How to Answer Your Kid’s Questions About Their MS
Growing up is hard enough. But add multiple sclerosis to the mix, and challenges abound for both parents and their children.
Kids are known for asking tough questions: Is there a Santa Claus? Why do I have to go to school? Are we there yet? Older kids may challenge you even more, questioning what’s what simply because it comes from you, the parent, whom nature programs teens to push back against as they fight for independence.
When your child has multiple sclerosis (MS), those questions can get even tougher. The unpredictable nature of the disease—caused by an overactive immune system attacking the protective coating of nerves in the central nervous system (CNS)—means symptoms are often erratic, with periods of relapse and remission. That means signs of MS can appear for a while and then vanish, making it hard for you—or even their doctors—to provide the clear-cut answers kids crave. Then, there’s the totally normal fear that you’ll say the wrong thing or somehow limit their potential or even scare them in the process.
“I am very much a fan of giving kids information,” says Victoria Leavitt, Ph.D., an assistant professor of neuropsychology at Columbia University Irving Medical Center in New York City. “But you do have to think about what’s age-appropriate. How much information are children equipped to deal with?”
We'll share expert advice on what to say, age-by-age. Here’s how to answer difficult questions in a way your child can understand.
“Could I die?”
Let’s start with the hardest question, because it could be the first one that pops out when kids learn they’ve got a chronic disease. It’s tough to talk mortality with children, no doubt, but don’t dodge the topic. "The number one thing is honesty," says Rose Reif, a licensed professional counselor at Reif Counseling Services in Cary, NC.
With young children, stick with the facts, Reif says. Tell them “most people with MS don’t die until they’re much older.” Just like most other people, even those who don’t have MS.
Older kids may demand more specifics. “They need to be reassured that we live in an era when a lot of treatment options are available,” says Soe Mar, M.D., pediatric neurology specialist at Washington University in St. Louis. So tell them how “most kids do very well, so long as they’re taking medications and they’re monitored very closely.”
“Will I need a wheelchair?”
About two-thirds of people with MS don’t lose their ability to walk, according to the National MS Society. But it’s hard to predict who’ll stay mobile and who won’t.
“Usually the answer is going to be, ‘I don’t know,’ says Reif. She suggests putting a positive spin on the worst-case scenario: “If your body can’t walk certain distances, a wheelchair will allow you to do all the things you want to do.” Remind your child that the odds are with the nearly 70% who only need some mobility assistance—a cane, perhaps—and nothing more, and often only in the later stages of the disease.
She also suggests incentivizing older kids to work toward their own best health outcomes. The better they follow their treatment now, the stronger and healthier they’ll remain in the long run.
“Will I have a normal future?”
This is another question with an unclear answer. No one with (or without) MS has a crystal ball to predict the future. And the definition of normal is anything but consistent. “What is a ‘normal’ life? Everybody has something. We just don’t know yet what it is,” says Leavitt.
Your best approach is to focus on the positives.
“People with MS absolutely go to college, work jobs, and get married,” Reif says. She recommends parents search YouTube for videos of college students and adults with MS who’ve achieved big things, and watch them with your kids, of all ages, together. (Of course, pre-screen the videos first to make sure they’re appropriate for younger children. While you likely won’t find anything R-rated, you may see college-aged kids chugging a few beers, for example.)
“Do I have to take my medicine?”
Taking a pill every day or getting regular injections isn’t on most kids’ list of fun things to do. So, no surprise, up to 60% of kids with MS don’t take their medicine as prescribed, finds a 2019 study in Qualitative Health Research, mainly because they don’t like the side effects, or they can’t remember to do it.
To avoid a power struggle, don’t make medicine-taking about what you want. Instead, focus on what it will do for your child. “If you say to a 10-year-old, ‘This is a medication that helps your balance so you can ride your bicycle,’ that matters to them,” says Reif. And giving older kids some say in the delivery method—pills or injections—may make them more compliant.
Sometimes, the biggest tug-of-war over medicine is during the symptom-free periods when kids feel fine. “One important message is that medication isn’t just for when we’re not feeling well,” Leavitt says. “In fact medication are also for when we are feeling good, because it keeps us healthy.”
“Why can’t I keep up in school?”
Whether your child is younger or has already started high school, be sure to explain how MS can affect how well they do academically. That’s normal, Dr. Mar says. Mental challenges are common in people with the disease. According to a 2017 study in Behavioral Neurology, up to half of kids with this condition struggle with things like language, memory, and information processing, which can make school a frustrating experience. By preparing them from the get-go, they might feel less frustrated if and when cognitive challenges happen to them.
Watch out for such setbacks, too, because problems at school can “creep up,” Leavitt adds. Kids who seem to be doing fine in elementary school sometimes take a nosedive once they reach middle and high school. “It can all of a sudden put them into the danger zone of being that kid who hates school.”
This is when you should reassure your child, “I’ve got your back.” Visit a neuropsychiatrist for an evaluation, and get recommendations on how to address your child’s problem areas. Then, work with the school to put a 504 plan or Individualized Education Program (IEP) in place. That plan, for kids in any grade, might include extra time to finish tests or take more breaks during the day. “Make accommodations for your child’s worst day, even if they don’t need them,” Reif suggests.
“Can I still play sports?”
