My hEDS Diagnosis Story
I was a bendy kid.
I could do a backbend and walk my hands all the way back to my feet until my body made an O. I mostly sat with my legs in a W on the floor. So comfy. I would also sit with my legs tucked behind my head like a pretzel. I slept in a kind of child’s pose every night, but legs in a W and hands curled inward tucked under my chin. Just how my body wanted to be. I thought I was just built different. Cool, even. My body could do things other kids’ bodies couldn’t, and nobody told me otherwise, so I filed it under fun party tricks and moved on.
Nobody mentioned hypermobility. Nobody mentioned Ehlers-Danlos Syndrome. Nobody mentioned that joints that bend too far are joints that are slowly accumulating damage. Nobody mentioned any of it because nobody knew — really, because nobody looked.
The Early Flares
I also had constant growing pains. Except we now know growing pains aren’t actually a thing. Apparently I’m far from the only kid this happened to. What kids experience as growing pains is usually something else entirely.
For me, it was a body with connective tissue that wasn’t doing its job, and muscles doing their absolute best to hold my joints together instead. It was pain that was completely real, and completely dismissed. I was told I wasn’t in pain. I was too young to be in pain. So I learned early to ignore it, because nobody was going to help me and making noise about it only made adults annoyed. I got very good at ignoring it. Dangerously good, as it turns out.
How can one be “dangerously” good at ignoring pain? Check out this post I wrote on medical gaslighting. TL;DR: Doctors are fairly useless, and an unnoticed UTI turned into a severe kidney infection.
And my body wasn’t just throwing joint flares; it was throwing systemic weirdness, too. When I was a kid, I alternated between being “allergic” to pickles or being “allergic” to orange juice. I would randomly break out in hives, or deal with severely upset stomachs and diarrhea. It was a bizarre gastrointestinal lottery that mysteriously vanished around age ten, right when I was old enough to be thrilled I could finally eat both again. Now I know that wasn’t a standard allergy — it was MCAS (Mast Cell Activation Syndrome) making a mess of my gut before anyone had a name to call it.
From Turbulence to Freefall
I was also spectacularly clumsy. Always stumbling, always bumping into things, always a little unsteady. I thought that was just me. Klutzy. Uncoordinated. In fact, it was so common I had a name for it: turbulence. If planes could be bounced around by an invisible force, why couldn’t I?
Fast forward through decades of pain that I’d trained myself not to notice. Fatigue that went bone-deep. Random allergic reactions nobody could explain. A body that kept sending up flares that kept getting filed under lose weight, you’re too young, or it’s probably anxiety.
Then sometime around 2020 or 2021, the turbulence shifted into flat-out falling. I couldn’t catch myself anymore. I fell several times over the course of a single year, and that was the exact moment the panic button pressed. The doctor visits up-ticked because I was finally forced to ask: What the hell is actually going on with my body?
At the end of 2024, I finally landed on my hEDS diagnosis, or hypermobile Ehlers-Danlos syndrome. A genetic connective tissue disorder. The thing that made me weird and bendy as a kid. The thing behind the growing pains nobody believed. The thing behind the random hives and the joint damage.
And note that I figured it out. Not the 40+ doctors I’ve seen over the last 10 years. Nope. Me.
The Choice I Never Got to Make
I was born with it. Doctors had clues my entire life, but no one listened. I sit with that a lot. Because here’s the thing about hEDS — it has a 50/50 chance of passing to your children. I have two daughters. And I’m fairly sure at least one of them, possibly both, have it too.
I think about the field biologist I wanted to be back when I could carry heavy scientific equipment through miles of chest-deep Florida swamps and still have energy to spare. I think about all the years of progressive damage accumulating while doctors sent me home telling me to go for a walk. I think about my girls and what their futures might look like. And I think about the choice I never got to make.
If someone had listened — really listened — even once, I might have known before I had children. I might have been able to make an informed decision about whether to risk passing this on. A condition that causes me immense pain every single day. That has taken dreams from me I will never get back. That has me three steps from bedridden at 44. I deserved that choice. Nobody gave it to me. So now I watch my girls and I know what I’m looking for. Unfortunately, sometimes I see it. And I feel two things at once: grateful that I can recognize it now, and gutted that it’s there to recognize.
Hopefully, I can at least help them through the maze that is our healthcare system in this country.
Were you diagnosed with something late in life but you knew something was up years before? Drop a comment below and let’s talk about it.
Keep going, folks.
