Telling Your Kids You Have Multiple Sclerosis

Medically Reviewed by Jacque Parker, RN

A woman and her daughter

Recently a mother asked me how I told my young son about my Multiple Sclerosis. She was very frustrated and upset. After being sick for a week, her five-year-old son was getting stressed. She needed help, but was not getting the answers she needed. 

I am not a doctor or a psychologist, but I am a mother with MS.  Here are some ways to explain your diagnosis to young children

The Brain

First, draw Mr. Stick Figure. Make a big circle for the head. Draw a kidney bean or a peanut inside the head. That's the Mr. Stick's brain. Circle the brain showing that it is inside the head. Next, draw lines from the brain to different parts of the body, i.e., the hands, feet, legs. Now try to explain that the brain in Mr. Stick's head sends messages through those lines in the body but sometimes those messages don't make it through. 

Explaining Nerves

For explaining how the nerves transmit those messages, I used the idea of a remote control car as your body. The controller is the brain. Then attach some strings from your remote to the car itself to act as nerves. When moving the joystick one way or another, talk about how messages go down the string to the car to tell it what to do.  Then try fraying some of those strings or disconnecting them altogether.  Explain that this is what happens when the nerves from the brain to the body get damaged.

Another way to explain how the messages do not get through, is to take a long wrapping paper tube and talk through it to your child.  If you cut the tube or break it, the sounds changes and the messages are not as clear.  

Finally, when those messages don't get through, it causes your body to do funny things and makes you sick. Though it is a bit farfetched, you can tell your child that the "be happy" message is not getting through today. The same with the "be awake" message.

How Nerves Get Damaged

A simple way to explain what happens to the nerves and the myelin and what they are is to get an Oreo cookie. The myelin is the cookie outside and the nerves are the mushy white inside. If you chip at the cookie cover, the white (nerve) becomes exposed. Take the top off and drop the cookie on the ground, dirt gets all over the white filling and that shows how the nerve is not protected. Talk about how a dirty nerve might be bad at sending correct messages. This example helps explain how the myelin protects the nerves.

What Attacks The Myelin?

Think of a Disney or Marvel movie that your child loves, one that has bad guys and good guys. Explain your MS by pitting the good guys (your medicine) against the bad guys (the raging white cells.) The bad guys want to destroy the nerve coatings and the good guys must stop them. Since explaining the white cells as misguided might prove too confusing for a younger child, just be blunt and make them bad guys. It's a simple concept that children can grasp and process quickly. Always assure your child that the bad guys are not winning, but it is an ongoing battle. Remind your child that like in most of their favorite movies, bad guys never win. 

Remember the Basics

1. There is a battle going on in your body. 

2. Nerves tell your body what to do and are protected by coats. 

3. When the coat is damaged or removed, the nerve is exposed and the messages don't get through correctly. 

4. You are not going to die. 

5. The medicine you take helps fight the bad guys. 

6. There will be days when the bad guys seem to be winning. On those days Mommy or Daddy will not be feeling good. The best thing for your child to do is help you rest. Many children love to help and will be glad to be involved instead of banned from the room in which you are resting.

Did you find this article helpful? Join us at HealingWell for support and information about Multiple Sclerosis. Connect and share with others like you.

Lorna Moorhead was diagnosed with multiple sclerosis in 1999.

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