Navigating multiple sclerosis (MS) with your family can be a challenge. The condition may be targeting your body, but its effects ripple out to the family, too. Dr. Rosalind Kalb, former vice president at the National Multiple Sclerosis Society, perfectly described MS as an uninvited guest: “This disease shows up in your household, moves in, spreads its junk all over, and doesn't leave. It means everyone has to develop a relationship with this intruder,” she told U.S. News and World Report.
Multiple sclerosis is a chronic autoimmune disease where the body’s immune system attacks tissues in the brain and spinal cord. MS can be treated, but there is no cure. Symptoms vary among people with MS, but motor and cognitive problems are among the most common.
Like you, your loved ones will worry about your health, your well-being, and an oft-changing, new normal for you all. Each family member will likely experience and handle their feelings around MS differently. It’s natural for each member of the family to experience a range of different emotions, including fear, anger, anxiety, resentment, confusion, and grief. MS can be as emotionally rough on the family as it is on the person living with MS.
See what MS specialist Dr. Aaron Boster says about working with your family to assess your condition's progression.
When MS affects you or someone you love, you’re in it together. You’re also stronger together. Here’s how to navigate the new waters.
There are no hard-and-fast rules on whom you should tell about your diagnosis or when. There are as many ways to go about doing it as there are people living with MS. Some people will want to tell their whole family about their condition right away. Others may prefer to wait a while or only tell their partner. Some people opt to not tell anyone at all.
You might want to start by telling family members with whom you feel closest or safest. Ask yourself what feels right. The “right way” is the way that works for you.
MS often influences family dynamics, redefining each family members’ traditional role. It also calls for new or different ways to spend time with your family to ensure you can conserve energy for all the important things on your plate. For example, MS can compromise your mobility, vision, and cognition, among other symptoms. Symptoms of MS and treatment side effects can also make it harder to hang out and do the things you used to do as a family.
“I don't know how to explain to my family how I feel left out when activities are planned without me and without the consideration of what I can and can't do,” said one MyMSTeam member.
When planning activities, be honest and realistic with yourself and your family about how you feel. For example, instead of an afternoon bike ride, you could suggest reading a book with the grandkids. If your energy levels are up for it after that, then you can make the call to take a stroll. “Under-plan activities, rather than over-plan. You can always scale up,” one member recommended.
Your family can be an invaluable source of support, caregiving, and love. Partners, spouses, and other family members can lend perspective, a shoulder to cry on, or a listening ear. Social and emotional support may be especially important for men with MS who may struggle more to indicate when they need help.
All healthy relationships require a balance of give and take. Sometimes you’ll lean on your loved ones. “I used to not ask for help for anything, but now I’ve learned I have to,” shared a member on MyMSTeam. “I have to be honest with how I’m doing.”
Sometimes, though, you’ll be the one teaching and supporting your family. Like you, your loved ones will have to learn about, process, and adjust to life with multiple sclerosis through the progression of the disease. “I did help my family deal with my diagnosis, and they helped me,” shared a MyMSTeam member about her family’s journey with MS. “We did it together as much as we could.”
Being a parent, guardian, or head of household is a tough job. It can be physically and mentally exhausting. MS can make taking care of your household, family, and yourself even more grueling. “How do you balance work and family with MS? Is there ever time for yourself?!” a member implored.
But parenting with MS is possible.
“Has anyone considered NOT starting a family due to MS?” asked a MyMSTeam member.
While the decision to have kids is complex, know that MS doesn’t seem to affect a woman's fertility or ability to conceive. Similarly, it doesn't affect a woman’s ability to carry a pregnancy to term, fetal development, or the risk of complications during delivery. And pregnancy doesn’t appear to have a bearing on a woman’s MS prognosis long-term.
“I was diagnosed with MS at age 19. I married and had two healthy, happy pregnancies and delivered both without any complications,” shared a MyMSTeam member.
Despite the challenges of living with MS, people who have the condition can be successful parents of happy, healthy children. Read these tips on overcoming day-to-day parenting challenges whilst living with MS.
It can be hard to know when and how to start talking to your kids about MS. Experts say the more you openly communicate with children, the less MS becomes an issue. “Keep the conversation open, all topics are on the table,” advised a MyMSTeam mother.
Keep talking with them about your condition and how it's affecting them, you, and your family. “Since I’ve been totally open with my son and his friends all of his life, they’ve gained an understanding. My disability is almost irrelevant to them,” explained a MyMSTeam member.
“My children grew up around MS. They just accept it as part of normal life,” said another.
For Kids: Keep S'myelin (a play on the word “myelin,” the protective covering of neurons that’s impacted in MS) is a great resource for explaining MS to children aged 5 years and older.
If you’re a support partner or family caregiver for someone with MS, MyMSTeam members largely advise you to just be there for your person. “Be supportive,” urged one member. “It is the best thing you can do.”
To show support, some members suggest going to their neurologist appointments to learn what is said and to help your loved one remember. Caregivers and loved ones can also help prepare questions in advance of health care appointments, members suggest.
Listening is also meaningful: “Listen well and learn what their symptoms are,” said one member.
“You don’t always need to try to fix it. Just be there and listen,” said another.
You likely have lots of questions and concerns about MS. Resist the urge to ask your loved one all of your questions at once. Try not to add to their mental or emotional load, especially in the beginning as they come to terms with and learn about their MS diagnosis. Reviewing overview materials may provide you a good starting point on the basics about MS. Increasing your understanding of your loved one’s MS can be a huge help, according to MyMSTeam members. “It is hard for those living with MS to get some people to understand, and it affects us deeply and emotionally,” said one member.
MS symptoms like mood swings and fatigue can affect behavior and personality. Try to be patient, even on your loved one’s bad days. “Compassion is an incredible attribute,” said a MyMSTeam member about their support partner.
“Those of us with MS know how totally unpredictable the disease is and, unfortunately, it often leads us to take our feelings of uncertainty out on others,” said another.
MyMSTeam Members have emphasized how meaningful it is to have their partners and families show that they are compassionate, supportive, and understanding. Remember to be kind, both to yourself and your loved one with MS.
Juggling work, life, home, and self can feel like a high-wire balancing act. Add the MS of a loved one and it’s even easier to neglect your own needs, get burned out, and forget to take care of you. Partners and family members of people with MS often experience normal grieving and other emotional changes, including depression. To be the strong support a person with MS will need, you need to attend to your physical and emotional health, as well. Respite is important for any caregiver.
Know that your feelings are valid and important. Consider seeking emotional support from a friend or family member, or speak to a therapist about how MS in the family is affecting you. You can also connect with others in your area through local support groups.
Navigating MS in the family comes with challenges, and it may help to hear from others who are also figuring things out or who have been there before. MyMSTeam is the social network for people living with MS and their loved ones. A community of more than 164,000 people comes together to ask questions, give advice, and share their experiences with MS.
How has MS impacted your family? How do you balance self-care and caregiving with MS? Drop your tips about navigating MS with your family in the comments below or start a conversation on MyMSTeam.