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.
Be excellent to each other
Absolutely no ableism. This includes harmful stereotypes: lazy/freeloaders etc
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.
No denialism or minimisation This applies challenges faced by chronically ill people.
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.
The worst is when a specialist confidently repeats known false information to you. Like, easily debunked by the most cursory glance at a state health department website type stuff. I have started bringing print outs about my illness from reputable sources to appointments with me just in case.
The worst part of being sick is not my symptoms. It’s having to interface with the healthcare system.
Yep this is awful. Some doctors don’t know how to keep their ego in check.
Makes you really appreciate the ones who admit they don’t know. Though they are few and far between.
Yep. I treasure every medical professional who has been honest with me about not knowing something.
Back when I was first diagnosed I picked up some kind of bug. Nothing serious, but I hadn't learned what to do since I'd been put on a load of complicated sounding meds, so I went to the out of hours GP.
I explained about my illness and meds, and gave him the symptoms of the current illness, and he just gave me a blank stare. After a short while, he asked my wife what she thinks we should do 🤷🏻♂️
Plot twist: Google's AI had a 'hallucination', and invented a brand new illness. But don't worry, it can be treated by huffing chlorine gas.. /s
I'm kind of bewildered about how the diagnosis process went. You self diagnosed without consulting your gp? Because in my understanding you go to your doctor to be diagnosed.
Of course you can bring up your ideas as to what it is, but it's a bit tall if you come up with a diagnose and you're not correct. (I thought I had frozen shoulder once,I didn't).
If you go symptom shopping and WebMD yourself to a diagnosis, it's not per se what's the matter with you.
If it's something very obscure it's not weird for a general practitioner to have to look it up, he's not a specialist. That where the books are for. He's probably looking it up in order to respect your line of thinking
Not to say there isn't any bad gp's out there but please don't think your methodology and research is better than a professional is just mad. A diagnose is reached through consensus, and if that isn't reached you don't have said illness.
People don’t usually have the same doctor for their whole life. So no matter how long you have been living with an illness, you do find yourself seeing people you have never met before and sometimes having weird experiences just through probability. No one is “symptom shopping” here, we’re just describing a common experience, which is that it’s a bit jarring when you have a health problem and the doctor you go to see for it doesn’t know how to help you with it.
I do get that. I mean your medical file gets ported to the new doctor. If he's looking it up in front of you then it's indeed a bit unprofessional.
