How can I explain to them what I need from them but not take away from who they perceive me to be? I don't want to become someone they see as disabled or who they need to make all these accommodations for but I want them to understand.
These are great questions. I'm generally really avoidant of relationships so I don't have good solutions! :meh: BUT part of my recovery is working on connecting with others, or staying connected, and I've found this has meant being willing to share a little more about what is going on with me, with just a select very few people. So, this is what has helped me (so far, and again, no perfect solution):
I did talk to a couple closer friends, like one close colleagues, one close friend from the group of friends I barely ever hang out with, and one closer friend from AA. These are the people I've called when I end up in ER. It has helped me not feel further unreal to myself because nobody in the world knows I have these kinds of crisis moments. The trick now would be to reach out to one of them
before ending up in ER (that's oddly super f*cking hard for me!).
Anyway, they don't really understand, but it's important to decide who you think you can clue in a bit, and take it from there. For example, one friend wants to understand, so that makes her easy to talk to. Yet she really doesn't get it...she tries to relate it to her experience of generalized anxiety. I appreciate that she does try to make connections, so I try to go from there and explain that I really don't have generalized anxiety (if I'm in my own space and routine, no triggers, I'm actually super mellow...really not an anxious person, I don't think). But I do have panic attacks around triggers and what I call "meltdowns" which can last for hours or a day or two.
Another friend feels easier to talk to because she listens and actually doesn't try to relate (somehow I appreciate that even more)...she just tries to learn. I've told all of these people that it's really hard for me to reach out and that I isolate because of my stuff. So they don't take me missing-in-action as any insult. Other friends who I am not very close to have seemingly lost interest in me. I don't blame them or hold it against them. I actually can't manage many friendships anyway, so am trying to do a better job staying connected with just a few people.
It feels really important to NOT just contact these people when I'm in crisis but try to maintain a more two-way and enjoyable friendship. That's hard too, and takes conscious effort. But it's super important. So if I'm having a good day I message or call one of them to just meet up for coffee or a walk, or I pick up a treat for them and stop by their house. So I work at being a friend, and also accepting friendship. Again, it's really hard and feels like "work" but I respect that this is just how it is for me and will get easier with "practice."
People who have no connection to PTSD often have a really hard time understanding it. So helpful if you can just explain it in terms of your symptoms and like you said, hope they understand it's nothing personal if you aren't doing well or wanting to hang out. And then notice which friends feel like better supports and respect that. I try to maintain good friendships and mostly leave my trauma stuff out because I'm really in the phase of developing better connections. But to a point I know that also means letting a few people in.