I’ve been “double jointed” for as long as I can remember. In middle school I had a couple of severe ankle sprains requiring a walking cast, and I was eventually given a doctor’s note excusing me from all PE classes in school. At 15 I had my first dislocation of my left kneecap and began to have recurrent subluxations (partial dislocations), eventually leading to surgery at 18 to try to stabilize it. When I reported ongoing problems to an orthopedic surgeon a few years later, he yelled at me “These are your knees, live with it!” That became my working motto, along with an internalized version of the old joke:

Patient: “Doctor, it hurts when I do X”

Doctor: “Then don’t do that!”

I used to try and report my symptoms to doctors, but was met with so many dismissive responses (you’re too young for that, you couldn’t possibly feel that, your labs are all normal, your imaging is all normal, you’re just looking for attention) that I just stopped trying. Things either resolve themselves within 6-12 months, or they don’t, and either way they don’t seem to be fatal so I just fold them into my list of things I “live with”.

Fast forward about 30 years. One day I’m reading a discussion forum on the internet and as a casual side comment someone mentions something about “hypermobility.” I thought to myself—what is that? I googled it and my jaw hit the floor: you mean, this is a THING? It has a NAME? Suddenly my dozens of health issues—including joint problems, muscular pain, crippling headaches, heart problems, chest pain, digestive issues, uterine problems and more—were all related to *one disorder*?!?! I printed out dozens of peer reviewed articles along with one nice lay summary (https://www.dynainc.org/docs/hypermobility.pdf), marched into my doctor’s office at age 46, and said “I have this. Who can I see?” My doctor had never heard of hypermobility.

I was referred to a physical medicine & rehabilitation doctor who diagnosed me with “hypermobility spectrum disorder” and gave me an order for physical therapy, but didn’t have much else to say about the dozens of non-joint manifestations. After another year I pressed to be evaluated for hEDS, and after 9 months on a waiting list to see a geneticist I was finally diagnosed with hEDS in March, 2021, at age 48.

I’ve cried a lot of tears in the past few months. Tears of relief at having a name for all of these things I’ve struggled with, and tears of grief for the 35 years I went without that, being dismissed and belittled by doctors, left to assume there was “something wrong with me”: was I just lazy and hypochondriac? Was I just trying to get attention? Was it all just psychosomatic? It’s traumatic to have your sense of reality undermined so repeatedly for so many years. There’s a furious part of me that wants to write scathing letters to all those doctors. I won’t, of course.

It’s a weird feeling to be happy to get a diagnosis. Obviously I’d rather not have this condition, but having it and *not knowing it* is much worse. Having my diagnosis has radically changed how I feel about all my encounters with medical professionals. If they try to deny my symptoms I don’t have to buy into their gaslighting. I can say “no, what I’m experiencing is real, even if your tests don’t show it or you haven’t heard of it.”

I have a long road ahead of me to find specialists who have heard of hEDS, then waiting on their waiting lists to see them. There aren’t any direct treatments, but there are things that can help some of the many manifestations of this disorder (tomorrow’s post is symptoms!). I’m halfway through this book(_Disjointed_, edited by Diana Jovin https://hiddenstripes.com/), and I’ve cried reading almost each chapter, especially the ones titled “Misdiagnosis of Autonomic Dysfunction in EDS as Psychiatric Disorders” and “Navigating Psychiatric Misdiagnosis & hEDS”. Dyautonomia (problems with the body’s autonomic systems, which regulate heart rate, temperature, breathing, digestion, etc) are widely misdiagnosed as anxiety or panic attacks, especially in women. It’s yet another layer of how I’ve been gaslit by medical professionals and learned to ignore or belittle my own symptoms. As I’ve learned to trust my body more over the past few years, it’s made me realize how much grief and trauma I need to process, but even finding therapy can be hard, as this article sums up so well: https://themighty.com/2020/10/therapy-not-working-chronic-terminal-illness

I also want to mention that hypermobility spectrum disorder (HSD) and hypermobile Ehlers Danlos Syndrome (hEDS) are overlapping and believe them to be the same condition. They both need awareness and to be taken seriously, however the final diagnostic criteria play out. Having my HSD diagnosis 2 years ago was the turning point for me to begin to take my body more seriously, and to begin to rebuild trust in my body.

@ehlers.danlos

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