Solidarity. It’s rough. Hang in there. Do whatever you can for the pain. Even if it only helps a little it’s better to try
5
Anonymous3w
honestly I was really close to the most final form of giving up, but found a great sports medicine orthopedist who knows about EDS and I can "cosplay as abled" most days now
4
Anonymous3w
Yes
2
Anonymous#13w
How do you deal with it I feel like giving up all the time.
3
AnonymousOP3w
Therapy has helped me and look into peer support groups and programs. Connecting with people that have lived experience has helped me a lot
9
AnonymousOP3w
It’s so hard but it’s worth it. I recently changed to a PCP that specializes in helping patients with EDS, POTs, and Lyme Disease. It’s a night and day experience. They are more HAES too
6
Anonymous#13w
All doctors I’ve called and asked about it they ask me what it is.