(**First GT post) I’ve been off work for a week now dealing with a range of back, neck, and shoulder pain. I feel like I should be at work because I can stand/walk for short bursts, but I know for a fact I’d be done after more than an hour. Most of the week the issue has been my upper back/shoulder and now it’s my low-back/hips. It’s just getting to be too much for me.
I was diagnosed with hypermoble type Ehlers-Danlos 2 years ago, and I’m still struggling to come to terms with the reality of it. I’ve had severe, chronic joint pain issues since I was 11 and hit puberty plus a myriad if other symptoms. It’s hard for me to accept my limitations a just rest. This lead to a handful of dislocations that became permanent injuries due to me refusing to rest the appropiate amount of time.
My co-worker who helped me realize my diagnosis had to quit working full time halfway through last school year, and I’m scared to be in the same boat soon. When I was 24, I was told I had the musculoskeletal system of a 50 year old (back then my diagnosis was benign hypermobile joint syndrome), and I need a cane and/or chair for long days on my feet. My fear is to be in a chair the majority of the time (pretty common for EDS).
I just hate how guilty I feel for trying to take care of myself plus anxious/disappointed at the slow realization that I can’t do the things typical people my age can do (on top of the whole looking perfectly ok as it’s an invisible illness).