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. Don’t Say, ‘You’re Too Young to Have MS’
Why not? It’s hard not to laugh at this, because it’s so far from the truth. MS, like many chronic conditions, does not discriminate based on 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 37, 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. Don’t Say, ‘But You Don’t Look Sick’
Why not? 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 that 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. Don’t Say, ‘I’m Sorry to Hear About Your Diagnosis’
Why not? 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. Don’t Say, ‘You Should Get a Second Opinion’
Why not? 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. Don’t Say, ‘I Know Someone With MS, and They Are Fine’
Why not? 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. Don’t Say, ‘If You’d Exercise More, You’d Feel Better’
Why not? 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.