Published: 20/06/2018


by Jay B.

Being diagnosed with hEDS at age 29 has brought many challenges to my life including trying to stay mentally sane. Being a man in the construction industry most of my adult life, I had no idea that other people didn’t feel like this. I always wondered why I had to wear braces for everything even in my teenage years. I thought well maybe I just play or work harder than other people.

I started having chronic shoulder dislocations as far back as I can remember. Playing sports was fun but many times left me with a new brace to wear. I don’t remember a summer I didn’t have thumb or finger braces or casts on because dislocating or breaking them playing football. Then I had knee pain in my early teens and a subluxed vertebra at 13. No doctors wanted to touch me, and they couldn’t tell me how to fix it.

As I aged I started having more pain and more frequent subluxations/dislocations in my hands, wrists, ankles, feet, elbows, knees, spine, ribs and hips. I gave up construction and all my most valued hobbies to cope with pain. I completely changed careers looking for something easier on my body. Who knew at the time, construction was the one thing keeping my muscles in shape enough to hold me together a little bit. After losing muscle tone and having a surgery that came with a long recovery, I’ve lost enough muscle that it’s a daily fight to regain while fighting through pain, arthritis, nerve damage, migraines and never ending muscle spasms.

Today at age 39, I spend most my time just managing pain, looking for answers for a better quality of life and trying to figure out what to do with the rest of my life. EDS has taken so many things away that I truly enjoyed it’s hard to retrain the brain into finding new hobbies and things to enjoy. When every single moment of every day is painful it takes the joy out of even the little things in life.

I find the hardest part about having a syndrome like EDS is keeping hope. I’ve spent so much money and have seen so many doctors and all I’ve been left with is a “good luck with that, wish we could help you but we can’t.” Many patients are left with absolutely no answers or treatment plans because of the unpredictability of widespread symptoms and comorbid conditions. Because we are complicated patients that need extra time and research the medical system has left us behind.

But for some reason I keep trying, I keep searching. I feel like if I don’t, I’ll just give up. But like all dogs with a tail too short to catch, I might be chasing hope till the bitter end. In the meantime here’s a visual of a few things that help me get through to the next day. Because sometimes one day at a time is all you can do.




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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