Top Ten List of Things You Should Never say to Someone with MS

For the most part, we are all pretty nice people who want to be kind to each other. But when you have just been told that you have a chronic, debilitating, life altering disease, you are likely not feeling so great. So when someone wants to talk to about your diagnosis you likely appreciate their sympathetic comments. And they mean well, they really do. I have been on both sides of this conversation.

I was the sympathetic person wanting to make brilliant comments of hope, comfort and advice to my newly diagnosed sister, Laurie. And then, almost ten years later and newly diagnosed myself, was on the receiving end of the well-intentioned comments of hope, comfort and advice. So I know now how these comments can often make the MS’er want to scream. (See prior posting about how the movie Scream relates to multiple sclerosis.)

And, if you have been recently diagnosed, you have the right to scream. But to keep you from screaming at people who really do want to help, I have come up with advice to the well-meaning. Here is Yvonne M. deSousa’s top ten list of things you should NEVER say to someone with MS.

Hand in stop position

10. Are you sure it’s not just all in your head?

9. That’s not MS-that’s old age.

8. You should look into that.

7. Oh, that’s nothing- I get that all the time.

6. You’re tired? I’m really tired.

5. You could die from this you know.

4. But you don’t look sick to me.

3. You can’t blame MS for everything.

2. Isn’t that what Michael J. Fox has?

1. How do you get one of those handicapped parking thingy’s anyway?

So, if well wishers are reading and disregarding my above list they should be prepared that the MS’er they are talking to might just start screaming. If they don’t scream, but they have lost all semblance of worrying about the feelings of others, here is my top ten list of what they might just blurt out in reply.

10. Are you sure it’s not just all in your head?

Of course it is all in my head! And a bit in my c-spine too. Sit down. Let me show my MRI.

9. That’s not MS-that’s old age.

So for some strange reason I have just aged thirty years in five seconds. I feel so much better now.

8. You should look into that.

Thing is, I am a little overwhelmed right now and that is about the tenth suggestion I have received just in the last hour on things to look into that might or might not be helpful How about you look into it and get back to me, okay?

7. Oh, that’s nothing- I get that all the time.

Really? Nothing? Damn, I have been shooting myself up with drugs made from Chinese hamster ovary cells for the fun of it. (Think I am making that up? Get a magnifying glass and look through it at a box of Rebif injections.)

6. You’re tired? I’m really tired.

Tired huh? Last night I started sobbing at the idea of brushing my teeth as my arm was too exhausted to lift the tube of toothpaste. Are you THAT tired?

5. You could die from this you know?

Dammit it! I thought this meant I was going to live forever. Geez!

4. But you don’t look sick to me.

That’s great news. Could you call my doctor and let him know? Maybe he got it all wrong.

3. You can’t just blame MS for everything.

Watch me!

2. Isn’t that what Michael J. Fox has?

No, this is the disease that Montel Williams has. You know, the disease where he wrote that book and said it was ok to smoke pot. Got any on you?

1. How do you get one of those handicapped parking thingy’s anyway?

You’ve got to go see my buddy Vinnie down at the RMV. He hands them out for $50 and a subscription to the beer of the month club. Here, let me give you his number.

Please don’t think us MS’ers are ungrateful. We really do appreciate the support and talking about the disease is better than not talking about it. If, after reading the above, you are at a loss as to what to say to someone with MS then please note the following;

This is one occasion where it is perfectly politically correct to use profanity. Here is a no-fail example of something that is perfectly appropriate to say to someone with MS.

“I am so sorry to hear that. That #@%[email protected]&$ sucks!”

Image: farconville / FreeDigitalPhotos.net

25 thoughts on “Top Ten List of Things You Should Never say to Someone with MS

  1. Fantastic Yvonne! SO proud of you honey! I hope you don’t mind me sharing your link with others:-)
    Wishes for great success! You are off to a tremendous start!
    Love, Michele

  2. This is great and Yvonne, you are right on the mark. Humor will get you through anything. I’ve learned that for the last 38 years of having a spinal cord injury. I trip over a hair and say to myself with a chuckle…”OK Chrissy, pay attention!” Or I sort of wobble as I walk through the Mall and people look at me and I just have to smile and look back at them. I’m thinking…”No…I haven’t had a few too many Amarettos.” Although sometimes that is fun!!! This website is a wonderful idea.

    • Thank you so much Chris! Isn’t funny that the assumption of others is usually alcohol! Don’t I wish! I can barely drink wine anymore without fallin asleep!

  3. Yvonne,
    I had no idea you had been dx with MS. THAT F*%$ING SUCKS! One of my dearest friends here in FL was diagnosed about 5 years ago. I hope you don’t mind me forwarding your link. I think she’ll find your fine writing and sense of humor comforting and enjoyable!

