Does anybody else live with a rare disease? (beehaw.org)

submitted 2 years ago by sky@beehaw.org to c/disability@beehaw.org

5 comments fedilink hide all child comments

I have a rare muscle condition, to the point where I feel like I have to be careful where I even mention it because it might make me identifiable. It's pretty lonely sometimes because of the subset of people who have this condition, most of them don't make it to adulthood and I really don't have anybody to discuss shared experiences with.

Anybody else here in a similar boat?

you are viewing a single comment's thread
view the rest of the comments

[-] Kindajustlikewhat@beehaw.org 3 points 2 years ago

Mine isn't as rare but I've never met anyone else in real life who has it. And for 26 years straight I suffered it and saw multiple specialists, none of which ever even considered or knew about my actual illness. I have cyclic vomiting syndrome.

this post was submitted on 28 Jun 2023

7 points (100.0% liked)

Disability and Accessibility

910 readers

2 users here now

All things disability and accessibility related, and advocacy for making those things better.

See also this community's sister subs Feminism, LGBTQ+, Neurodivergence, and POC.

This community's icon was made by Aaron Schneider, under the CC-BY-NC-SA 4.0 license.

founded 2 years ago

MODERATORS