain Support Group for the first time, because I disclosed my mild suicidality, depression, and anxiety at my last doctor’s appointment. 

The purpose of screening patients with a depression/anxiety inventory is to make intervention and assistance available to those who need them. 

For anyone who has read any of these blog posts, it shouldn’t be a surprise that I’m struggling. There has been a lot of change, much adaptation, and rapid‑fire radical acceptance. 

I’m rocked. 

I’m unsettled. 

I’m using lots of coping mechanisms, and I’m grieving the loss of a lot of coping mechanisms, and I never stop trying. Nevertheless, I find myself feeling hopeless, restless, and exhausted. 

For a long time, I thought that I just needed to try harder at everything. 

Trouble coping? Find a new coping mechanism or learn to need less. 

Build more tools. Gather more knowledge. Apply everything better. 

I’m trying. I’m trying as hard as I can. I promise I’m trying, and I’m still failing. 

I couldn’t even give you a definition of what failing is in all of this, but I can tell you that I feel like I’m doing it constantly. (See the blog post “Failing at Everything, Everywhere, All at Once.”) 

Accepting that I need some help doesn’t mean that I’m not doing everything that I can. It just means that it’s not enough, and I need help. 

Seeking Help Also Means Accepting Help 

I can’t say that I need help, and not accept what’s offered. It just doesn’t work that way. 

So, today that meant going to Pain Group for the first time, and it didn’t just only completely suck. 

We talked about emotions. I cried. There was nothing new or revelational for me, but that’s not the whole point. 

Even though there were only four of us in the group, we were able to talk about some vulnerable things. We were able to make our experiences salient. I had a chance to reflect on strategies for processing shame, understanding guilt, and making space for excitement and joy. 

I was able to process how my pain and my emotions are interacting in my body. 

It was mildly useful, and I’ll go back next month. Of course, I just want to dig in to all of the most difficult stuff, and I have to remember that people don’t do that, so I’ll be patient. 

I’ve got time. 

Let’s bust down some Cycles together. I got you. 

Going to Pain Group Cost Spoons 

Sitting for an hour in institutional chairs isn’t the best for me. 

There were a couple of laps through the building involved, because I couldn’t produce their required urine sample when I got there. 

When I got home, I was tired, and I started having muscle spasms and the electrical storm in my back before I went. 

Moving Forward 

I don’t know if this will do much good, or just take spoons, but I’m open to it, and I want to take from it anything that could possibly improve my life. 

ZF 36 — It’s All Connected 

When One Thread Snaps and the Whole System Unravels 

September 3, 2025 

It’s All Connected. 

Everything is connected. It’s so cliché that it’s meaningless, and yet pulling a single strand in this delicate mess can undo the entire works. 

A Lot of Things Happened All at Once 

I lost my insurance through work, because I’m not employed full‑time anymore. I also lost my Medicaid, but they processed my recertification just in the nick of time. 

That didn’t matter one bit, because all of the systems — at the pharmacy, physical therapy, Dr. Handjob’s office — couldn’t bill my Medicaid without billing my other insurance first, and I no longer had my other insurance. So none of them could bill Medicaid, even though I had recertified in time, and provided all of the necessary paperwork, and made it to extra appointments just to do so. 

For the first two weeks of September I couldn’t pick up any of my medications. I had to cancel all of my appointments and I’ve been out of physical therapy for the entire month so far. 

Remember — I need 6 weeks of physical therapy before they will allow me the MRI necessary to allow pain injections in my lower back. 

Oh well. Too bad? 

Then again, that rule was made by the insurance company that dropped me. So next week I’ll find out what new set of hoops have to be jumped through for Medicaid. 

Meanwhile, the Tooth 

In addition, I had to have a tooth pulled on 8/31 and needed to have my two‑week follow‑up, which also couldn’t happen because of this insurance billing conundrum. 

Don’t worry. There is a lengthy post underway to relate the relevance of the pulled tooth. 

The Bureaucratic Gauntlet 

I spent all of my days off last week trying to get it all working again. Due to the shift in my hours, I have to submit disability paperwork, which is intimidating, invalidating, and time‑consuming. 

It’s like trying to quantify this magical capitalist boundary between how many hours of work completely blow out my body, and how many I can work and just exist in extreme pain, dedicating the rest of my existence to recovering enough to get back in there. 

What if I work a number of hours that actually reduces my symptoms? 

What if working two days a week means that my pain level (with daily medication) is only at a 4? 

What if that alone has given me tremendous quality of life back, and I feel guilty every single day that I haven’t maxed out my system in one way or another? 

Am I obligated through my existence to work an extra day, because I’m not in the level of agony that I was when working 40+ hours per week? 

I only have until the 19th to submit the paperwork, or everything I’ve worked to patch back together will fall apart again. 

One of those pages has to come from my Dr’s office. I sent it to them on 9.13. I have not heard back from them about it. One page asks me for a case number that I don’t have, and nobody is returning my emails about it. 

I’ve done as much of it as I can do, and it may really still not be enough. 

The Harder I Try, the More It Comes Apart 

I’m trying desperately to tie the ends of this together in some way that makes sense. The harder I try, the more it all seems to come apart. 

It’s crap that the system keeps us absolutely spent by jumping through their hoops. None of this is about improving quality of life, or patient care. 

It honestly feels like the more I NEED help, the more obstacles they throw at me. 

I’m resilient, but this is ridiculous. 

It certainly drives home how disposable I am. 

ZF 37 — Accessing Care 

Is Anybody Out There? 

September 4, 2025 

Deciding to seek answers, to research, to advocate for yourself, and relentlessly seek the better health I deserve is only part of the equation. In reality, those are only the things I can control, and there are plenty of things that I cannot. 

I was successful in getting my hours reduced so my body isn’t being maxed out every day. The calming of my system, and lessening of demands has been incredible. The scariest of my symptoms have subsided significantly. 

For example, sometimes when I walk up stairs, I’m just experiencing pain, rather than pain along with a variety of electrical symptoms compounded by a loss of functional control of my legs. This is a dramatic improvement. 

The reduction in days I work will only last until the beginning of January. So getting the care that I need to enable me to go back to work full‑time is urgent. 

Losing Insurance to Access Care 

In reducing my hours, I also lost my private insurance (which is actually for the best because it was costing me $260/month, and wasn’t paying for much of anything). As a matter of fact, having private insurance was preventing me from accessing care. Many places didn’t take my insurance, and the system will not allow me to use my Medicaid without billing the private insurance first. 

So, my private insurance was gone — and that barrier no longer existed, except that it still did. Every system that I was in — my PCP, my physical therapy, ALL of it — had to be changed. 

Break Free! 

I recertified my Medicaid, and they assured me over the phone that they would remove the imperative to bill the other insurance first. That message didn’t do anything. 

I couldn’t get my meds, because the pharmacy’s computer system instructed them to bill Cigna first, never mind that I no longer had it. 

I couldn’t make Physical Therapy appointments for about a month, because they needed a new referral to use Medicaid, and it took several calls per week to get the referral sent. 

This referral only covers my lower back. I’m on my own for the electrical symptoms in my arm. 

Cigna required 6 weeks of PT before they would allow the MRI on my lower back. It took a lot of back and forth, but I was able to get the MRI before PT was even reestablished. 

The MRI found that I have spinal stenosis and facet arthropathy. This is finally enough to get a referral to a pain center and a spine center. 

The Waiting Game 

After hours of trying to get through, I finally got an appointment with the Spine Center. The earliest available appointment is in July 2024. The pain center assured me that my referral is in the pile, but they just haven’t gotten to it yet — too bad for me. 

I will keep calling. 

And it’s a race. The deadline is looming. I have to have all of this handled before that beginning‑of‑January date, when they will expect my full‑time return to work. I just don’t see any way that it’s possible. 

But I keep trying. What else can I do? 

