Hi there, thank you so much. We have a lot of shared experiences for sure. That's so disheartening to hear you've dealt with such dismissive and rude (at best) providers like that too. It's so infuriating, and just wears us down even more, increases stress, and then everything else too. I'm glad to hear you spoke up though, I fill out surveys too, for the good and the bad. I've had to discuss some hurtful behavior with clinic managers too, it's never fun if they don't seem that surprised either.

I think one post mentioned seeing a rheumatologist, maybe just to see if I could get in to the Mayo that way, vs genetics or general medicine. And since it's genetic, no one takes us seriously, or will consider any fusions or CCI surgery until you have a diagnosis from a geneticist. We will all be ecstatic, when that gene is found, for hypermobile! Yet all others refer to Mayo genetics now, even when they have their own, it's so backwards. I'm sure you've heard the excuses too, saying how expensive genetic testing is, but they'd never say a thing about cost, for more well known disorders. I have a feeling insurance would cover mine, but I would gladly make payments, just for the validation that I know that I'm going to need, if need be. My mom and I have a lot of vascular symptoms too, and meet all the clinical criteria for hypermobile and classical, but it wasn't from a geneticist, so it's invalidated in the eyes of most others, won't even add to my file.

Luckily, I am used to being my own best advocate, since my teens, with 3+ autoimmune disorders, and scoliosis. We hadn't heard of EDS either, until 2 friends were diagnosed a few yrs ago, and they both had to go out east just to obtain theirs. None of the rheumatologists I've seen told me about it, but nonchalantly agreed that I likely had it, and said there's nothing you can do anyways. Unbelievable. All those years, hurting even in college, could have been looking for a PT that would help me, vs others that didn't help at all, and some resorted to shaming, convinced I just wasn't doing my postural or other exercises, because they only saw scoliosis (which was too far gone even for that, 20 yrs ago). I didn't know much about my other conditions then either, but at least I knew enough to know that I was going to have to always put myself first, and to never feel bad about it, and to never feel bad about 2nd or 3rd opinions either.

But it is So exhausting. I have numerous other conditions that are not well managed either, that's why I opted to try for general internal medicine this time. Honestly don't know if I'll have the energy to keep trying any other way, with all the flares I'm getting. Maybe I'll be able to find an agency that might assist in looking into the inequities and discrimination in access to services, at any clinic. After all, accessibility is a human right, not a privilege. Wishing you the best too, and for providers that truly understand, and listen.