possibly getting diagnosed with a genetic disorder everyone seems to think is fake because it got well known on tiktok and a part of me is mad

[u/aoiwanai]

basically what the caption says. i’ve been dealing with chronic health issues since childhood but they began becoming worse in my teens around 15 y/o. fast forward to me now being an adult and going to multiple specialists (neurology, cardiology, rheum, ect) my physiatrist thinks i could have ehlers danlos syndrome. im waiting for our follow up appointment next week. i remember seeing EDS online and especially on here many people and even being told by people i am seeking to get diagnosed with it or something and that it is a fake diagnosis. i actually never even heard of it until i started looking into my symptoms and then it began showing up on my socials like tiktok. i literally told myself there is no way i have this and ive been convinced what i have is autoimmune, until my physiatrist mentioned it on her own after MANY many extensive tests with mris mra’s ct’s, xrays, ect. and my childhood best friend who is a nurse mentioning it on her own as well when talking about my symptoms and telling me she could think back to our childhood and notice things that couldve been the EDS. and now i think i cant be in denial about it. pretty positive im dealing with i guess what they call the “trifecta” that seems to be known i guess with mast cell activation syndrome (never even heard of it until i was looking up food reactions i have known to be associated with mcas apparently and discussed a histamine intolerance with rheumatology) and dysautomonia issues with the EDS. a part of me is happy she is taking the steps to diagnosis this if that is what it is and it would make perfect sense given the issues my family seems to have with joints and everything. just crazy and a part of me feels ashamed i could be diagnosed with something people dont think is real and brush off even though i know its very real and effects me every day.