If you have multiple sclerosis (MS), you may worry about how the disease will affect your ability to co-parent a child. But it’s doable.
“I always like to tell my patients, especially after a diagnosis, that if there was a time to get diagnosed with MS, now's the time because our medications work so well” and can slow down the disease, says Jakai Nolan McEwen, DO, MPH, a neurologist and MS specialist at Joi Life Wellness Group in Smyrna, Georgia.
And if you’re looking to start a family, some of the medications are safe during pregnancy and breastfeeding, McEwen adds.
People are typically diagnosed with MS between 20 and 40 years of age, and women are more likely than men to have MS. Symptoms such as fatigue, cognitive impairment, and mobility problems can interfere with parenting.
Co-parenting with MS can be a challenge. When deciding which parent will handle which parenting tasks, a division that’s fair might not be equal. In this case, the parent with MS may deal with feelings of guilt, the parent without MS may feel resentful, and both parents may feel overwhelmed.
When conflict arises between co-parents, good communication is important. This might mean sharing difficult feelings with your co-parent and listening to theirs, to help you work through conflict together.
MS symptoms and co-parenting
“Our patients who are diagnosed with MS are typically in the prime of their life. ... They're starting families, they're becoming partnered. And so the way that they thought that their life was going to go suddenly shifts,” says Amy Sullivan, PsyD, a health psychologist at Cleveland Clinic’s Mellen Center for Multiple Sclerosis.
But MS patients tend to be resilient, Sullivan says. It’s like someone who’s sailing and hits rough waters, she says. They can adapt and adjust, Sullivan says, “and when they have those rough patches of water, they steer their ship in a different direction."
Because MS can cause a range of physical and mental symptoms, each person’s situation is unique. But generally, the symptoms that tend to get in the way of parenting the most are the invisible ones, including fatigue, mood disorder, cognitive distress, and pain, and these can be debilitating, Sullivan says.
“MS can sometimes create strain in a relationship because it’s unpredictable and, at times, invisible. Symptoms like fatigue, pain, or brain fog aren’t always obvious to the person you co-parent with, especially if you're not in the same home. This can lead to misunderstandings and, over time, that stress can turn into frustration or even resentment on both sides,” McEwen says.
Know When to Ask for Help
One of the biggest challenges for co-parents with MS is knowing when to say you need help, says McEwen, who is also a parent who lives with MS.
“Dealing with MS can be a lot, but then adding in trying to raise a child and manage a home, it can be overwhelming at times, for sure,” McEwen says. “I think it's important to just take a step back and actually acknowledge that, to feel the feels, and to discuss it with whoever your network is, to hopefully help overcome it or come up with plans to make things a little bit easier on you.”
This starts with voicing your feelings. Partners often expect to be able to read each other’s minds because they know each other so well, but that just isn’t the case, Sullivan says. “We have to be able to verbalize what we're thinking, what we're feeling, and then, with that, be able to ask for help. And that is not easy.”
You might not want to be a burden on anyone, and you might be worried that asking for help is a sign of weakness. “But to me, it's a sign of strength when you're able to verbalize what you need, share the emotions associated with that,” and then ask for help, Sullivan says.
Open Up the Lines of Communication
When one person in a family has MS, it affects the whole family. If your MS means that you can’t do something with your child that you thought you could, you may feel guilt and grief, Sullivan says.
It’s important to voice your own frustrations and fears — as well as acknowledge how your family members are feeling. The partner of someone with MS often neglects their own needs and feelings to prioritize those of their partner and children.
Learning to listen to your loved ones is important. “When you're listening to your child and letting them speak about how they're feeling, that becomes a very powerful place to connect,” Sullivan says. If communication is difficult, therapy can help.
When conflict arises between co-parents, it’s important to be specific about what you need, McEwen says. “For example, if you have MS, say, ‘Could you handle soccer pickup and bedtime tonight so I can rest?’ instead of ‘I need more help.’ Or try using ‘we’ language to keep things collaborative.”
Some frustration may stem from family members’ lack of understanding of MS. If your co-parent doesn’t fully understand the invisible symptoms of MS, consider asking them to come with you to a neurologist visit or to attend an MS group discussion. That can help them understand, “and then maybe they will be more apt to ask you first, without you needing to ask for assistance,” McEwen says.
Sometimes you might not want to talk about your MS. “We don't want people always asking, are you OK? Or how are you feeling today? I don't even want to think about it myself,” McEwen says. “But I do still want to make sure that I keep my husband and my parents and friends as involved as possible with my care. ... Sometimes they may see symptoms that I might not be able to acknowledge myself in the moment.”
Talking to your child about MS
A child’s ability to cope with a parent’s MS depends in part on how much they know about MS. But you may struggle to talk to them about it.
What exactly you tell your child about your MS depends on several things, including their age and maturity level. However, Sullivan says, “I think that when we keep secrets from our children, it just doesn't ever end well. Our children are very bright and savvy. They're going to figure out if there's something going on with Mom or Dad that is going to probably impact their life.”
Sullivan recalls one patient whose child found out about her MS when she found the medication in the refrigerator. “It did not go well for the family, and so the mom had to come up with ways to apologize,” she says.
One review of multiple studies found that a parent’s MS can have a negative impact on children’s psychosocial adjustment. Eight studies showed negative effects on children, but three studies found positive effects, including higher personal competence.
This study also found that children who aren’t aware of their parent’s MS may experience anxiety and distress because they know there’s tension in the family but don’t know why.
