this post was submitted on 16 Jul 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.

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  1. Be excellent to each other
  2. Absolutely no ableism.
  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 denying or minimising challenges faced by chronically ill people. This is a support group, not a place for people to spout their opinions on disability.

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[–] sentientity@lemm.ee 7 points 3 months ago (1 children)

The worst is when a specialist confidently repeats known false information to you. Like, easily debunked by the most cursory glance at a state health department website type stuff. I have started bringing print outs about my illness from reputable sources to appointments with me just in case.

The worst part of being sick is not my symptoms. It’s having to interface with the healthcare system.

[–] mecfs@lemmy.world 1 points 3 months ago (1 children)

Yep this is awful. Some doctors don’t know how to keep their ego in check.

Makes you really appreciate the ones who admit they don’t know. Though they are few and far between.

[–] sentientity@lemm.ee 1 points 3 months ago

Yep. I treasure every medical professional who has been honest with me about not knowing something.

[–] Tippon@lemmy.dbzer0.com 3 points 3 months ago

Back when I was first diagnosed I picked up some kind of bug. Nothing serious, but I hadn't learned what to do since I'd been put on a load of complicated sounding meds, so I went to the out of hours GP.

I explained about my illness and meds, and gave him the symptoms of the current illness, and he just gave me a blank stare. After a short while, he asked my wife what she thinks we should do 🤷🏻‍♂️

[–] over_clox@lemmy.world 1 points 3 months ago

Plot twist: Google's AI had a 'hallucination', and invented a brand new illness. But don't worry, it can be treated by huffing chlorine gas.. /s

[–] LustyArgonianMana@lemmy.world -1 points 3 months ago* (last edited 3 months ago)

Doctors are cops

Eta: down voters, really think about it - are doctors cops? Are they not part of the system who can take away our power of attorney? Can commit us to psychiatric imprisonment with no trial? Can force treatments and medical interventions on people who don't want them in some situations, including substance users and intersex people?

[–] Akasazh@feddit.nl -1 points 3 months ago* (last edited 3 months ago) (1 children)

I'm kind of bewildered about how the diagnosis process went. You self diagnosed without consulting your gp? Because in my understanding you go to your doctor to be diagnosed.

Of course you can bring up your ideas as to what it is, but it's a bit tall if you come up with a diagnose and you're not correct. (I thought I had frozen shoulder once,I didn't).

If you go symptom shopping and WebMD yourself to a diagnosis, it's not per se what's the matter with you.

If it's something very obscure it's not weird for a general practitioner to have to look it up, he's not a specialist. That where the books are for. He's probably looking it up in order to respect your line of thinking

Not to say there isn't any bad gp's out there but please don't think your methodology and research is better than a professional is just mad. A diagnose is reached through consensus, and if that isn't reached you don't have said illness.

[–] sentientity@lemm.ee 2 points 3 months ago

People don’t usually have the same doctor for their whole life. So no matter how long you have been living with an illness, you do find yourself seeing people you have never met before and sometimes having weird experiences just through probability. No one is “symptom shopping” here, we’re just describing a common experience, which is that it’s a bit jarring when you have a health problem and the doctor you go to see for it doesn’t know how to help you with it.

[–] PP_BOY_@lemmy.world -3 points 3 months ago (3 children)

Woah buddy! One more step and you're gonna be dangerously close to anti-vaxxer territory. Trust the science heckin' friendo

[–] Tippon@lemmy.dbzer0.com 4 points 3 months ago (2 children)

This isn't about not trusting the science, this is about those doctors who either haven't kept up with their research, or haven't got the sense to be subtle when they need to double check something.

I've got a rare disease, and I've seen way too many of these doctors. The bright side is that they make the good doctors look even better 👍

[–] Zorque@lemmy.world -1 points 3 months ago (1 children)

Or maybe it's about how people are so full of themselves that they believe people should know everything about you before ever meeting you.

Maybe stop being so judgemental when someone has to learn about something before treating you. You'd rather they pretend they're all knowing and treat you when in reality they don't know shit?

No one person knows everything. That expectation will only lead you to disappointment.

[–] Tippon@lemmy.dbzer0.com 1 points 3 months ago

Are you serious? The post is about doctors who don't know their jobs.

I even said in my comment that they might have to double check things, but often don't have the sense to be subtle about it.

I'm not expecting to walk up to a stranger in the street and have them know the details of my illness, I'm talking about a trained professional who is about to give me advice or medication that could kill me if they get it wrong. They should at least know the basics, and certainly shouldn't just sit there with a blank look on their face.

Read my other comments on this post. I've had a GP as my wife what to do because he hadn't kept up with his work, while my dentists knew about my illness and made sure that they were taking any precautions that they needed to.

[–] YeetPics@mander.xyz -1 points 3 months ago* (last edited 3 months ago) (1 children)

Aren't MDs required to take a set amount of CME hours every year as a prerequisite to holding a license to practice?

(Yes, they are)

But if your googling yields better results, I advise you to stop seeing your GP. it's all a scam anyway right?

[–] Tippon@lemmy.dbzer0.com 1 points 3 months ago

You've missed the point here. There are a lot of us with chronic illnesses who have been to see a doctor, and the doctor has used Google to look up our illness. These doctors don't seem to be keeping up to date with their research, and don't exactly fill us with confidence when they openly demonstrate their lack of knowledge.

The majority of us believe in the science, and a lot of us keep ourselves up to date as much as we can, so seeing doctors who don't even know the basics is infuriating.

If you'd taken the time to read either of my other replies on this post, you would have seen my example of the GP who asked my wife what to do.

There are a hell of a lot of good doctors out there, who know about our illnesses or even admit that they need to refresh their knowledge, but there are also way too many doctors who openly Google it and don't even pretend to know. They are the ones we complain about.

[–] FellowEnt@sh.itjust.works 1 points 3 months ago (1 children)

GPs are not science, they are people. People make mistakes. They also have varying levels of education, mental health issues, personal problems, general human stuff.

[–] BearOfaTime@lemm.ee -1 points 3 months ago (1 children)
[–] yeahiknow3@lemmy.dbzer0.com 0 points 3 months ago (1 children)

Ok, take whatever issues GP’s have and extrapolate it to the average American by first multiplying by a million because the average American is a fucking idiot.

[–] mecfs@lemmy.world -1 points 3 months ago

And a lot of doctors are too.

[–] mecfs@lemmy.world 0 points 3 months ago (1 children)

?

This meme is about when you’ve read the scientific literature surrounding your illness but your GP hasn’t. Of course, it is not the GP’s fault as they can’t know about every illness, but rather a problem with how our healthcare system makes GP’s instead of specialists survey chronic illnesz.

[–] dgriffith@aussie.zone 1 points 3 months ago

That's their job, essentially they are the front door to the world of medicine, and a lot of their work revolves around connecting you with someone who can help.

A good GP, when presented with symptoms and evidence of something they don't know much about, will say, "Huh. Let me have a look at some stuff", and then they will go check things out.

If things match up then they will likely say, "Ok, let's try X" , or alternatively, "I know someone who is better suited to deal with this", and hand you off. They might say, "Perhaps it's this other thing", which might piss off some long term sufferers of particular illnesses, but I'd prefer a no stone unturned approach to things than blanket dismissal.