like yes the awareness is helpful but it’s making it really hard to get a diagnosis -sincerely a girl who thought she had pots at 16 bc TikTok (I do have pots but there’s no way I had enough symptoms to be diagnosed at 16)

14

Yup. Pots too as #1 said. Like it makes me wanna be like “I was diagnosed before it was popular” but that’s unfair to people who actually do have pots and we’re diagnosed more recently. Covid did trigger it for some people, so the prevalence has increased. And tiktok is a place that encourages self-diagnosis based off of things that are not the actual symptoms and criteria. Both are true and it just kinda sucks.

14

Doctors kept trying to diagnose me with EDS because I have unexplained joint pain despite the fact that I have none of the other symptoms of EDS

7

I literally didn’t even think I could have POTS or MCAS even tho I have the symptoms till I saw my Dr and mentioned how I was feeling and she’s like “okay so you have hEDS, I’m sending u to my colleague to get you tested for MCAS and POTS 😭

1

I’ve had 2 different geneticists reject my referral because they’re getting too many eds test referrals and they don’t have the manpower…

1