Talking To Kids About A Chronic Illness Like MS Is Intimidating. Here’s How To Start.

Multiple sclerosis (MS) is an autoimmune disease that causes the body to attack its own central nervous system. And unlike other neurological conditions, like Alzheimer’s, that tend to affect people later in life, MS is most commonly diagnosed between the ages of 20 and 50. It affects women at three times the rate of men, and is more prevalent in women of childbearing age than any other age group, according to the National Multiple Sclerosis Society. So, the people being diagnosed with MS are often parents — specifically mothers — who will have to grapple with, among other things, how to explain their symptoms to their kids. Even with a diagnosis, and finally having a name for why you’ve been unwell, this can be a challenging conversation to have.

MS is complicated by nature. Because it causes the immune system to attack different areas of the central nervous system, including the brain, optic nerves, and spinal cord, at different times, there is a wide variety of potential symptoms. “Everybody’s journey looks different. If you have an attack in the optic nerve, you'll have vision issues. If you have an attack in the spinal cord, it could cause trouble with walking or bowel and bladder control issues,” says Dr. Marwa Kaisey, M.D., assistant professor of neurology and MS specialist at Cedars-Sinai.

The condition also progresses differently for everyone, though around 80% of people will initially be diagnosed with relapsing-remitting MS, Kaisey says. This means new symptoms arise or old ones worsen after an “attack” or relapse, and then improve or go away entirely for a period of time. Other people have progressive forms of MS that do not have periods of remission.

How to talk to your kids about MS.

Rebecca Davey, 42, is a mother of two in Saskatchewan, Canada who is diagnosed with MS. She advises other parents with the condition to talk to their kids openly, and often, about their health, and to do so without discussing all the possible outcomes of living with MS.

“MS has just become so conversational in our house. It has never been a big secret or a big issue. It’s just the way it is. It has become very normal for them and not scary,” says Davey. “My advice would just be to be open and honest with age-appropriate and need-to-know information, without trying to fortune-tell what might happen down the road.”

Because a person with MS may experience severe symptoms one day and none the next, it can be a confusing condition to explain, especially to kids.

“It’s hard to understand that one day you can do something and another day you can’t do that same thing — I think that's hard for anyone to wrap their mind around,” says Dr. Karen Sandbach, Ph.D., lifespan neuropsychologist at Baptist-Wolfson Children’s Outpatient Behavioral Health. “A key phrase with MS is ‘good days and bad days.’ Let your child know at an age-appropriate level that some days you're not able to do things that may normally be easy for you.”

So, what does “age–appropriate” mean when you’re talking about a complex autoimmune condition?

For preschoolers & early grade school kids:

Davey was diagnosed with MS when her older son was 5. She had just given birth to his little brother and she had her worst flare-up to date. Cold weather made it difficult for her to move her legs, and even her rib cage felt constricted. When explaining it to her 5-year-old, she kept things simple.

“I let him know that I wasn’t feeling well and that I had a certain condition that would make me feel a little yucky for a while, but that it would hopefully resolve and then I would be OK again for a while,” she says. “I didn’t get into too many future scenarios with him or what could happen. I just focused on present symptoms, and I didn't say MS just because I knew that would have zero context for him.”

When you’re explaining how MS affects you to young kids, try relating it to things you know they understand already. “Very young kids, they nap, and that ties into that piece about needing to rest,” says Sandbach. She suggests this script: “‘When you’re tired, it’s hard to do things. When you have a good rest, you feel better. I also need to rest, and then I feel better. When I’m resting, Daddy will help you with this.’ They’ll know to leave that parent to get hopefully uninterrupted rest.”

“My advice would just be to be open and honest with age-appropriate and need-to-know information, without trying to fortune-tell what might happen down the road.”

You can also encourage them to be helpers, which most young kids will love since they’re gaining independence around this age. Kids in first or second grade do lots of tasks for themselves during a school day, so it’s reasonable to ask them for simple favors, like grabbing your car keys off the counter, Sandbach says.

“A parent may need help with physical things, like reaching something on the floor, or going to get something quickly. The child could be taught to do certain physical activities for the parent that can overall make their time together or activities that they're doing go well,” she says.

For pre-teens & middle schoolers:

Ah, the age of algebra equations and history reports with complicated citation pages. Kids this age will be more perceptive of the cognitive impacts of MS, and this commonly shows up for parents when their kid is asking for help with their increasingly difficult homework.

“Getting help from other adults with homework may be needed. There can be some difficulty with cognitive speed and memory,” Sandbach says. Remind your child that sometimes you may not remember things quickly, and that you remind them of things often, so it’s OK when you’re not as quick as usual either. “Set that expectation that things won't happen fast and things won't be consistent and either way, that's OK.”

For high schoolers:

Teenagers are never short on hard questions, and introducing a condition like MS will probably have them asking a few more. “Older teenagers may wonder, what’s the progression? I would be honest with them,” Sandbach says. “There’s a lot of information on the internet about what that’s going to look like and that the parent may need more help in the future than they do now.”

Expect that your teen will Google MS and find information that makes them worried or fearful. Encourage them to bring any of their concerns right to you so they don’t fester.

