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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. I know they care, but I despise the “you look so good!” I was diagnosed when I was 16, so I’ve had MS for 22 years - more than half my life - and still nothing looks wrong with me, plenty IS though. When you don’t feel good, you don’t like to keep up this patient charade with people, but you do…

    2. 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

    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. Everytime I tell someone I've just met in a social setting always say 'I know someone with MS and they are in a wheelchair or not doing well'
      People have heard about MS but they automatically think of a wheelchair user.
      No MS sufferer is the same. But we are all on a journey of educating others about it🥺

    2. I just say I have MS and first of All please don't say I'm sorry, I know someone who has it And they're not doing well, they're in a wheelchair!!, Not Me,God has Blessed Me, We're All different,Ask Questions ❓🤔,Read about it before You Assume And I Can Educate You ❤️

  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 🤔 You should let them know exactly how that makes You feel,They don't know And they think they're doing the Best thing for You,as We were always told 💗 A Closed Mouth doesn't get Fed" No Offense,We Have to Speak Up For Ourselves 🥰 Be Blessed

      2. 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

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