Talking with the Kids

When it comes to living well with MS, our family and friends can make all the difference. Along with good medical care, a strong network of family and friends is one of the most valuable resources a person with MS can have. But some members of the family may be too young to fully understand the big picture of MS. Talking to kids about the disease can be tricky. We want to be honest with our kids, but we don't want to scare them unnecessarily.

If you're a parent with MS, one of your biggest concerns is how to tell the children you are sick. Chances are they already know that something is going on. Kids pick up on their parents' emotions. So don't avoid the subject. Encourage them to share what they are thinking. This will give you the chance to comfort them and clear up any false beliefs they may have about MS. Sometimes they are actually relieved because the truth is not as bad as what they may have thought.

Share your feelings—so they'll share theirs

It's okay to show kids your true feelings. Just don't forget to reassure them that the feelings you are having are normal. It may help them feel more comfortable about showing their feelings.

Sometimes, when kids are scared, their behavior changes. Their grades may slip. They may withdraw from friends and social activities. They may even become aggressive. Sharing your thoughts and feelings with your kids will help them open up and share in return.

Encourage your children to show their feelings, no matter what their age. Just as your MS changes as you get older, you will notice your children's concerns change. As children get older, they may hide their feelings because they do not want to burden you. There are health care providers who can help if you or your child needs it. Do the best you can to keep your family communicating.

Answering their questions

"What is MS?"

As you know, MS is a complex disease that affects the brain and spinal cord. Concepts of "demyelination" and "autoimmune disease" are difficult enough for adults to grasp. Using these kinds of technical terms with kids will likely confuse them. To make your MS something they can grasp, it's a good idea to use analogies. For example, tell them to think of the body as a bunch of wires that carry information. If we want to move our hand, a message travels across the wires from our brain to our hand. With MS, the covering around the wires is damaged. That can prevent messages from the brain getting to the right place.

Younger kids also tend to see things as "black and white." The concept of a disease with subtle symptoms may be too abstract for them. Showing them things they can see and touch makes the idea more tangible. For instance, showing kids things related to your treatment can help. Show them something like a syringe or an autoinjector, and explain that these things help you stay well. This also can reduce some of their fears of seeing you self-inject. Of course, always keep your syringes and medications out of the reach of children.

"Can I catch MS from you?"

As obvious as this answer may be to adults, don't assume kids know this one. Make it clear that people don't "catch" MS like they catch a cold. Reassuring your children that they are safe is the first step in getting them comfortable with the idea that you have MS.

"Are you going to die?"

This is another common fear for children of people with MS. You should make it very clear that people rarely die from MS. If they're still worried about how MS may affect you, be honest with them. Tell them you may get tired more easily. You may need help getting around. You may have to go to the hospital from time to time. Since MS is different for every person, it would be impossible to tell kids exactly what to expect. But you can prepare them with the possibilities. And you can reassure them that typically, people do not die from MS.

"Did I do something wrong?"

As strange as this question may sound, kids may assume your MS is their fault. Younger children tend to think the world revolves around them. They often think they play a role in everything that goes on around them—good and bad. Reassure your child that he/she had absolutely nothing to do with your being sick. Kids may also pick up on anger in your home. Perhaps the stress of MS has you arguing more with the adults in your home. Maybe MS is causing sudden mood swings that include anger. Whatever the case, let your kids know that you're not angry with them. This will make the disease less scary for them.

Doing what's right for you and your family

Since MS affects everyone differently, how you talk to your kids should be based on your own experiences. If you're newly diagnosed and have no obvious symptoms, you may choose not to discuss your MS right away. Remember, young children have difficulty with abstract concepts. Some people choose to discuss their MS only once the symptoms (e.g., fatigue, memory changes) affect their interactions with their children.

In the end, the most important thing to remember is that children are very adaptable. The key is talking to them honestly but realistically about MS. As long as they have the facts and feel reassured, children can adjust to just about anything.