RitaFires - I've bounced around a bit, different GPs and rheumatologists. My first rheumy was great. I'd had a massive allergic reaction which turned into psoriasis everywhere (insect bites) & then joints started swelling. Was diagnosed with psoriatic arthritis and DMARDs which after 2 years sorted me out. But my pain continued and he was perplexed and sent me to another rheumy for a second opinion, that one diagnosed EDS straight away, but didn't write it down... I went home and googled and was quite happy that EDS was a good fit (I have bowel, skin and swallowing stuff going on too) but was then treated like a mad woman because the diagnosis wasn't in my notes, he'd written down all the symptoms and about my hypermobility and subluxing joints but not actually EDS. I then thought I was mad because I couldn't work out how I'd heard about EDS (this was about 8 years ago so it wasn't as heard of then) if he hadn't said I'd got it. It was gas lighting in the extreme and because he immediately discharged me from rheumatology after diagnosis I couldn't go back to question it and the GP just raised eyebrows at me when I tried to explain.
Anyway (there is a point to this which relates to your story) the original rheumy left by the time I managed to get referred back, they all treated me with disdain (hence why one got told to go fuck themselves) and I approached Dr Kazkaz who runs the EDS clinic in London, the only issue was that I needed a referral either from my Rheumy (that wasn't going to happen, I'd been diagnosed with fibro by then so they were happy that they knew the cause of my pain, plus I made up stuff didn't I?!) and my GP point blank refused because she didn't feel comfortable doing it (maybe she thought she was encouraging my delusions). I told them I'd pay for them to write the letter and I would be a private patient with Dr Kazkaz but they still wouldn't do it.
Fortunately I was then very lucky, and my beady eyed OT had twigged with some of my symptoms. We checked things like my skin (soft and stretchy), feet (flat with those bobble things- can't remember the name), blue sclera eyes etc And we wrote these down. I then saw a new rheumy, who was young, and he went through the list, found other things as well and diagnosed hEDS but with classic crossover.
I'm just wondering if writing a list might be a way to go for you? I found having a list which I made him work through and check each point definitely helped me to stay on track and feel more in control. Sorry, that was long and rambling but I hope it helps a bit to explain the private process issues I had.
Reading that back, it's no wonder I've got issues with denial is it...