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 healthy people to share 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”.
Respect the Group’s Purpose. It’s a support forum for people with chronic illness to vent and share and talk together. It’s not a place for healthy people to come and give their opinions.
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.
I was seeing a neurologist for bad scoop-my-eyes-out-with-a-spoon migraines.
And along the way got Fibro.
Neurologist did test me for like everything... 3 MRIs.
Good news it isn't MS. Or Brain cancer. Or a slipped/compressed disc.
Then got ghosted when Covid happened.
Was only a gabapentin Rx filler anyway after that point.
Now my Rhumo just fills my Bacolofen Rx. (yes that's a MS med lol.)
I'm still in pain all the time and want to die. Oh well. 🥹
I was twenty six months of migraines. Never got a diagnosis. I just got better over a week all of a sudden. Four triptans (nausea on one), gabapentin (did nothing), indomethacin (confusion, nausea), maxeran (induced panic attacks), candesartan (nothing), Botox (fainting, sort of helpful but diminishing returns and $$$$), propranolol (nausea), topiramate (nothing), CBD/THC (hallucinations, no pain relief), and one other that I forget the name of. Orange tinted glasses kind of helped.
Yeah, I definitely have that. But as you do with good reason.
Our medical system is built to handle common cases that can be diagnosed and treated in less than 15 minutes.
I've entered a Long Covid study where I will apparently be visited by half a dozen "experts" to see if that will help. My wife and I are already apprehensive about this and poised to kick anyone out of the house who doesn't seem to know their shit and wants to prescribe harmful treatments.
The game You're just imagining it perfectly captures the whole experience.
Interesting looking game, thanks! I'll give it a go tomorrow.
I have ME/CFS but not from COVID… I got it 25 years ago after a nasty case of EBV / Mono / Glandular Fever. I actually was a bit hopeful that after all the attention from COVID, I would be able to get better treatment. A whole bunch of clinics and resources opened up, after all.
All the clinics and resources I called said they only support long COVID. Same symptoms, same disease, but I'm barred treatment due to politics. That actually made me quite depressed for a while. I considered lying, but decided against it.
Yeah, I actually hate that my GP is calling my issue Long Covid instead of ME. But I guess that opens me up to more options.
I'm even convinced that I had mild ME before Long Covid. But my old doctor didn't believe in that and I didn't know any better.
Often the treatments given to me are actively harmful
Not just treatments, either. Diagnostics. And then they act like it's no big deal when one puts you in the hospital for a week? Like............????