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5 Things Not to Say to Someone That Has MS

Updated on May 31, 2012
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As someone with multiple sclerosis, I've discovered that one of the most interesting aspects of the disease is that it makes people around you say dumb things. This is to be expected, I suppose. Most people don't know much about the disease, and many symptoms of MS are invisible, so you can't really tell how it's affecting someone. It can be hard to say something supportive when you don't really know what's going on.

There are a few specific things, however, that people seem to be inexplicably compelled to say to people with MS, that really shouldn't be said. If I were the only one that noticed, I wouldn't bother writing this, but I've seen the topic come up repeatedly in MS forums and support groups, and these particular statements almost always seem to be mentioned. I thought perhaps it might help to bring them to the attention of a wider audience.

MS - Invisible Symptoms:

1. "You don't look sick"

This is probably the number one thing that people with MS don't want to hear, which is unfortunate, as it also seems to be the number one thing that people want to say to them.

In general, people like to be complemented on their appearance. It can come as a surprise, then, when someone doesn't want to hear that they don't look sick. The truth is that after a while, a person can simply get tired of hearing about how good they look when they consistently feel so bad.

Another sad truth is that, because many MS symptoms are invisible, people with MS are sometimes accused of exaggerating, or even faking, their symptoms. Right or wrong, someone with MS may begin to wonder if saying "you don't look sick" might actually mean "I''m not so sure you are sick".

2. "I know how you feel"

Saying "I know how you feel" is a common way of showing support and empathy for someone. Unfortunately, saying this to someone with MS may be the single best way there is of demonstrating that you really don't understand the situation.

If you're a stranger or just a casual acquaintance, it doesn't matter. Someone with MS will see that you're trying to be supportive, and will appreciate it. If you're closer than that, however, you really owe it to your friend or loved one to learn enough about MS to know better than to ever say "I know how you feel".

3. Any motivational cliché

Seriously. We know the clichés. Everyone knows them - that's why they're clichés! They're great for little pick-me-ups to help get you through the day, but they're no substitute for actual thought. If you want to be supportive, take the time to actually say something.

4. "Everything happens for a reason"

This one is double-bad. Not only is it a cliché (see item #3), but it seems to me that it's also just a really dumb thing to say.

I'll be honest. I don't know nearly enough about the nature of existence to say whether or not everything happens for a reason. Maybe it does, but if so, I have to tell you that this really doesn't make me feel better. Maybe I could meet with someone in charge to discuss exactly what some of these reasons might be?

5. "You're lucky because you don't have to work"

Again, it boggles my mind, but people actually say this. Do you really think you'd like to trade places with someone who has MS so that you can get to stay home from work? Believe me, you don't.

There aren't only physical challenges (think of your worst day ever and triple it. Now realize that you're never going to get better), there are financial ones, as well. Disability pays me about 25% of the salary I used to earn as a computer programmer-analyst. Is that an adjustment you'd feel lucky to have to make?

The strangest part is that I know the people who say this are actually trying to be supportive and encouraging. I'm just not sure exactly how they think this statement is going to do that.

I imagine that people with conditions other than MS have similar complaints about statements like this. The bottom line is simply to stop before you speak, and think about what it is you're about to say. Come to think of it, that's probably good advice in any situation.

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    • Yvonne Decelis profile image

      Yvonne Decelis 

      6 years ago from Boston, Massachusetts

      Thank you for writing this. I've heard many of the things you list off. Feel free to check my hub pages out - I'm working on writing (hopefully) a book about what it's been like having both MS and Fibromyalgia. By the way: AMEN re the "you're lucky you don't have to work" comment. I had someone say "wow - it's like you're on a permanent vacation. I'm so jealous" and I wanted to slap her for saying it. Some people just don't think before they speak.

    • Doc Sonic profile imageAUTHOR

      Glen Nunes 

      7 years ago from Cape Cod, Massachusetts

      Elettaria, I can identify with much of what you've said, although I've not heard "I'm sure God will cure you". That's also a pretty bad one. I don't know that much about Myalgic Encephalomyelitis, but I understand that it can be difficult. I hope you're finding some ways to cope. Thanks for the comments.

