So... I am experiencing very mixed feelings. Today, I had an appointment at my NHS physio clinic. When I made it, I asked why I was being summoned and they told me it was a follow-up for my joint pain (back then I was about to start my HSD/EDS journey). When I got there, the appointment was not with a physio. It was with an Orthopaedic surgeon. My GP had referred me to him after I showed them the clinician's guide from the HSA and EDSuk, and he agreed I show signs for either. I was not ready for this appointment, I didn't have the info to prepare for it appropriately. And now I feel confused and fearful that the path for my diagnosis and recovery is screwed up. This person asked me for my symptoms, and I talked about my pain and weakness and how it's affecting me, as best as I could. He asked me who diagnosed me with hypermobility and I told him that it was a physio from the same clinic that did the Brighton score on me... And then this surgeon said "but for EDS you need to score 8 or more" (I scored less). When I responded to him that it might depend on the type of EDS (among other things), since there are 13 variants, and that maybe I would even have scored differently when I was younger and less injured... He looked at me in the eye, his face completely empty of emotion, and I swear that I felt like I was an alien or something. He started speaking about how he is a Orthopaedic surgeon and he doesn't know about EDS, he knows about replacing knees, and how he's pissed off that the GPs send this type of patients to him when they don't know what to do. Then he proceeded to say that the NHS don't have specialists for EDS so it's not really clear which "pathway" to follow in cases like mine. What is more, he said that not a lot is known about the condition, so there's not really much to do... This doctor then started to call me "son". I was told that they knew now "what my goal was" and that I should give up, that I was not gonna get better. That there is no cure or treatment. That it's how my life is going to be. So I had to clarify to him that getting "cured" was not my goal, that I am perfectly aware there is no magic pill and that I just want to learn how to manage myself so I can get stronger and stop doing things that could hurt me more. That's the only point in which we started to understand each other a bit better. He agreed on that I need to get stronger and said he's got a plan for me. They're gonna give me rehab at their clinic. He's also going to try to refer me to a specific rehumatologist that EDSuk advised me, although "there is no guarantee she'll see me". I am exhausted. I feel like I had to fight for my life, that my reasons have been questioned like I know nothing about myself... I wish at least they could have had the decency to tell me who I was going to see today, so I could have prepared myself better for this battle. This person has made me doubt myself, my hopes to understand what's happening to me, and also about how my future may look like. I truly hated it.
Posted by Geeky Al at 2023-05-13 23:24:48 UTC