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'm literally never fully comfortable. Even with drugs, my special pillow and laying just right I can get down to a 3/10 pain wise. And that's without decadent luxuries like going to the bathroom, which rockets everything up to 6/10 for the next hour.
Right there with you, goin' on 20 years of this bullshit!
I'm not chronically ill in any debilitating way. Do people actually say this shit? You gotta be incredibly ignorant right? This is unfathomable to me
No this is real and happens all the time.
I have neuropathy and it just literally does not matter what I tell 99% of people, they'll almost all say I am lying and lazy and get angry when I tell them 'ok, I can try to go out and do this physical thing, but I'll be in screaming pain after an hour or two and need to rest for the next two days.'
Last two girlfriends I had literally did not give a shit, kept pushing me far beyond the limits I told them I had and then got angry at me about it.
One refused to stop going on rides at a county fair so that she could let me sit in her car before my phone died. I ended up writhing in pain outside her car for 2 hours before she noticed.
Another had me walking around for about 8 hours 3 days in a row for a convention, after we both agreed I could only do about 2 hours a day. Had to take a week off work to recover. So I paid for the whole outing, then lost a week of work pay, and the net result was she was angry I ruined the whole experience for her.
People do not fucking register non obvious illnesses. Even mental illnesses, at least among younger people, now have better social acceptance than chronic pain.
You can tell people who tell you they love you that what is easy for them is excruciating for you and they don't understand why causing you to be in excruciating pain and then belittling you about it causes you to be angry.
I finally got SSDI and just live alone now, cut off contact with everyone. Never been less stressed out, haven't had this good of at least mental health in over a decade.
Don't have people constantly shaming me and guilt tripping me. So, so much less stress.
:( that's awful, I'm glad you cut those people off. Hopefully you find better someday
I hope you find better people in your life, my partner is also dealing with undiagnosed chronic pain (we're going through appointments still), i can't say i understand what you feel but i know how it affects her, and that's probably pretty similar. You deserve better, hope you find relief and better friends.
It’s not unfathomable to me at all, unfortunately. For so many people, empathy is seen as weakness and any issues others deal with are bullshit sob stories worthy of contempt… unless it happens to them!
It's not just that, I'm certain many people genuinely don't understand. Being unwell 24/7 is unfathomable to them, as they've never experienced it (and hopefully never will). That's not an excuse for bs behavior though.
Definitely. Genuinely not understanding, coupled with a negativity-first mindset where people’s default position is cynical contempt for others, is a hell of a combination.
It’s almost a guaranteed attribute for the conservative MAGA types I know. Just assume somebody is a lazy ass working the system for that sweet disability check unless proven otherwise.
I have a chronic potentially disabling condition myself, and while the fatigue and mental effects are rough, thank goodness it’s not straight up constant pain.
Yeah it happens. I've got an auto immune disease. When I get any sort of bug, I'm sleeping 20 hours a day. Many people, my own wife included, comment on how must be nice to sleep that much.
I'm literally sleeping that much because I don't have the strength to do anything else
Is it your first day on this planet? No "/s" because I'm serious. Unless you've been so holed up and out of touch your entire life until this point, human ignorance is constantly on display.
I guess I expect general empathy and respect from others idk? I wouldn't think this sorta of thing would be unheard of but I also wouldn't expect it to be the norm. I guess I imagined it would be relegated to a small amount of shitty people.
To answer you though I probably am out of touch, I don't go out much except for class and in those classes I typically don't talk to people. I have a few close friends I have had for years and haven't bothered making new ones.
Don't get me wrong though I have experienced general shittiness because I'm autistic but throughout most of my childhood I managed to just be ignored rather than antagonized.
I guess I just expect better of people idk, or maybe a part of me believes that the severe ignorance I see online is just fake or exaggerated.
I’m experiencing just a minor pain surge from stress right now, and it feels debilitating. It’s hard explaining why a headache or backache takes your out of commission. I live my life at 3/10, so a two point increase makes life REALLY hard.
Not only am I in pain, I'm also feeling guilty about it and the fact that I'm resting so much. I really try not to, but it's almost impossible.
Mornings are the worst for me and I still feel half dead even after 10 hours of sleep (or more). I need about one or two hours to even be half awake. It's hard to open my eyes at first, let alone move. So I begin my day at noon and end it at 5pm or so. And I need breaks too, can't skip those.
This also limits my ability to get better, as I often don't have the energy to go to all of my doctors appointments. I force myself to go for a walk and do the exercises for my back, but everything where I have to leave the house for more than 30 minutes is difficult and often impossible.
For me, the worst part is, that I can't sit. I can do it 5 to 10 minutes and then the pain ramps up. You can't do shit without sitting.
I almost got arrested for punching someone that said that to me
Amen!
Just got diagnosed with lupus and now I have to explain to people that I have to take extreme precautions when out and about because the sun can fuck me up super bad.
i've never been to prison, but have to think being in the hospital is worse. not only are you confined, but also in constant pain. in some cases not knowing if you'll ever get out
What about those in prison who are chronically ill or people who caught something while being stuck in there? Surely they would have it far worse than those ill people in a regular hospital who, technically, can refuse treatment, leave, and even go elsewhere for treatment. That's not considering the support structures that people in prison are given/allowed, vs support structures generally present in a hospital setting.
Your feelings of being trapped are valid. The frustrations of a less than ideal physical existence are heard. Being ill in any location truly sucks. But depending on the location, you may have more or less freedom and opportunities available to you.
The fact that people have the energy to do anything is such an alien concept that people who are regularly productive and getting things done without it being some "big deal" to them... Honestly seem like they have super powers to me.