Kathy Reagan Young was used to always being "on." Her husband, a golf pro, was working or traveling essentially every day of the year, leaving her as the go-to parent for their two kids, ages 6 and 4—all while also holding down a part-time marketing job. The concept of taking some time off? Yeah, that simply wasn’t an option for Young much of the time.
But when she was diagnosed with multiple sclerosis (MS), a disease of the central nervous system, after developing some debilitating symptoms—like exhaustion, weakness, and seeing double—she knew she would have to press pause on her go-go-go lifestyle. How was she going to balance her already-very-full plate as a working mom now that MS was also in the picture?
All around the world, there are people like Young dealing with this question: How do you raise your children while managing this neurodegenerative disease? MS affects about 1 million adults in the United States, according to the National MS Society. And most of these folks are diagnosed between the ages of 20 and 50—the years when many people are starting families and raising children. So if you're an MS-er—newly diagnosed or not—and trying to navigate the parenting puzzle, know you’re not alone.
Here are the top four pieces of advice Young and other parents with MS have to share.
1. Rally Your Support System
"I always tell people, particularly those who are newly diagnosed, that if you don’t have a village, you need to make one—quickly. You're going to need them," says Young, who created the website FUMS (and podcast) for MS-ers.
So whether your support system is made up of your partner, friends, family, doctors, a therapist, or ideally some combination, having people you can rely on for help—or just to vent to when things get overwhelming—can make the difference between a good and a bad day with MS.
"I had some wonderful friends who offered, for instance, to pick my girls up from school and bring them home, or said, 'Hey, can I come over and play with my kids for a while,'" says Kathy. "And that was super helpful." Her mom also traveled from Minnesota to help her get through the rough beginning stages after diagnosis when she was couch-bound.
UK-based blogger Jenny Clarkson, 41, also lives with MS and has two kids, ages 11 and 9, and shares her experiences on her site, Tripping Through Treacle. Clarkson was diagnosed with MS at age 15, years before she had her kids. But even though she knew going into parenthood that MS would be along for the ride, there have still been some unexpected challenges.
"I started having signs that I had transitioned into secondary progressive MS when my children were young (4 and 2), so in some ways, that felt like being diagnosed all over again," she says. SPMS is often marked by new or worsening symptoms with fewer-to-no periods of remission, and Clarkson's support system was crucial to getting through that adjustment. "I'm thankful to my husband and family at that time for letting me moan at them and for them offering to help with the kids!"
When you're dealing with MS, it can be hard to let go of the pre-MS image you had of yourself. Or maybe you've always been someone who wants to be 100% independent and hates asking for help. The truth is, everyone needs help sometimes—especially when you're dealing with a chronic illness. Accepting that fact—and having no shame in it—just takes some practice.
"I have had to take more help and support from family members and friends than I had imagined I would," Young says. "This was difficult at first, but it is now completely invaluable: It means that the children don't miss out on going to places that are inaccessible to me and allows me the time to rest and recover so that I can be the best mom that I can be when I am with them."
2. Talk Honestly With Your Kids About MS
Talking with your kids about a new MS diagnosis or worsening symptoms can be a daunting task. How much should you reveal? Are there things you should hold back to avoid scaring them?
"My advice is always be as honest as you can be, and just answer the questions you have at that time, because that's what they’re worried about," Young says. "What was most important to me was that my kids could always trust me. I was not going to keep anything from them."
Does that mean you need to give your 5-year-old a lecture on brain lesions and disease stages? No. You can 100% give your kids the info they need while keeping it age-appropriate. For example, when talking to little kids, says Young, "I said, 'Mama’s not feeling good, and I have something called MS. There are spots on my brain making me super, super tired, and I have trouble seeing.' It was very age-appropriate but let them know we could talk." You want to be honest, but reassuring, she says. "Because I talked to my kids this way, they know they can trust me, and it was never scary for them."
Clarkson also recommends taking advantage of the plethora of free resources available online, including the National MS Society's MS activity book for kids, that can help your children understand and process what you’re going through. Whatever the metaphor you use, find some way to tie your explanations to terms your kids can understand. Here are some examples from the National MS society:
How to explain the body parts MS affects: "The brain is like a computer that tells the body what to do. The spinal cord is like a thick wire attached to the computer."
How to explain what a neurologist is: "Daddy's going to a doctor who knows a lot about the brain and spinal cord."
How to explain MS exacerbation: You could compare it to a baseball game: "Imagine it's your turn to bat and suddenly you don't have the energy to take a swing or even walk off the plate." Or try a classroom example: "Imagine sitting in school [and] suddenly the blackboard goes fuzzy and you can't read anything."
