Managing the Emotional Impact of MS

A chronic illness such as multiple sclerosis (MS) can affect children's emotions in various ways. In general, kids who have changes in cognitive function, such as learning and remembering, may suffer a greater emotional impact, perhaps due to feeling left behind or "less than" other children because of difficulties in school.

Parents can help prevent problems from developing by being aware of the potential emotional impact on kids, and helping them find ways to cope. In fact, a study of youngsters with MS found that many had healthy adjustment to the disease and good self-esteem, likely because they also had a strong system of social support.

Coping Skills and Strategies

Learning ways to overcome troublesome symptoms can be empowering for everyone: Children benefit because they can do something about a condition over which they often feel they have no control, while parents feel they're helping their child. Coping strategies include:

  • Be open — Talking about an MS attack or flare-up can be difficult for parents. Keep in mind, however, that discussing these issues makes them less scary for your child. Have open conversations about medical treatments, how to reduce or cope with symptoms, and how the disease and its treatment may affect your child in the future.
  • Create "what if" plans — For school age and younger children, it's helpful to talk about different scenarios that may occur when you're not around, and what your child could do about it. You might ask: "Let's say you're in the cafeteria during lunch, and all of a sudden you notice that your vision's blurred just like it was a few months ago. What would you do?" By playing out the scenarios of how kids might cope with symptoms on their own, you can make them feel less anxious.
  • Give kids a sense of control — For adolescents and older school age children, the lifestyle that comes with a chronic illness conflicts with their natural desire to be independent. You can help them feel more in control by involving them in health-related discussions, teaching them self care skills related to their illness and encouraging them to monitor their own treatment as much as possible. You should also encourage older kids and teens to come up with their own coping strategies for dealing with symptoms; often this increases the chances they'll use them.

Peers and Social Skills

A chronic illness such as MS can sometimes interfere with socializing with peers, a key part of development. The child may feel too tired to spend time with friends, or MS may intensify their worries about being accepted by others.

Here are some ways to help your child feel more secure around peers and at school:

  • Encourage your child to spend time with friends.
  • Discuss concerns about disclosure — what to share and what not to share with friends about your child's condition.
  • Help your child come up with ways to respond if teased by peers (humor often works well).
  • Encourage your child's friends to be supportive.
  • Encourage your child to share concerns related to his or her body and how MS or MS treatments may affect it. Body image issues are especially common among adolescents.
  • Sign your child up for support groups, therapy or counseling. Both UCSF and the MS Society offer support groups.

The Emotional Impact on the Family

MS can take an emotional toll on siblings and parents as well. Parents worry about their child's well being and feel guilty that they aren't able to protect their child, while siblings may notice, and resent, that more of their parents' attention goes to the child with MS. Many of the same coping strategies — open, honest communication and social support, particularly from other people who are in the same situation — can be helpful for the rest of the family as well.

 

Reviewed by health care specialists at UCSF Benioff Children's Hospital.

This information is for educational purposes only and is not intended to replace the advice of your doctor or health care provider. We encourage you to discuss with your doctor any questions or concerns you may have.

Related Information

UCSF Clinics & Centers

Multiple Sclerosis Center
1825 Fourth St., Fifth Floor, 5A
San Francisco, CA 94158
Phone: (415) 353-3939
Fax: (415) 353-3543

Condition Information

Patient Experiences