Being Treated Like a Hypochondriac
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 vericose 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 Dr’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.
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