10 tips for moms with MS

Last Updated: December 9, 2021

• Tips for Parenting With MS

  Multiple sclerosis (MS) is an autoimmune disease that causes damage to the protective sheath covering the nerve fibers in your central nervous system. This can disrupt your brain’s ability to communicate with your body, leading to symptoms that can significantly impact your quality of life. And it affects women more often than men. Parenting is already a hard job, but parenting with MS raises the stakes considerably higher. You don’t always know what to expect, so your family’s not sure what each day will bring, either. Here are a few tips for moms with MS to make balancing your family, home life, and health a little bit easier.

• 1. Expect the unexpected.

  Multiple sclerosis is known for being unpredictable. Symptoms can vary widely, from double vision, to slurred speech, to fatigue, to balance problems, to muscle spasticity, and more. And for people with relapsing-remitting MS, symptoms can come and go. You might have a period of remission, followed by a relapse, followed by another remission. Meanwhile, people with primary-progressive or secondary-progressive MS have a steadily progressing disease. It’s hard to tell how it’s going to go, so if you can, prepare yourself to be ready for whatever may come your way. Since parenting is also a series of unexpected events, you might already be primed to embrace this mindset.

• 2. Don’t hide your MS from your children.

  It may be tempting to shield your children from the details surrounding your multiple sclerosis. But experts say you should take the opposite approach. The National Multiple Sclerosis Society emphasizes that honest and open communication with your children is vitally important. You don’t have to share every single detail, but you can explain that you have a chronic health condition that sometimes makes it harder for you to carry out certain tasks–and you can do so in a way that’s age-appropriate for your kids. Be sure to reassure them that they can’t “catch” MS from you. The National Multiple Sclerosis Society, as well as many other organizations, provides guides for parents to coach them through these discussions with their children. Take advantage of these resources, which can help you navigate tricky conversations.

• 3. Ask for help from your family.

  Once your children understand that you have MS, you can tell them you might need their help from time to time. If they understand how certain symptoms can hamper your ability to do normal activities, like cooking dinner or raking leaves or other household tasks, they can pick up some of the slack–and in many cases, they’ll be excited to pitch in and be given some responsibility. If you want to be a little more systematic, you could take a page from the families who create chore charts, where each child’s responsibilities are clearly listed. You could set up a similar chart for your family that includes an extra column for “If Mom Needs Me…”
  
  

• 4. Encourage your children to talk to you.

  Research suggests that it can be challenging and stressful for kids to have a parent with MS, so encourage your children to ask questions and bring their concerns to you. And when they ask you questions, take the time to fully respond as best you can. Don’t be afraid to say, “I don’t know” when you don’t know. You might also consider seeking out some social support for your children to help them work through any of their concerns as well as potentially develop some coping strategies. Your doctor may be able to recommend a pediatric mental health professional or another expert in supporting families living with chronic illness.

• 5. Take your medication.

  Want to be in the best possible condition that you can be in? Taking your medication is one of the best ways to slow the progression of MS and avoid a flare-up. And if you stop taking it, it might trigger an MS exacerbation. Develop habits that enable you to faithfully take your medication as prescribed. One suggestion: put a daily reminder in your smartphone calendar to alert you to take your oral medication at the appropriate time. If you receive injections or infusions for your MS, put those on your calendar, too, so you’ll always make time for treatments.

• 6. Watch out for your MS triggers.

  Sometimes other factors can trigger an MS exacerbation. For some people, it’s coming down with an infection or getting sick. For others, it’s stress. If you can identify your triggers, you can take steps to prevent them from laying you low when you most need your energy and ability to function.

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• 7. Stop smoking.

  Quitting smoking has many benefits. First, research shows that smoking is associated with faster disease progression and more disability with MS. Second, if you smoke in your home or car, you are potentially exposing your children to secondhand smoke, which contains dozens of toxic chemicals, some of which are known to cause cancer. Plus, we know smoking can have myriad other harmful effects on the body and overall health. If you quit, you’ll be doing yourself and your kids a huge favor. And you don’t have to go it alone; talk to your doctor for resources to help you quit.

• 8. Rest.

  Fatigue is unfortunately a fact of life for many moms, even if they don’t live with multiple sclerosis. But of course, MS brings it to a whole new level. Experts estimate that 75 to 95% of adults with multiple sclerosis struggle with fatigue. Exercise and cutting back on tasks can help alleviate some of the fatigue, and sometimes, certain medications can help. But you’re also going to have to take time to rest. Parenting is a full-time job, but prioritize your wellbeing and delegate as much as you can so you’re able to take time for yourself. And if you develop any conditions like restless legs syndrome that interfere with your ability to get the sleep you need at night, let your doctor know right away.

• 9. Be mindful of signs of depression.

  The onset of depression is all too common for people with MS. In fact, as many as half of people with multiple sclerosis develop symptoms of depression that are significant enough to warrant medical intervention at some point in their lives. But it is often underreported and undertreated. If you notice symptoms like feelings of hopelessness or sadness, a lack of interest in things that normally give you pleasure, reduced appetite, difficulty concentrating, or feelings of worthlessness or guilt, don’t brush them off, especially if they last weeks or months. Let your doctor know, because treatment–including medications and talk therapy–is available to improve how you feel and function.

• 10. Get help from outside your family.

  You know the expression, “it takes a village”? That applies to you, too. You’re coping with fatigue that can make each day seem like a marathon. You may also be dealing with flare-ups that interfere with your ability to function at work and at home. It’s a lot. Don’t hesitate to ask your friends, family, and neighbors to help you out. Someone might be happy to pick up a child at school or drive them to an extracurricular activity. If your budget allows it, you might even consider hiring some part-time help to assist with your children or the housework. People want to help, so don’t be afraid to ask.