#and b) my mum also can only use soft toothbrushes for the same reason

[thedreadvampy]

I'm putting together my approach to go back to the doctor again for the first time in 5 years to have the My Body Has Chronic Don't Work Syndrome Please Diagnose Me

however I'm really struggling to put into words the Why I Want A Diagnosis of it all. If you have a chronic illness (I'm specifically pursuing an EDS diagnosis), particularly if it's one for which there's no direct cure or treatment, what's your reasoning for wanting a concrete diagnosis? All takes are useful - physical impairment/pain stuff is the most useful but anything (other physical issues or neurodivergences) will help me get my brain moving.

I mostly tbh just want to know what it is and what to expect. I want to be able to say 'i have these symptoms bc I have EDS.' when Ido physical activity or start a new job or seek medical attention I want to be able to say 'here's a heads up about what my needs are and why.' and tbh I want. validation for the fact I've been in nearly constant pain or neuro fog since I was like 8 years old. bc even though I know it's real there's a big difference between a set of subjective symptoms and a label. like. feels like every few weeks I discover another thing that Isn't A Problem For Anyone Else and it's been literally 20+ years I've been just Getting On With Things.

(it would also help a lot with my sibling's diagnosis, if either of us can get a formal diagnosis it'll smooth the road a lot for the other one and they're a Lot iller than me)

#red said #my partner who is in med school is gonna sit down with me and workshop a plan of attack #at the moment we're making sure to note down every time anyone observed something that's like Bodies Shouldn't Do That #like if i wake up in the morning and say hoho my shoulder hurts and won't move normal shit #they're like RED PUT IT ON THE LIST IMMEDIATELY #PEOPLE'S BONES DON'T POP OUT WHEN THEY SLEEP #I'm 2 giant post it notes deep a week in so it's going well #also of course some of the more. private stuff that only i can really pick up on. I'm also listing #like where my organs don't work or where normal amounts of friction like brushing my teeth or wiping my arse cause skin tears and bleeding #OH THE GUMS BLEEDING IS A WHOLE THING #always assumed i has chronic gingivitis but a) dentists observe when i do have gingivitis which isn't super often #and b) my mum also can only use soft toothbrushes for the same reason #PUT IT ON THE LIST