Dealing with the Anxiety of Getting an EDS Diagnosis

I have had the same issues my insurance wouldn't cover it years ago I haven't checked to see if that's changed I think it's important to know which type of not so much for me but for my kids and grandkid

I found a support group after hEDS was brought up as a possibility but before diagnosis and it made everything a lot easier. People in the group understood my apprehensions and were also able to tell me who the specialists in our state are and which geneticist to go to. I was so nervous about the same things as you, especially since hypermobile EDS has no genetic marker, I was afraid I would have to “convince” her there was something wrong. After she took two hours with me, she saw far more indicators of hEDS then I even saw. So long story short… find other EDS zebras in your area bc their experience and knowledge is invaluable!

I did my "party tricks" for my Nero doctor I don't know which type I have insurance don't cover a genetic doctor

In my experience it is extremely difficult. Ask your PCP to refer you to a geneticist. Some you don’t even need a referral. It’s a long and exhausting road and it’s normal to feel defeated unfortunately. Find a support group as well. I hope this helps at least some 💕