this post was submitted on 10 Nov 2024
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Chronic Illness

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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

  1. Be excellent to each other

  2. Absolutely no ableism. This includes harmful stereotypes: lazy/freeloaders etc

  3. 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.

  4. No denialism or minimisation This applies challenges faced by chronically ill people.

  5. 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.

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[–] [email protected] 43 points 5 days ago

Ok but, and hear me out, what if my brain's right about the level of danger I'm in?

[–] [email protected] 30 points 5 days ago (3 children)

There's an element of truth in this.

I slipped on the ice in February 2021. I got up, hopped in my car and drove to work.

When I got there, I took my coat off and noticed my arm hurt a bit. I figured it was just a bad bruise, but folks said I should get an X-ray to be sure. I work in a hospital, so it was no big deal to get a picture done.

Turns out I fractured my arm. My wife and my doctor both asked how I managed to drive to work with a broken arm. I told them it just didn't hurt that much.

The reason it didn't seem that bad is because I also have gout. Gout reset my pain scale. What used to be a 8 is about a 3 now.

[–] [email protected] 9 points 5 days ago

I understand this.

As a kid I had severe mouth and throat ulcers (autoimmune); it happened regularly. Turns out the drive to eat out weighs the pain response.

You can literally learn to bear pain.

I now have palindromic arthritis; this is also an autoimmune disorder. I feel pain in random parts of my body, usually around joints, but other times in the soft tissue. I am in fairly constant pain, but it is like a background level now.

This can be dangerous, it almost killed me earlier in the year, I got a "very nasty pneumonia" (doctors words) and waited too long to go to the hospital. The pain wasn't that bad...

[–] [email protected] 11 points 5 days ago (1 children)

Also adrenaline. I tore every single ligament in my knee and went on the whole day while limping thinking I was okay.

But you can’t think your way out sickness, all you can do is cope with pain the best you can.

[–] [email protected] 6 points 5 days ago

Yeah, no question. Pain is still pain. There's just an aspect of discovering how much more you can endure than you thought you could until what was once unbearable is just your normal.

[–] [email protected] 6 points 5 days ago* (last edited 5 days ago) (1 children)

Hope you're on permanent medication. Gout can and will cause permanent joint damage. I had a friend that started getting it pretty bad and he didn't do anything about it for several years except change what he ate. He went through like five jobs because of it, he was basically unable to leave bed for weeks at a time. Now he has lost permanent mobility in one of his feet or toes or something so he has a limp and his knee is pretty janky too.

[–] [email protected] 2 points 5 days ago

I'm on allo now, but it took too long and the damage is done. Not so bad that I can't still move. Just enough to remind me that I screwed up.

[–] [email protected] 22 points 5 days ago

Me every morning to my rotting pain prison : . "Yeah, well, that's just like, your opinion, man. "

[–] [email protected] 22 points 5 days ago (2 children)

Worst thing is, it isn't only influencers and other grifters who use this line of thinking, plenty of doctors and other medical professionals try to brush you off with "it's all in your head/psychosomatic" so they don't have to bother with you and can deny you support, but even if it is my brain playing tricks on itself, I'm still in fucking pain and need help, like wtf?

I have much to say on the subject but not the energy to get it out of my head and in to writing in a way that makes enough sense, so I'll leave it at that for today..

[–] [email protected] 11 points 5 days ago (1 children)

I totally get what you mean.

Historically pretty much any illness medicine haden’t figured out the biological underpinnings was blamed on “it’s all in the mind”.

[–] [email protected] 7 points 5 days ago

They used to call us hysterical and lock us up, and now they expect us to be grateful for the "progress" they've made which is basically to relieve themselves of as much caring and effort as they can.. 🙄

[–] [email protected] 16 points 5 days ago (1 children)

Meditation will fix my spine? Thanks, doc!

[–] [email protected] 5 points 5 days ago

I had a number of doctors tell me my pain was psychosomatic before discovering I have scoliosis. Fuck gabapentin, would've ruined my life. Oh and SSRIs for pain fuck me.

[–] [email protected] 15 points 5 days ago (3 children)

Yes, but have you tried yoga?

[–] [email protected] 10 points 5 days ago

ah damn I didn’t think of that. I guess I’m cured of my genetic disease now, thanks.

[–] [email protected] 3 points 4 days ago

Its the pain version of have you tried smiling more for depressed people heh

[–] [email protected] 2 points 5 days ago

You can tell I'm jaded because I had a nephrologist tell me that after a bout of long term IGA vasulitis, but ironically enough I needed physical therapy for being bedridden so long. Oh and scoliosis, but evidentally that was for me to figure out.

[–] [email protected] 10 points 5 days ago (1 children)

Holy shit that's so patronizing.

[–] [email protected] 8 points 5 days ago

I know right. This kind of stuff comes from the same wellness influencers who think you can think and “healthy” yourself out of uncurable disease.

[–] [email protected] 7 points 5 days ago (1 children)

Did you find the cure for fibromialgia?

[–] [email protected] 4 points 5 days ago (1 children)

When I was diagnosed my mum told me to just ignore it and to get on with life anyway lol

[–] [email protected] 3 points 4 days ago

You'd think your family would be the first to support you...

[–] [email protected] 4 points 5 days ago* (last edited 5 days ago) (1 children)

Something something Dune reference

Something something tibetan monks

That should cover most of it.

Edit: I should clarify I think that mind over matter when it comes to pain is bunk and I was heading off some jokes and "um, actually" posts at the pass.

[–] [email protected] 1 points 4 days ago

I literally couldn't go to school today because of the pain. I tried to ignore it in the past but that just lands me in the ambulamb 😭

[–] [email protected] -1 points 5 days ago (1 children)

It’s terribly worded, but unfortunately it’s kinda true. I have a good friend who got severe nerve damage falling while doing arb work, wrenched his shoulder. Basically, one of his major nerves was constantly firing. He was on tons of anti inflammatories and morphine, until they gave him a therapy that slowly taught his brain to ignore the signal from that one nerve. It took a long time, but he’s completely pain free now.

[–] [email protected] 9 points 5 days ago (1 children)

CBT for pain does not make the pain go away. It helps you cope and perceive the pain as less, that’s completely different than the pain going away, the science is clear on this.

The pain is still there and the same amount, you just have coping mechanisms to better deal with it and focus on it less.

Thinking the pain away is complete pseudoscience.

[–] [email protected] 2 points 4 days ago

It’s not Cognitive Behavioural Therapy that he had, it’s a specific technique for nerve pain. It wouldn’t work on an injury, but as his problem was basically just one nerve transmitting the message long after the physical damage had healed, he had a long course of a physical therapy that teaches the body to go through the range of motion of the afflicted part without noticing the message from that one nerve.