Families Affected by Multiple Sclerosis

Your multiple sclerosis diagnosis will have an impact on everyone who loves you, especially family members. They may experience the same wide range of emotions you do as they adapt to living with MS: fear, guilt, anger, denial, grief, anxiety.

They will also have many questions about MS. “What will happen to you over time?” “How do we plan for the future?” “How do we manage the unpredictability of the disease?” They may also be confused if their roles and responsibilities shift during this time.

As your family faces these changes, the National MS Society’s MS Navigators can provide help. For more support, see “Plaintalk: A Booklet about MS for Families” and the resources that follow.

The challenges of MS can draw partners, family and friends together. But caregiving can also be physically and emotionally exhausting, especially for the primary caregiver. That person is often a partner or spouse, but can also be a child, parent or friend. Whoever they are, it’s important that they pay attention to their own health and well-being and seek out support designed for carepartners.

While younger children sometimes assume significant responsibilities when a parent has a disability due to MS, they should never be called upon to provide a parent’s personal care. For tips finding help beyond the family, see the article “Finding a Caregiver” and the guide “Hiring Help at Home.” An MS Navigator can also assist with this search.

“Our love for each other remains, make no mistake of that. But some days, this disease is a beast and gets the best of us,” one woman affected by MS reported. “By continually facing obstacles together for so many years, we know we can handle almost anything,” said another. Regardless of how strong the marriage, MS may shift both people’s roles in the relationship, at least at times, and affect intimacy.

Whatever your experience of marriage and MS, you’re not alone. Find advice and insights in Momentum Magazine:

• How MS Changed My Marriage
• A Love Triangle: Him, Her and MS
• When MS Changes the Marital Equation
• When MS Is the Third Wheel

The first thing many parents want to know is how to talk to their children about MS. The answer varies depending on the age of the children. It will also change as they grow up and with your disease course. Your child will benefit from ongoing conversations on the subject.

Over time, MS may also change the way you parent. You may have to pace yourself. You may not always be able to do all the things you did with your children in the past. Our Parenting with MS page offers some helpful information. Momentum offers a variety of perspectives and advice:

• Mom Duty: Fatigue Edition
• The Parenting Puzzle
• Talking to My Children About MS

A parent’s MS diagnosis can have a significant impact on young people. Children have their own unique concerns, fears and questions regarding MS. These are all important to address. You might start by reading “Someone You Know Has MS: A Book for Families”/”Alguien que conoces tiene esclerosis múltiple: un libro para familias” with your child. The activity book “Keep S’myelin”/“Sigue sonriendo” may also help children between the ages of 5 to 12. It provides key information in a kid-friendly way.

”How Does MS Impact My Kids?" in Momentum Magazine discusses possible stressors — as well as some benefits — your children may experience as a result of having a parent with MS. Your children may enjoy a session at the MS Adventure Camp. It brings together children going into grades 4-12 who live in a household with someone affected by MS for summertime fun and personal growth.

If you have a child diagnosed with MS, see our page on pediatric MS.

If you are a teenager whose parent has MS, you probably have many complex questions about the disease and the ways your life has changed. “Plaintalk: A Booklet About MS for Families” provides some answers and includes teen perspectives on the disease.

Some people also benefit from reading first-hand accounts of growing up with MS:

• How My Mom Being Diagnosed With MS Made Me a Better Person
• 5 Things I Want You to Know if Your Parent Has MS

In addition to reading about life with MS, it may help to meet others in your situation through the MS Adventure Camp.

If you are a teen diagnosed with MS, see our page on pediatric MS.

• Find Support
• Sex and MS
• Newly Diagnosed
• Disclosing Your MS Diagnosis