What Not to Say to a Person with MS
People have the best intentions. They want to say something uplifting or profound to affect me in a positive way. They shouldn’t. It usually falls flat. I have lots of motivators in my life. Few of them are one or two-sentence clichés from friends, relatives, and acquaintances.
Let’s dive right in
“I know how you feel.”
No, you don’t.
The fact that you had a pinched nerve once, or the fact that you had a mysterious virus 10 years ago that doctors were never able to identify – neither of these qualify you to know how I feel. Even if you survived stage IV cancer or use a wheelchair because of a spinal cord injury, you still don’t know. The way that I feel is a product not only of my condition but of the entirety of my life experiences. Sure, you went through a lot, but you can’t possibly know how I feel.
I barely know how I feel.
“You look great.”
A. That’s probably a lie.
B. If I happen to look great, that in no way reflects upon how my disease is progressing, or how I feel. In fact, when I’m in a certain mood, if you tell me I look great, I may hear, “You can't be as sick as you say you are.”
“You should try acupuncture, bee sting therapy, etc.”
People with MS are inundated with unsubstantiated treatment ideas. If you think you have learned about something medically sound, an acceptable approach might be: “You probably already know this, but did you read about such and such a treatment?” Be judicious, however, because you only get to do this once for each person you know with MS (my rule).
“Mind over matter”
Did I mention that MS is a brain disease?
“Things have a way of working out.”
That’s not a serious statement — maybe when it comes to middle school best friends arguing, but not when it comes to chronic diseases.
“If anyone can beat this, it’s you.”
It’s not a matter of effort or talent or will. This is an incurable disease. I might accommodate it, but I won’t beat it.
“I feel sorry for you.”
Such a statement is the last thing a person with a chronic disease needs to hear. Empathy, yes. Pity, no.
“I’m so upset about your condition.”
"Please accept my apology for what I’m putting you through." Okay, that's a little snarky. I'll reserve that response for only the most egregious offenders.
“What doesn’t kill you makes you stronger.”
That might apply to certain infectious diseases, colds, and flues. My body is cannibalizing my central nervous system. My body is killing me, not making me stronger.
Yeah, I’ll get right on that.
“You’ll find it helps if you just smile more.”
“I am praying for you.”
I struggle with this one. The sentiment is undoubtedly genuine, but religion isn’t as integrated into our society as it was years ago. It seems almost presumptuous for someone to assume that I would understand or appreciate such a statement. Still, I often translate “I am praying for you,” into “I’m keeping you in my thoughts,” and it’s all good.
This leads me to the grand finale of absurd statements.
“Remember, Mitch, everything happens for a reason.”
No. Just no. Please leave now.
Not so absurd things you might say instead
What should you say to a person with MS? This is highly dependent on the nature of your relationship. For acquaintances, tread lightly:
“I’m sorry for what you’re going through.”
“I admire your resilience.”
Most importantly, resist the urge to give advice.
For close friends and relatives, also proceed with caution, but there’s room for more intimacy, room for commitments:
“Is there anything I can do to help right now?”
“Please call anytime you want to talk.”
“You’re not in this alone. You can’t scare me off this easily.”
Friends and family
Like acquaintances, friends and relatives must also resist the urge to give advice. But, for close relationships, there is wiggle room if the person with MS is making harmful choices. Be forewarned, however, that such intervention will require patience, tact, and unconditional love.
What are some absurd statements to which you’ve been subjected? What are the most thoughtful and comforting statements?
Have you ever experienced a "weird" symptom and wondered if others with MS have experienced it too?