When people hear that I have multiple sclerosis (MS), it seems like they don’t know what to say or how to react. I know most reactions come from a good place and a kind heart, but some comments can come across as insensitive, or even rude, depending on how they’re said.
In these situations, I typically just smile because it’s easier than explaining everything I really feel. But finding a way to be supportive, compassionate, and encouraging can make a big difference for those of us living with MS. Here are some suggestions for what not to say (and what to say instead).
1. ‘You’re Too Young to Have MS’
It’s hard not to laugh at this because it’s so far from the truth. MS, like many chronic conditions, can affect people of any age, gender, race, or sexual orientation. In fact, most people are between 20 and 50 years old when they get the diagnosis. So, no, I’m not too young. I’m 39, so I guess you could say that I’m just the right age to have MS.
When you feel like telling someone they’re the wrong age to have MS, try this instead: “I’ll never understand what you’re going through, but I’m here for you.”
2. ‘But You Don’t Look Sick’
You’re correct that on the outside, I do not look sick, but I didn’t realize I needed to look a certain way for people to believe that I have MS. When someone says this, I think to myself, “How am I supposed to look?”
I love the old saying “You should never judge a book by its cover.” That applies to people with chronic conditions, too.
I’m very active and mobile, so to the naked eye, yes, I look fine, but internally, I’m far from fine. My immune system is attacking the protective covering of my nerves, which disrupts communication between the brain and the body. It’s an internal battle I will fight for the rest of my life.
I am aware that someday I may need assistance that will change the outward appearance of my illness. For now, I’m going to enjoy my independence and live life the way I live it.
So when you’re tempted to tell a person with MS that they don’t look sick, try this instead: “You look so good, but how are you really feeling?”
3. ‘I’m Sorry to Hear About Your Diagnosis’
Why are you sorry? Unless someone has a voodoo doll of me and wished this upon me, there is no need to be sorry. I know this comes from a good place, but being sorry or feeling sorry for me doesn’t change anything. I’m not sorry. I’ve learned a lot about myself because of my health struggles. This is just the hand that I’ve been dealt in life, and I can accept that.
Not sure what else to say? How about: “I know you are going through a lot; do you want to talk about it?”
4. ‘You Should Get a Second Opinion’
I actually did that. I got a second, a third, a fourth, and a fifth opinion. Hearing the words “You have multiple sclerosis” five times is enough for me. I don’t think any other opinion will change that. So, unless you know someone with a magic wand to cure me, I’m pretty confident that I do, in fact, have MS.
Before telling me to get a second opinion, try asking about my diagnosis process, or maybe just say, “It sounds like you have a good team of doctors and a plan in place.”
5. ‘I Know Someone With MS and They Are Fine’
This one irritates me to the core. I’m happy to hear that this other person is doing well, but they are not me. Let me tell you my experience before you assume that we are all the same. Every person living with MS has their own unique story. The one thing we have in common is that we have multiple sclerosis, but it affects different people differently. We are fighting the same fight but in different rings.
Instead of telling me about someone else with MS, try: “I know someone with MS, but I don’t know a lot about the condition. How can I learn more?”
6. ‘If You’d Exercise More, You’d Feel Better’
Yes, exercise is great and helpful for everyone’s overall health, and I do exercise every day. I do yoga, lift weights, and do cardio. Guess what? I’m still sick. I still have MS.
Even with doing all these types of exercise, I still have good days, where I feel like I could take on the world, and bad days, where I can barely move to get out of bed. Physical activity is good for maintaining my strength and helping my balance, which MS can affect. Some days are easier than others, but it still doesn’t fix the internal battle on my nerves.
Fun fact: I run several 5Ks every year, and although I make it through them, I also pay for it for a day or two after with pure exhaustion.
If you want to encourage me to exercise, how about saying: “Would you like a gym buddy? I’d love to be part of this journey with you.”
I know I’m not alone in getting tired of hearing these things, but that doesn’t make it any easier. If you find yourself not knowing what to say or how to react to hearing that someone you know has multiple sclerosis, instead of jumping to how they look or giving advice that no one asked for, ask a few questions. Be there. Be a friend. Be someone that they can lean on and feel comfortable with.
Important: The views and opinions expressed in this article are those of the author and not Everyday Health.
EDITORIAL SOURCES
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Jason Chua, MD, PhD, is an assistant professor in the Department of Neurology and Division of Movement Disorders at Johns Hopkins School of Medicine. He received his training at the University of Michigan, where he obtained medical and graduate degrees, then completed a residency in neurology and a combined clinical/research fellowship in movement disorders and neurodegeneration.
Dr. Chua’s primary research interests are in neurodegenerative disease, with a special focus on the cellular housekeeping pathway of autophagy and its impact on disease development in diseases such as Parkinson disease. His work has been supported by multiple research training and career development grants from the National Institute of Neurological Disorders and Stroke and the American Academy of Neurology. He is the primary or coauthor of 14 peer-reviewed scientific publications and two peer-reviewed online learning modules from the American Academy of Neurology. He is also a contributing author to The Little Black Book of Neurology by Osama Zaldat, MD and Alan Lerner, MD, and has peer reviewed for the scientific journals Autophagy, eLife, and Neurobiology of Disease.
Jennifer Schropp lives with relapsing-remitting multiple sclerosis (RRMS), trigeminal neuralgia, and endometriosis. She shares her story and experiences to help others who may be struggling with these conditions. Being so open and honest about her struggles and victories led her to writing, including being a personal blogger for Everyday Health.
Schropp spends countless hours being a patient advocate. This has given her a purpose in life that she never saw coming. Aside from connecting with or helping other patients, she has also learned a lot from them. For the past four years she has helped organize the Everyday Endo Tweet Chat for Everyday Health.
She is currently residing in a small town north of Pittsburgh with her husband and her dog. They love spending time at their local coffee shop and attending events. Schropp is passionate about photography, writing, reading, meditating, and fitness.
