this post was submitted on 04 Mar 2025
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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

  1. Be excellent to each other

  2. Absolutely no ableism. This includes harmful stereotypes: lazy/freeloaders etc

  3. 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.

  4. No denialism or minimisation This applies challenges faced by chronically ill people.

  5. 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.

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cross-posted from: https://lemmy.blahaj.zone/post/22601408

Five years on from March 2020, millions of people still face debilitating symptoms, with huge repercussions on public health and productivity. But politicians are starting to pretend the pandemic never happened.

Article “Highlights”The unwillingness to discuss chronic illness in these conversations is especially concerning when combined with the scepticism faced by long Covid patients, who have to advocate for themselves so that medical professionals, employers and loved ones understand the gravity of their illness. Many report beingdisbelieved; shockingly, the then prime minister Boris Johnson scrawled “bollocks… this is Gulf War Syndrome” next to an October 2020 memo discussing long Covid and its symptoms. Anyone posting about their experience online is likely to be accused of lying, or being lazy, or in the pocket of big pharma. “I certainly think being disbelieved is one of the biggest traumas for Covid patients,” says Sinclair. (This distrust will be familiar to patients with myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS, who have had their symptoms ignored or dismissed for decades. There is definitely overlap between long Covid and ME/CFS, says Sinclair, but they need to be differentiated.)

All of this conspires to make long Covid patients feel invisible, voiceless and forgotten. On top of the chronic pain and unpredictable recovery they face, the effect can be devastating to individuals’ mental health. Worrying numbers of long Covid patients report depression, anxiety and insomnia; in a 2022 survey, 45% of the nearly 200 patients who responded said they had contemplated suicide. “It’s a really awful illness,” says Heightman. “It’s not uncommon for us to have an appointment with someone, and them to share that they feel suicidal. It’s a particularly difficult illness to cope with, especially in people who were previously well, and the shock of losing their health and the uncertainty about the future is intolerable.”

Even though we are seeing fewer headlines about long Covid, previously healthy people are still contracting it, with each successive infection increasing the risk. “We sometimes will see someone who’s had Covid one, two or three times without problems, and then on the fourth time, suddenly they’ve got long Covid, and that makes them ill for a long time,” says Heightman. More disturbing still are the risks associated withchronic inflammation for long Covid patients, even if they have outwardly recovered. “It’s likely to age you,” says Sinclair, “so it’s going toshorten your telomeres, and therefore increase your risk of early death. It’s also going to increase your risk of any inflammatory condition: cancer is a high risk; we may get heart disease, diabetes, dementia. There’s a huge knock-on in every body system from long Covid.”

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