Just had the worst doctor appointment I’ve had in recent years with my primary care doctor, who insisted that hEDS is just a joint problem. Wouldn’t listen to me about my GI issues or order any tests, didn’t seem particularly interested in my family history of cardiovascular issues, just talked over me and ran me through mobility tests for the millionth time to say “ah yes you are hypermobile.” I was able to convince her to try ordering genetic testing through Invitae, but everything else was godawful. Been having pain in my back between the shoulder blades because a rib is out and I can’t get it to go back in, and she doesn’t want to get an x-ray to check on that or track the scoliosis in my back. I tried to tell her I feel like my pain is escalating so quickly, along with having so many new problems ramp up, that I feel like I’m dying at 25. And she told me all I need is physical therapy. When I said that won’t fix the other issues (cardiac, GI, etc) she said “that’s because it isn’t fixable” and talked about how she had a different EDS patient in their 60s so it’s “silly” for me to have this anxiety about my own quality of life. I feel so incredibly defeated with all of this. It’s so hard to get people to listen. Glad she might be ordering the genetic testing, but now I’ll likely be seeking a gastro on my own and/or ordering tests I’ll have to pay out of pocket for online. So tired of having to be the expert in the room when I see doctors!
Posted by kmrankey at 2022-06-14 20:33:44 UTC