Being a Mom with MS: Motherhood When Your Body Has Its Own Agenda

Being a mother is never easy.

No matter how much you want to be fully present for your kids, life’s daily grind constantly throws curveballs at us.

And that’s the case even when you’re in excellent health.

But what if you’re a mom with multiple sclerosis (MS), navigating a body that doesn’t always cooperate?

Multiple sclerosis is an autoimmune condition that affects your brain and spinal cord, also known as the central nervous system. This condition occurs when the immune system attacks the protective sheath that covers the myelin, or nerve fibers. As a result, communication between the brain and the rest of the body is interrupted, causing symptoms like numbness, weakness, difficulty walking, and vision changes.

According to a 2019 prevalence study funded by the National Multiple Sclerosis Society (NMSS), almost 1 million people in the United States are estimated to have received an MS diagnosis.

We’re here to assure you that, despite your diagnosis, you still have the opportunity to be the mom you always dreamed you would be. Sure, it may look different than how you imagined, but your motherhood experience deserves to be (and can be) no less meaningful.

Being a parent with multiple sclerosis

As with any chronic condition, there are “good days” and “bad days” when it comes to living with MS. A “good day” may mean you experience a “pins and needles” sensation in your body. A “bad day” could mean muscle spasms, pain, and severe exhaustion; so much so that getting out of bed is now a challenge.

Compound this with being a parent, and suddenly it’s impossible to juggle your roles as cook, housekeeper, calendar manager, after-school-activities chauffeur, and homework wrangler.

“The emotional reality of having MS as a mother can be explained as an overwhelming sense of devastation and uncertainty,” shares Brenda Snow, a patient advocate and author of Diagnosed: The Essential Guide to Navigating the Patient’s Journey, who received her multiple sclerosis diagnosis while a single mother to her five-year-old daughter. “As moms, we already question if we are doing a good job. Having MS only exacerbates those feelings of doubt and guilt.”

“It feels almost like you can't give your child as many opportunities as other parents can, because you can't run, jump, or walk as well,” says Nikki Reed, a single mom from Winston-Salem, North Carolina, who co-hosts the “3 Blondes, 1 Battle” podcast about living with multiple sclerosis.

But that increased doubt and guilt doesn’t mean pushing through the pain is the right answer. In fact, ignoring your MS symptoms is one of the worst things you can do as a parent. By accepting MS as your new reality, you can develop a lifestyle that not only acknowledges your pain and fatigue (listen to your body!) but also makes you no less of a parent (accepting help is okay!).

Moms with multiple sclerosis: You're not alone

While life with multiple sclerosis may feel lonely, rest assured that you are not alone. There’s strength and solidarity in community, and digital resources make it even easier for you to connect with like-minded moms than ever before.

“Community makes a huge difference,” says Reed. “Make sure you surround yourself with those who are managing their MS in a way that is positive and inspiring to you. You’ll learn that it's a pretty awesome community.”

Facebook groups are a great place to start, like Reed’s “3 Blondes, 1 Battle” podcast page. Other FB pages to check out are:

• Moms With Multiple Sclerosis
• Multiple Sclerosis Mamas
• Multiple Sclerosis Resources and Education

Snow and Reed also recommend checking out organizations like the National Multiple Sclerosis Society (NMSS), the Multiple Sclerosis Association of America, Can Do MS, and websites like MSHOPE.com.

How to be a mom with MS

According to the Cleveland Clinic, 80% to 85% of people diagnosed with multiple sclerosis have something called relapsing-remitting multiple sclerosis (RRMS), which is the most common form of MS.

Typically, it consists of symptom flare-ups followed by periods of partial or complete recovery (aka remission). And since flare-ups can be unpredictable, having a plan in place is critical not only for your well-being, but for your kids’ as well.

“If you’re a parent with MS, it’s important to come to terms with the fact that your life is going to look different,” advises Reed. “The sooner you do, the sooner you can create that new, beautiful life, and look at it not as what you're missing out on or what you used to have, but what you can have going forward.”

Here are some strategies for managing your relapsing MS, as well as the 24/7 job that is motherhood:

• Build a flexible support system: “Don’t be afraid to ask for help,” says Snow, advising that you “lean into” your mom friends and loved ones, and be open about your physical and mental needs. Car pooling, meal trains, and weekends with grandparents can make a huge difference.
• Set firm, clear boundaries: Trying to do everything yourself doesn’t make you a better mom. It’ll just cause you to burn out faster. So if you’re fighting severe fatigue or numbness in your body, you may have to say no to that neighborhood get-together. Or tell your kids that the trip to the park will have to wait until another day.
• Be proactive with care and the requested monitoring of MS by MRI or other measures; Parenting with MS takes strength.
• Prioritize rest and self-compassion: That means listening to your body, even if it’s the bustling holiday season, and you’ve got a to-do list a mile long. Put tasks off to the next day if you’re too worn out to finish them. Speak with your family about delegating responsibilities, and if it’s in your budget, consider hiring a cleaning service or someone to run errands. You can even delegate small chores around the house to your kids! Every little bit helps!

Coping with motherhood and MS

Putting yourself first sounds counterintuitive as a mother, but it could mean the difference between balance and burnout. You cannot parent at 100% if your batteries (physical and mental) are at 0%.

If you’re a mom with MS, it’s time to embrace the art of self-care.

Now, what does that look like? Well, that’s completely up to you. Some potential strategies include:

• Lighting a candle
• Taking a warm bath
• Sitting alone in a quiet room
• Going outside
• Exercise
• Engage in relaxation techniques (meditation, yoga)
• Saying “no” to an invitation
• Sleeping!

