What Not To Say To Someone With MS

Cardiff-20130530-00192When I was going through the whole MS diagnostic process, people said the strangest (and hurtful) things to me.

It was hard enough coming to terms with MS, far less finding smart replies to insensitive comments. Everyone has an opinion and they can’t wait to give it to you.

Even after diagnosis, the comments still keep coming, perhaps because MS is, for now, a mostly invisible illness for me and trying to convey the symptoms to other people is as difficult as counting brain lesions without an MRI.

So here’s my handy print-out-and-keep list of what not to say to someone with MS. Give it to all your newly-diagnosed friends to prepare them for the onslaught and before long, they’ll have ticked every one, several times over:

  • You need to stay positive.
  • You’ll be fine, they can do wonders these days.
  • My auntie/friend/great-uncle Billy had that, and they’re great now.
  • When are you giving up work?
  • I’ve heard Diet Coke and chewing gum can give you MS. 
  • You get to sleep a lot? Wow, great symptom, wish I had that. 
  • Hey, it could be worse. 
  • But you look so good!
  • If you get a blue badge, can I borrow it?
  • Have you tried (insert any number of miracle cures here…)?
  • You’re so brave.
  • You’re cancelling our evening out…AGAIN??
  • At least you don’t actually look disabled. 
  • You’re not using that old MS excuse again, are you?

So what should they say? Best piece of advice is not to presume things, just ask me questions. Ask what it means to me and my life. Everyone’s MS is different.

And if you don’t know what to say, say nothing. Just give me a hug and crack open the chocolate….

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21 thoughts on “What Not To Say To Someone With MS

  1. Ellen says:

    Ugh. I’ve heard most of those too. Or how about, “Are you sure? They just give that diagnosis to a lot of people these days” (said in a tone suggesting there’s nothing wrong that a little sleep and maybe a few vitamins wouldn’t fix).

    And, once you do get that parking placard, then people glare at you with hate as you struggle to get your groceries in the car because you look so good nothing could possibly be wrong with you! (Perplexingly, I even get this sometimes when I’m using my cane! I guess they think if you’re not actually in a chair, then you’re just lazy and can’t be bothered.)

    On a related note, when someone close to me was diagnosed with Parkinson’s, friends helpfully offered up stories of people they knew who had it and who were incapacitated and in need of round-the-clock care. Books were helpfully offered about incapacity and caregiving. This is not what you want to be looking at when you’ve just been diagnosed and are still in the early stages! It boggles the mind–do these people really think they are doing a service?

    And I really, really hate the one related to #2 on your list: “They have such great medications for that these days!… I’ve heard.”

    • stumbling in flats says:

      Hiya Ellen!
      That’s a good one for the list, ‘Are you sure??’ These people are crazy. Because of course, I could be making it all up for the attention.
      I have also been told ‘helpful’ horror stories,usually accompanied by a sad face. Stories of people going straight downhill, blah blah blah. Oh, thank you, I really wanted to hear that!
      I just don’t understand people. I know people with cancer are fed up being told to ‘fight back’ and that must drive them mad too. So unfair.
      My own pet hate is the Diet Coke one. I was sent an email full of scare stories. Too late really, seeing as I had already been diagnosed, lol.
      X

  2. Chris says:

    Hi Stumbles,

    How about ,

    Jacqueline Du Pre and Clifford T Ward had MS and they died from it. How long will you live for?

    x

    • stumbling in flats says:

      Hi!
      had to ask my mum who Clifford T Ward was, lol. That’s a mean thing to say to anyone with MS!!
      X

  3. stevedomino says:

    a variation on number 3:

    “oh, i know someone who died from that”

    thanks…!

