What is it about Crohn's and IBD that makes people think they know better?

[MumofCrohnie]

I have had it with conspiracists telling me that their yoga teacher cured Crohn's by clean eating or their uncle's friend's wife cured their Crohn's by ignoring the doctors and changing her diet.

Frankly I am going to believe the professionals who have chosen to specialize in this area of work, the research papers and the results of medical tests that show my daughter's condition over your bollocks "advice", especially when your Facebook feed is full of COVID denial and anti vax stuff.

Where do these people come from and why do they think their opinion is valuable?

AIBU?

Nah, I'll pass thanks. People can educate themselves. If they want to of course. Or they can ask questions. Questions are good. But they should keep their mouths shut about something they don't understand. I'm not there to deliver an unsolicited lecture on the in's and out's of my child's Crohn's Disease.

We shouldn’t have to educate others. If you don’t have it do NOT give advice. It doesn’t work, it doesn’t help and it isn’t needed. Honestly the next person to tell me to eat fruit or veg for my ulcerative colitis I will actually punch. I’m sick of it .

You can't educate pork.

Don’t forget that a positive attitude is one of the best ways to cure cancer.

Apparently 🙄

😂😂😂😂

My dad had a stoma. He'd had half his bowel removed due to cancer.

He was under very specific instructions about what to eat and most of the stuff that people might consider "clean eating" was definitely not on the list.

The standard advice about what sort of diet to eat is meant for able bodied people. There are plenty of diseases that would over-ride that.

I think this is it. My DH has an illness that causes disability. It is genetic. So no your vitamins, homeopathy or anything else he gets offered by well meaning friends can't change his genetic make up.

Thank you, was it due to colitis? X

Same. It's utterly infuriating and minimises my illness /makes it sound like people think it is my fault. It's so ignorant and I have backed away from friends who persist with this kind of thoughtless "advice"

Oh and when your much loved sister in law is dying of cancer, to be told that a non-acidic diet will cure her, as cancer is caused by acid...

@DuckDuck1234 please message me with any tips. Fellow migraine person here.

Not long after I was diagnosed with rheumatoid arthritis (nearly 30 years ago) someone saw me drinking a can of diet coke and said 'I'm not surprised you've got rheumatoid arthritis if you drink THAT'. Fucking bitch.

I don’t talk about it in real life. People still offer unsolicited advice. After all this time, it really doesn’t bother me. But I am careful about what I share because I don’t want my life to become consumed with illness. When I’m with others, I want to talk about other things.
Also if you’re visibly not abled (crutches, medical devices etc) then people do comment without being invited. Again, I think most people do mean well and sometimes, they’re just looking for something to say and to be kind.

Yes it was. Ten years of illness, then surgery xx

These disorders are most likely immune related and that's an area you can't really do much about with or without medicine. It's a bit like telling someone with a peanut allergy that it's just a state of mind 😂
Apparently though a likely trigger is antibiotics, so they should really stop giving them out for anything and everything.

@DDuckDuck1234 - I would love to know more too, please!

👏👏👏👏

The fact that I am medically qualified doesn't stop the world and its wife thinking they know best about how I should manage my own long term condition.
It can be incredibly annoying but I have found the best approach is something like
"Hmmm. Fancy that. What did you think of tonight's match then?"
If someone seems to have a genuine interest of course I don't mind talking to them but I am not wasting my time being lectured on how yoga, CBD capsules or any other "trick that doctors don't want you to know about" is going to change my life, or my energy in trying to have a rational discussion with irrational people.

IBS, migraine, and arthritis here. The first two are so changeable that something that works for a while will then create all the body drama. It amuses me that other people think they know what to do with my brain and gut, when the brain and gut themselves haven’t got a bloody clue what they’re about.

Right now, sleeping is my friend. I figure if I’m unconscious not only can I not register the pain and discomfort, I also can’t hear the waffling from the know-alls. I’m not going to suggest it to any of you guys though, because that would be rude.

As an aside - would anybody be interested in an ibd thread in chat? I'm recently diagnosed and would love some support from the ibd community.

I have a different chronic illness. I used believe that the unsolicited advice was well-meaning, but after many years of it I’ve changed my mind. I think it’s incredibly rude.

I’d like to normalise saying things like, “No no, that won’t work. This disease is caused by genetics and environmental factors. Most people don’t know they’re at risk until they get it. Anyone could get it. You could get it. This time next year, you could be just like me.”

But I’m old and grumpy.

@AMillionPeopleCheering I would.

I know what you mean op. I had an employer who implied I was not doing enough to control my seizures. (I am epileptic) She was sure she knew better than me and was always trying to tell me my seizures were partly my own fault as I obviously did not have the right mental attitude.
she once even argued with my husband over the phone when he had to ring in for me once that he should take me to hospital after I had had 3 seizures. My husband has been dealing with my seizures for many years and is brill at it. He knew when to get help

not to mention the MLM bot who said if I drunk Aloe Vera my seizure and fibro would disappear. She conned my lovely grandma into buying £100 worth at a fair she was at. My grandma was so happy she might have found a cure for me.
i reported the women to the company and I just got a load of crap back about how it’s been proven to be useful curing all sorts of things and she was just trying to help. I did get her money back after threatening to go to the press

I was targeted by an MLM aloe nut too! She was a friend of a friend who suddenly became very friendly with me and asked to meet up. We went for a walk and after an hour or so she casually started dropping in the benefits of aloe vera, that she’d heard I had a chronic illness and would I like to buy some

@GrumpyOldCrone i agree it’s not well-meaning, it’s just rude. Well-meaning would be, ‘Is there anything I can do to help? Please don’t hesitate to ask’. Funnily enough these people never say that.