Hey, apologies if you've answered this before (I didn't remember seeing it in your chronic health tag, but I could have been incredibly dumb and missed it), but have you watched Jessica Kellgren-Fozard's videos on youtube? She's got videos about being misdiagnosed and then finally being diagnosed with EDS, amongst other thoroughly delightful things she does on her channel. Her videos seem like something you would enjoy.
I am usually one of the people promoting her videos here on tumblr haha. Love her straw video, it saves me so many spoons. And I saw that she did an updated video today about finally getting her proper diagnosis, I haven’t had a chance to watch it yet but I fully intend to :D
I am also 100% here for her lesbian retro vibes, and I adore her wife Claudia so much. I feel like she and ETD would have a lot to talk about lol.