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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”.
Did your post/comment get removed? Before arguing with moderators consider that the goal of this community is to provide a safe space for people suffering from chronic illness. Moderation may be heavy handed at times. If you don’t like that, find or create another community that prioritises something else.
founded 5 months ago
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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.