Sh*t People Say About MS: The Stuff You Wouldn't Believe

Jamie Tripp Utitus
Written by
Jamie Tripp Utitus

Now that I have been living with MS for a few years, I feel like I am becoming a little less sensitive to some of the stupid things that people say. When I was first diagnosed, I have to admit, some of their comments really hit me hard. I felt like close friends, family and people that I cared about were letting me down in a way. Their responses to my diagnosis felt awkward, dismissive and sometimes downright insensitive.

I carefully chose whom to initially tell about my diagnosis, and I quickly learned that they went one of two ways; they either acted like I had little more than a cold, OR like I was going to die…in five minutes. Both were sides of the spectrum I just couldn’t handle. I wanted a little credit for what I was experiencing, but I didn’t want the worst-case-scenario cloud following me everywhere I went either.

I know many of you can relate. Unfortunately, well-meaning people continue to say stupid things to people with MS every day. The other day I took an informal survey on my Facebook page and asked people about the dumb sh*t people have said to them when they told them they had MS. I thought I had heard it all. I was wrong. Brace yourselves, some of these are really bad, and YES they are true!

“My mom died of MS”. And, “You really need to get out and walk more.”

“Maybe you shouldn’t be drinking diet coke.”

“At least you don’t have cancer.”

“It could be worse!”

Them: “How are you feeling?” Me: “I have had some pretty bad fatigue and pain the last couple of days” Them: “Me too!!!”

“Is it contagious?”

“Is that an STD?” (For real?)

“Good thing you are already married. It is hard enough finding someone when you are normal…”

“It can’t be that bad.”

“Well, at least you won’t die from it”

“Do you still have it?”

“Yeah, I heard.”

• And then the classic, “But you don’t look sick!”

Over time, I have come to realize that people really aren’t being insensitive; most of them truly just don’t know what to say. It’s kind of like when someone dies and you go to a wake. You have to figure out what that heck you are going to say to show your empathy and somehow make it better. As if you could. So I have tried to strengthen my own armour and not let these comments get to me the way they once did. I even have developed some standard comebacks that I use when I do feel offended. I will say something like “huh, that’s interesting” or “what do you mean by that?” as a way to try and make people think about what they have just said, without sounding like too much of a drama queen. I know it is not much, but it is my little way to try and educate people to think more before they comment on my MS.

What dumb sh*t have people said to you about your MS? What IS the right thing to say? Share with us on Facebook.

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