this post was submitted on 10 Dec 2024
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Chronic Illness
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A community/support group for chronically ill people. While anyone is welcome, our number one priority is keeping this a safe space for chronically ill people.
This is a support group, not a place for people to spout their opinions on disability.
Rules
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Be excellent to each other
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Absolutely no ableism. This includes harmful stereotypes: lazy/freeloaders etc
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No quackery. Does an up-to date major review in a big journal or a major government guideline come to the conclusion you’re claiming is fact? No? Then don’t claim it’s fact. This applies to potential treatments and disease mechanisms.
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No denialism or minimisation This applies challenges faced by chronically ill people.
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No psychosomatising psychosomatisation is a tool used by insurance companies and governments to blame physical illnesses on mental problems, and thereby saving money by not paying benefits. There is no concrete proof psychosomatic or functional disease exists with the vast majority of historical diagnoses turning out to be biomedical illnesses medicine has not discovered yet. Psychosomatics is rooted in misogyny, and consisted up until very recently of blaming women’s health complaints on “hysteria”.
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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.
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.