Things NOT to say to someone living with Multiple Sclerosis

We use words every day to communicate our opinions, frustrations, anger, appreciation and love. Many times we don’t even pay attention to the things we say or how we say them as the words tumble out of our mouths quicker than we can actually think. Those words have the ability to bring hope, tenderness and support, but they can also be used to condemn, attack and ridicule.

Occasionally the words people use when trying to help a person living with Multiple Sclerosis, hurt more than help. It’s my hope that those times happen unintentionally, but they still happen. In their attempt to do something soothing by passing on a few words of wisdom, those words come across more like a punch in the gut or a jab to the heart instead. So, just in case someone would like to know the words that hurt, pass this list along.

Things NOT to say to someone living with Multiple Sclerosis:

  1. You don’t look sick.
  2. You shouldn’t drink diet coke.
  3. OMG, this diet I’m on cures MS.
  4. OMG, this vitamin will leave you symptom free.
  5. Aren’t you gluten free? You should be.
  6. Try this herb; it helped my cousin’s uncles’ sister’s friend who has MS.
  7. Well, aren’t you taking your meds? (Yes….) Then why is your MS bothering you still?
  8. Are you contagious?
  9. You shouldn’t eat meat.
  10. What did you do to get MS?
  11. My aunt had that and now she’s dead.
  12. If the heat bothers you, don’t be in it… or move.
  13. I heard a vaccine caused it.
  14. Why are you dragging one of your feet?
  15. You need to get out of the house more.
  16. Maybe if you exercise more.
  17. Well, if you’re in remission, why are you on meds?
  18. That celebrity with MS seems just fine, why aren’t you?
  19. Are you sure it’s MS? How can doctors be so sure?
  20. Stop using MS as an excuse. You can’t feel that way ALL the time.
  21. Maybe you just need to try a little harder.
  22. Why don’t you try a different medication that doesn’t cause so many side effects?
  23. You seemed fine the other day.
  24. Why are you always so tired? You slept ALL night.
  25. Oh, trust me, I know EXACTLY how you feel!
  26. It really can’t be that bad.
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About the Author
About the Author
Penelope Conway

Penelope Conway
Penelope started Positive Living with MS as a way to help others with MS stay positive in the midst of a terrible disease. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day. Multiple Sclerosis may never go away, but neither will her determination and her drive to help others through the journey.

37 replies
  1. Jacqueline Vandyke says:

    Sorry for the pain you go through mom… Sheila Van Dyke glad i do not say these. If anything i have said though hurts please let me know. Thanks and i love you so much!!!

    • Sheila Van Dyke says:

      I really don’t mind questions, that way I can explain. It’s the you don’t look sick or I know how you feel or you were ok yesterday. Looks r deceiving, I have been very tired before this is way beyond that, the way I feel changes constantly I can’t control it. Oh n meds only help stop relapses, they don’t control actual symptoms

      • Chavonne Marie Sladek
        Chavonne Marie Sladek says:

        How about how we try not to complain about our constant pain, so if we are verbalizing our pain it is extreme. So I say, “God I hurt so bad today” and my healthy as a horse husband or some other lucky unafflicted person is like yeah, I’m sore too. or, yeah, I have a little headache today too. If you are hearing about a headache or pain from me it’s the kind that would drop a lesser man to his knees, so then the mood swings start, am I right? Now you’re angry at the people who love you and try to help you as much as they can because they just don’t get it. Then the rage passes and you start to cry and feel guilty because you snapped at them, or drained of all energy because you had to use every ounce of strength you had to not yell at them. everyone thought i was bi polar and that i was exaggerating my pain and inability to work. it is so frustrating but staying positive, hard as it may be sometimes, really is almost as important as medication and understanding your MS. That is why I was drawn to this sight and wanted to post here. I could really relate to being miserable but trying to make fun of myself and laugh it off.

  2. Sarina Prizzi says:

    Thanks again Penelope. I’m a dietitian and I really hate to be told I can be cured by one supplement or one super food or giving up something I enjoy. I’ve spent the past 18 years studying MS and diet and there’s no magic. Just the boring healthy low cholesterol low saturated fat diet that’s good for everyone else.