MS motor symptoms and fatigue can make it hard for kids to walk, keep their balance, and maintain the physical stamina to make it through a gym class or sports practice, according to the Cleveland Clinic. But that doesn’t mean they can’t or shouldn't stay active. Playing sports is important for so many reasons. It provides exercise and a chance for kids to improve their strength and motor skills. It also offers social interaction, and an opportunity to make new friends and feel a sense of camaraderie with them.
“We definitely want to encourage them to participate,” says Reif. She suggests steering kids toward activities where they’re an “individual contributor,” like martial arts or maybe tennis. Then they can sit down when they feel tired without affecting their whole team’s outcome.
Sports may be an especially big part of a teenager’s identity, especially if they’ve been playing for years. If your child can’t keep up with their previous sport, Reif suggests that you look for an adaptive version so they can stay part of a team.
If your child struggles with balance, motor skills, or overheating during sports or gym, your doctor can request special workarounds from the school, Dr. Mar says. For example, you might ask that your child play indoors on hot days. Another possible ask is for extra visits to the water fountain or to have a water bottle nearby during play. Dehydration is an issue for anyone—but is especially so for people with MS, because it amplifies symptoms like fatigue and poor concentration.
“Why is it so hard to make friends?”
"When this issue comes up, you can say, 'I get it. When you don’t feel well, the last thing you want to do is go out and play, or hang out with other kids,'" says Leavitt. “My patients say that they recede from friendships and relationships because it becomes too much to keep up.” But remind them that backing off from their friends can leave them lonely, she adds.
Get involved by setting up playdates for younger kids, but keep them small enough to avoid overwhelming your child. “Have just one or two friends come over and hang out at your house,” suggests Anne Wagner, R.N., clinical nurse coordinator in pediatric neurology at Washington University in St. Louis.
Get creative with get-togethers. “I work with one mom whose child will do popovers instead of sleepovers,” Reif says. “Whenever they feel good and they can participate they come over, but there’s no expectation that they’ll stay the night.”
If your child is nervous that other kids won’t understand their MS, encourage them to lean on the ones who do get it. "Say, ‘When somebody’s a true friend, they not only want to understand what you’re going through, but they want to support you through it,’” Leavitt suggests.
Urge your older child to fight back against social retreat. “Teenagers really need friends,” says Dr. Mar. Without them to lean on, feelings of isolation can creep in. People with MS are already more likely to be lonely than those without the disease, and loneliness has links to depression, according to a study in Rehabilitation Nursing Journal.
One way to help kids of all ages connect with peers who share their very same challenges is through a pediatric MS support group or summer camp.
“Why won’t you let me do anything?”
This is one question you need to turn around and ask yourself. It’s tempting to try to shield a child with chronic illness from all the world’s dangers. But just wait until they become a teenager and are completely over your coddling, however well-intentioned.
To avoid being too overprotective, think back on your own teen years. “There were things we did that weren’t smart or healthy. We learned from those things and moved on,” Reif says. “A good litmus test is to [ask yourself], if my child didn’t have MS, what would I be doing?” she adds. Give your child a chance to try new things and be independent. If they do make mistakes along the way, consider them learning experiences—and move on.
“Why did I have to get MS?”
The answer is, there is no easy answer. No one knows why the immune system attacks the brain and spinal cord in certain people. The randomness of the disease only adds to the sense of injustice. Having MS can seem ridiculously unfair, especially during the teen years. Addressing these feelings requires a lot of listening and understanding on your part.
“I often see parents who are afraid to acknowledge that sometimes it sucks. Parents feel like they have to stay positive, and if they don’t, things are going to unravel. That’s just not the case,” says Reif. “Allow your child to be honest with you about how hard this is, and don’t make them feel wrong for feeling that way.”
Instead, use the opportunity to highlight the upside (yes, there are is an upside) to living with MS. “MS is actually an opportunity for the people who live with it,” Leavitt says. “Turn it around and say, ‘You have a level of resilience that most people don’t have at this age.’” A resilience that’s exactly what’s required to propel any child—MS or not—into a successful future.
Thinking Problems in Kids with MS: Behavioral Neurology. (2017.) “Pediatric Multiple Sclerosis and Cognition: A Review of Clinical, Neuropsychologic, and Neuroradiologic Features.” ncbi.nlm.nih.gov/pmc/articles/PMC5757108/
Does MS Always Cause Paralysis?: National MS Society. (2018.) “Multiple Sclerosis: Just the Facts.” nationalmssociety.org/nationalmssociety/media/msnationalfiles/brochures/brochure-just-the-facts.pdf
How Could MS Affect My Child?: MS International Federation. (2013.) “Childhood MS: A Guide for Parents.” Nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Childhood-MS-A-Guide-for-Parents.pdf
Is There a Cure for MS?: Multiple Sclerosis Society of Canada and National MS Society. (2011.) “Kids Get MS Too: A Guide for Parents With a Child or Teen With MS.” mssociety.ca/en/pdf/kidsgetmstoo.pdf
MS Symptoms in Children: Cleveland Clinic. (n.d.) “Pediatric Multiple Sclerosis: Symptoms.” my.clevelandclinic.org/health/diseases/17337-pediatric-multiple-sclerosis/symptoms
Taking Medicine in Kids with MS: Qualitative Health Research: (2019.) “Adherence in Youth with Multiple Sclerosis: A Qualitative Assessment of Habit Formation, Barriers, and Facilitators.” ncbi.nlm.nih.gov/pubmed/29911511
What is MS: National Multiple Sclerosis Society. (n.d.) “Definition of MS.” nationalmssociety.org/What-is-MS/Definition-of-MS