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

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.
 
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.

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