  4. “I’ve heard Diet Coke and chewing gum can give you MS.”

    so many people told me this, drove me insane :/ and even showing these people the science that disproves it doesnt help. they still believe diet coke gives you MS (yes I drink diet coke :p which is why people kept bringing it up)

    “At least you don’t actually look disabled.”
    I actually got a variant of this at college, “you dont look like you need help, you walk fine” yeah for the moment idiot :/ got an apology from his boss, who did know that MS symptoms change daily. i think she was worried i would put a complaint in about the college :p

    and on the same vein, people say they same when they see me park in a disabled bay. I have a badge for a reason, but because i am not old or in a wheelchair, I get dirty looks. Most of the dirty looks/telling me to move, around here are from older people who do not have a badge but still park in one of the bays :/

    have been told all of those sayings and more, people think they are being helpful for some reason, or just want to feel important. or they just dont know how to react round a person with MS, so say stupid things :p

    hmm sorry, comment got long :p

    • stumbling in flats says:

      Hi Jennifer,
      Glad it’s not just me who gets that stupid Diet Coke comment. It drives me bonkers. And yes, I drink Diet Coke. But enough to alter my brain???
      I also have a badge, which I only use when I absolutely need to, but still get filthy looks, comments and abuse when I use it. Normally from sprightly pensioners parked right next to me!
      It’s so hard to convey MS to people. I’ve given up trying. I think it might be easier for a lot of people is I ‘looked’ disabled. Then they could patronise me even more, lol.
      X

  5. Sue says:

    Another great blog 🙂 Another one is because my memory isn’t that good now, I usually get oh it’s an age thing is that?? And would it not help if you rubbed some cream on it? Oh if only it was that simple!!

    • stumbling in flats says:

      Thanks Sue!
      Wouldn’t it be fab if it were that simple! My memory’s shot to pieces. Been on the phone all day explaining cog fog to them. Not easy to describe!
      X

  6. Hello,

    I know it seems a stupid thing to day but… I do talks on MS. If any of the people who make these daft comments would like someone to come and talk about MS, its effects, interesting facts and my story of how I cope then put them onto me via the website http://www.aid4disabled.co

    Thanks
    Patrick

    • stumbling in flats says:

      Hey Patrick,
      comment posted – so if anyone needs a little more info, please get in touch with the website above!
      X

  7. Tricia says:

    So, here we go again, you can read there faces, it’s your own fault!!!!!!!!!!!!!!!!!
    Both my sons in the last two years have been diagionished Type I Diabetics, you should see the list for that one!!!!!!!!!!!!!
    But we smile and say best look it up on the Internet, that should keep them busy for a while lol

    • stumbling in flats says:

      Hey there,
      Yup, it’s always, always our fault. We dare to have an illness like MS and therefore we should have all the answers, lol.
      But we don’t. We’re human. And that’s where the problem lies?
      X

  8. James Pagram says:

    “MS? Isn’t that yuppie flu?”

    “My dad had MS and he never missed a day’s work, he just needed a nap sometimes”

    “It’s not as if you’re disabled”

    ……..gotta love those haters.

    • stumbling in flats says:

      Hi there James,
      Oh yes, we hear it ALL!! I was speaking to someone recently who, out of the blue, said, ‘You don’t look like someone with MS’. Hmm. What to say??
      x

  9. Graham says:

    It does drive you mad,but people are generally ignorant, to things like this, I would have probably been the same if I didn’t have ms myself, I still try to play golf, though I can’t walk the course anymore, iv got a single buggy so that I can get round, someone said to me, (you are so lucky) see they just don’t think!! I wanted to say, I would rather be walking & carrying my bag, but what’s the point?? You don’t get it, till you’ve got it. Lol

    • stumbling in flats says:

      Very true Graham. I guess looking back, I could have been guilty of saying/doing some of the things I wrote about, so I hold my hand up! There’s so much I didn’t know about MS – especially the fatigue- that I wonder how much I don’t know about other illnesses too. Hmm. Definitely food for thought.
      x

  10. Dave says:

    “Oh! I used to work with someone who had MS, but they got him a little buggy and he’s alright now!” is the best one I’ve heard and one that made me think of building a hit list of people I’d want to run over if I ever got a little buggy of my own.

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