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A MyMSTeam Member asked a question 💭
Liverpool, UK

Anyone else try explaining how hard it it to do things to have people tell you how good you do things?

Is it wrong to be P****D off?

4 days ago
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Answer Summary

Members connected over the frustration of being told how well they do things when they express how much they struggle, a feeling that many in... Read more

Members connected over the frustration of being told how well they do things when they express how much they struggle, a feeling that many in the MS community know all too well. Several members shared that people without MS often respond from a place of ignorance rather than ill intent, which makes it hard to feel truly heard, and many admitted to laughing things off in the moment while hurting inside. A recurring theme was the importance of building emotional resilience, letting go of the need for outside validation, and leaning on others who truly understand the full experience of living with MS.

A MyMSTeam Member

I try not to let others words or opinions affect my mood . It’s hard but I have to . I think you have the right to feel that way . Do you think they said that with ill intent? If not , let it go don’t let little things stress you out . In a few months you won’t even remember they said it .

4 days ago
MyMSTeam

Absolutely not wrong — that frustration is completely valid and shared by so many living with MS. The invisible nature of MS symptoms is one of the most exhausting parts of the condition. More than half of people with MS deal with fatigue, pain, cognitive issues, and numbness — none of which are visible to others.

When Show Full Answer

Absolutely not wrong — that frustration is completely valid and shared by so many living with MS. The invisible nature of MS symptoms is one of the most exhausting parts of the condition. More than half of people with MS deal with fatigue, pain, cognitive issues, and numbness — none of which are visible to others.

When someone says "but you look so good!" they genuinely mean well, but it can feel dismissive of everything being battled behind the scenes. A MyMSTeam member described MS fatigue like this: *"getting two nights of sleep after spending the day standing at the DMV, all while battling a bad flu."* That kind of vivid description can really open people's eyes compared to just saying "I'm tired."

A few approaches that others have found helpful:

- Be honest and specific — details paint a much clearer picture for people who don't understand MS
- Welcome questions — letting people ask removes the guesswork
- Invite them into your world — sometimes bringing someone along to an MS-related event helps them truly "get it"

The frustration is real and justified. Venting about it with others who truly understand can make a big difference too.

4 days ago
A MyMSTeam Member

You all make perfect sense, i need to change my head

3 days ago
A MyMSTeam Member

@A MyMSTeam Member, hello my friend. I know your frustration. I have a long true friend that made me feel this. He would try to be supportive when we talked, but comments he made would frustrate me. I later realized these comments came out the ignorance many have of MS. And these comments are like a default reaction/response. We can't educate everyone about MS and it's effects on us, but we can better arm ourselves for these. I got thicker skin so to speak. I still hear them from time to time. I can't stop them, but I can control how I react/receive them. I act like a duck let them roll off back like water.

Stay Strong

3 days ago
A MyMSTeam Member

Its not their approval, its when i say i struggle, i want believe not flippancy or being told how well i do things.. it just makes me want to hide more

3 days ago

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