Oh my god. Outrageous. It took me decades of gaslighting to get my diagnosis of HEDS, that I was born with. I finally had to do the research myself, at 43, after years of medical abuse. I still had to pay these bastards for their malpractice. One even told me: “Oh, I heard about you.”
Whew I know the feeling. I have EDS and doctors thought I was just med seeking. My POTS was written off as anxiety. An emergency room said I was faking a seizure so they called a social worker in to see me once 🥴
Oh lord. I’m sorry. And insurance companies are furthering the abuse. I’ll die screaming about this. Trying to make people aware. This is not a rare condition, it’s just rarely diagnosed, and it affects every organ. In the age of information, there are so many willfully ignorant doctors. A travesty.
We both have the trifecta. It’s a lot. I feel you.
🫶🏽
This past year, I’ve had to travel to find knowledgeable doctors. I’d be more than happy to share the information that I glean from them.
I found a doctor in Phoenix so it’s just a matter of getting there and the cost. I’ll probably have to use my HSA unfortunately ugh
I see. There are a few who do virtual and can help with POTS and MCAS. I hope you’re getting the help you need.
Thank you!
Exactly. I never understood the “rare condition” thing.