  3. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    It’s easy to ignore a chronic disease in a person and use a worldly bit of advice. It just doesn’t work.
    I have had a few falls lately and I couldn’t move myself, but my son (who’s bigger than me) came and helped me up. Very easy this time and I must remember to ask for help when I nee to..A great learning curve.
    Words can be useful and also dangerous to us. Don’t be afraid to ask for help and learn what to put up with and what to discard

  4. Wendy Aitken says:

    I’ll add a few that really get my back up…

    After/during high dose steroid iv’s I get asked “are u feeling better yet?” …umm you try going through high dose steroids & see how u feel! It’s not like a magic wand being waved and *poof* you’re all better!
    It’s also not a simple 24hr virus!

    We all feel crap most of the time & battle different issues on a daily basis, yet I get asked “how’s the headache, is it better yet?” …if only it was as simple as that

    I wouldn’t wish ms on anyone but try walking a day in my shoes…

  5. Hueller
    Hueller says:

    If I have to cancel plans, I’ve heard “Is it getting that bad?” I’d rather not even MAKE the plans than hear that. Any smart-ass replies are appreciated 😉

  6. Leslie Beaver says:

    And I feel fortunate that these have never been said to me. Though I realize that being male and strong very likely has much to do with this fact. Sad that baloney like this is still deemed perfectly acceptable when addressed to a woman.

  7. Linda Apodaca says:

    You are my motivation, Jacque Apodaca Mateo, to keep going, no matter how I feel each day, I know your pain is worse. Love and hugs from your Mama.

    • Lucinda Apodaca says:

      I have said don’t drink Diet Coke, it’s not good for anyone tho not specifically you or MS. What we eat effects our bodies no matter our disease. Home cooked is always better it’s about control ya know. Love ya sis sorry if I’ve ever said anything to hurt you. It was fun hanging out with you and practicing your communication skills!

  8. Marlene Adams says:

    I won’t bother reminding myself how many on the list have been said to me. Unfortunately, they think they’re helping but have no clue how hurtful their statements are. I’ll just continue to be stubborn and push myself when I’m feeling like crap and jump for joy when I’m feeling LESS then crap 🙂

  9. Christina Beaton says:

    I agree there are many on this list that cause irritation. However, there are some good things to say and I came across one of those the other day. The person I was talking to said ‘you look extremely positive’. I went out of the building walking straighter and more upright as the comment made me feel good.

    • Daniela Maksimović says:

      That`s why when someone asks me how I feel I answer changeable like a weather or like everyone else, everyday I`m shuffling. Cause if I say something is wrong, I get come back at once, how that person is feeling worse than me and never ending complain, not fun.

      Plus if they are older than me, then I˙m doomed ˝You are still young, in your age I was running, doing this and that˝ Well glad you could. So I keep quiet on my own, less annoying. 😀

  10. Leslie Beaver says:

    Very good list. To which I will add a personal pet peeve. An absolute no no from your partner. When having an argument. “You’re not well”. True of course. But also for topic and demeaning. Throwing up the disability in the midst of an argument with a disabled person is never wise.

  11. Jen Mahony says:

    You could add ‘but you’re looking so well!’ to the list. I want to say ‘Really? I feel like crap.’ It’s almost like you don’t have a right to feel the way you do when people say that…

    • Fiona Easton says:

      Agree Manja , some people don’t know how to deal with the depth of the complexity of MS , so it’s easier for them to say ” you look well ”
      I say some dumb stuff too sometimes 🙁
      MS is one of those conditions that remind me of so much fierce paddling underwater whilst the bird glides gracefully atop

  12. Meeya
    Meeya says:

    Admittedly, it IS bad sometimes when you hear for the umpteenth time that you don´t look sick,,,
    But on the other hand – how should they know better?!? We all keep repeating that you can´t know what it´s like unless you have MS, so methinks we should also forgive people their sometimes inadequate remarks, don´t you agree?
    Only last week, when I had a really bad day, and someone asked me how I was… and after my honest reply that I was not well at all… His reply “But how can you look so extremely good when you´re feeling so bad…?!!?” was accompanied by such warmth and concern (No, =NOT the same as “pity”…!), that I actually really took it as the compliment he had intended…
    We really shouldn´t be too touchy, especially if they honestly mean well! Give them a chance, maybe try to explain your feelings to them. I think this is part of raising their awareness to our situation – doesn´t cost you a thing, and might improve everyone´s life just that tiny bit ;-D

  13. Joan McGowen
    Joan McGowen says:

    The Ignorance Of Individual’s Displayed In The List Of “Things NOT To Say To Someone Living With Multiple Sclerosis”!!!

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