I can completely relate to your experience, especially it taking a toll on mental health. And that's crazy--just because something doesn't have a cure, doesn't mean it can't be managed. That makes no sense. I'm so sorry that happened to you.

A few things just in case it might help someone here: I corresponded with someone on the EDS support group on the website Inspire. (I won't post it because sometimes I've done this on other forums and my post gets blocked, I guess for advertising? But you can easily Google it), and they mentioned they see Dr. Alexandru Barboi at Endeavor Northshore in Illinois. He's a neurologist and treats POTS. I've heard positive things. It might not help with the EDS directly, but I've seen his former colleague and she screened me for EDS, so they may be able to help with coordinating care.

Lillian Holm is a PT in Evanston, IL, who specializes in hypermobility. She offers online consultations for out-of-state patients.

EDS.clinic is a new telehealth clinic that just opened in February. I don't have any experience with it, and it's very start-uppy, but the co-founder has EDS, which seems promising. I'm on their waitlist.

I have been to the EDS Clinic in Jacksonville, and unfortunately I didn't have a positive experience. My workup/consultations are currently on-going, and it's been a year because there's been a lot of misinformation, poor communication, and lack of follow-up regarding scheduling anything that came after my initial in-person evaluation. I've said elsewhere on this site that I don't think they have bad intentions; I just think they need more administrative support because EDS patients are all complex and require multiple consultations across various specialties.

It was valuable to get a diagnosis and they offer genetic testing, if indicated. So it is worth it if you need a diagnosis since it's so freaking hard to find someone willing to go through the diagnostic criteria. I hope that the others on this thread who have planned appointments have a more positive experience than me. Hopefully, they've been able to fine-tune their protocol.