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.
Starting the Conversation
Before you sit down with your child, think about her age, maturity level, and how much you think they 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 their own body and wellness
- Not wanting to spend time with close friends
- Higher anxiety and stress
- Trying to act older or younger than they are
- 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 they:
- Are depressed
- Have severe behavior problems or ones that don’t go away
- Can’t sleep or have nightmares for over a month
- Aren’t hungry or eat too much
- Lose interest in schoolwork or hobbies
- Have mood swings or change in their personality
What You Can Do
Find someone else your child can talk to about MS. You don’t have to be the only person they can lean on. A trusting relationship with a friend or family member can be helpful.
Share how you are feeling, both physically and emotionally. Don’t be afraid to start the conversation. Children appreciate it when you open the door.
Have open and honest discussions. Kids aren’t always ready to talk. Let them know that you’ll be ready whenever they are. Remind them that there’s nothing wrong with how they are feeling.
Include your child in family decisions. Whether you're divvying up the household chores or going to the hospital for treatment, it’s important to involve your child in some decisions. It will give them a sense of control and belonging.
Seek professional help if you need it. There are many counselors and support groups that can help your family adjust to the changes you’re facing.