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Rethinking what not to tell a person with MS

By Dan Digmann

I sit silently on the sidelines and take in the online multiple sclerosis communities’ conversations relating to comments people make about their MS.

Statements relating to topics such as “the worst things people say,” “things people should never say to you about your MS” and “what you wish people would stop saying to you about your MS” are sure-fire ways to kickoff engaging and impassioned discussions.

With each reply, I’m right there with them shaking my head in affirmation because, yes, I have heard them many times myself. I’m sure you have as well. 

It’s as though the second we were diagnosed or the moment someone hears we have MS, they come at us with pseudo-encouragement and unsolicited advice such as:
  • Keep your head up! It’ll go away soon.
  • My aunt’s BFF had MS once, but all she did was change her diet, and she was better – just like that.
  • Maybe if you exercised more it would improve.
  • You just need to think more positively. Maybe pray a little more.    
  • But you don’t look sick!
  • “Yes!” I silently say to myself. “I’ve heard them all a time or two, or 20.” 

But my nods of affirmation inevitably shift to shakes of negation.

“Careful what you wish for, Dan, and others chiming in on the conversations,” I say to myself. “Careful what you wish for.” All this supposed pseudo-encouragement and unsolicited advice is better than the alternative.

Just ask Allison Reynolds.

I remember watching Allison as she served an all-day detention one Saturday and listened in as she had an intense discussion with Andrew Clark, another student serving detention with her and three other students. Their heated-turned-heartfelt conversation went something like this:

ALLISON: “You have problems.”

ANDREW: “Oh, I have problems?”

ALLISON: “You do everything everybody ever tells you to do, that is a problem!”

ANDREW: “Okay, fine, but I didn’t dump my purse out on the couch and invite people into my problems. Did I? So what’s wrong? What is it? Is it bad? Real bad? Parents?”

ALLISON: “Yeah.”

ANDREW: “What do they do to you?”

ALLISON: “They ignore me.”

For those of you wondering, yes. Yes I did just set up the scene from the 1985 John Hughes film The Breakfast Club and quote the dialogue between the characters Allison, played by Ally Sheedy, and Andrew, played by Emilio Estevez.

Few things are more devastating or lonely than being ignored. Just going through life being look past. Unnoticed. 

Among my biggest fears when I first was diagnosed with MS were that my friends and family would:
  • Stop paying attention to me and move on and forward without waiting for me to catch up with them.
  • Continue including me in everything and act as though nothing was different and, while they wouldn’t be ignoring me, pay no attention to the reality that I was living with a progressive disease.

I wholeheartedly agree with the frustrations stemming from the aforementioned chats about the comments other people make to those of us living with MS. They can be described as anything from heartless to ignorant, dismissive, obtuse, insensitive, naïve, misinformed and so forth. 

Still, I find it is better for me to give the benefit of the doubt to the person offering the pseudo-encouragement and unsolicited advice and think of their words as well-intended. Call me the one who is naïve, but I always consider it as being better than the alternative.

These people aren’t ignoring me nor the fact that I have MS.

And with each comment that shouldn’t be said to a person living with this disease, I continue taking it with a grain of salt and turn it into a teachable moment. Because for as much as we say these well-wishers need to learn about MS and what they really need to say, who better to teach them than the people who are living with the disease?

They are the students. We are the teachers. And until this disease is cured, class is always in session.