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Parenting is a rewarding but demanding job. It takes energy, patience, and resilience. For people living with multiple sclerosis (MS), the challenges can be even greater. The unpredictability of symptoms like fatigue, mobility issues, and cognitive difficulties can make daily tasks a lot harder. For people with non-relapsing secondary progressive multiple sclerosis (nrSPMS), symptoms get gradually worse over time. If you or a loved one is living with this condition, you may be wondering about how to keep your energy up and stay involved in your child's life. Despite all the hurdles, many parents with MS find ways to adapt and parent with confidence. Here, PatientsLikeMe will look at the challenges parents with MS face. We will outline strategies for managing day-to-day responsibilities and how to talk to children about the condition.
How MS Symptoms Can Affect Parenting
MS symptoms can impact every part of daily life. That means parenting responsibilities too! Some of the most common challenges parents with MS face are:
Fatigue
Fatigue is one of the most common symptoms of MS. For parents, this can make it hard to keep up with active children, maintain household routines, or be a part of school and extracurricular activities. Parents often find that it helps to save energy by planning rest periods throughout the day. Then, when children get back from school or an activity, they can stay engaged. Some have found that using grocery delivery services or meal-prep in advance can lower the daily energy drain. Planning outings and activities during the times of day when you have the most energy also helps. The most important thing is to make sure you give yourself permission to rest without guilt.
Mobility and Physical Limitations
Muscle weakness, balance issues, and trouble walking can make it hard to pick up young children, chase after toddlers, or even stand for long periods while making meals. Some parents worry about their child misunderstanding their limitations. Using adaptive strategies, like sitting while doing household tasks or involving children in different ways can help with the parent-child connection. If going to your child’s soccer game is too exhausting, bring a chair and cheer from the sidelines. Find low-energy ways to bond, like reading together or watching a favorite show.
Cognitive Challenges and Memory Issues
MS can cause cognitive symptoms like difficulty focusing, remembering appointments, or keeping track of daily schedules. This can make it hard to manage school schedules, doctor’s appointments, and after-school activities. Writing down routines, using phone reminders, and keeping a family calendar can help with organization. Having a consistent schedule helps children feel secure and gives parents a sense of control. Try to keep bedtime, meals, and school routines as consistent as possible.
Emotional and Mental Health Struggles
MS can lead to anxiety and depression, which can affect parenting. Parents may feel guilty about not being as active as they’d like or worry about how their condition impacts their child. Getting support through therapy, support groups, or open conversations with family members can help! These are good ways for parents to manage emotions while keeping a strong bond with their children.
How to Talk to Children About MS
One of the hardest parts of parenting with MS is figuring out how and when to talk to your children about your condition. Parents often worry about scaring their children or making them feel responsible for helping too much. However, experts agree that open and honest conversations help children feel secure. So how should you approach this?
Be Honest, but Keep It Age-Appropriate
For younger children, simple explanations work best. Instead of overwhelming them with medical details, let them know about the condition but be sure to reassure them that you love them and your role as their parent has not changed. Older children might have more questions, and it can be helpful to give them a little more information. Explaining what MS is as a disease and how it can affect you can give them an important perspective. Be sure to let them know you are comfortable answering questions they might have.
Address Their Concerns
Children may worry about whether MS is contagious, if their parents will get worse, or how it will affect their daily life. Encourage them to ask questions and reassure them that you are still there for them. If you do not know the answer to something, it is okay to tell them that! It can be something the two of you learn together.
Normalize It in Daily Life
Rather than treating MS like a secret, help your children see it as just one part of your family’s life. Teaching children to help around the house can make daily life easier and instill a sense of responsibility. Older children can help with meal prep or tidying up. Kids can help with simple tasks like setting the table or organizing their stuff for school.
Focusing on the Positives
Parenting with MS has its difficulties, but it can also bring unique strengths. Children raised by parents with MS can develop a deep sense of empathy, independence, and resilience. Despite the struggles, many parents with MS find deep joy in their parenting journey. By adapting to challenges, asking for support when needed, and prioritizing open communication, parents with MS can create a loving and nurturing environment for their children.
Parenting with nrSPMS comes with unique challenges, but you can raise happy, confident children while managing the condition. The most important thing? Remember that no parent is perfect. Showing love, being present in whatever way you can, and making adjustments along the way are what truly matter.
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