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Hello! I was in the professional ballet/ contemporary dance world, and because of hEDS I’ve basically moved entirely away from the dance world. How do you guys deal with the emotional fallout of not having the sense of community that you had for SO long on top of dealing with being physically disabled when you were essentially a pro-athlete 🙃
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Ehlers-Danlos Syndrome (EDS)
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767d
I wasn’t an athlete, but I was a firefighter/medic. As my disease progressed and I realized I had to move on, I was crushed and felt lost for quite some time. I really felt like I’d found my calling and the first responder world is very tight knit… until you’re not working anymore. It took years and therapy to let go and come to terms with my limitations. I still have to work on accepting myself as I am today! That’s why I’m here. I want to make new friends who don’t base my worth on the uniform I wear or job I do.
770d
I was never an athlete, but I was a professional baker, and now I can’t even hold a hand mixer for 10 seconds. I’d be happy to skip holidays and work 16 hour shifts instead. The bakery I worked for was the love of my life. This past holiday season, I didn’t even do cookies for my family celebration. I used to be go-go-go, and now I’m nearly lucky to do one thing on most days, and I use a walker. I’ve become incredibly isolated. I’m heartbroken. I can’t even just sit on a stool and put stuff together on the counter because of the pain in my hips, elbows, forearms, and hands. Best I can do is talk someone through doing something I love, but they aren’t going to care about the intricacies like I do. I’ll never be able to make complex pastries just for fun again. I can’t dance around the kitchen to ridiculous music while I do five different things, just because. I can’t move like that anymore, and I sure as hell can’t think far enough past the fog to do five things at once. Emotionally, I’m so far beyond not ok. I’ve had my suicidal thoughts, but I’ve gotten past those. At this point I’m at the “I wish I was dead” or “I’m ok with it if I happen to die soon.” stage. I hope you’re dealing better than I am. Not being able to do what you’re at a pro level at is soul crushing and there’s no way around it. Having a support system helps, but mine seems to have shrunk suddenly, so I hope yours is reliable! I’m usually not quite this down, I’ve had a really bad day. Usually I have some good silliness to go with this stuff, so feel free to dm me.
☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision
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