    • profile image

      Elettaria 

      7 years ago

      Here's another one, which is a sort of follow-up to #4: "I'm sure God will cure you." This actually manages to be worse than someone saying condescendingly, "I'm sure you'll get better," after you've patiently explained that your condition is life-threatening and you've been deteriorating steadily for fifteen years. I don't know whether the God comment is comforting to some believers, but it wasn't comforting to me when I was a practising Jew, and it's certainly not comforting to me now that I'm an atheist.

    • profile image

      Elettaria 

      7 years ago

      "Everything happens for a reason" is particularly nasty because it implies that you are ill as a punishment for something you did wrong, or that you deserve to be ill to teach you a lesson of some sort.

      "I know how you feel" is often used as a way of invalidating someone's illness. You might try to explain that you had a blinding migraine that made it impossible to see or move, and someone will say, "I know how you feel - I get headaches too. Have you tried taking a paracetamol?"

      I have ME rather than MS, by the way, but we have vaguely similar conditions and certainly get the same bullshit in this respect.

    • Angela Brummer profile image

      Angela Brummer 

      7 years ago from Lincoln, Nebraska

      This is helpful thank you for the advice!

    • Doc Sonic profile imageAUTHOR

      Glen Nunes 

      7 years ago from Cape Cod, Massachusetts

      nifwlseirff, unfortunately, you're exactly right. I've found very few people around whom I can take off the mask.

      I haven't yet heard "Aren't you better yet?", that's a particularly dumb one. I do know that most people who say something like "You look good" are trying to lift your spirits, and really have a hard time understanding why saying it is such a problem. Some people will conclude that if they can't even say "You look good", then you're just too hard to talk to anymore. So, you wear the mask...

    • nifwlseirff profile image

      Kymberly Fergusson 

      7 years ago from Villingen Schwenningen, Germany

      I think one of the worst things said to anyone with a chronic condition is "Aren't you better yet?".

      With multiple invisible chronic conditions, I've heard the lot. I particularly hate hearing "You are looking well" from people close to me, who should know my conditions.

      Without a mask, you lose friends. Masked, you may keep relationships but have no understanding/support. Impossible to juggle.

    • Doc Sonic profile imageAUTHOR

      Glen Nunes 

      7 years ago from Cape Cod, Massachusetts

      People are funny that way, Mhatter99. I don't understand it, either. Thanks for the comment.

    • Mhatter99 profile image

      Martin Kloess 

      7 years ago from San Francisco

      What I find interesting: people think by imitating my handicap, communication improves.

    • Doc Sonic profile imageAUTHOR

      Glen Nunes 

      7 years ago from Cape Cod, Massachusetts

      Teresa and Crystal, thanks for your comments and encouragement. I know that people don't have bad intentions when they say some of these things, they just don't think.

    • Crystal Tatum profile image

      Crystal Tatum 

      7 years ago from Georgia

      Doc Sonic,

      It makes me sad that there is even a need for a hub like this. I know we all sometimes say things we haven't thought through or wish we could take back - I'm certainly guilty of that - but seriously? What are people thinking? Sometimes I think people simply can't see past their own noses. When my father died, someone said to my mother, at the funeral, 'This could turn out to be the best thing that ever happened to you.' Perhaps it was meant to be encouraging, as in , you never know where life might lead, but if that person had spent one minute imagining herself in my mother's shoes, perhaps she would have chosen not to say that. It's always different when it's not you or someone you love. I'm glad you have the courage to write about these issues. Well done.

    • Teresa Coppens profile image

      Teresa Coppens 

      7 years ago from Ontario, Canada

      I think you hit the nail on the head with your last statement. Many people don't think before they speak in so many situations. I have a friend and a brother-in-law with MS. I know their lives are filled with daily challenges. I applaude you Doc in educating all of us!

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