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Real members of MyMSTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

◦You don’t look sick
◦You shouldn’t drink diet coke
◦OMG this diet cures MS
◦OMG this vitamin will leave you symptom free
◦Aren’t you gluten free? … You should be
◦Aren’t you too healthy looking to have MS
◦Try this herb; it helped my cousin’s uncles’ sister’s friend who has MS
◦Well aren’t you taking your meds?? (Yes….) Then why is your MS bothering you still
◦Are you contagious
◦You shouldn’t eat meat…
◦What did you do to get MS?
◦How DID you get that? You must’ve had mono
◦If the heat… read more

Answer Summary

Members enthusiastically resonated with a viral list of insensitive comments people with MS often hear, such as 'you don't look sick,' 'just... Read more

Members enthusiastically resonated with a viral list of insensitive comments people with MS often hear, such as 'you don't look sick,' 'just exercise more,' or dismissive remarks about fatigue, with many sharing their own frustrating experiences of being misunderstood by friends, family, coworkers, and even doctors. Several members offered strategies for coping, including choosing which battles to fight, educating those genuinely curious while letting ignorant comments roll off, using humor or sarcasm as a release, and remembering that most people simply lack knowledge about MS unless they or a loved one are directly affected. A recurring theme was the emotional toll of invisible symptoms, the loneliness of feeling judged or doubted, and the importance of finding supportive communities where members feel truly seen and understood without having to constantly defend or explain themselves.

A MyMSTeam Member

Until you KNOW about MS. You dont know about MS :) I think some people want to offer kind words to cheer and encourage. Some get uncomfortable with 'illness' and dont really know what to say. And others, self explained as being rude and not too sharp :) I struggle with defending myself against judgements..... But then I remind myself that I dont need to convince or validate how I feel to anyone. Good or bad, I know me best :)

November 7, 2013
A MyMSTeam Member

My first introduction to MS was when I learned my Mother was diagnosed with it. As I watched her progress from a cane to a walker, wheelchair then finally a hospital bed, I too was diagnosed. We decided immediately to keep my diagnosis a secret until her passing, years later. Only a handful of key trusted individuals knew. I heard much worse comments from co workers and even distant family. It truly is amazing what people say behind your back especially in the workplace. A couple fellow co-workers had MS and I shuddered hearing the comments of their so-called friends when they were out of 'earshot', and did not know of my condition.
After my Mom's passing, I became a strong advocate, especially to those who fear disclosing their condition, because of the public's ignorance to the disease.
The co workers who once ridiculed and belittled those affected immediately became silent to me as I expected.
These are merely some comments we still hear even today. Believe me what is said behind our backs is much worse and would anger and hurt even the most callas of us. As for those who stigmatize and ridicule, they some day will have to answer to a higher authority.
This unfortunately is just one more thing us MS'rs have to experience and endure until awareness is spread, and ignorance is educated.

November 7, 2013
A MyMSTeam Member

thing is ...most people don't take a true interest in any disease until they have it .. or a loved one has it .. soooo ... seriously, how much did you know before you were diagnosed with MS .. I sure didn't know much ..

November 6, 2013
A MyMSTeam Member

I've heard this all before.
It's amazing how uneducated people are about MS. It took a semi "celebrity" to even get people talking about it as of late. But the talk fades. I've had people say "well Jack Osborne can walk and he has MS - why are you in a wheelchair?"
It's sad.

November 6, 2013
A MyMSTeam Member

Grammy I have had my older brother say the same thing. I mostly get the but you look so good. I do that on purpose. I never took good care of myself before the dx. But now I feel obligated to do more maintenance. Just because I feel like crap doesn't mean I have to look like it.

November 6, 2013

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