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
-
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.
view the rest of the comments
Yup, when I asked my doctor about my neuropathy (or fibromyalgia but he says fibromyalgia does not exist) and what it means he said “nerve pain”. I asked about both and what they are caused by. His reply was really have no idea but so many people have it we have given it these names to shut them up. Even had one brianlet doctor say well you know your pain is all in your head. Um, what the hell?
They have no fucking clue on a real treatment. They prescribe anticonvulsants, antidepressants, and topical pain relievers like shit against the wall to see if it sticks. I am still suffering side effects from those drugs to this day and they provided zero relief. I even had 12 needles in my back once a week for 6 months. I replaced that with Baclofen once or twice a week.
The only thing that works for me is opiates which I do not particularly like (I have no addiction issues, guess I am like Larry Flint) and they have such a stigma attached to them that it sucks. Damn ignorant druggists adding naloxone to my prescriptions even though my history shows I have been using it safely off and on for almost 10 years now or other doctors screaming it’s addictive etc etc.
Read the room Mr. Doctor I have a medical issue of which you have no idea how to treat and I am almost 70 yrs old who can’t walk more than 2 metres. I am no longer in the work force. Why would it matter even if I even did have a severe addiction, not like I am going run out and start breaking into houses or head back for the work force. If I did not have them I would not be able to walk at all.
Having them empathize is non existent these days
If it's any comfort reading about you getting meds but only suffering side-effects, gave me some comfort in that I can't even get an appointment. Like I might not get any help, but at least I don't get meds that make it worse.
Also I completely agree with you on what dose it matter if it is addictive. My grandmother got a medicine that worked grate on her dementia, but the next doctor (they hospital hade like short hired doctors on rotation) took it away because it is really addictive. She never got a medicine that worked well after that, had she stayed on the addictive one she most likely would have gotten 5-10 good years more, but you know addiction.
Thanks. Glad no naughty side effects for you. They are not fun.
It was the beginning of my pain odyssey and was ignorant. I took what they gave me and I systematically ended them all and then settled into my own regime. I am beyond lucky, I got in with this doctor 15yrs ago before things got really bad getting a good doctor. Hopefully he outlives me ;-)
I feel for you about your grandmother. I watched my mom languish for 5 years in a home asking for them to end her. This was before MAID (Medical Assistance in Dying) was available. Our pets are treated with more dignity. I know when it starts getting worse with me I am not going to languish.