5 Common Responses for People Living With Multiple Sclerosis (MS)

Responding to 5 common MS comments

Find tips for discussing misconceptions about MS with friends and loved ones

For many of my friends, I was their first friend with multiple sclerosis (MS). They may have taken part in MS events at school or seen people with MS on TV. But I was the first person they knew who was living with the disease.

Since the disease affects everyone differently, my friends and loved ones weren’t entirely sure what to expect or how to act. Here are some common misconceptions I’ve heard about MS, and things you can consider when explaining MS to others.

1. What I heard: “You must be doing better because you look good.”

  • What I felt about it: To me, this loosely translates into “you don’t look sick.” This sounds like a compliment, but it immediately makes me wonder if I need to grab some sort of MS identity badge from my wallet. It is possible to have MS and look good. It is also entirely possible to deal with a ton of MS symptoms that no one can see. I am often tempted to say, “Thank you, I am indeed having a good hair day, but I cannot feel my left leg”
  • What they could have said: “How are you feeling today?” That’s it. I truly live my life one day at a time. This question allows me to validate what they may be thinking or let them know there’s more than meets the eye
  • What to do: The next time you hear this comment, I’d recommend trying to redirect the conversation with a statement like, “Thanks. I have my good days and my bad days.” Tell them what kind of day you are having

2. What I heard: “Wow, you don’t need your cane anymore!”

  • What I felt about it: I thought, “Yeah, but I do need my cane. It’s in the car. And I felt I could safely do the distance from my handicap parking spot into the diner with just the brace on my leg.” Just because I wasn’t using my cane at that moment does not mean I’m healed. It doesn’t mean I won’t use it later today. It means I gauged the distance and made it to the booth. I still have MS. So the next time I see my friend, I don’t want her to be sad or disappointed if I have my cane. MS comes with good days and bad days—and in this case really convenient parking!
  • What they could have said: “How’s your strength? I noticed you don’t have your cane. It’s great that you can go this distance without it.” Our friends have the best of intentions. Sometimes, it’s a matter of helping them understand that our condition keeps us guessing and our efforts are based on how we are feeling that hour of that day
  • What to do: In the future, let them know you appreciate their optimism and support. Point out what helped you stay mobile without the cane—the short walk to the entrance or the leg braces you may be wearing 

3. What I heard: “I read online that if you just give up certain foods, you’ll be fine.”

  • What I felt about it: It’s not that easy. From giving up meat to going gluten-free, I have tried it all. I still have MS. I am well aware that you might have a cousin’s friend’s college roommate who changed their diet and now runs marathons, but that’s not the case for all of us
  • What they could have said: “Are there any foods that help you fight MS symptoms?” “I know fatigue is a big challenge. Are there any foods that give you more energy?”
  • What to do: When someone says this to you, point out how varied the disease is for everyone. While it’s exciting to hear what has worked for some people, your definition of “fine” is very different. And your journey to achieve it includes a lot of things, not just one food source 

4. What I heard: “There’s a new drug out. Surely it’s a miracle cure!”

  • What I felt about it: It’s an exciting time for MS research and treatment. But everyone’s MS is different. And there are a lot of factors to consider, such as your treatment goals and preferences. Drugs for relapsing MS are doing what they can to help slow physical disability progression and decrease relapses. I know you are excited about the promise of new treatments, but there are many factors that go into choosing a treatment option
  • What they could have said: “Have you heard about this new treatment? Is it something you might be interested in? I am happy to send you a link to what I found”
  • What to do: Next time, I’d recommend saying something like, “Thanks for the update! A lot of new treatments come with side effects that need to be considered. If my doctor and I feel it may help, we will look into it”

5. What I heard: “If you’re in remission, you’re fine.”

  • What I felt about it: I know the last time my friend saw me I was in a relapse and not doing that well. So yes, I totally get it. Now I’m in remission, I might look and move a bit better than before. But there is so much more than meets the eye. For those living with MS, the side effects from their treatment can be a source of discomfort as well. Remission certainly is a welcome place to be, but it’s not all smiles and rainbows. No matter what, I still have stuff going on 
  • What they could have said: “I am happy to hear you are in remission. How are you feeling today?”
  • What to do: If you find yourself in this situation, acknowledge their relief that you are post-relapse. Let them know that nerve damage lingers. Remember that their definition of fine is very different from ours 

I don’t know where I would be today without the support of my wonderful friends. I know they don’t have a script to follow. Maybe some of these responses will help make future conversations a lot more predictable than living with this disease. And helping them understand what it’s like to live with MS helps them support me even more. It's a win-win!