“It’s important for MS patients to really listen to their bodies,” reiterates Snow. “MS symptoms can get worse if you push yourself too hard, and as moms, we are always pushing ourselves! But give yourself the grace to say ‘enough,’ take a rest if you need to, and most importantly, learn how to use the word ‘no.’”

At the same time, you can involve your kids in your self-care, which may help them understand why Mommy sometimes needs to take a break: How about a family yoga or meditation sesh? Or a quiet reading hour?

You absolutely deserve your alone time, but integrating your self-care into the family routine will go a long way toward normalizing your MS.

“The best advice I have is to focus on what you can do, not what you can no longer do,” says Snow. She recounts the story of when she learned that, for safety reasons, she could no longer chaperone her daughter’s elementary school trips. “The harsh reality was that my MS kept me from being able to keep up with the kids.”

However, that devastating news didn’t stop Snow from being an integral part of not only her daughter’s life, but also the school community. Instead, she began visiting her daughter’s classroom regularly to read to the students. “It turned out to be one of the most fulfilling experiences I had as a mother,” says Snow, “because I wasn’t just reading to my daughter and the students, but I was teaching the whole class what it was like to live with a disability.”

Should I tell my kids I have MS?

Such a personal decision will likely depend on your children’s ages, but generally speaking, honesty is the best policy, as open communication can reduce anxiety and build resilience.

“Children are very intuitive and can sense when something isn’t right, especially if mom suddenly isn’t feeling well,” says Snow, who informed her daughter about her condition when she was four years old.

“Personally, I don't think you should hide any of this from your kids,” offers Reed, who first told her son about her condition when he was seven. “When we started talking about it, and if I was having a tough day, I’d say, ‘Mommy’s having a bad leg day. Can you interlace your arms with me as we cross the road?’ And he’d think it’s so cool to help Mom.”

Whatever approach you decide to take, remember that every family is different. Snow recommends connecting your child’s school counselor, pediatrician, or developmental psychologist “to discuss the best way to share the news.”

Can you be a good parent with MS?

Even though, as Snow says, “it’s impossible to ignore MS,” the answer is a resounding yes.

“I know it may feel impossible at times, but you are still a good mom, even if it’s a different version of the mom you were before the disease,” reassures Snow.

Remember, there is no such thing as a “perfect mom,” and “good moms” come in all forms.

“I think the key is to be very open with [your kids],” says Reed. This includes embracing the spoon theory with her son, “which represents the amount of physical and mental energy a person has that day. I want him to understand that if I’m having a bad day, I'll need a little extra help. Nerves are internal; this isn’t a condition that can be seen, so having a mutual understanding is important.”

When MS makes you miss a moment (and how to let go of the guilt)

Moms are no strangers to “mom guilt,” regardless of our health status. But tack on a chronic illness like MS, and you may feel you’re constantly letting your kids down.

“A lot of mom guilt comes from needless pressure we put on ourselves,” observes Snow. “As you get used to living in your new body, it’s important to be honest with yourself and recognize you simply can’t push your body the same way you did before getting sick.”

Reed tackles mom guilt by remembering that she’s raising her son with empathy and a willingness to help others: “I'm raising a child who's had to watch his mom go through so many different emotions. He's watched her fight and endure, he's watched her cry, he's watched her be happy, but he also knows that it's not up to her on how she might feel that day, and that’s just part of MS.”

Will my kids have MS if I have it?

Just because you received a multiple sclerosis diagnosis, this doesn’t mean your kids will develop the condition. While MS is not directly inherited, biological family members will have a genetic predisposition. This just means they’re at a slightly increased risk; emphasis on slightly. Children with parents who have MS, according to a 2023 NMSS article, only have a 5% chance of developing the condition.

Other possible risk factors for developing MS, per the Cleveland Clinic, include:

• Being between the ages of 20 and 40
• Being of Northern European descent
• Being female
• Smoking
• Exposure to toxins like secondhand smoke and pesticides
• Low levels of Vitamin D
• Virus exposure (specifically, Epstein-Barr or mononucleosis)\
• Childhood obesity

Although per the Cleveland Clinic, scientists still aren’t certain of the exact cause of MS, it’s important to keep in mind that this condition rarely affects children. And while there is no cure for MS, there are several treatment options available to help manage symptoms and slow the disease’s progression.

Caring for yourself is caring for them

These days, it’s become cliché to say things like “self-care isn’t selfish” or “you can’t pour from an empty cup,” but that doesn’t make these platitudes any less true.

And if you’re a mom with MS, then self-care is vital for not only your health, but your family’s well-being too. That means finding a treatment plan that fits your lifestyle, and managing your MS symptoms so you can be the best parent to your children.

If you’re still determining your next steps regarding treatment, schedule an appointment with your healthcare provider to discuss your options.

Parenting with MS takes strength, but you've already proven you have plenty

No one expects to be diagnosed with a chronic illness, but the lessons you learn from MS will have a lifelong impact, not only on you, but on your children.

“Know that it’s okay to set boundaries, even with your children,” says Snow. “Show them that Mom is taking care of herself, because there’s a beautiful lesson there. [It] teaches your children that Mom’s needs are important, and when they become adults and face hard circumstances, they will give themselves permission also to take care of their own needs. Because they saw how Mom did it.”

“I think being a mom with MS can kind of be a superpower,” says Reed, “because our mom instincts turn on when we have children. It's almost like our bodies override the MS symptoms, and we're just all about getting those activities done for our kids.

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