beccarawr

I have a friend with EDS and she's constantly struggling due to it. I know it's widely considered an 'invisible illness' (we bonded over my Crohns disease and some of the similarities) so what ways have you found useful for coping with people who seem to overlook or not believe your condition?

I was diagnosed with Crohns very young and when I switched to an adult doctor he actually tried telling me all the tests I had done (by a good hospital and NUMEROUS INTRUSIVE tests) were just wrong. He didn't listen to a word I said and wrote me off completely. I just remember feeling very angry and then very sad. I've had a few similar hospital trips as well.

I'm glad to hear that you have doctors and friends who listen to you and support you. It's so hard to find them with illnesses such as EDS. Good luck and good vibes being sent your way for dealing with it! Wishing you more good days <3

What's the most frustrating customer experience you've dealt with?