Chronic Illness
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.
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Sorry I’m late. I’m really wouldn’t read the cleveland clinic article which is not a very good source.
I have POTS. The simplest way to accomodate for your partner is simply to listen what she needs and be mindful about what tends to affect her condition. Also while some treatments help some people with POTS there is no widely recognised (FDA-approved treatment) so dont expect her to get better, it’s also usually a lifelong condition. POTS is a very common condition in Long COVID, so if your partner had COVID 6 months or less before her POTS started, she will fit long COVID diagnostic criteria too. The POTS label will be more useful than the long COVID label, as long COVID is a label for any chronic illness triggered by COVID.
The most important thing for you to know is POTS primarily affecting women, and it is not regularly taught in medical schools. Some medical doctors, especially overworked or patriarchal ones, will likely not take the diagnosis seriously and blame her illness on “anxiety” or “functional neurological disorder” (the modern euphemism for hysteria), so make sure to steer clear of those doctors if you do encounter them.
Here’s a resource to learn more about pots: https://me-pedia.org/wiki/Postural_orthostatic_tachycardia_syndrome
If you want to get into the science, recent research suggests POTS isn’t a very useful distinction from regular orthostatic intolerance. So the POTS label may not stand the test of time. The illnesses included under the POTS label are likely not correlated with tatychardia, which is what the entire idea the clinical concept of POTS is based around. Hopefully, further research will shine light onto this. https://mecfsskeptic.com/the-problems-with-pots/