    Thanks for the dos and don’ts….they do help the well intentioned, but clueless people who care. I have a list of things not to say to someone when their mother has died. Ironically, the thing TO say to someone who has lost their mom is the same thing you say to an MS’er re: their symptoms…”Really? That FUCKING sucks!”

    I look forward to reading your posts, hearing your celebrations, and listening to you bitch about MS. Consider me a follower!

    • Hi Nicole- how have you been? Thank you so much for your comments and yes, please send this link to your friend and anyone you think may enjoy the site. I hope your friend is doing ok. I am not surprised that “I’m so sorry- that *$%#@%&# sucks!” is appropriate for the loss of a parent. When in doubt, that emotion is always sincerely sympathetic. And I imagine that while time changes grief, it doesn’t take it away. So to you I say “I am so sorry about your loss-that %%#&$#@ sucks!”
      Thank you for checking out my website and passing it along.

  4. Yvonne, your website absolutely made me smile. Several times 🙂 You are an amazing person who has harnessed the power of humor. You are an inspiration and I love you.

  5. OK is it just me or have you been overwhelmed with suggestions and emails telling you that MS is caused by Diet soft drinks? Really…even my family tells me this. I have to shut them down with “I haven’t drank a diet coke in over 20 years” But it’s not just this, everyone seems to be an MS specialist once they find my DX. I have found that the easiest way to shut them down is to tell them “My treatments are between my neurologist and I”

    They are all well meaning. Especially when they tell me
    BUT YOU LOOK SO GOOOOD!

    • Yes and Yes to the first two questions only it was the aspartame in diet coke that was the culprit. I cut out aspartame but surprisingly still have MS. And, “but you look so good was #11 on my top ten list!” Thank you so much for posting and relating!

  6. Lilliana told me about your site and she’s right you are funny. I too have MS. Diagnosed in 1996 or was it 1997. I am doing well. I take copaxon and I ride my bike for the Nat MS Society and MSGlobal. I look forward to reading more. Good luck and thanks for writing. Kathy

  7. lmao! I love it – I haven’t been in a while, but I’m a fellow MS’er from St. E’s group:)
    I also came up with a list and I think I may have distributed (via my mother of course) of things not to say……my favorite…. “Well, you look great! Good for you!”
    Yay! They think I’m purty, which I could care less about when I was in a relapse and in the shock of the 1st year with MS….
    Keep on using your humor, for yourself and for others’ sake!
    🙂 Shannon

  8. Funny, yet so sad. People are so judgmental and always know better. I don’t know what I suffer from. I know quite a few MS sufferers, and my ‘condition’ has many similarities. The toothpaste really stuck with me, as I keep taking breaks from typing as my arms weigh 300 lbs each AND keep going numb! Looking forward to seeing a Neurology specialist out of state next month. God Bless You for sharing your life, and misery, with other!

    • Hi Simon I am so sorry to hear that you have troubling symptoms. I am sending you many well wishes and prayers that whatever is going on is not serious. If you do discover you have an illness, please turn to as many others as possible for support, including an online community. Talking to people going through the same type of things has been a huge help to me. The other thing Ihave learned is that it is crucial to keep your sense of humor! Laughing is such an excellent release. Thank you for checking out my blog and please visit again, anytime you need a smile.

      Yvonne

  9. Humor is key when fighting something like MS. I frequently tell people….
    “Everyone has their shit in life. MS is My Shit.”

    Hey, look the acronym even fits…..coincidence??

  10. Hi Yvonne,
    I was in the Boston University class you presented for a few weeks ago. Prior to your presentation, I was completely blind to the severity of the MS symptoms. However, your presentation and this blog in particular have opened my eyes to the intensity of the disease. I thank you for making a list of things that people with MS do not want to hear, because, while humorous, some of these comments are something I would never think twice about saying. (Except number 5 and 10… I would never say those!) Regardless, your blog is I’m sure very helpful to those with MS to commiserate, but also to hopeful future providers.

    Thank you,
    Carly Purcell

    • Hi Carly- thank you so much for your comments and for following up with my blog. Your comment about #’s 5 and 10 made me laugh out loud, which of course, is my favorite coping mechanism! Thank you too for your willingness to be open to what myself and other people with chronic illnesses have to say about what they are dealing with and what would be helpful. You’d be surprised at how many healthcare providers are not open to this and think they know everything. It is so frustrating! As far as I am concerned, you already possess the greatest tool a healthcare provider could have. My best to you in your future career. I just know you’re going to rock it!!

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