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How to Talk to Your Kids About Multiple Sclerosis

Once you learn you have multiple sclerosis (MS), it may take you some time to adjust to your symptoms and to know what to expect from your disease. The same goes for your children. They might be even less sure of what to expect than you are. They might also feel scared, sad, angry, or helpless about your diagnosis.

The most important thing to do is to talk to your children about how MS affects you and see what they’re thinking. Open communication can help you ease their fears, answer their questions, and let them know how you feel.

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Starting the Conversation

Before you sit down with your child, think about her age, maturity level, and how much you think she can understand about your disease. If you have more than one child, it may be helpful to talk to them individually so you can make the discussion right for each of them.

Don’t be surprised if your kids already know that something is up before you talk about it with them. Children of all ages are good at knowing when things are different. But you may want to ask them how they would like to learn more about MS. They can start by reading a book alone or with you, watching a video, or going with you to a doctor's visit.

Children's Reactions to Multiple Sclerosis

Sometimes normal emotions like fear, sadness, or guilt may lead to changes in a child’s behavior. Here are some signs to watch for in your child:

  • More focus on her own body and wellness
  • Not wanting to spend time with close friends
  • Higher anxiety and stress
  • Trying to act older or younger than she is
  • Behaving badly in public
  • Lying to friends about your illness
  • Temper tantrums
  • Waiting until you’re tired at the end of day to ask for things (such as help with homework)
  • Doing poorly in school
  • Nightmares, bed-wetting, and trouble falling asleep.

You may want to get professional help for your child if she:

  • Is depressed
  • Has severe behavior problems or ones that don’t go away
  • Can’t sleep or has nightmares for over a month
  • Isn’t hungry or eats too much
  • Loses interest in schoolwork or hobbies
  • Has mood swings or changes in her personality
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