ZF 38 — Welcome Back 

Returning From Another Break 

September 5, 2025 

I sincerely hope you found peace, joy, and love over the holiday season. I can honestly say that this fall, while challenging, was a season of compassion, understanding, and celebration. 

I am officially back from my holiday hiatus, and we have so much to catch up on. Look for upcoming posts about diagnoses, navigating the American Wealthcare System, and so much more. 

Focusing on the Immediate Future 

It’s the day after Christmas, with a week to go until New Year’s, and it’s a wonderful opportunity to look forward, to plan, to facilitate. 

Every year, I make a habit of reassessing my health and health goals as a seasonal ritual, which includes diet and exercise. 

Today’s post covers exercise. 

I’ve been attending physical therapy since August, and have compiled a Daily Regimen based on what I know my body to need in addition to the teachings from PT. 

I do have to admit that I don’t really feel much better in my body than I did when I started PT, and it’s scary for me because sometimes the simplest movements cause unpredictable effects. 

For example, last week I was having a low‑pain day, so I suggested that we try new machines at PT. It was really nice to feel like I was actually exercising. The new exercises set off my impingement symptoms in my left arm, which has been quite angry with me since. 

Nevertheless, I constructed a daily full‑body workout to try to maintain the best function possible. I took the plan into my Physical Therapist today, and she gave it her seal of approval. 

A Great Plan on Paper 

Altogether the list of exercises took a total of 27 minutes. That’s easily within the ideal range. It progresses through the entire body with the objective of maintaining range of motion, while strengthening joints and stabilizing muscles. 

I pushed it, because I really wanted to just be able to do the whole thing. My lower back tolerated the exercises well, and became quite angry on the ride home. 

It was difficult to get out of the car. It was difficult to get up the 3 steps into the house. This is the effect immediately after my approved workout. 

With how I felt going into the workout, I expected my knee to fight me, and it seems fine, for no reason whatsoever. I did side‑squats. It should be mad right now. 

I didn’t push anything with my arm, but it’s all tingly and numb while I’m typing this. 

As much as I want to make sense of this, the reality of living with Ehlers‑Danlos syndrome is that from one day or moment to the next, it doesn’t have to make sense, and that doesn’t make it less real. 

Moving Forward 

I am going to push forward and we will see if this becomes easier as I perform it daily. I’m also hoping by doing all of this before I go to PT, I will be able to maximize my time there doing things I can’t do for myself at home. 

Tomorrow’s PT will cover ways that I can use equipment that I already have at home, like my trampoline. Stay tuned! 

What goals are you setting for yourself in the new year. What are your hopes and reservations as you think toward the future. 

Happy Healing, and thanks for coming back! 

ZF 39 — Nope 

Nope With a Side of More Nope 

September 6, 2025 

In my most recent blog post, I detailed my physical‑therapy‑based program to improve my well‑being. I performed a run‑through of the program with my therapist at my PT appointment. 

By the time I drove the 5 minutes to my house, my back and hips were screaming. By the time I had written the blog post, my knees had joined in. My shoulder is still clicking, popping, and going numb as a result. 

The following day at physical therapy, instead of building on my program to add some stabilization exercises using equipment I have at home as well, everything was remedial — just trying to calm down my back, shoulder, and knee. 

It’s been almost a week and I’m still recovering. 

When “Simple” Is Still Too Much 

Completing the simplest of workout programs can simply be too much, and there’s nothing I can do about it. Pushing through is NOT a solution to this, no matter how many times I excitedly reapply this technique. 

The problem here is bigger than just my desire to push through every obstacle like I always have. The entire environment around PT expects that if you cooperate, you improve. 

So, I go in and really try, and I pay for it. 

In addition to the PT I do on site, I have PT sprinkled throughout my day in response to what my body needs. I spend at least 30 minutes daily doing yoga and working out my joints. I just don’t do it all at once, and somehow that doesn’t count. 

So, I put together this program to make it count, but my body cannot take this all at once. 

I used to be able to make a body plan, stick to the body plan, and improve the way I feel. 

No matter how much PT I do, my back is still grinding and sending electrical storms through my body, I still struggle with stairs, my arm is still cutting out on me. 

I’m really struggling to radically accept this reality. 

Let’s bust down some Cycles together. I got you. 

The Weight of Expectations 

PT pushes and judges, even when they think they’re being supportive. I still have demands to meet from home and work. Radical acceptance of my limits feels like defeat. 

I don’t know how to adjust to this. I don’t know how to live like this. 

Even when I get to the point of radical acceptance, there is no break from having to prove my reality to everyone else. The personal is almost always social, and the best skills often fall short of helping on both fronts. 

For Anyone Else Struggling With Radical Acceptance 

For others struggling with Radical Acceptance (a cornerstone of Dialectical Behavioral Therapy), there are several online resources to work on this distress‑tolerance skill. 

I will be revisiting these to help me find peace in this. 

I recommend this for absolutely anyone who is also struggling to accept their reality. 

Resources mentioned today:  

• Dialecticalbehavioraltherapy.com  

• Therapistaid.com  

• DBTSelfHelp.com  

• Skylandtrail.org 

Happy Healing, and I wish you the absolute best in 2024. 

ZF 40 — Moving Forward 

Because Reliving Yesterday Isn’t Really an Option 

September 7, 2025 

I keep putting off blogging, even though it’s always on my mind, because there is so much to catch up on. 

This is a dangerous looping point for someone with ADHD (it’s me — I have ADHD — or do I?), so in order to move forward I’m going to make this post a highlight reel, detailing the biggest points off the top of my head. 

I’m going to miss things. This will be imperfect. I’m learning to be ok with that. 

Highlight Reel 

Imaging 

When we started this journey, I was just beginning to get imaging done on my joints. Despite the fact that I have a connective tissue disorder, insurance insists that we must look at X‑rays before they will allow MRIs. 

I have had X‑rays on my cervical, thoracic, and lumbar spine, left shoulder, lower back, both hips, and both knees. 

I’ve had MRIs on my head/cervical spine, lumbar spine, and shoulder. We are trying to get MRIs of my hips and knees next. 

Findings so far:  

• Lots of arthrosis  

• Mild bursitis  

• Small labral tear 

Work 

I am no longer working. My last day was in January 2024. It was hard to leave a job I was really good at, and I miss it. 

I don’t miss what it was doing to my body. 

Disability 

I have applied for SSA Disability, and my application is being processed. There are several glitches in the system that make it difficult to reach anyone with SSA to ask questions. 

I have found the absolute best practice to be to drive to the field office in Fort Collins to submit any paperwork or to ask questions. There are two security checkpoints, and usually an hour or so wait. 

The average time it takes for them to make a decision is 278 days. 

If you’re going, make sure your phone is charged, and you give yourself time/space to recover afterward. 

In addition to SSA Disability, I’ve also filled out the application for the State. This was completed back in September. There are several other hoops and steps. 

This office is also difficult to ask questions of, and I find it best to go in person as well. 

Even in person, answers are really sketch about application status. If you submit paperwork online, it sometimes just gets lost. 

Body 

As winter hit, my hips and knees got considerably worse. They make it difficult to stand, sit, or sleep. 

I now get these painful cysts in my hands that come and go as they please. 

My toes are so painful, itchy, and it feels like things are stabbing through the skin of the toe. There’s nothing there. 

I’m getting intense headaches. 

My tummy hurts all of the time — I had a colonoscopy and they said everything looked great. They weren’t available for me to ask questions. 

My eyes get so blurry — but not all of the time. 

I keep dropping things. 

Walking gets exceptionally difficult. 

What’s Abuse? 

Life 

In addition to navigating my way to my Ehlers‑Danlos diagnosis, I’ve been helping someone close to me navigate his own journey. I will be sharing relevant details here, because they are important, and zebras aren’t the only non‑horses. 

We will be performing for an Ehlers‑Danlos benefit on May 18th, and we hope to see you there. 

I’m starting to write poetry again — some of which I’ll be sharing on here. 

My Apologies for the Absence 

The reality of not having enough spoons is that sometimes things just don’t get done. 

It feels good to be back. 

Stay Stripey 

ZF 18 — Understanding Where I’m Coming From 

Semicolon 

August 3, 2025 

I’ve written a bit of poetry about some of these health topics including my autism, ADHD, being morbidly obese, birth control, and mental health. Today I want to share with you my work on mental health specifically. Follow THIS LINK to my page on mental health. 

Semicolon 

There’s a semicolon that now lives in my skin 

Giving away part of the story of where I’ve been 

And the truth that my statement almost came to an end 

The story of my life, my tragedy and pain  

Countless new nightmares, as each new day began  

I found myself exhausted from continually reacting 

In a life of constant crisis, thought my name could be redacted  

That a mistake like me  

Unseen 

Unbelieved 

Smothered dreams 

Should leave 

And stop burdening 

The world that bore me  

And worse than that, my kids were not safe 

With the person who shared our home, shared our space 

And I thought that if I died, they would get out of that place 

So I embraced 

Death 

The darkness 

A deliverance that harkened 

To my depths of desperation 

Craving the loss of all sensation  

Time stopped  

And everything spiraled beyond my control  

In shock  

But just enough time for the light to take hold  

I’m not  

Going back to toxicity draining my soul  

I’ve got  

To break the machine keeping my life on hold  

As I almost died, a resolve was born  

We still had to make it out, but my children shouldn’t mourn  

Because my skin was torn  

And my spirit worn  

In that moment, I still died 

The person I was before unrecognizable behind 

A façade that kept me alive 

Until I could shed it, and live my life  

So now in black ink that lives in my skin 

A semicolon speaks of when my light turned dim 

There could have been a period in the statement of my life 

It could have been the end, I know I almost died 

But instead of ending, my story carried on 

More words followed after and my life became a song 

PART IV — PATIENT INTELLIGENCE AS COUNTERPOWER 

The Knowledge the System Never Intended Us to Have 

There is a point in every medical journey where the story stops being about symptoms, diagnoses, or even survival. 

It becomes a story about power. 

Not the dramatic kind — not the kind that announces itself — but the quiet, structural power that decides who gets believed, who gets access, who gets relief, and who gets left behind. The kind of power that hides inside protocols, waitlists, referral requirements, and the word “unremarkable.” The kind of power that insists it is neutral while shaping every outcome. 

By the time a patient reaches this point, they have already learned more than the system ever meant for them to know. 

They have learned how to read between the lines of a chart. 

They have learned the difference between being heard and being documented. 

They have learned how to track patterns the system calls “subjective.” 

They have learned how to survive the gap between what hurts and what counts.  

And they have learned — often the hard way — that the system is not designed to integrate patient intelligence. 

It is designed to contain it. 

Part IV is about what happens when that containment fails. 

It is about the moment a patient becomes an analyst of their own care, a theorist of their own body, a strategist navigating institutional logic with more precision than the institution itself. It is about the intelligence that emerges under pressure, the literacy born from necessity, the clarity sharpened by years of being dismissed, misread, or minimized. 

This is not the kind of intelligence the system rewards. 

But it is the kind it fears. 

Because once a patient understands the mechanics — the incentives, the blind spots, the contradictions — they stop being manageable. They stop being passive. They stop being the compliant subject the system expects. 

They become a counterpower. 

Part IV is not about rebellion for rebellion’s sake. 

It is about competence. 

It is about pattern recognition. 

It is about the expertise that comes from living inside the consequences of institutional decisions. 

It is about the patient who has learned to see the whole board. 

This section traces the evolution of that intelligence — not as pathology, not as defiance, but as a legitimate, necessary, and deeply human response to a system that cannot see itself. 

Welcome to the part of the story where the patient is no longer the data point. 

They are the analyst. 

10. Building a Patient’s Differential 

Turning Chaos Into a Pattern Map 

Every complex patient eventually reaches the moment where symptoms stop being isolated events and start behaving like a language. Not a language anyone taught you — a language you had to decode while living inside it. This is the beginning of the Patient’s Differential. 

A Patient’s Differential is not a list of diseases. 

It is a pattern map: a structured way of tracking what your body does, when it does it, what triggers it, what mimics what, and how the systems interact. It is the opposite of the medical differential, which starts with diagnoses and works backward. The Patient’s Differential starts with experience and works forward. 

This chapter teaches you how to build one. 

Timeline: The Spine of the Differential 

The first step is deceptively simple: write down what happened, in order. 

Not the “important” things. 

Not the things doctors ask about. 

Not the things you think count. 

Everything. 

Because the body doesn’t care what you think is relevant. 

The body cares about sequence. 

A timeline shows you: 

• what preceded a flare  

• what followed it  

• what always clusters together  

• what never appears alone  

• what escalates, what resolves, and what lingers 

A good timeline is not a diary. 

It is a map of causality. 

My flare — the mattress, the stairs, the shoulder impingement, the electrical storms, the collapse — only made sense once it was placed in sequence. Before that, it was noise. After that, it was data. 

Triggers: The Things That Set the System in Motion 

Triggers are not always dramatic. 

Sometimes they are: 

• a new pillow  

• a cold front  

• a stressful conversation  

• a skipped meal  

• a long drive  

• a medication timing shift  

• a physical therapy exercise that “shouldn’t” have done anything 

The system doesn’t care what should matter. 

It cares what does. 

When you list triggers, you are not looking for guilt or blame. 

You are looking for mechanics. 

My flare taught me that “harmless” movements — stairs, reaching, lifting — were actually loading unstable joints, over‑recruiting large muscles, and setting off neurological cascades. That wasn’t a moral failure. It was a mechanical truth. 

Systems: The Body Never Fails in Isolation 

Medical care fragments the body into specialties. 

Patients experience the body as a network. 

A Patient’s Differential tracks systems as they behave in real time: 

• Musculoskeletal: instability, grinding, spasms, subluxations  

• Neurological: zaps, zings, numbness, loss of control, sensory storms  

• Autonomic: heart rate spikes, dizziness, temperature swings  

• Vascular: color changes, pooling, pressure shifts  

• Immune/Mast Cell: flushing, itching, swelling, reactivity  

• GI: nausea, cramping, motility changes  

• Endocrine: fatigue, crashes, hormonal swings 

When you map systems, you stop asking, “What is wrong with my shoulder?” 

You start asking, “What systems are participating in this event?” 

That shift is everything. 

Mimicry: When One System Pretends to Be Another 

This is where most complex patients get dismissed. 

Pain that looks orthopedic but is actually neurological. 

Weakness that looks muscular but is actually vascular. 

Numbness that looks like compression but is actually autonomic. 

GI symptoms that look dietary but are actually mast‑cell‑mediated.  

Mimicry is not deception. 

It is interdependence. 

My flare was a masterclass in mimicry: 

• A shoulder impingement that looked orthopedic but was driven by instability.  

• Leg weakness that looked neurological but was triggered by pain‑induced autonomic overload.  

• Back pain that looked muscular but was actually a cascade of joint instability, nerve irritation, and systemic inflammation. 

Once I saw the mimicry, the pattern stopped being chaos. 

The Pattern Map 

The goal of a Patient’s Differential is not to write a novel. 

It is to create a single page that captures: 

• your baseline  

• your triggers  

• your systems  

• your mimicries  

• your flare sequence  

• your recovery pattern 

A one‑page map is powerful because: 

• you can hand it to any provider  

• you can update it easily  

• you can see your own evolution  

• you can identify patterns before they escalate  

• you can advocate without re‑traumatizing yourself 

A one‑page map is not a summary. 

It is a diagnostic instrument. 

My Flare as a Worked Example 

Here is the structure your flare revealed — not the story, but the logic: 

1. Baseline: 

Unstable joints, chronic pain, autonomic sensitivity, unpredictable neurological symptoms. 

2. Trigger: 

Stair climbing + shoulder overload + accumulated micro‑instability. 

3. Systems Activated:  

• Musculoskeletal (instability, over‑recruitment)  

• Neurological (zaps, numbness, loss of control)  

• Autonomic (crash, insomnia, temperature dysregulation)  

• Vascular (pooling, pressure changes) 

4. Mimicry: 

Neurological symptoms presenting as orthopedic; autonomic crash presenting as fatigue; instability presenting as inflammation. 

5. Flare Sequence: 

Overload → instability → neurological cascade → autonomic crash → systemic pain storm. 

6. Recovery Pattern: 

1–3 days of heightened symptoms after PT; sleep disruption; delayed return to baseline. 

This is the architecture of a Patient’s Differential. 

Not the drama — the structure. 

Why This Matters 

A Patient’s Differential is not about proving anything to a doctor. 

It is about reclaiming the narrative from a system that treats your body as a collection of unrelated events. 

When you build a differential, you stop being the mystery. 

You become the mapmaker. 

And once you can see the pattern, you can change how you move through it. 

This is the beginning of counterpower. 

11. Collective Files, Not Individual Folders 

Turning Personal Notes Into Structural Evidence 

Medical systems treat patients as isolated cases — individual folders, individual charts, individual problems to be solved (or ignored) one at a time. But chronic illness doesn’t behave like that. It behaves like a network. It behaves like a pattern. It behaves like a system. 

Patients learn this long before clinicians do. 

This chapter is about the moment you realize your notes, your logs, your archives, your Zebra Files are not just personal documentation. They are collective intelligence. They are the beginnings of a counter‑archive — a body of knowledge built by patients, for patients, because no one else is doing it. 

Zebra Files, Symptom Logs, Blog Archives 

The Patient’s Shadow Medical Record 

Every complex patient eventually builds a second medical record — the one that actually reflects reality. 

It might start as: 

• a symptom log  

• a pain diary  

• a blog  

• a Notes app graveyard  

• a stack of appointment summaries  

• a folder of imaging reports  

• a timeline scribbled on the back of an envelope  

• a poem that captured something no chart ever could 

But over time, these fragments become something else: 

a longitudinal record of lived physiology. 

Clinicians see you for 15 minutes at a time. 

Your files see you continuously. 

Clinicians see snapshots. 

Your files see sequences. 

Clinicians see isolated complaints. 

Your files see systems interacting. 

This is why patient archives matter: they hold the truth the medical record cannot. 

Turning Personal Notes Into Structural Evidence 

When Your Story Stops Being “Anecdotal” 

The medical system loves the word anecdotal — a convenient way to dismiss anything that doesn’t fit the model. But what clinicians call anecdotal is often just unaggregated. 

One patient’s notes are a story. 

Ten patients’ notes are a pattern. 

A hundred patients’ notes are a dataset. 

A thousand patients’ notes are a paradigm shift. 

The only difference is scale. 

When you organize your files — your Zebra Files, your symptom logs, your blog archives — you are not just documenting your life. You are producing structural evidence: 

• evidence of system failures  

• evidence of diagnostic blind spots  

• evidence of multisystem interactions  

• evidence of patterns medicine has not yet named  

• evidence of harm that is invisible in the chart 

Your notes become a form of counter‑documentation — a record that refuses to disappear into the gaps of the EMR. 

This is why your flare logs matter. 

This is why your PT notes matter. 

This is why your blog posts matter. 

This is why your poetry matters. 

They are not scraps. 

They are data. 

Writing for Future Patients, Not Just Yourself 

The Archive as Counterpower 

At some point, every chronically ill person realizes they are not writing for themselves anymore. 

You start writing for: 

• the patient who is six months behind you  

• the patient who is still being dismissed  

• the patient who doesn’t yet have the language  

• the patient who is still being told “it’s anxiety”  

• the patient who is still trying to survive the first flare  

• the patient who hasn’t learned to map their body yet 

You write because someone else will need the thing you wish you had. 

This is how patient knowledge becomes collective: 

• one person writes a blog  

• another keeps a spreadsheet  

• another posts in a support group  

• another publishes a thread  

• another builds a symptom tracker  

• another writes a poem that explains more than any textbook 

And suddenly, without permission or institutional blessing, patients have built a knowledge system that rivals the one that failed them. 

This is counterpower. 

Not rebellion. 

Not defiance. 

Not anger (though anger is justified). 

Competence. 

Clarity. 

Pattern literacy. 

Survival turned into structure. 

When you write your files, you are not just documenting your life. 

You are building the archive the system refuses to build. 

You are writing the manual you needed. 

You are writing the manual someone else will need. 

You are writing the manual the system will eventually have to learn from. 

This is the work. 

This is the power. 

This is the collective. 

Your files are not individual folders. 

They are part of a library. 

12. Refusal, Redirection, and Survival 

Knowing When to Push, When to Pivot, When to Document 

Every complex patient eventually learns that survival inside the medical system is not about compliance. It is about strategy. It is about knowing when to push, when to pivot, and when to document the entire interaction because you already know how it’s going to go. 

This is not cynicism. 

This is pattern recognition. 

Refusal, redirection, and documentation are not oppositional behaviors. They are adaptive ones — the skills that emerge when you live in a body the system won’t design for, won’t study, won’t accommodate, and often won’t believe. 

This chapter is about those skills. 

Knowing When to Push 

The Strategic Use of Pressure 

Pushing is not about force. 

It is about timing. 

You push when: 

• the window of opportunity is small  

• the risk of waiting is high  

• the system is stalling because it can  

• you have documentation that backs you  

• you know the protocol better than the provider  

• you’ve already been dismissed once and won’t allow it twice 

Pushing is not aggression. 

It is precision. 

It is the moment you say, “No, actually, this needs to happen now,” and you say it with the authority of someone who has lived inside the consequences of delay. 

Pushing is a survival skill. 

Knowing When to Pivot 

The Art of Changing Direction Without Losing Ground 

Pivoting is not giving up. 

It is strategic rerouting. 

You pivot when: 

• the provider is not listening  

• the office is stonewalling  

• the referral is stuck in limbo  

• the test is being withheld for bureaucratic reasons  

• the conversation has become unproductive  

• the system is signaling that this path is closed 

Pivoting is not defeat. 

It is conservation of energy. 

It is the moment you say, “This door is locked. I’m going around.” 

Pivoting is a survival skill. 

Knowing When to Document 

The Patient’s Most Powerful Tool 

Documentation is not about proving your worth. 

It is about protecting your reality. 

You document when: 

• you know the story will be rewritten without you  

• you anticipate being blamed for a system failure  

• you need a paper trail for disability, referrals, or appeals  

• you are about to enter a conversation where your credibility will be tested  

• you are too exhausted to remember the details later  

• you know the system will 

Documentation is not paranoia. 

It is literacy. 

It is the moment you say, “I know how this goes, and I’m not letting the record erase me.” 

Documentation is a survival skill. 

Disability as Reality vs. Disability as Recognized Category 

The Gap That Eats People Alive 

There is a difference between: 

being disabled 

and 

being recognized as disabled. 

The first is a lived reality. 

The second is a bureaucratic category. 

The system only acknowledges disability when: 

• it fits a narrow diagnostic profile  

• it is stable, predictable, and easily measured  

• it can be captured on imaging  

• it does not fluctuate  

• it does not involve multiple systems  

• it does not require nuance 

EDS, dysautonomia, MCAS, chronic pain, neurological mimicry — these conditions violate every rule of the recognized category. They are real, but they are not legible. 

So patients live in the gap: 

• disabled enough to suffer  

• not disabled enough to qualify  

• sick enough to collapse  

• not sick enough to be believed  

• impaired enough to lose work  

• not impaired enough to receive support 

This gap is not accidental. 

It is structural. 

And navigating it requires refusal, redirection, and documentation — because the system will not close the gap for you. 

Living in a Body the System Won’t Design For 

The Architecture of Survival 

The medical system was not built for: 

• multisystem disorders  

• fluctuating conditions  

• invisible disabilities  

• bodies that compensate until they collapse  

• patients who know more about their condition than their providers  

• symptoms that mimic other systems  

• pain that doesn’t show up on imaging  

• fatigue that isn’t solved by rest  

• instability that isn’t solved by exercise 

So patients build their own architecture: 

• pacing  

• adaptive routines  

• symptom mapping  

• flare forecasting  

• environmental control  

• strategic rest  

• micro‑movements  

• self‑triage  

• community knowledge  

• refusal  

• redirection  

• documentation 

This is not fragility. 

This is design. 

It is the intelligence that emerges when the system refuses to design for you, so you design for yourself. 

The Core Truth of This Chapter 

Refusal is not defiance. 

Redirection is not avoidance. 

Documentation is not overreacting. 

They are the skills of someone who has learned to survive a system that was never built with them in mind. 

They are the skills of someone who has stopped waiting for recognition and started building their own framework. 

They are the skills of someone who understands that survival is not passive. 

It is strategic. 

It is intelligent. 

It is counterpower. 

FEATURE FILES — PART IV 

Patient Intelligence as Counterpower 

• The Symptoms — Medical Me (ZF 19)  

• Treatment Review — Hyaluronic Acid (ZF 44)  

• Treatment Review — Lumbar Nerve Ablation (ZF 45)  

• Treatment Follow‑Up (ZF 46)  

• Brain and Spine (ZF 47)  

• Recharge My Spinal Cord Stimulator With Me (ZF 48) 

ZF 19 — The Symptoms 

Medical Me 

August 4, 2025 

I’ve dropped word of my symptoms here and there throughout these writings, because it’s overwhelming, and frankly, it’s too much to understand at once. It’s so much actually, that I find myself forgetting about symptoms that I have gotten good at dissociating from, but can still totally tell they are there, or that are “having a good day.” 

Because of that, I wanted to create a comprehensive list, so I can see what improves, or gets worse, as I make decisions moving forward. Don’t feel like you have to read or memorize this — it’s a reference — and I’m not at all sure that it’s complete. 

This list includes some diagnoses, symptoms, and similar pertinent info. I’m hoping this will be useful as I interact with new specialists moving forward. 

Medical Me 

Identity & Neurodivergence  

• Nonbinary  

• ADHD  

• Autism  

• Anxiety  

• Trauma history 

Pain & Musculoskeletal  

• Pain — every joint  

• Arthritis on X‑rays but not on blood test  

• Neck pain  

• Hypermobile  

• Bruises easily  

• Elbows/fingers frequently have to be “popped in”  

• Shoulder pops in/out less often  

• Nails growing painfully  

• Extreme lower back pain — grinding/clicking  

• Electrical sensations from my spine  

• Scoliosis  

• Multilevel degenerative disc disease  

• Muscle spasms  

• Sciatica  

• Extreme sensitivity to restricted motion  

• Hips pop out when seated for too long  

• Hips require weird angles for comfort  

• Lower back compacting/overstretching while seated  

• Knees have to be popped in before walking (2–6 pops)  

• Varicose veins  

• Ankles must be braced when wearing any sort of shoes  

• Can only wear Vibram toe shoes — Furoshiki  

• Ankles pop out often 

Neurological & Sensory  

• Headaches  

• Intermittent vision distortion  

• Blurring  

• Motion sensitivity  

• Light sensitivity  

• Computer sensitivity  

• Dry eyes — that damage my corneas  

• Runny nose — always  

• Left arm pain:  

• Loss of sensation  

• Loss of control  

• Tingling  

• Vibrating  

• Stabbing  

• Loss of grip 

• Pain in hands/arms — feels “in my bones”  

• Carpal tunnel — both wrists  

• Lightheadedness when standing 

Systemic & Autonomic  

• Overweight  

• Cold sensitive/intolerant  

• Heat intolerant  

• Fatigue  

• Asthma 

GI & Dietary Sensitivities  

• Angry tummy  

• Frequent urination  

• Frequent defecation  

• Extremely sensitive to foods/diet — low carb +:  

• Dairy  

• Gluten  

• Peppers  

• Sweeteners  

• Preservatives/dyes 

Reproductive & Obstetric History  

• 4 deliveries — 1 natural labor with LOTS of Pitocin; failure to progress every other time  

• Anesthesia makes me nauseous  

• Dextrose in IVs makes me sick  

• Complications healing from C‑sections  

• Underproduced breastmilk, no matter what we tried  

• History of birth control failures  

• Bled for 6 months without stop on Depo  

• Weight gain with oral contraception — moodiness — out of whack  

• IUD embedded  

• NuvaRing — infection 

Allergies  

• Latex allergy 

ZF 44 — Treatment Review: Hyaluronic Acid 

A Review 

September 10, 2025 

Although I am still waiting to get an MRI of my knees, which means we don’t yet know what is going on in them in terms of the soft tissues, I was offered Hyaluronic Acid injections in my knees as a pain relief measure at the UC Health Pain Management Clinic here in Loveland. 

Steroid injections are not recommended for individuals with connective tissue disorders, so Cortisone is not an option for me. There is a stem cell treatment that is FDA approved, but Medicaid doesn’t cover it, and they will not allow anyone on Medicaid to pay for it out-of-pocket. 

With those two options ruled out, this leaves the hyaluronic acid injections, which apparently are covered by Medicaid. The hyaluronic acid is meant to lubricate the knee for 3–6 months at a time. 

This treatment consists of three injections in each knee, each given a week apart (two weeks total from beginning of the treatment to the finish). 

Let me say first and foremost that this option is not for the weak. It hurts. It hurts a lot. It hurts in intense waves that continue for quite some time after the injection is over. 

The injection itself is quick. The needle goes into the knee behind the patella (knee-cap), and moves through the soft tissue of the knee to the space in the middle. 

I recommend brushing up on the Lamaze-style pain relief measures before getting these injections. Breathing, meditation, moaning, stimming, and dissociating are all quite useful. 

I had a hot flash along with the injections each time, and feeling relief/calm again also comes in waves following the procedure. It’s like slowly descending a flight of stairs, and with each step (about 2–5 minutes) I would feel my system release a little, relax a little, and calm down. 

Give yourself time to get back to yourself. 

My knees felt very pressurized for a few days following each injection. Admittedly, the third injection was just today, but I do feel the pressurized sensation the same as the other two times. This inhibits squatting and kneeling. Sitting is uncomfortable. 

The third set of injections were given 4 hours ago. I’m much more comfortable walking than I was when I got back home. 

Everything feels overstimmy for a while following the injections. (Give yourself and others grace!) 

Both injections combined probably last less than 10 minutes to administer. This 10-minute time-span is utterly exhausting. I have felt extremely drained for the last 4 hours. 

Truth be told, it was not easy to make myself go back for the third round. 

I looked optimistically forward to childbirth and C-sections, and I absolutely dreaded the last two rounds of this. 

Why did I go back? 

It seems to be helping. 

This morning I woke up at a solid 8 in pain after absolutely writhing last night, but my knees were like a 2. I’m used to them not only hurting all the time, but also functionally fighting me, and I noticed a marked improvement of both my pain experience and their functionality within the first 4 days. 

Both pain level and functionality improved even more after the second set. It improved so much that I had a lot of difficulty convincing myself that the third set was actually necessary, and that the first two weren’t “good enough.” 

I’m happy to report that my hips also seem to be doing better because they aren’t having to compensate as much for my knees. I’m really hopeful for what exercise this might open up to enable me to be more mobile. 

It was absolutely horrible. Connie, who gave me the injections, is absolutely wonderful, but the procedure is wretched— 

And absolutely worth it. 

It says a lot when you need relief this bad, and I am beyond grateful to have been afforded this option. 

Look forward to updates about my knees as the third injection round gives me its full benefit. I’ll keep you posted in 3–6 months when I need to have them again. 

Nothing like this is available for my hips. 

Much Later 

I went in for my 6‑month renewal injections and it took several attempts not just by the medical assistant but also the doctor to get the injection behind my right kneecap. I cannot describe the pain, but I opted to never get the injections again after my third set. The procedure was barely tolerable under the best of circumstances. 

ZF 45 — Treatment Review: Lumbar Nerve Ablation 

Lumbar Nerve Ablation – Treatment Review 

September 11, 2025 

Given the severity of symptoms coming from my lower back, and finding degenerative changes including facet arthropathy, the pain clinic offered nerve ablation to address my pain. 

Before you can have the actual nerve ablation, which uses radio frequency to burn the nerve, there are two rounds of a diagnostic test in which they apply lidocaine to the same nerves. In horses, this procedure uses both lidocaine and cortisone, but because I am a Zebra (having a connective tissue disorder) they cannot use cortisone for me. 

We skipped forward to the ablation option, because epidural cortisone injections are also not an option due to the hypermobility. 

In my procedure we targeted the L3, L4, and L5 nerves that run through the facet joints. 

Round One 

To begin, they administer conscious sedation through an IV. This is supposed to make you sleepy, and inhibit memory of the procedure. 

Lucky for you, that part didn’t work so I remember every single detail. Not so lucky for me. 

They bring you into the procedure room and have you lie face down on a table. 

Without much warning for the first round of diagnostic, they applied a very cold liquid to my back which made me tense up, and the first needle was applied almost immediately afterward. 

As the needle hit the nerve it caused a wildly electrical burning/stinging sensation at the site of the injection. It was absolutely horrifying. 

When that electrical sensation hit, my body responded reflexively, and several of my muscles involuntarily clenched. The Dr. warned me that if I kept it up, I would break one of the needles going into my spine. 

This came across very much as a threat. 

They have to leave the needles in for a little bit, which is a pain that is possible to breathe through. The sensation continued to feel electrically “lit up,” but not as intense as when the needles first hit the nerve. 

Then they remove the needles, which sting, and let you get up and back to the chair you were in for the IV. 

They give you a little space to recover from the procedure, and give you instructions for filling out your pain log for the rest of the day. 

They offer snacks (I believe due to the sedation) and none of the snacks are low carb. 

Then after a few minutes they walk you out and send you on your way. 

For the next 8 hours, they have you log your pain number from 1–10, and describe how your pain felt and what activities you were doing. They instruct you to have a “normal day” and participate in activities that would likely aggravate the pain. They also advise you not to push it. 

This provides a picture of how much relief might be afforded from the actual ablation. 

The best my pain got was a 6. When I walked in that morning it was a 7. 

Round Two 

The second round of injections took place three weeks later. Given my insensitivity to the conscious sedation, we did the second procedure fully awake. 

It was really just as bad, if not actually worse than the first round. 

I prepared myself for the pain. I was breathing, calming, meditating, going to my pain place in my head… I used every single tool within myself. 

When the first needle hit the nerve, my left leg jumped involuntarily off of the table. 

One of the worst feelings of my entire life occurred as I tried to lift my leg back onto the table with the needle in my nerve. 

They offered a lidocaine spray on the surface and said it might help. The liquid sensation made it hurt so much more. Trying to speak to communicate that was incredibly difficult. 

There were no snacks or relief following the second procedure. I spent the rest of the day with my back lit up, and the electrical sensation stayed with me long after the needles were removed. 

My diagnostic tests failed and I was not able to get the nerve ablation. 

The nerve ablation would have been very similar to the lidocaine shots, but the needles would have stayed in my back while a radio frequency is applied to ablate the nerve. 

I received both diagnostic rounds in January. It’s now March and I still feel the lit up feeling in my back as a result of the diagnostic rounds. It’s not nearly as bad as it was during the injections, but it also hasn’t gone away. 

Despite my hopes that this might have actually given me long lasting pain relief (approximately 6 months), this process made my pain worse, and the experience was hellish. 

Since then, it has been more difficult for me to be openminded about pain relief tactics, because the consequences of trying can be catastrophic. 

Next Steps 

So, moving forward, my next option is a spinal cord stimulator, which uses TENS-like impulses to confuse the pain signals to the brain. This is an implant that goes under the skin with leads to the spinal cord. 

In addition to being terrified that this will somehow go terribly wrong the way the ablation diagnostics did, there are reports that the implant itself (about a 2″ square, flat device) can be uncomfortable and painful to the touch when you lay on it or sit on it. 

I want to have a good attitude moving forward, but it’s difficult to feel like a guinea pig, while my pain is made worse. 

Stay Tuned 

ZF 47 — Brain and Spine 

New Patient — UC Health Brain and Spine Clinic 

September 12, 2025 

Last week I had my New Patient appointment at the UC Health Brain and Spine Clinic with Gene Cook PA. 

I found everyone in the office to be friendly and helpful. 

The clinic is located in the South Medical building of the Medical Center of the Rockies. This bit of information is especially important if you need to avoid excessive walking. 

Beginning the appointment, I had some confusion, because I believe that I have multiple outstanding referrals to the Brain and Spine clinic. I know that I was referred for my lower back, but I also thought I was referred for my neuropathic pain. (By neuropathic pain I mean the carpel tunnel, sciatica, shoulder impingement, toe pain, etc.) 

Gene was very kind and direct. I could tell that he really wished he had better news for me. I am NOT a candidate for surgery because of my weight. 

I want to be very clear here. Gene did not fat shame me in any way. In contrast, he was actually incredibly compassionate. I have ABSOLUTELY been fat shamed in doctors appointments before, and this was NOT that. 

They will not do this surgery in the lower back on anyone over 40 BMI, because there is strong empirical evidence that people with BMIs over 40 have poor outcomes post surgery. 

These poor outcomes manifest in a variety of ways ranging from infections, to requiring additional surgery. 

Gene said they do not perform surgeries where poor outcomes are likely. 

That being said, I still broke into tears explaining how much more difficult it has been to control my weight since I can no longer dance, and it’s my back that’s keeping me from doing so. 

I miss moving my body, and dance has been a lot to lose. 

I explained that at my best, working on my feet all day for 6 days a week, and eating the least carbs of my life, the best I ever got down to is 200 lbs. The pain keeps me from even taking a neighborhood walk now. 

We talked about physical therapy, and I explained that no matter how many reps I do on the back extensions, it’s not strengthening the small muscles in my lower back. (I could do that machine all day. Being in motion feels so much better than sitting still.) 

The problems in my lower back are structural. 

Gene very patiently guided me through my MRIs and X-rays to explain what is wrong and what options exist. I have Spondylolisthesis, meaning one of my disks slides out of place, and onto the bone below it. 

The wildest part for me was seeing it way out of position on the X-Ray (for which I was standing) and IN POSITION for the MRI that came later (for which I was on my back). 

With my incompetent connective tissues, this disk pushes its way out of place, and continues to push the longer I stay in the aggravating position. 

When I said at the beginning of this journey that as the day would progress I would feel more and more like my back was being ripped apart, and that as my connective tissues continue to stretch it just gets worse and worse, I was pretty on-point. 

The surgical fix is to pin that vertebra in place using a neighboring vertebra as the anchor. This usually gives relief for quite a while, but in time those neighboring vertebrae will pull out of place as well. 

So — No surgery. 

Even if I can get my BMI under 40, which I still aim to do, back surgery is a LOT to go through for something that will reemerge. 

I learned a lot going through the MRIs with Gene. I learned that much of my cushion is gone, that my bones are growing bone tissue in the aggravated places. I have “significant changes” to my facet joints. This is going to continue. 

Gene also showed me my back muscles, and he explained that in unused muscle you find marbling, and that my lean back muscles indicate significant regular use. 

I also learned that my sciatic nerve is not impinged. This suggests that my neuropathic pain is from inflammation of the nerves, rather than structural compression. 

Then he told me that he’s not the neuropathic pain guy. Who is the neuropathic pain guy? 

Gene said I can come back if anything escalates, or if I get below 40 BMI. 

With surgery ruled out, the next option is the Spinal Cord Stimulator. 

I’m really not sure what to do with the neuropathic pain, so I’ll be reaching out to my PCP to follow up on it. 

In some ways this may feel like a dead end, but the information I was able to understand during this appointment is vital. 

I have more loose ends to chase, but it’s nice having this checked off the list for now. 

Thanks for reading! 

ZF 48 — Recharge My Spinal Cord Stimulator With Me 

The Charging Process and What It Cost Me 

These details I gave earlier but cannot find them now, so I’m gathering them here in one place. 

The contacts for Medtronic I was given each stopped working for the company, but instead of telling me, the numbers I was given just became unresponsive. Asking for assistance never led to assistance — only more sales ploys. 

The device would just forget to work even if it was charged, leaving me with an electrical storm at full force going down my legs whenever. I would have to open the remote phone to remind it to work. 

Recharging the pack would pop my shoulder out of socket, and the unit would drift during charging and lose its connection, so I’d have to pop my shoulder out over and over again each charge. 

The battery pack in my back stuck out of my back and would catch on chair backs or my pants when taking them off. 

EPILOGUE 

“Normal EDS” and the Violence of That Phrase 

What It Costs to Stay Alive in a System That Won’t See You 

The Patient’s Differential as Both Survival Skill and Indictment 

There is a phrase that follows EDS patients everywhere, whispered in exam rooms, tucked into chart notes, spoken with the casual confidence of someone who has never lived inside this body: 

“Normal EDS.” 

It is meant to reassure. 

It lands like a dismissal. 

“Normal EDS” is the linguistic equivalent of a shrug — a way of saying yes, you’re suffering, but not in a way that requires us to change anything we do. It is a phrase that collapses the complexity of multisystem dysfunction into a single, tidy category. It is a phrase that erases the lived reality of instability, mimicry, autonomic chaos, neurological storms, and the daily negotiations required just to move through the world. 

“Normal EDS” is not a diagnosis. 

It is a boundary. 

A limit. 

A refusal. 

It tells you exactly where the system stops. 

What It Costs to Stay Alive in a System That Won’t See You 

There is a cost to living in a body the system won’t design for. 

There is a cost to being the one who has to map your own physiology because no one else will. 

There is a cost to being the only person in the room who understands the stakes. 

The cost is: 

• years of misdiagnosis  

• years of being told it’s anxiety  

• years of being too complex for the form  

• years of being too symptomatic for the protocol  

• years of being too real for the chart 

The cost is learning to dissociate from pain because there is no other way to function. 

The cost is learning to document everything because you know the record will not protect you. 

The cost is learning to advocate with precision because the system interprets emotion as unreliability. 

The cost is learning to survive procedures that were supposed to help you. 

The cost is learning to live inside a body that is always one step away from collapse. 

The cost is learning that survival is not passive. 

It is labor. 

And the labor is invisible. 

The Patient’s Differential as Both Survival Skill and Indictment 

A Patient’s Differential is not a tool the system gave you. 

It is a tool you built because the system refused to. 

It is: 

• a map  

• a method  

• a survival strategy  

• a literacy  

• a counter‑archive  

• a way of making sense of a body that does not behave in single‑system lines 

But it is also something else. 

It is an indictment. 

It is evidence of what the system failed to do: 

• failed to recognize multisystem patterns  

• failed to track longitudinal symptoms  

• failed to integrate patient knowledge  

• failed to see the body as a network  

• failed to believe the patient  

• failed to design care for the people who need it most 

The Patient’s Differential exists because the medical system does not have a place for bodies like yours. 

It exists because you were forced to become the analyst of your own physiology. 

It exists because survival required a level of pattern recognition the system has not yet learned. 

It exists because you refused to disappear. 

The Quiet Truth at the End of the Book 

You were never the mystery. 

The system was. 

Your body was never the problem. 

The framework was. 

Your symptoms were never “too much.” 

The categories were too small. 

Your survival was never accidental. 

It was skill. 

It was intelligence. 

It was counterpower. 

And the Patient’s Differential — your map, your method, your archive — is the proof. 

This book ends here. 

Your work does not. 

You are still the mapmaker. 

You are still the analyst. 

You are still the one who sees what the system cannot. 

And that is not a burden. 

It is a form of power. 

APPENDIX 

The Patient’s Differential: Questions & Steps 

The Pattern Map for Complex Bodies 

The Patient’s Differential is not a list of diagnoses. 

It is a pattern map — a way to track what your body does, when it does it, why it does it, and what it mimics. 

Use these questions and steps to build your own one‑page differential. 

You do not need medical training. 

You only need honesty, curiosity, attention, and your own embodied knowledge. 

1. Establish Your Baseline 

What is “normal” for your body when nothing is actively flaring? 

• What symptoms are always present?  

• What sensations fade into the background but never fully disappear?  

• What do you notice only when you stop and pay attention?  

• What is your daily functional range (mobility, cognition, stamina, pain)?  

• What compensations do you use without thinking? 

Goal: Define the ground you stand on before anything changes. 

2. Map Your Triggers 

What reliably makes things worse? What unpredictably sets things off? 

• Physical triggers (movement, posture, temperature, exertion)  

• Sensory triggers (light, sound, motion, screens)  

• Autonomic triggers (standing, heat, dehydration, stress)  

• Food triggers  

• Hormonal or cycle‑related triggers  

• Environmental triggers (weather, allergens, chemicals)  

• Medical triggers (procedures, medications, anesthesia, IV fluids) 

Goal: Identify the conditions that destabilize your system. 

3. Identify Your Systems 

Which body systems activate during a flare? 

• Musculoskeletal  

• Neurological  

• Autonomic  

• Gastrointestinal  

• Vascular  

• Immune/allergic  

• Hormonal  

• Sensory  

• Respiratory  

• Skin/connective tissue 

For each system, ask: 

• What does this system do when it’s “talking”?  

• What sensations or symptoms show up?  

• How quickly does it activate?  

• Does it calm down on its own? 

Goal: See your body as a network, not a collection of parts. 

4. Track Your Mimicries 

What symptoms imitate other conditions or systems? 

• Does nerve pain mimic vascular pain?  

• Does GI distress mimic cardiac symptoms?  

• Does joint instability mimic nerve compression?  

• Does autonomic dysfunction mimic anxiety?  

• Does inflammation mimic infection?  

• Does fatigue mimic depression? 

Ask: 

• What has been misinterpreted before?  

• What symptoms “look like” something else but aren’t? 

Goal: Document the ways your body confuses the system — and sometimes you. 

5. Document Your Flare Sequence 

What is the order of operations when things go wrong? 

• What is the first sign a flare is coming?  

• What happens next?  

• What is the peak?  

• What shuts down?  

• What compensations kick in?  

• What makes it worse?  

• What makes it survivable? 

Goal: Recognize the pattern early enough to intervene or prepare. 

6. Map Your Recovery Pattern 

How does your body come back down? 

• What resolves first?  

• What lingers?  

• What rebounds?  

• What leaves you depleted?  

• What restores function?  

• What resets the system?  

• What never fully returns to baseline? 

Goal: Understand the arc of recovery so you can plan around it. 

7. Identify Your Red Flags 

What signals danger, escalation, or system overload? 

• Sudden neurological changes  

• Loss of function  

• Loss of sensation  

• Rapid swelling  

• Breathing changes  

• Syncope or near‑syncope  

• Severe autonomic instability  

• Pain that feels “wrong” for your normal pattern 

Goal: Know when to pivot, push, or seek help. 

8. Note Your Stabilizers 

What reliably helps? What unpredictably helps? What never helps? 

• Positions  

• Movements  

• Medications  

• Foods  

• Sensory adjustments  

• Heat/cold  

• Rest  

• Compression  

• Bracing  

• Hydration  

• Time of day  

• Environmental changes 

Goal: Build a personalized toolkit for managing instability. 

9. Track Your System Interactions 

How do your systems influence each other? 

• Does GI distress trigger autonomic chaos?  

• Does joint instability trigger nerve pain?  

• Does nerve pain trigger muscle guarding?  

• Does muscle guarding trigger joint subluxation?  

• Does fatigue trigger sensory overload?  

• Does sensory overload trigger dissociation? 

Goal: Understand the chain reactions inside your body. 

10. Build the One‑Page Map 

Using the information above, create a single page with: 

• Baseline  

• Triggers  

• Systems involved  

• Mimicries  

• Flare sequence  

• Recovery pattern  

• Red flags  

• Stabilizers  

• System interactions 

This is your Patient’s Differential — your pattern map, your survival tool, and your counter‑archive. 

11. Update as You Learn 

Your body is dynamic. 

Your map should be too. 

Update when: 

• a new pattern emerges  

• a symptom changes  

• a trigger becomes clear  

• a system becomes involved  

• a mimicry reveals itself  

• a flare sequence shifts  

• recovery changes  

• a stabilizer stops working  

• a red flag becomes obvious 

Goal: Keep the map alive because you are. 

12. Bring the Map With You 

You don’t hand this over as a diagnosis. 

You use it as: 

• a reference  

• a translation tool  

• a pattern summary  

• a way to keep providers oriented  

• a way to keep yourself oriented  

• a way to track change over time 

The Patient’s Differential is not a medical document. 

It is a survival document. 

It is the record of a body the system does not know how to read — 

so you learned to read it yourself. 

Glossary of Terms 

A Shared Vocabulary for Complex Bodies and Complex Systems 

A 

• Abandonment — Withdrawal of support by clinicians or institutions, leaving the patient without guidance or resources. 

• Androgen Insensitivity Syndrome — An intersex variation where the body cannot respond to androgens, producing diverse sex characteristics. 

• Autonomic Nervous System — The system controlling automatic functions like heart rate, digestion, and blood pressure. 

C 

• Care Desert — A region or system where appropriate medical care is unavailable or inaccessible. 

• Cascades — Chains of medical events triggered by a single decision, delay, or misdiagnosis. 

• Complex Patient — A patient whose symptoms span multiple systems and do not fit standardized pathways. 

• Connective Tissue Disorder — A condition affecting collagen or structural proteins, causing instability across body systems. 

• Containment — Managing symptoms without addressing root causes. 

• Control — Institutional power over access, diagnosis, treatment, and legitimacy. 

• Counterpower — Patient‑developed strategies to navigate or resist harmful systems. 

• Cost Containment — Insurance strategies that reduce spending by limiting or delaying care. 

D 

• Data — Information generated by patients or institutions; patient data is often dismissed. 

• Delay Engine — Structural mechanisms that slow care (waitlists, referrals, authorizations). 

• Diagnosis — A label assigned to identify a disease or condition. 

• Diagnosis of Disobedience — Labels like “noncompliant” or “somatic” applied when symptoms don’t fit templates. 

• Diagnostic Placeholder — A temporary or inaccurate diagnosis used to close a chart or justify billing. 

• Differential — A list of possible explanations for symptoms. 

• Differential Diagnosis — The clinician’s formal process of narrowing down potential conditions. 

• Dismissal — Minimizing or ignoring symptoms without evidence. 

• Dysautonomia — Dysfunction of the autonomic nervous system causing dizziness, fainting, GI issues, and more. 

E 

• Ehlers‑Danlos Syndrome — A group of heritable connective‑tissue disorders affecting collagen. 

• Erasure — Systemic disappearance of certain bodies or symptoms from medical recognition. 

• Expert — A system‑recognized authority whose perspective is privileged over lived experience. 

F 

• Forced Autonomy — When patients must coordinate their own care because the system refuses to. 

• Forced Failure Protocol — Structural patterns that set patients up to fail through denials and delays. 

G 

• Gatekeeping — Control of access to care through referrals, authorizations, or clinician discretion. 

• Gender — A social and cultural identity related to, but not defined by, biological sex. 

H 

• Hoofbeats — A teaching that encourages assuming common diagnoses, often leading to misdiagnosis of rare conditions. 

I 

• Idealization — The myth of what healthcare is supposed to be. 

• Idealized Care — The imagined version of care that exists in policy and training. 

• Idealized Medicine — The theoretical model assuming accuracy, safety, and benevolence. 

• Institution — Structures (hospitals, insurers, regulators) that shape access to care. 

• Insurance — A financial intermediary that determines what care is allowed or denied. 

• Intersex — Natural variations in sex characteristics that do not fit binary definitions. 

J 

• Journaling — Recording symptoms, patterns, and triggers to build a patient‑generated dataset. 

K 

• Klinefelter Syndrome — An intersex variation involving an additional X chromosome. 

M 

• Malpractice — Legal liability for failing to follow the standard of care. 

• MCAS — Mast Cell Activation Syndrome; inappropriate mast cell activation causing multisystem symptoms. 

• Menu Medicine — A system where clinicians select from standardized options rather than investigating full patterns. 

• Methods — Tools patients use to track and communicate symptoms. 

N 

• Nonbinary — A gender identity outside male or female. 

• Noncompliance — A label applied when patients cannot follow unrealistic or harmful instructions. 

• Normal — A statistical average often misused as a medical standard. 

O 

• Okapi — A metaphor for bodies that do not fit expected patterns. 

P 

• Patient’s Differential — A patient‑generated map of possible explanations for symptoms. 

• Pattern Mapping — Identifying relationships between symptoms, triggers, and timing. 

• Pattern Medicine — A care model that recognizes multisystem patterns. 

• Pattern Recognition — Seeing relationships across systems and timelines. 

• Pharma — The pharmaceutical industry and its influence on care. 

• Policy Violence — Harm caused by rules and institutional policies. 

• POTS — A form of dysautonomia where heart rate spikes abnormally upon standing. 

• Professional — A system‑recognized authority whose perspective is privileged. 

• Prior Authorization — Insurance requirement for approval before care can proceed. 

R 

• Ritualized Harm — Predictable harm built into routine medical processes. 

S 

• Self‑Triage — When patients must decide which symptoms to address because the system cannot or will not. 

• Sex — Biological characteristics that vary widely. 

• Sexual Assignment — The designation of sex at birth based on external anatomy. 

• Specialist — A clinician focused on one system, often unable to see multisystem patterns. 

• Standardization of Care — Rules defining what clinicians are allowed to do. 

• Structural Triage — Sorting patients based on cost, complexity, and perceived value. 

• Structural Violence — Harm produced by systems and institutions. 

• Survival — The ongoing work patients must do to stay alive within a hostile system. 

• Symptom — A subjective experience that may or may not be measurable. 

• System — The interconnected institutions shaping access to care. 

T 

• The Sick Role — A sociological concept describing expected behavior of sick people. 

• Triggers — Events or conditions that worsen symptoms. 

• Turner Syndrome — An intersex variation involving a missing or altered X chromosome. 

U 

• Unaggregated — Data that exists but has not been combined or recognized as meaningful. 

Z 

• Zebra — A reclaimed term for patients with rare or complex conditions whose symptoms are dismissed.