frustrated with insurance and test

I had been trying for almost a year to get genetic testing for EDS so I can build up a case to apply for disability (ssi and ssdi in the US) again and also for my own peace of mind. It took me this long not because doctors didn’t believe me but because my insurance and me being broke makes everything take longer.

I have insurance through the state so it’s a cheap underfunded, understaffed red tape bureaucracy that makes profit on denying coverage. after months, I finally got to see a geneticist and testing (test took 2 months) and it came back negative. Im so frustrated because a positive would have helped me with my case and I realize that not all cases of EDS can be detected in testing but getting ssi or ssdi is difficult and you have to have a lot of evidence/proof.

I ‘know’ I have it but I have to convince the US government (a very ableist government) im unable to work and proving that when you’re young and your disabilities are “invisible”, even with a lawyer is hard.

[Batty1]

Hi Kara

Does your doctor say you have EDs ? What are your current health issues ?

[Hidden in reply to Batty1]

I haven’t been formally diagnosed, it’s been just me diagnosing and treating myself the last few years but all the doctors i’ve spoken to this year think im right. i have lots of health issues connected to EDS (ehlers danlos syndrome). why do you ask?

[Batty1 in reply to Hidden]

Curious since you didn’t mention being diagnosed and thats big hurdle to clear getting a “diagnosis” from a doctor based on testing in order to get disability.

Has ANY doctors or specialist done any other testing beside genetics that was negative that might help?

[Hidden in reply to Batty1]

I got my thyroid tested months ago and was diagnosed with hypothyroidism, therapist thinks i’m autistic but other than that, I dont have any other formal diagnosis’s for anything else besides depression and anxiety. I didn’t have health insurance for a few years so that’s why I dont have many others. I started building my case this year by taking advantage of the health insurance i finally got again. I was hoping the test would give me some evidence besides my word, IEP and self diagnoses.