Young's seen firsthand how her daughters have benefited from her approach. "MS was never this big monster thing that we don't understand or that they were scared to ask about," she says. "Honesty helps them feel more secure and know that I'm going to tell them exactly what's going on with me, and we'll all deal with it as a family—and it's worked."
Clarkson also makes a point to use her MS management as a way to teach her kids healthy lifestyle behaviors. For example, she says, she eats healthfully, does yoga, and practices meditation—explaining to her kids that all these things are important ways for her to stay as healthy as possible with MS. "They also have learned about the importance of disability rights—quite often they will point out something saying, 'That's not very disabled-friendly!'"
3. Live Your Life—But Be Prepared and Organized
Being a parent and an MS-er, you might worry about your symptoms getting in the way of your ability to be active with your kids. But you don't have to let go of your expectations—just adapt them.
"Before I was a parent, I had this vision of the kind of mom that I wanted to be. I wanted to be active with them, to take them to the beach, to go bike riding and on long walks," Clarkson explains. "The reality is that I can't do these things easily, due to mobility difficulties and fatigue. Instead, I focus on what I can do, not what I can't: simple baking, sitting down and playing board games, watching movies, and crafting. I try very hard not to feel disappointed in myself if I can't manage everything that I want to achieve, which can be hard at times."
To stay positive, she reassures herself of what she knows to be true: "I know that I am just as good a parent as my able-bodied friends, I just have to take things slower, plan more, and factor in rest time that they don’t always have to."
Young agrees—she tries not to let MS change her plans. Instead, she proactively adjusts her plans to fit MS into the equation in a way that works for her family.
When the kids want to go to the pool, she goes, too. "But I'm going to get my cool neck wrap, my fan, and my ice water, and all of that sort of thing," Young says. Heat can exacerbate symptoms and make it harder to function, so being prepared is everything, she says. "And eventually it got to the point where my girls would ask, 'Mom, do you have your neck wrap?' [The extra planning] just became part of my new mothering plan."
Like any busy mom, keeping daily to-do lists have been crucial in the fight against cog fog, but she didn't stop there: "I've taught my kids to do the same thing, and that's been really helpful to them in school and life in general, too," Young says. They get some important life skills, and you don't have to shoulder all the responsibility. "It's good for everybody, but if you have a neurodegenerative disease that is affecting your brain function, you really need to be uber organized or you’re going to be missing some things."
4. Let Your Kids Help You, Too
For Young, learning to ask for help also meant teaching her kids at a young age how to pitch in around the house, things like doing a load of laundry, or making a simple dinner like macaroni and cheese. "These were all really good things for them to learn anyway, but we had a real goal and purpose for it: 'When mom has a bad day, I need you to help me by doing these things,'" she explains. By working hard on her good days to arm her kids with useful skills, they knew how to step up and help her on the bad ones.
And modeling that behavior to your little ones—showing them that it's OK to ask for help—can benefit them in more ways than you might think.
"It teaches the kids a lot, too: Somewhere down the line in life you're going to need some help. You have to learn how to ask for it and how to accept it," Young says. "And you need to learn how good it can feel to help someone, too."
Part of helping your kids understand your diagnosis might include getting them involved in the cause. Young and her husband, for example, used to hold a regular MS fundraiser, and she always encouraged her children to take part, whether that was through baking cookies and cupcakes frosted in orange—the color for MS awareness—or giving a speech at the event.
Want to get the whole family involved with raising awareness for MS? Check out the National MS Society's website for information about upcoming events in your area, like MS walks or bike rides. Nothing near your town and want to get creative? They also offer information about how to hold your own fundraising event.
This has been one of the biggest gifts MS has given Young's family, she says. "The gift to my children has been this incredible empathy I see in them that I don't see in other kids their age. They've had to step up."
Clarkson echoes these sentiments, saying parenting with MS has been difficult but extremely rewarding.
"Although the kids are aware that I have needs that are different from their friends' parents, they are happy to help (most of the time!) and tell me that they wouldn’t want me any other way," she says. "I like to think that by having a parent who has health needs, they will grow up to be kind, compassionate, and empathetic individuals. So, as bad as MS can feel at times, we can see the silver lining in our children."
And as your kids get older, they may want to get involved in other ways. For example, Young's daughters are now in their late teens and have gracefully stepped into more mature roles when it comes to their mom's MS.
"My oldest daughter took me to an infusion when she was 16. I had no intention of that, I can drive myself to get my steroid infusion when I'm having a relapse—but she absolutely insisted," Young recalls. "She said, 'I can drive, and you're not going alone.' And she sat there with me and she took it all in."