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I guess I’d rather have constant “feeling better?/are you ok?” Than constant “oh I heard about this on Facebook! You should try it even tho it’s obvious bullshit! And if you say no I’ll be offended, so make sure you phrase your reply with adequate appreciation for me sharing this gem of information with you!”
I wish I had something other than chronic daily headache with migraine as a “main” disability. Everyone thinks their dumb little regression to mean trick is a cure (for the two headaches a year they get), but like even if it did work sometimes, I’m not, for example, sitting with my hands in ice water all the fucking time, because that’s also painful..?
I’m glad nobody tries to troubleshoot my back pain or other medical issues.. they just get sad for me and ask if I’m ok when I wince or whatever. Like no, but I’ve been dealing with it for over half my life now, so just leave it, please?
I think it depends on the vibe, for me. I've experienced it before where the "feeling better?" questions are sort of like "the last time I asked you if you wanted to do xyz thing, you weren't able to because of your chronic illness/disability. Are you magically not disabled so that we can do the thing now?". That's a different kind of disheartening than the cure suggesters, but not better or worse, in my experience — just different.
It sucks when people who you thought were friends act like they're inconvenienced by your illness. And don't get me wrong, it definitely is an inconvenience if a friend is no longer able to hang out in the way you used to, but the primary "beneficiary" of this inconvenience is the one who is actually chronically unwell. I lost a couple friends when I became disabled, due to this. The people who are my friends have worked with me to find ways to adapt (such as running games night at my place when I can't travel), which makes things easier in that I feel like it's me + people I love vs. my illness. People who give the vibe of "ugh, you're still ill" makes it feels like it's them vs. (me + my illness).
I realise I haven't meaningfully engaged with much of what you have written in your comment, but that's largely because I don't have much to add — you capture the frustration very well and unfortunately I can relate too hard to the silly nonsense cure suggestions.
the last time I asked you if you wanted to do xyz thing, you weren't able to because of your chronic illness/disability. Are you magically not disabled so that we can do the thing now?
This is what people don’t seem to get. I feel more and more guilty with every conversation like this.
No, I don’t feel better, but I should, apparently. And that’s my fault somehow. I’m not making that up or unnecessarily putting things on myself – it’s hard to come to a different conclusion when people get progressively more disappointed the more they talk to you. When you feel like a medical depressant. I mean that literally.
Every time I’m asked this, I feel like I should feel better, and when i don’t, I’m letting them down by not being able to do the thing.
Eventually I just can’t take it anymore. I’m letting everyone down by not getting better, so not only do I feel awful physically, but also mentally because I’m disappointing everyone I know. And god forbid I meet new people who I have to explain this to again.
I don’t want to meet people anymore, because I have to go through the whole thing again, and re-explain how it’s not going to be fixed by a diet, and yes, I know all the cures and everything. It’s exhausting.
e: clarification
You capture the vibe extremely well — the way you've explained it here makes me realise that when people ask if I feel better (yet), it low-key feels quite victim-blamey? Not in their intention probably, but in how it feels to regularly receive those comments. It makes me feel broken on another level beyond the disability.