THE QUIET SIDE OF EDS

Posted June 20, 2018

#MyEDS by Jimmy M.

My name is Jimmy and I’m currently a freshman in college studying management of information systems. When most people look at me, it’s hard to tell that I struggle with what could be classified as an “invisible disorder.” And yet, as I’ve since discovered, EDS and my associated conditions are all the more real and important.

When we first found out that my sisters and I had EDS, it was pretty shocking. I don’t exhibit the normal symptoms of hypermobile Ehlers-Danlos syndrome like my sisters do, but the tests had clearly proven that I too was affected. This was around my sophomore year of high school, an already confusing time filled with a higher caliber of school work and the beginnings of college talk. What I didn’t know is that the diagnosis would lead me on a journey of self-discovery throughout the remainder of my high school career and into the beginning of college.

The biggest way that EDS manifests in me is through POTS. I get fatigued easily and it’s hard for me to keep up physically with my peers. My college is a large campus with an enormous amount of stairs, seemingly endless inclines, and at least a 15-20 minute walk from lower campus to my dorm. EDS never really played a big role in my life until I discovered that walking across campus and up to my dorm can knock me out for the rest of the day, a reality that I’ve learned how to handle as my freshman year has progressed.

However, my story revolves more around a quieter part of the disorder that is not talked about nearly as much as hypermobility: the link between EDS and anxiety disorders. The summer before my freshman year of college I was diagnosed with Obsessive Compulsive Disorder, or “OCD” – a diagnosis that was incredibly frightening and even more confusing because I don’t fit the stereotype. My room is frighteningly messy, I don’t obsess over germs and my utensils can be out of order. All of those are valid OCD symptoms that I don’t aim to diminish, but they’re just not me. Instead, I get stuck in mental cycles that are irrational, upsetting, and exhausting.

My brain is an endless cacophony of noise, constantly reverberating and forcing me to think, over think and rethink. Thoughts that most people would dismiss as “silly” or “impractical” evade every fiber of my consciousness, not asking for my attention but demanding it. Quiet moments are rare and welcome, but also indicative of a much louder period to follow. To put it simply, I am never alone in my mind, I am surrounded, supported, held back, and pushed forward by a never ending stream of ideas and thoughts – some worthless, some not. I am trapped and held hostage by my own thinking, struggling to break out.

My experience is exactly that: mine. I choose to share and write about it not because I want to elicit sympathetic emotions but to educate. For years I struggled through my rituals and obsessions alone, not having any idea that what I was doing was not normal or healthy. It would take me almost two decades to come to the realization that most of my peers don’t think like this. If I can help prevent another person from trying to battle their mental health problems without outside help, then my story is worth telling.

I’ve been lucky enough that the hypermobility aspect of EDS does not majorly affect my life in the ways that I’ve seen it in other cases. However, the connection between EDS and anxiety disorders is just as real and as frightening. I’ve worked really hard on not letting my mental health struggle or my EDS define my life in any way – I keep up with my friends and I have good coping strategies for when my head gets a little too loud. However, it also took me a long time to realize that I couldn’t do it alone.

Grappling with mental health is not a battle that should have to be fought alone, and I’m glad to be given the opportunity to share my experience with others.

Disclaimer: Each story submitted to The Ehlers-Danlos Society for this #myEDS/#myHSD anthology is published "as-is," with only minimal edits for spelling, grammar, and typographical mistakes. Each profile reflects the personal views, experiences and opinions of the individual authors-and, thus does not necessarily represent the views and/or endorsements, individually or collectively, of The Ehlers-Danlos Society, its leadership, staff, boards, or communities. We can also not confirm any medical claims or comments in the story.

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