Things people say to someone with Multiple Sclerosis that make you go Hmm…

Those of us living with Multiple Sclerosis get interesting responses from people when they find out we have been diagnosed with MS. I actually think most people mean well, they just don’t think before they speak.  It can be frustrating, I know. Hopefully the more we talk about these things the more people will learn that we need care, understanding and support more than anything else. People really do say some on the darndest things…

1. You need to be more positive. You would get better if you had a better attitude.

2. You shouldn’t drink coffee, cola, wine or really anything except filtered water.

3. I read about this diet that cures MS, why aren’t you on it?

4. You should be eating gluten free. Gluten is your problem.

5. Are you contagious?

6. You need to stop eating meat.

7. What did you do wrong to get MS?

8. I heard a vaccine causes it. You shouldn’t have gotten that vaccine you had when you were 2 years old.

9. You need to get out of the house more.

10. What about that celebrity with MS? He’s fine…why aren’t you?

11. Have you Googled MS?

12. Why don’t you try a different medication? Something that doesn’t have as many side effects and that stops MS?

13. But you were fine yesterday.

14. Are you sure you have MS? I think it’s all just in your head.

15. You should join a fitness club. Exercise is all you need.

16. It can’t be that bad.

17. You don’t look sick.

18. Oh, my aunt had that and she’s fine now…or dead, I can’t remember which one.

19. Trust me, I know EXACTLY how you feel.

20. Stop using MS as an excuse. You are just trying to get out of work.

21. Try this supplement…it helped my cousin’s uncle’s sister’s friend who has MS.

22. You’re just stressed.

23. Have you been tested for Lyme Disease? That’s really what you have. MS doesn’t really exist.

24. There’s a trial medication out now, why aren’t you on it?

25. Why are you so tired? You can’t be THAT tired, you slept all day yesterday.

26. You’re just not doing everything you can do. You must not want to get better.

 

 



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20 replies
  1. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    Thanks Penelope they are some stupid and unwanted statements that come from uncaring and unknowing people who don’e know what they are talking about. As I have written on the MS Team there is no cure for MS (yet) but there are some helpful drugs/infusions that makes our life worth living.

    Reply
  2. Monet G.
    Monet G. says:

    The worst I’ve heard so far was last week when someone close to me said….”I think you’re just faking it!!”
    At the time, I was having a hard time walking and was walking sideways and ran into a building.

    Reply
  3. Em
    Em says:

    Wow! It isn’t just me that’s been told all these things by one idiot or another. I especially dislike that everyone seems to know someone, who knows someone, who “has MS, or ME, or something like that” and then comparisons are made.
    I have to actively remind myself that usually they just don’t understand and they’re desperately trying to think of something to say.

    Reply
  4. Jess
    Jess says:

    Ha! As soon as i read this forwarded this to my parents. Sadly, alot of these my parents have said to me.
    Thanks again!

    Reply
  5. Peggy
    Peggy says:

    Heard them all! Hmmmm…as if the first blood test they did was for Lyme Disease EVEN THOUGH I’VE NEVER HAD A TICK BITE…did it anyway…kinda puts all the other tests had do MRI’s, lumbar punctures. ..etc to Confirm the diagnosis of MS ….Hmmmm

    Reply
    • Miss R
      Miss R says:

      Yes please add that foolishness. People don’t know what to say, they need to choose silence. We don’t need anyone’s pity!

      Reply
  6. Emily
    Emily says:

    I love this list! Gotta love “Oh, but you look so good!” Ugh! I keep waiting for someone to say something to me when I get in my car that’s parked in a handicap spot. The looks I sometimes get make me feel guilty (if I’m having a good day) or mad (if I’m having a bad day.) Can’t wait to say “If you take my disease you can have my parking spot!”

    Reply
  7. Meshia Williams
    Meshia Williams says:

    Are you sure it’s MS?
    Have you tried marijuana?
    Your eyes were fine last week?
    Why did you have a cane?
    I read online that yoga and walking are key. Have you tried them?

    #UGH

    Reply
  8. Tilly
    Tilly says:

    sharing this with my family, half of whom forget I have it and nag constantly

    one I hear

    27. I have a friend with that and she’s blind and still works full time – how come you can still see?

    Reply
  9. CLIVE WHITESIDE
    CLIVE WHITESIDE says:

    Thank you for sharing this post and this long list of things that people with MS are often told. I am sure that many of us will have experience of a number of them.
    It is all in your head ? Yes and if you could see my MRI you would see how true this actual is

    Reply
  10. Meeya
    Meeya says:

    You know what the worst thing is..? That No. 25 and 26 have sprouted such deep roots in my brain that by now, I think they MIGHT just be true!?!? 😱
    Somebody slap me, please, to make this thought go away! 😵

    Reply

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