Annoying comments

[Tulipano]

What to stay to people who keep saying that I just need to exercise more? I suffer with lupus sle and polymyositis 😭

[PMRpro]

"You need to keep your nose out of things you know nothing about."

[Lupiknits in reply to PMRpro]

I like Pro's reply. When it's necessary to be polite (even if they aren't) I'm used to saying "How interesting" like a parrot. Often used when people say "My cousin/friend/lady on the bus (insert any person here) cured themselves with snake oil/climbing ladders/wearing no undies ( insert anything bizarre)".

[Lintilla]

Just a quick note of solidarity from me (dermatomyositis, UCTD and hypothyroid).

I get a lot of uncalled-for advice, too. In particular, it's astonishing how many people suddenly become experts in myositis, when it's incredibly rare and even the real experts struggle with diagnosis and treatment. Absolutely infuriating - as if you wouldn't be trying everything known to man to improve your own health.

'How interesting' (as Lupiknits suggests) is a brilliant tactic, followed by a swift change of subject. If the situation requires, I've also tried the 'Paddington bear' hard stare - used several times to good effect when I was trying to get diagnosed, and effective with all sorts of condescending people from managers to GPs. I try to avoid getting drawn into arguments at all costs; getting a reaction is what some people enjoy, and it never resolves anything.

All the very best.

[leslieliesel]

I had a friend with no children..I had a young teen acting out..my friend kept telling me what to do..I finally said, when you have children, and find all the answers, THEN tell me what I should do" ...maybe you could say something like that...maybe..." if you get Lupus and mytosis and find the answer, let me know"

[Tulipano in reply to leslieliesel]

So true

[Goldyukr]

I can relate. I also have myositis. My own mother is constantly telling me I need to exercise more. As many times as I explain that it can be detrimental during a flare, she doesn't seem to understand. so my usual reply now is "uh-huh" and move on. Just not worth getting too upset about. The TMA gave me a great packet with a letter to give to friends and family about how we feel but I haven't gotten up the nerve to do that yet.

[1sam]

"It doesn't make it true just because you don't understand human biology".

I said that to a (crazy) coworker that says diseases don't exist, "is only our fear and not feeling loved". Oh please. My white blood cells don't feel loved.