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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. that's a rather young age to be diagnosed. I imagine that was challenging to process that diagnosis in a season of life that few people your age could relate. How are you feeling now?
      Alene, Moderator

    2. Lord there are so many things people shouldn't say to us MSers. I just recently wrote an article that you might find some laughter in:
      Let me know if it gives you a few giggles haha
      All the best,

    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. Same! I'm so blessed, there's really no measure! I don't have pain (more than the typical "old joints"😉. Diagnosed at 28 in 2008 and never started the treatments, just changed my diet and focused more on the health of my immune system. I was told by the last neuro I saw that there's no real good reason for me not to be in a wheelchair, because of the brain & spinal cord lesions. I said "thank you", since I chose to take that as a compliment, and not the usual treatment refusal "snark". If what I'm doing is working for me; let me keep doing it, I say!

    2. thanks so much for sharing your great success story. I'm thrilled to hear that you've found a treatment plan that works for you and that you've been able to advocate for it in some really "challenging" conversations. That takes strength. I've been there. We're wishing you continued health.
      Alene, Moderator

  3. @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. I think this is the third time I've responded to one of your comments this morning. Lol I swear I'm not stalking you, I just happen to be super active on the site right now. I wanted to say, you are just nailing it with your comments. This is such fantastic advice and I wanted to say thank you for sharing it. I think I needed to hear it as well! I hope you're having a lovely morning and protecting your peace! 🧡 Kayleigh, team

      2. I know what it feels like to be reasonably okay and an hour later be crawling up the stairs. Can you imagine talking to someone with cancer and saying "how bad can it be." People don't understand MS the way they understand cancer I guess.

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