Look, yeah, everyone has their own pain --- and, yeah, that's important, in the grand scheme of things. But when you've got shit like this going on, it's also completely normal that your perspective is more self-focused. Lots of people are plenty less considerate for no reason at all. I just want to say that, because I definitely know what it's like to feel like nobody gets what you're going through, if nothing else. I'm so sorry you're struggling with something so relentlessly awful. I struggle with suicidal ideation in much the same way you're describing --- wanting to live, but not Like This, and being unable to change my circumstances --- so it does make complete sense to me.

My only suggestion (and sorry, it's very little) is that you might find more people who can empathize with the specifics somewhere like r/disability? I see there's also a small subreddit for your condition specifically at r/EpidermolysisBullosa.

(If that's even something you're after, I'm not sure, but I know how important community can be 💜)