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Story of my Life (I have an incurable lifelong illness)
(lemmy.blahaj.zone)
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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 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.
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.
I'm glad you politely say you're as good as can be and save the vitriol for online. Curse those people for asking after your condition to see whether they can help at all out of concern. What dicks.
That’s rude.
I’ve been dealing with some of these issues since my early teens (yay genetic lottery! I’m almost 40) and most of the people in my life are well aware of that. I had my first surgery for it when I was 17.
I know it comes from a good place, but that doesn’t make it any easier to deal with, when I’ve been dealing with it for years. Decades. And getting the same slap-dash advice for years. Decades. When those people know I have a team of specialists to manage it, and go through what most people consider somewhat horrific management treatments.
This is never the first conversation. It’s not like we snap at someone the first time they show concern. This is usually the final straw after many conversations where it’s not just well-wishing, but constant ‘helpful’ suggestions, after it’s been explained that our condition is chronic and incurable, we’ve seen specialists and had all the tests, tried all the treatments, and are in the management stage – and most conversations have become ‘have you tried this oil/vitamin/yoghurt/diet? Someone on Facebook said it cured their mother’. It’s exhausting and honestly insulting, like we haven’t already tried literally everything out of desperation, and are just too ill-informed on our own illness to have thought of this one common thing that will fix us. Most of us know enough about our illness to qualify for a PhD in it.
After years of that, it becomes hard to stay polite. We mostly still do, but it’s not easy. Venting online with others who can understand helps.