Elizabeth Yannel, 56, had been doing an annual one-day summer biking trip with her family on Martha’s Vineyard for years. But three years ago, she realized that her multiple sclerosis (MS) had advanced to the point where it wasn’t safe for her to do that anymore.
“The year before, I had fallen off my bike three times, which scared my husband and kids,” Yannel, a naturopath in Denver, Colorado, recalls. “It saddened me, but I realized it was safer for everyone if I told them to go ahead and ride their bikes around the island while I rode the bus. I was matter-of-fact about it. I didn’t want my kids to feel sorry for me or to stop them from doing what they wanted to do.”
Life with MS is full of challenges. Parenting is one of them. “As a mom, I always felt that my role was to appear strong and in charge, and keep my kids safe,” explains Yannel, whose kids are now 22 and 20. “But when you have MS, that sort of thinking often gets turned upside down.”
It’s easy to question whether you’re a good mom when you have MS. But it’s important not to, both for you and your kids’ mental health. These moms with MS share their expert advice.
Common Issues Moms With MS Face
Mom guilt is often part and parcel of mothering. As a parent, you’re expected to assume many roles — cook, chauffeur, activity planner, and homework helper — and do them effortlessly. “When you combine this pressure with the physical, emotional, and cognitive challenges moms with MS face, it can seem overwhelming,” says Evelyn Hunter, PhD, a psychotherapist who works frequently with patients with multiple sclerosis in Auburn, Alabama.
Most moms with MS struggle with persistent fatigue that goes beyond typical tiredness. “You feel like your arms and legs have been sawed in half and filled with cement,” says MS advocate Brenda Snow, 60, who raised her daughter as a single parent. “It makes it very hard to take care of yourself, let alone a child.”
Other symptoms that moms with MS often face that make parenting more difficult include:
- Cognitive impairment, aka “brain fog”
- Chronic nerve pain
- Anxiety and depression
Why MS Mom Guilt Is Real
As a mom with MS, it may seem like your entire social media feed is filled with images of perfect moms whipping up perfect nutritious meals in their perfect kitchen for their perfect kids before they go out for their perfect family day trip.
Mom guilt is built on an idea of who the perfect mom is. “For most women, that isn’t a reality, whether or not they have multiple sclerosis,” points out Hunter. “Women tend to base their self-worth around how well they take care of others around them. But that’s not healthy for any woman, let alone one with a chronic illness like MS.”
The first step to tackle mom guilt is to accept it, advises Snow. When you see a picture of your neighbor sledding with her perfectly attired kids (and their perfectly groomed dog), admit that you are envious of her strength to get everyone outdoors in subzero weather. “If you don’t recognize and validate your feelings, they can paralyze you in ways that are more damaging than multiple sclerosis itself,” points out Snow.
Turn Your MS Into a Source of Strength
You may not be able to coach your son’s soccer game or run your daughter’s Girl Scout troupe, but realize there are other ways you can teach your kids important life skills.
When her daughter started first grade, Snow worried how she would manage meet-the-teacher day in a wheelchair. Then she figured out a solution that would also empower her child. “I said to my daughter, ‘Let’s practice some girl power so I can come with you,’ and I had her push me in my wheelchair to her classroom,” Snow recalls. “She was so happy that I was there and so proud of herself for being part of the solution.”
Snow also decided to teach her daughter from an early age how to bathe, dress, and even cook for herself — under mom’s watch, of course. “We still spent time together, since I talked her through each step,” Snow recalls. “It gave her confidence that she still has to this day. It also made me feel less guilty, since I was teaching her valuable skills.”
Moms with MS also teach their children resilience, adds Hunter. “They see how hard their mother perseveres, even when things are tough,” she explains. Research has also found that kids of people with disabilities are often more empathic.
Take Care of Yourself
All moms need to sometimes put their own oxygen mask on first before they take care of their kids. But it’s an adage that’s especially important for moms with MS. “Self-care is key because it allows you to check in with your own body to see where your energy levels are,” Hunter explains. “Most moms are still able to push through, even when they’re tired, but women with MS don’t have that luxury.”
One good way to take care of yourself is to practice energy pacing. This means that you check in with yourself every morning to gauge your energy and adjust activities accordingly. That may mean that you throw something in your crockpot for dinner, rather than chop up veggies for an big meal. Or skip a shower one day so you have the energy to go to your child’s sports game. “Your kid won’t care; they’re just happy to spend time with you,” points out Hunter.
When Nora McMillan, 56, was diagnosed with multiple sclerosis more than two decades ago, she was juggling four children aged 6, 4, 2, and 2 months. “Up until then, I had always been the room mom who coached soccer and gave school tours,” McMillan, who lives in Larchmont, New York, recalls. “I didn’t want to scale back, but I knew I had to if I wanted the energy to parent my kids.” Every year, she picked just one activity to do, to make sure she could see it through.
Besides energy pacing, other simple ways to take care of yourself include:
- Eat a healthy diet.
- Do gentle exercise, like yoga, tai chi, and water aerobics.
- Get enough sleep. Let your doctor know if you have trouble. Many women with MS have undiagnosed sleep issues, like sleep apnea.
- Join a support group. You may be able to connect with other moms, too.
Talk therapy can help, too. “A therapist can walk you through some strategies to help get rid of guilt, and help you reframe what mothering looks like when you have MS,’’ suggests Hunter.
It’s also OK to ask for help, whether it’s from your partner, your family, or others in your community. “You don’t get what you don’t ask for,” points out Snow. “This is one time when you shouldn’t feel guilty if you lean in and request help.”
If you don’t have loved ones nearby, you may find help from neighbors, your local church or synagogue, or even from other moms. “The one thing I learned from my decades as a single parent with multiple sclerosis is that the human spirit is amazing,” stresses Snow. “Most people are happy to help when you need it.”
How to Talk to Your Family
When you have MS, it’s important to be able to talk about it openly with your partner and children. This will also help you better manage mom guilt. Here are some things to keep in mind:
Treat it like a fact of life. “When I spoke to my kids about my MS when they were younger, it was with the reassurance that everyone deals with something,” says Yannel. “Some moms have trouble seeing, or hearing, or get frequent headaches, or feel sad a lot. That way, they’ll see your MS as just another part of life.”
Explain when and why you need extra help. Your kids may wonder why you need to bring a walker or a cane when you go out to dinner or a school event. “It helps to explain how these items help you — for example, a cane keeps you more mobile, while a sun hat helps you stay cool so you can stay outside at their sports game,” explains Yannel.
Reassure them that you’re OK. While MS is a lifelong condition, it’s generally not fatal. Many new treatments make it more manageable. “Whenever my kids seemed anxious about it, I would say to them, ‘It’s OK, I’m not going to die,’” says McMillan. “They were reassured by my straightforward approach.”
Let your kids be involved in your care. It may help them to give them a sense of control. “Whenever I’d experience foot drop, my youngest would massage my feet and whisper to them, ‘wake up, little toes,’” recalls McMillan. Today, that son is training to be a neurologist so that he can help patients like his mom.
