How has EDS affected your life?
Ehlers-Danlos Syndrome (EDS)
Symptoms Involving Nervous & Musculoskeletal Systems
Oh my god I have so much to write about this. I am constantly in pain. I have to go to tons of doctors and pt appointments. I walk with platform crutches. I’m tired all the time and can’t do what other people my age can. Nobody around me understands the pain, because they’re always healthy, so I’m lonely. I’ve had a bunch of surgeries. I can’t carry things like my backpack without extra pain. Joints slip daily.
The above describes exactly how I would respond. It is incredibly isolating and physically/emotionally exhausting. No one understands why I'm always in the hospital and it seems like my life is always on pause while everything/everyone around me keeps moving. My faith helps me stay hopeful but coping with the pain and loneliness gets overwhelming
When I was a kid and undiagnosed, it was horrible. I was constantly injured, and it wasn't even from the abuse I was also going through at the time. Once I escaped my abusive parent at 10 years old, the injuries to my joints were so much worse and I was constantly in a cast or splint, to the point where even up until my last year of high school my teachers would pull me aside and ask if everything was okay at home. Everything was fine, I was just finally allowed to play and climb trees. I'd sprain joints and bruise bones all the time, and they were SO SLOW to heal. I refer to being 10 as "the time my ankle was sprained" because it was literally 7 months before I could walk on it again. These days I'm still injuring my joints on the daily and I have a few bones that are just permanently bruised I guess, because there's still edema in my marrow in several different bones. The most frustrating part as an adult is realizing I no longer have the strength to do something I used to do all the time. I can handle the medical side of it no problem, but losing what little capability and independence I have is terrifying
I definitely understand how you're feeling! I also was constantly breaking and spraining things, & everything whether it was a bruise, bone, cut would take FOREVER to heal. My parents were always questioned by CPS because I was always hurt but thankfully they never took me because it was never anyone's fault. I'm 24 now and I can't work anymore and having to rely on my husband to live for the rest of my life makes me feel like a useless piece of trash. I've gotten used to the chronic pain, and watching my every step, thinking about my joints as I'm using them. But the emotional pain of being a burden to others and having no say over it and knowing it's going to continue to get worse is terrifying.
In many ways. I have become unable to do many of the things I used to enjoy, and keeping up with my job and school is difficult. I will say that it has made my faith stronger, though, and taught me to lean on my friends for support.
☝ 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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