“I almost guarantee that they’re going to do it. So, teach them to come to the parents with questions that they have based on things that they may read or hear about,” Sandbach says. “Then the parent knows, number one, what’s on their mind. And then, number two, can help them sort through the questions they have together.”

Davey’s son is already a Google pro at age 11, but so far his searches revolve around Minecraft and Pokemon, she says. The openness Sandbach suggests has paid off that way. “He hasn’t really been Googling much about my illness, and I think it’s just because I've been fairly open with him. There’s never been any secrecy around it, so I don’t think he has a feeling there is anything more to look into.”

Explain the symptoms you have, especially the invisible ones.

The two most common symptoms of MS are fatigue and depression — not easy to see, but devastating to an active parent. “These can absolutely affect the way that a mother is able to function in her day-to-day life and her ability to care for and interact with her kids,” says Kaisey. “Those are what we call silent symptoms in that they are not evident to the average person.” Prepping your kids with the knowledge that some days you will be more tired or down than others can help them be understanding when the time comes.

Because MS can attack the optic nerve, sudden loss of vision is also one of the more common symptoms, along with difficulty walking due to leg weakness or numbness. These are the things your child is most likely to notice physically, Kaisey says, and may warrant explaining upfront. Both Davey and Shelbi Nunery, 32, a mother of three who lives in Ohio, say the summer heat can make them feel unwell fast, and that helping your kids understand what triggers your symptoms is helpful.

“In the summer, the heat really bothers me so I don't like to go outside a lot. Sometimes I have to say we can’t go to the park today because there's no shade at that park, or Dad’s going to have to take you, so wait for him to get home because that kind of stuff can affect how I feel. They’re pretty chill about that because I have a supportive partner who picks up those things that I can’t do. Just being honest with them, casually talking about it and not making it some big elaborate thing, has really helped my kids just accept it,” Nunery says.

Tell them how you’re treating your MS and what that looks like.

Fortunately, there are numerous treatments available for MS today. “We have over two dozen very effective treatments to prevent the disease from causing new damage,” Kaisey says. These fall into three main categories: injections that a patient self-administers at home; pills that are taken anywhere from once a day to twice a day, or for a week at a time twice a year; and the most common treatments, which are IV infusions, that are done anywhere from once a month to once every six months.

Aside from knowing that there are effective treatments for the disease, understanding how this medicine will show up in day-to-day life can be helpful for children. If you’re on an injection regimen, your kid will probably notice the medication in the refrigerator, Kaisey says. Or, if your infusion treatment overlaps with when you’d usually take them to soccer, give them a heads up about why only your partner is driving them to practice this time.

“I wish I had known how to be gentle on myself with my expectations.”

“I go get infusions every month and my two older kids are very aware of the family schedule and where Mom’s going,” says Nunery. She was diagnosed with MS after her first flare-up and has not had another since starting treatment, so it was actually her infusion schedule that first prompted her oldest to ask questions. “We were straight shooters with him. ‘It's a brain disease. We know that sounds scary, but it affects people differently,’ and explained what can happen and how the medicine helps me stay healthy. And now my daughter, she’s always just like, ‘What color bandaid did you get?’”

Explaining how loved ones will be helping you with your treatment plan is also important. “Make it specific that Aunt Judy’s coming over to help. She's going to take you to school, things like that, so they really know what to expect as much as feasible,” says Sandbach. “It’s a balance between trying to be concrete and provide expectations while also [making it] understood that there’s unpredictability, and unpredictability needs flexibility.”

Remind them you’re still you.

MS can make it feel like you’re not able to be the parent you want to be some days. “How do I tell my kids, ‘I can't play with you right now?’” says Nunery. Try to focus on the things you can do with your children — like playing a favorite game indoors when it’s too hot at the park — and they’ll focus on them too.

“Reassure your kids that despite any changes they might see, you’re still their mom, you still love them very much, and you’ll still be there for them,” says Kaisey.

Be kind to yourself.

It has been important for Nunery to make sure her kids know it’s OK to be scared or have questions about MS, and that she doesn’t know exactly how MS will affect her life over time. “Reinforce that you’re a family and that you stick together and that supporting each other is really important. Being vulnerable with your kids, but showing them that it’s OK not to have the answers, can really provide them lessons in resilience and to keep moving forward. As they grow older and they start asking more questions, I want to be able to provide them with some optimism about things.”

Davey agrees. “I wish I had known how to be gentle on myself with my expectations. I have always been a very driven person that holds myself to a higher standard. I really try to do certain things, and if I don’t do them, I can sometimes feel like I’m letting myself down and letting my family down. It’s been really good for my overall mental health, and probably my physical health, to let go of that stress and just know that I’m doing my best. As long as everyone is fed and bathed, we’re doing good,” she says.

You’re not going to have one conversation with your kids about MS and be done with it, of course. Like Davey and Nunery, you’ll talk to your children about your health more often than you initially expect. But you may find it’s not nearly as overwhelming as it sounds at the beginning of this process.

Experts:

Dr. Marwa Kaisey, M.D., assistant professor of neurology and MS specialist at Cedars-Sinai

Dr. Karen Sandbach, Ph.D., lifespan neuropsychologist, chief of neuropsychology and associate clinical director of Baptist-Wolfson Children’s Outpatient Behavioral Health