Consider taking your child to your neurologist appointment. “We can help to explain what MS is in more of an age-appropriate way, and that can help them to understand what exactly Mom or Dad is going through, why they may need to rest more than their best friend’s parents,” and that can be reassuring, McEwen says.
Depression and Anxiety
Depression and anxiety are three times more common in people with MS than in the rest of the population. Clinically significant depression may affect up to half of people with MS at some point. But it’s treatable.
When people with MS get treatment for their depression or anxiety, they “are more present, they have more joy in their lives, they take more initiative,” Sullivan says.
“It's critical to treat the mood disorders of people with MS,” Sullivan says. She often says to patients: “MS takes so much from people. Don't let it steal your joy.”
While it’s normal to feel sad, nervous, stressed, or agitated sometimes, it’s time to seek treatment if these feelings are affecting your daily life, Sullivan says. “If you're no longer able to get out of bed, if you're no longer able to do your job, if you're no longer able to participate in things that you once enjoyed, or if you're starting to feel sad or anxious more often than not, these are things that would that should set an alarm off in your head,” she says.
Take Care of Your Mental Health
Aside from treatment for depression or anxiety, mental health care providers can help you identify strategies to cope with your MS. “Each person is struggling with something a little bit different,” so one strategy does not fit all, Sullivan says.
One example is gratitude journaling. “It helps change their perspective, and so we teach them to find something in their daily life that they're grateful for, and then they start to see that they're looking more toward the gratitude and the joy and the positive things instead of the negative things,” Sullivan says.
Mindfulness can help you deal with difficult feelings. “Mindfulness is being able to stay in the present moment and not focusing on the future, which can cause anxiety, or focusing on the past, which can cause regret and remorse. Instead, you'll learn to be in the present, which is a gift,” Sullivan says.
Although MS presents an array of challenges, sometimes there’s a silver lining. Sullivan says some of her patients have shared that living with MS has changed their perspective, so that they have more joy in their lives or are more mindful and able to see the beauty around them.
Tips for Day-to-Day Co-Parenting
While MS symptoms can be unpredictable, being able to plan for possible disruptions can make co-parenting easier.
“A lot of times, once you're diagnosed with MS, you become so much more aware of your body, and you can kind of tell when I've overdone it today, tomorrow may be a bad day for me,” McEwen says. Having a co-parent or someone else plan to handle bedtime or school pickup in that case can “make things feel more like you have a team and it's not like everything is an emergency all the time.”
Find your network of support
Some people may have a partner, co-parent, family members, or close friends who can help out, but you may not have any of these. As the saying goes, it takes a village to raise a child, McEwen says, but not everyone has an extensive village.
“You can find your village in different ways,” she says. If you’re involved in school activities, you may get to know other parents, or if your neighbors have kids going to the same school or activities, you may be able to share drop-off and pickup duties.
You can connect with others who have MS through online and local support groups, and the National Multiple Sclerosis Society has a peer-to-peer connection program called MSFriends.
A fair division of parenting duties
Parenting duties vary widely, depending on the age of your child and many other factors. When co-parents divvy up duties, you might consider how physically demanding the task is and how long the task will take.
For example, McEwen says, “On days when symptoms flare, the parent with MS may engage the kids in quieter activities like reading or homework, while the other parent manages more physically demanding outings like playground trips or sports practices.”
However, everyone is different. If you’re a parent with MS, you might not always want to give up the more physically demanding parenting responsibilities. Maybe the question of whether you or your co-parent goes to your child’s game is a game-time decision: Check in with your co-parent at a certain time beforehand.
Maybe you and your co-parent trade off bathtime and storytime duties based on how you’re feeling. If your MS symptoms make it difficult for you to give your child a bath, but reading a book with them is easier, maybe you'll take point on reading tonight and bathtime another night.
“Another factor to look at is an individual’s energy levels. If mornings are rough because of fatigue, a parent with MS might do more in the evenings when they’re feeling stronger,” McEwen says. “I have personally found that the key is to create a routine that matches both parents’ strengths, schedules, and energy patterns, while staying flexible when things change.”
Then, if you or your co-parent feels overwhelmed or like things aren’t fair, that’s where communication is important, McEwen says.
Time management
A coping strategy McEwen uses is sharing a calendar with her husband and a cousin who helps out with her household. That way, everyone is aware of what’s going on and knows where to step in if she needs help.
Other strategies to optimize your time, like meal prepping and having your kids help with household tasks, may also reduce your stress.
Be present with your kids
When MS symptoms limit the ways you can physically show up for your kids, there are ways to stay involved and included.
“A lot of times as parents we'll feel we're letting our kids down if we're not able to attend every game or a school event. But I often remind my patients that just showing up consistently, listening to them, and being present when you're at home” can create quality time, McEwen says. For example, “Even if you're in bed, encourage your child to crawl in bed with you.”
You might identify some activities that you can do with your child that don’t demand much physical activity, like puzzles or games.
Slow down
“We're a culture where we feel the need to do everything,” Sullivan says. “We're going 1,000 miles a minute, with our sympathetic nervous system constantly turned on,” but that leads to more stress. So it’s important to “learn to shut down the sympathetic nervous system, meaning rest, relax, rejuvenate,” she says.
Rest is a necessity, and so is being kind to yourself.
“Know that everything is not going to be right,” but any parent — with or without MS — is going to have struggles, McEwen says. “You have to give yourself grace.”
McEwen says that she doesn’t want anyone to think that getting diagnosed with MS changes “the likelihood of them being the most amazing parent ever.”
