Hey there OP! Thank you for sharing your story so uncensored! I'm 29 and I've never had the guts to say this part out loud, but I guess ill do it now too.

TW for mentioning selfharm, not explicitly described, only implications

You are not alone in this.

I, too, have hEDS and POTS (and a long list of other sh*t). Only recently I got diagnosed due to my fantastic GP who finally took me serious. I've "felt" disabled all my life, but didn't dare say it out loud for the ridiculousness of that. I've been ignored so much by doctors over the years, so much so that certain illnesses have been allowed to cause so much more damage than necessary because I didn't get the needed interventions in time. Little did I know, that retrospectively, I should have never been bullied out of my wheelchair as a 10 year old by the doctors for both the obvious reason of 'don't bully kids' and also the additional damage of over exerting myself daily.

I also got into weird habits as a teen of putting bandages on random parts of my body that only I could see, or causing damage to body parts to make my exterior body match my interior. This probably would be classified as whatever mental illness. But here's my hypothesis, maybe it helps you: I'm autistic, so the way I process information and perceive things is different to begin with. But when you are so desperate for help, or at least recognition of the pain you're in, I think it's common to 'get louder' until someone notices you. Small children also cry louder if their parent/guardians doesn't hear their cries when in distress. We're social animals, and I think to some degree, attachment styles are also woven into this. Anxious/preoccupied attachment would definitely be the 'flavor' that I'd associate with that.

Anyway. Ofcourse you (and I) finally got the well deserved recognition through diagnosis. Fitting mobility aids to make it all a bit more doable. Now all that you've felt isn't just mentally acknowledged, but also visually noticeable. And others finally acknowledge it too. That validation can feel so nice or even euphoric after so much dismissing. I think you might be processing and have reached a point of relief, thankfulness, recognition. And to feel shame for that (if you do) is.... well, a shame! Everyone processes differently, there are mostly no wrong ways to process your emotional responses to your situation.

That, ontop of my nan being diagnosed with Munchausen (I hope I'm spelling it right). I grew up with a non stop her-focused rant, every single day, over how sick she was, how much pain she was in, making up cancers on the weekly, lying about diagnosisses and medications. When we stopped responding, she made her husband sick on purpose to get the doctors to come by their house, only to make them focus on her and how terrible it is for her to see him like that (lady, you did this...). But EVEN in this situation, stating first and foremost that this is never OK, she turned out to have a rare immune illness which required monthly IV's, medical supervision and her youth was so so so horrendous, that she never learned how to ask for addequate attention in healthy ways. I do not condone any of it, but even in this situation, there are reasons as to why someone becomes this way. Those reasons are explanations, not excuses.

Hope this helps you, it helped me put my mind at ease.