After you decide to talk to your kids about multiple sclerosis (MS), you may be wondering what to say and how to say it. Here are a few basic things to keep in mind:
Children have individual needs and learning styles. Because one size definitely doesn’t fit all, you have to tailor your conversations to each child’s needs — preferably one-on-one. One wants all the details and another just likes the big picture. One wants to talk and ask questions while another wants to read a book or watch a video.
Some kids will ask a lot of questions and show a lot of interest while others won’t appear to have the slightest bit of interest or curiosity.
One conversation won’t do it. Don’t expect to be able to gather all your children in the living room, give a short explanation of MS, and be done with it. Talking to kids about MS is a lot like talking to them about sex — you start with the amount of information they need at the time, and gradually expand on it as they get older and their needs (and your worries) change.
Regardless of how old they are — preschoolers or teens — all kids share a few major worries. Here are a few of those worries:
“Are you going to die?” When they ask this question, you can tell younger children that “Once in a while, MS can make someone so sick that they die, but most people live to be old. But you don’t need to worry about that because we will always take care of you.” Tell older children “People sometimes die of complications of their MS — like serious infection — but most people live very close to a normal lifespan.”
“Am I going to catch it?” Here’s what to tell younger children: “You can’t catch MS like a cold or the chicken pox — it isn’t contagious.” Tell your older children: “MS isn’t contagious, but some people have genes that make them more likely to develop it than other people. The risk, however, is low.”
“Did I make you get sick?” Tell both younger and older children the following: “No, you didn’t make me sick. There’s nothing that you or anyone else did to make this happen.”
Your children may not ask these questions directly, but they need the answers in whatever way you feel most comfortable giving them.
Let your kids know what you’re doing to take care of yourself. Nothing is more reassuring for your children than knowing that you have a good doctor who’s working with you to treat your MS in the best possible way.
Also, don’t worry about keeping your treatments and medications a secret. When you share info about your treatments, your kids feel more confident that you’re in charge and that your illness is under control. In fact, if you take an injectable medication to manage your MS, your kids will be very impressed with how brave you are.
Depending on your children’s ages and level of interest (and your neurologist’s bedside manner) you may want to schedule a time for the kids to come to the office with you so they can watch the neurologic exam and ask the doc some questions.