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.
It lasts just a few seconds, but it can be startling: An intense burst of pain like an electric shock that runs down your back into your arms and legs when you move your neck. It’s called Lhermitte’s sign, or barber chair sign, and it’s often one of the symptoms that people mention when they’re first diagnosed with multiple sclerosis.
The problem can be painful, but it’s not life-threatening. With time or with treatment, some people stop having Lhermitte’s sign.
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: