ZEBRAS EXIST
There are three members of the family Equidae: Horses, Asses, and Zebras. All three exist. All three are real. Yet when doctors receive training they are instructed that when they hear hoofprints, they are to think horses, not Zebras. So when confronted with a Zebra, most doctors make an Ass of themselves.
Recently, after 43 years of being overlooked, I’ve been diagnosed with Hypermobility Syndrome. Finally, after decades of searching for answers, coming up short, being blamed for my medical reality, or dismissed altogether enough pieces fit together and I continued to push, seek, and demand my way into existence.
No. I haven’t had the genetic tests yet to determine if I have Ehlers Danlos Syndrome (EDS), but my referral is pending and so many things have finally started to make sense that I find it necessary to document my journey.
Just as I have struggled with not feeling autistic enough, or not feeling trans enough, there is this sense that until the genetic tests confirm EDS, I’m not Zebra enough.
The reality is that the hypermobility has been a trademark of my life, that was always regarded as the one thing that seemed healthy about me. I couldn’t run a mile. I couldn’t climb a rope, but I could reach beyond my feet with ease, standing or sitting, even while pregnant. Yoga is not so much a hobby or interest as it is an absolute necessity if I want to be able to continue to use my body, but yoga was finally the gym class that I could overachieve in.
I can remember chronic pain beginning when I was 7. “Arthritis” has been showing up in my x-rays since I was 21. When I asked to be referred to a Rheumatologist, I was told that they would have to confirm arthritis in a blood test. No arthritis, but I was told that my tests definitely did show that “something autoimmune” was happening.
Thankfully, the “something autoimmune” was enough, at 42 years old, to finally receive care as a chronic pain patient. I started taking a prescription NSAID as well as a mood stabilizer that has been shown to be effective with chronic pain. This was absolutely life changing.
Until it wasn’t.
I’m learning to understand what I go through in terms of flare-ups, and a recent flare-up had me so scared I couldn’t help but continue to push for answers. I had my regimen increased to it’s maximum. My lower back, now in searing pain, would send periodic zaps and zings through my body. The zaps were a standard shooting electrical sensation. The zings I can only describe as how it would feel if the sound of stereo feedback were turned to 10, and piped through a nerve. My eyesight was blurring and my eyes becoming more sensitive, even though I just got glasses, which really only seem to partially help anyhow.
I was looking at not being able to make it through a work shift.
DOCTORS DIDN’T DIAGNOSE ME. FACEBOOK DID.
As ridiculous as it may sound, Facebook is what finally gave me answers. It’s extra amusing, because I’ve mused for quite sometime that it was awfully nice of Facebook to let me know that I am Autistic, as I hit the like button time-and-again on posts that resonated with me, which just happened to come from an autistic perspective. The same thing happened as I discovered that I am trans. The Facebook algorithm, through it’s programming to show us more of what we like and are interested in, started to give voice to pieces of me that had always been invisible.
All of a sudden I wasn’t alone. All of a sudden I wasn’t the only person who stimmed, who was ridiculed for our otherness our entire life, who hyperfixates, overrelates, and overcompensates. I learned that I wasn’t the only one that feels like gender is icky, and you should keep it off me. “Whew, none for me, thanks. I’m full.”
Somehow, similarly, I have become friends with multiple people who share this genetic trait (or really, one of a variety of genetic traits- more later).
What Cult did you grow up in?
WHAT ARE THE ODDS?
Ehlers Danlos Syndrome occurs in 1 in 5000 people. When I read that I thought to myself, “5000 doesn’t seem that many.” So, I did some research.
Heart disease accounts for 1 in 5 deaths.
Cancer affects 1 in 3.
Osteoporosis 1 in 5 (women? gross)
Alzheimer’s affects 1 in 9.
Diabetes 1 in 10.
Liver Disease 1 in 10.
Irritable Bowel Disease 1 in 100
Ankylosing Spondylitis 1 in 1000
Lupus affects 1 in 2000.
Ok. So 1 in 5000 is pretty uncommon.
This isn’t a quick and easy blood panel. “Oh! Your white blood cell count is sky high! We better do something!”
This is so dismissible. “Oh, it’s just arthritis.” “You’re just fat.” “Well you were homeless for 4 years, that probably took a toll.”
I’ve had days where each step I take has 5-9 audible cracks resonating from each ankle and knee, where it takes minutes to engage my knees beneath me. It’s been decades since I’ve walked without ankle braces on even though I wear the worlds most accommodating shoes.
OPENING MY OWN EYES
When I was approved for a referral for genetic testing, I drove to work bawling. I screamed “I exist,” over and over again, my entire drive to work.
When my doctor, who has been treating my chronic pain, walked into the exam room, he asked why I was there. I said I wanted to talk about Zebras, and his head immediately began to nod, on repeat, and he smiled, and listened, and confirmed so much.
WHAT’S NEXT?
I don’t know where this journey will lead. I will be surprised in this journey right along with you. The point is, that no matter what kind of Zebra I am, I’m still a Zebra; This journey is valid; I am not alone, and I do not want other invisible Zebras to be alone either.
Survivor Literacy 
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