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.
I found black mould behind the wardrobe in my bedroom this week (boo!), but the leak that caused it was fixed a while ago, we just didn't realise how bad it had been (yay!). I managed to move some furniture and clean some of the carpet*, and pumped the tyres up on my wife's car and my motorbike.
If I can get enough energy to actually get out on the bike now, I'll be laughing 😅
*My wife's been cleaning the mould because I shouldn't be near it 👍
If the corset brace continues to be as effective as it has proven over the last 3 days, my life is flipping 180 degrees, and it looks damn promising. Last night, after working on my bedroom lab all day, I set my goals to target the end of this year. I want to finish several projects and try to document them to show what I've done with myself and some of what I have learned in the last 10 years. If I am still in good enough shape by the end of the year, I will get my license, a car, and a job. I haven't worked full time since before the crash that disabled me 2/26/14, and have not worked part time since 4/17. So, a little exciting for me. I always felt so very close to okay but it seemed to always be just out of reach. Who would imagine that all it took was a cheap $20 brace strapped around my ribs; certainly not 13 of the most reputable neurosurgeons from San Diego to Los Angeles, a DO, a physical therapist, or a half dozen pain specialists over the last 10 years.
i finally convinced my doctor that I'm in so much pain now that i can't sleep or take care of myself properly. she referred me to rheumatology to get tested for Ehler Danlos, and started me on 2 medications which have cut my pain in half in just a week. I'm starting to have hope that I'll get some answers and treatment!!