What People SHOULD Say to Someone Living with Multiple Sclerosis

There’s a marvelous piece written by Ashley Ringstaff called “MS & Things People Should Not Say.” It provides a solid list of statements people should never say to someone with MS. It garnered a lot of attention from readers, and deservedly so.

A few commenters asked the same question that caught our eye: What about writing an article on what people should say?

What a fabulous idea. This is a way to open the lines of communication between one another, a chance to use our voices to let others know what we need. Through education and awareness comes compassion, tolerance, understanding, and kindness.

Let’s begin.

What to say to someone who has MS

Being there for them

• I am here for you.
• I care about you.
• I’d really like to help as best as I can. You choose how often. I feel helpless and don’t know how to help. Is that okay with you?
• You can always lean on me.
• It’s okay to show your emotions to me. There’s no shame in that.
• I want to give you a great, big hug because I care.
• Let’s talk about how you really feel.
• Let’s figure out the best way to spend time outdoors, move around, get to appointments, see loved ones (fill in the countless ways to help.)

Understanding someone with MS

• I want to know what you’re going through. What does MS feel like?
• What does MS fatigue feel like?
• Why is MS sometimes called an “invisible illness” and why does this apply to some people and not to others?
• What’s a typical day for you? I want to learn about your struggles and successes.
• Please educate me on MS: What’s a lesion? Myelin? Autoimmune disease? Exacerbation?
• Are you getting enough emotional support? If not, how can I help?

Spending time together

• I’d like to come for a visit. Let’s schedule a date.
• Let’s go to a movie/lunch/coffee/dinner/comedy club (fill in your own choices.) I’d love to spend quality time with you.
• Would you like to make plans to get together with a group of friends?
• Would you like me to accompany you to your next doctor’s appointment? Would you like me to drive?

Learning about their experience

• Are you taking any MS medication? Can you tell me the name and how it’s supposed to help?
• Is it difficult physically/emotionally to inject? (If the person’s medication is a different one fill in the blank, such as infusions)
• What other medications are you taking? What are they for? How are you tolerating them?
• Are you happy with your MS specialist? MS Center?
• What tests do you need to have on a regular basis? Is the facility nearby? Would you like me to drive or go with you?

Offering help and emotional support

• Can I help with housework or chores?
• Do you want me to make purchases for you when I do my own shopping?
• I’d like to make dinner for you. Tell me what day works best for you and I’ll bring it over.
• What gives you hope?
• What inspires you?
• What gives you courage?
• What frightens you?
• What research are you hoping will be approved? Why?
• Is your housing accessible? If not are you looking to improve/move? How can I help?
• What daily/weekly exercise do you get?
• Can I be your exercise buddy?
• Can I help you find an exercise class that suits your needs? Would you like me to go with you?
• Would joining a chat room or support group be helpful for you?
• Would you like me to watch your children so you can have some “alone” time?
• Would you like me to drive your kids to activities to give you time for yourself?
• What hobbies do you enjoy? Do you want to learn a new one? Do you want to learn together?
• What movies do you like?
• What books are you reading?
• Don’t worry about canceling our social engagement. We can reschedule or let’s see how I can better accommodate you to suit your needs. No problem at all.
• Would you like to go with me for a manicure/pedicure/massage/haircut?
• And, the most important statement you can say to someone living with MS is (drumroll, please): I BELIEVE YOU.

Not an exhaustive list

This list is by no means exhaustive. Some people in the MS community may not agree with one or more on this list. But there are many other ways to be supportive of someone living with MS. You need to use your imagination by walking in someone else’s shoes to think what you’d like to hear if the tables were turned.

Be aware there may be times when someone is feeling depressed, anxious, overwhelmed or having a rough patch. They may push back on accepting offers of help. Don’t take this personally. It’s no reflection on you but on the unpredictable disease they live with.

Be gentle and compassionate and try again when you think it’s best. Nurture your relationship the way you nurture any relationship you treasure. With tender, loving care.

Make a difference in someone's life.