Things often said to people living with Multiple Sclerosis…that shouldn’t be said

Those of us living with Multiple Sclerosis get some 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.

Things people shouldn’t say:

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 will actually stop MS?

13. But you were fine yesterday.

14. Are you sure you have MS? 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 vitamin…it helped my cousin’s uncle’s sister’s friend who has MS.

22. You’re just stressed.

23. That healing preacher prayed over you and you still aren’t healed. You just don’t have enough faith.

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.

 

 

MS Gets on My NervesMS WarriorMS Superhero  


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.

66 replies
  1. Jacob Trounce says:

    Surely I’m not the only one that is sick of every second person telling you how well someone they know is doing who has MS, like **** off its different for everybody good for them!

    Reply
  2. Joanne Kruis says:

    PENELOPE, WATCHED YOUR VIDEO, SO HAPPY TO HEAR YOUR VOICE! YOU HAVE HELPED ME THESE PAST 2 YRS TO UNDERSTAND MS BETTER THAN ANYONE ELSE AS I WATCH MY DAUGHTER DECLINE.

    Reply
  3. Wayne Ellison says:

    The first words I get are in so sorry. It’s not a,death sentence. Its,is the war of the person who is handing with that smile saying get me throuh this day. Now really and I mean really there are some days where that just Bliss that I feel great I feel 16 I want to run and jump. Then that’s in the winter. The summer if it’s over 70 I die all day long. That’s why I really do need AC hope you enjoyed my sentences and I hope it help somebody else out there peace

    Reply
  4. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    An interesting list of stupid remarks. There are some stupid people out there that don’t know how we feel and think.

    Reply
  5. Glenys Jackson says:

    What about people asking why you’re not knitting, writing, etc. as much as you used to do. (The extended concentration I used to have for things like that is lacking these days – but congratulations to Penelope and others with MS who are still making a go of it and using their skills to encourage others!)

    Reply
  6. Mike Thieme says:

    Why don’t you come up with a list about what to say? Sometimes it is difficult to respond with an appropriate sentence right away when you just learn about someone being sick – no matter wether it is MS or some other disease.

    Reply
  7. Melany Kimbler Farr says:

    I love these: I was at Target with one of my MS t-shirts on … the cashier proceeded to tell me about his friend with MS who became wheelchair bound, then her limbs ‘shrivelled’ up, then bed-ridden and this and that awful things …. “Um, thanks for reminding me?” …

    Reply
  8. Vicky Hancock says:

    Reading down the list you realise how many you’ve heard, others I’ve heard are lose weight that will help, did you catch it on holiday? Doctors say it’s MS if they can’t think of what’s wrong with you….

    Reply
  9. Stephen
    Stephen says:

    Life changer over night… I’ve lost 90-95% of my vision in my right eye, 6 months now. Get to try a “new” drug that has been on the market for 3 years now… $10,000 for 24 pills!
    It’s hard not to think of MS as a big scam, and to not feel like a test dummy for me. There are many more deep and personal thoughts that I like to believe most people have when they find out they have something like MS. Has been a battle of wits and relying on a mind built like a steel trap.

    Reply
    • Whitney S
      Whitney S says:

      I’ve heard that one more times than I can count. My “favorite” was about three weeks after I was diagnosed. My central nervous system was reverberating like a giant bell, so everything was too loud and too bright, and I had one of those energy crashes where you’re not sure you have enough energy to take your next breath or blink. My husband had to help me to bed where I couldn’t even figure out the logic required to play solitaire on my tablet. I was utterly terrified. Once I was able to get up, a friend said, “It’s okay, sometimes I get tired and need to take a nap too. I know just how you feel.” Wow. REALLY?!

      Reply
  10. Belinda Lewis says:

    If people can’t SEE it,they don’t believe it. 🙁 also they can’t imagine how you can write when ya can’t feel the pen. So hard to explain, and truth be told,they’re really not trying to understand. Frustrating!!

    Reply
  11. Cindy
    Cindy says:

    #25 absolutely makes me furious when said to me. People don’t have any idea what chronic fatigue feels like.

    Reply
  12. Aileen Brown says:

    I do get you are looking so well and I know someone blah blah blah most GPs don’t know much about MS how do you know so much plus no 2 people are the same is my stock answer

    Reply
  13. John Williford says:

    I believe in #1… but I’m starting to wane on that idea. #15 Causes flair ups. #16 SHUT UP. #17 My favorite. #19 Heard it. This isn’t like a stubbed toe or the flu. #20 Has really happened. #22 Also causes flair ups. #24 The meds were worse than the disease. (almost shut down my liver, the other made my lymph nodes swell to the size of golf balls) #25 Has also happened. #26 Has been implied.

    Reply
  14. La Pacina T says:

    Someone recently asked me how I’m holding up and I meant that I feel dizzy due to the temperature outside. I got following response: “well there’s worse” I almost replied: “sure, your face for example” I have to listen to BS like this all the time and then it’s better not to ask at all

    Reply
  15. Mel Palmer says:

    I still remember being told I shouldn’t let it rule my life. But it has to, to a degree, because if I ignore the fact that I’ve got it, I could get very sick by not taking my limitations into account. So I don’t agree that you can’t let it rule your life

    Reply

Leave a Reply

Want to join the discussion?
Feel free to contribute!

Leave a Reply

Your email address will not be published. Required fields are marked *