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What NOT to Say to Someone with MS

We know most people mean well and are trying to be positive, uplifting, or helpful but sometimes, those messages fall flat and completely miss the mark.

What have you heard someone say that should NOT be said to someone with MS?

Conversely, please feel free to comment with a rephrasing of what someone could say instead.

  1. , It seems as if on a daily basis, that individuals will ask well how are you? I can’t even finish a word: OMG you don’t look sick!! I would love for people to walk a day “our” shoes. This is the kicker your in disability because you have MS I didn’t think that it was debilitating.🙄 Mt thoughts are: I understand, MS has so many different symptoms that cause extreme fatigue along with pain in various areas.

    1. DON'T DO THIS:
      When I inform friends, family, co-workers of this bad MS news, they all feel compelled to tell me the story of someone they know (or knew) who was stricken with this. Some tell me about how well this person has coped with this, others have feel it is their responsibility to tell me about the terrible life their person has or had.


      DO THIS:
      The most expectable response is to express your sadness and concern.
      Offer any and all needed help to them, reiterating that you don't know much about their case of MS.

      1. Hi . That has got to be so frustrating. I like your solution those. Don't try to fix it. Don't try to normalize it. Just provide support and compassion. Thanks for sharing! - Lori (Team Member)

    2. @mtoddh, Even my new PT people said Oh, my moms friend has had MS all her life and she deals just fine. I know how hard it can be.
      Ummm…know ya don’t!!

      1. I wish I had a dollar for every time I've heard "you don't look sick" or "I know someone who lived a full life, like she didn't have MS. How bad can it be?" I could pay off the National Debt! I've even gotten dirty looks when I use my handicap parking permit! I think to myself, "Come back in an hour and watch me crawl to my car."

        1. Good for you!!! When I go anywhere with my husband or my daughter, they won't use it. So they drop me at the door, park and meet me. Except I'm left standing til I get they catch up, exhausted before we start.

        2. ugh! How is it that sometimes those who know us best - or should - still don't get it?! Cherip, do you think a good heart to heart with them (when you're NOT wiped - and simmering on the inside from being left at the door like luggage) might open their eyes? They probably think they're being "helpful" and don't realize how exhausting 'mere' standing can be.

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