I was diagnosed with hypermobile type Ehlers Danlos Syndrome after 25 years of pain and confusion, and it went like this:
Me: I think I have Ehlers Danlos. My symptoms fit exactly and it's been like this since childhood.
Doc: It's incredibly rare and difficult to diagnose, but there's a conference coming up where I can get some hands-on training to test you for that.
Me: Awesome. Can we schedule a diagnostic appointment, then?
Then she went to the training, came back, ran some tests (bloodwork and flexibility), and put the official diagnosis in my chart. If your doctor isn't listening to you or making any kind of effort to treat your actual symptoms, FUCKING REPORT THEM.
That's malpractice. That's failure to uphold their Hippocratic oath. And it pressures them to listen to future patients.
Healthcare shouldn't be a battle. If your doc wants to make it a battle, hit hard and hit where it hurts: their credibility. Fuck, tell them you're gonna make sure none of your friends come to such a shitty office. Leave bad reviews on their website. Do whatever it takes to make the doctors know they need to fucking listen to you.
And always end every conversation with, "I will be checking my patient chart for your refusal to directly address my concerns or symptoms." Mentioning your chart should put the fear of god in them.
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