Sh*t People Say About MS

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.