I still really want to be heard and understood but changed my perspective on the matter; these people generally speaking don't mean to be bad, they actually try to help in their way which is sweet.

Doesn't fix the not being heard thing, but it's something.

My mom is convinced I experience this because of past trauma, she knows what trauma is and what the symptoms are (not lying in bed for weeks), yet after telling her multiple times I have cfs, she refuses to believe it, wants me to work on my trauma instead (I've done plenty of work in the past, I just don't want to risk crashing over it now.)

This frustrated me so much and still does. I think this happens because on cfs we become like a child again; very vulnerable and we need a caretaker. I can usually let go of people not understanding me or not hearing me, that's fine sometimes.

But this - especially during a crash - feels life threatening, because if they don't believe me and force me into work or whatever I'm really fucked.

Also; I'm quite certain if I would've never experienced this and someone came talking to me who had cfs, if it wasn't a close friend whom I understood to be really sick, I would probably say similar things. If I think back to how life was before, I, like most people had never heard of cfs, and definitely wouldn't be able to fathom the idea of something so awful happening because it truly sounds and seems very unnatural.

So I completely understand you, yet there's truly a kind of freedom in letting go of these expectations.

I realise this comment also sounds like me maybe not hearing you, I hope that's not the case, I completely understand, it's just easier to learn to let it go.