What NOT to Say to People with Multiple Sclerosis

A Little Tact and Forethought Can Go a Long Way

Two female friends arguing at home
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No matter the medical condition, it can be challenging to say the right things. When you find out that a friend or a family member has multiple sclerosis (MS) and you do not know enough about it, it is easy to stick your foot in your mouth.

You may mean well and genuinely want to connect to a person with MS by saying some of the following things. However, you may not realize that several of these statements can hit a sensitive spot for your friend, making them angry, rather than endearing you to them.

If you are a person who has a friend, relative or acquaintance with MS, please take a look at this article. Hopefully, it will help you understand a little better where those living with this disease are coming from, as well as give you some tips on how to have a real conversation about MS.

"But you look so good!"

This statement infuriates many people with MS. Many would much rather hear that people are shocked that they have a chronic disease than having them think, "Wow. She looks so terrible that I was sure it was something terminal."

However, for a person with MS, this is hard to hear when they feel terrible at 9:45 am and know that they have to somehow make it through the day.

As "nice" as this comment may seem, it doesn't acknowledge all of the invisible symptoms that plague people with MS. The crushing fatigue, the bladder dysfunction that causes panic and embarrassment, the cognitive dysfunction that often leaves them lost in the middle of mundane tasks.

If the person with MS has already told you that they are suffering from heat intolerance that leaves them debilitated or that they are in pain, to tell them that they look good may be perceived along the lines of "But things surely cannot be that bad."

A better alternative to "But you look so good" might be:

"From the outside, you seem to be doing quite well, but how are you really?" This lets you convey that you are impressed that the person with MS seems so well, and allows the MSer to tell you what is really going on (if he or she feels like it).

"I heard that there is a medicine that cures MS."

There isn't. Those are the facts, plain and simple.

There are many medicines (called "disease-modifying therapies") that people with MS can inject, swallow or be infused with that have been shown to reduce the likelihood of relapses in people with relapsing-remitting MS. These are not a cure. There are no medications that help people with primary-progressive MS.

Many people are just trying to be upbeat and helpful by recounting what they heard about a "cure." However, if there were a cure, the person living with MS would know about it before you.

A better alternative to telling us about a "cure" might be:

Ask your friend if we had heard about the new MS medication that was in the news and what they thought about it.

"You just need to think positive thoughts."

This one can be very infuriating. Please, never tell a person with MS that it is "mind over matter." This implies that if he or she just could stop dwelling on the fact that every daily task is harder and that certain dreams may have to be abandoned, and focused instead on rainbows and kittens, everything would be just fine.

It is true that being angry or bitter for extended periods can be counterproductive, however, everyone has to find their own way with this disease. Telling them to think happy thoughts is the verbal equivalent to those horrible posters of the kitten stuck in a brandy snifter with the caption to "Try harder!" or a picture of a mountain with the words "Reach higher!" emblazoned across it.

A better alternative would be to:

Offer a little empathy to someone who has told you that they are going through difficult times with their MS. Feel free to ask questions, which may or may not be answered.

"I had an aunt (a sister-in-law, a teacher in high school, etc.) who had MS and she died from it."

Now, why would anyone want to hear about that?

There is no better alternative to this one.

"You should really try goji juice (bariatric pressure therapy, bee stings, etc.). It helped me get rid of my psoriasis (tennis elbow, plantar warts, etc.)."

Anyone would be very happy that drinking goat urine may have healed you from some malady. It is great that you found something that worked for you. They may even be intrigued and ask follow-up questions.

People with MS are no strangers to alternative and complementary medicine. Most have tried something – or lots of things – during the course of their lives.

However, it would be respectful for you to refrain from urging (or demanding) that your friend try some funky thing because it helped you. It can really irritate people who don't feel good.

A better alternative is to:

Share your experience, without implying that anyone else needs to try it. A more polite way for someone who is trying things (diets, massages, vitamins) would be to mention your latest experiment to those who may be interested. Wait for follow-up questions and tell them how it helped, without making recommendations unless asked.

Even then, you should be reluctant to share too much. People who end up trying these alternatives can get irritated if it turns out to be hard or disappointed that it didn't work for them.

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