What Not To Say

Things you might want to avoid saying to someone with MS

Most people who say these things don’t mean to cause hurt feelings. With that in mind the author offers a guide for friends and family members.

But you look so good …

I was diagnosed with MS two years ago. Of course I don’t think that makes me an expert, but when a family member mentioned an old wives’ tale about the disease and tried to convince me that it was true, I thought someone really should create a guide.                                                  

To be honest, I’m not sure what feelings this is supposed to evoke, but the speaker, perhaps unknowingly, has just insinuated:

  • People who look good aren’t supposed to have an illness
  • Suffering is always visible

Just because someone looks as though they’re doing extremely well doesn’t mean that they aren’t experiencing numbness all over their body, the MS “hug” (described as having a large belt cinched tightly around your torso), cognitive fog, or fatigue beyond your wildest dreams.

Please feel free to tell us how good we look, but not in spite of our MS. We look good – and we also happen to have MS.

Oh, I know someone who has MS … !

As I tell more people, many immediately remember someone else they know – or knew. What comes next depends  on prior experience. I’ve received a super cheerful “Oh my boss’s wife had that. She’d be sick sometimes, but get better right away.” I’ve  also received shocked silence, followed by “My sister had MS. She didn’t do well.”

 Please remember MS is not a one-size-fits-all disease. We’d like you to listen and understand that each of us has symptoms that are unique to us. You don’t have to keep your prior experiences with MS a secret. Just understand that everyone is different.

Are you sure you have MS …?

That question can toss a wrench into the whole acceptance process. All it takes is a pinch of doubt to throw us off track. We have a right to question our doctors if we aren’t sure or need further explanations, but this question is almost like asking us to prove what we are experiencing.

 Why not ask how we are feeling to start a discussion? Or what helps relieve our discomforts? Or if we need any help? (But only if it’s really meant.)

 Thank you for caring about us!

The people who ask these questions are usually coming from a place of concern, even love. I’m so thankful that not everyone runs away or is afraid to open a dialog. Those reactions are so much worse. Advances in MS research to find a cure are happening every day. When a cure is found, we can all celebrate together.

What is the worst thing someone has said to you? Write us at inland@multiplesclerosis.co.za

(Article courtesy of Maxine Young – freelance writer – Momentum  Winter 2009 – 10 – National MS Society New York)