Posted by: Gali Hagel – Monday, May 3rd, 2010
The short answer to the question of when and how to tell your child you have MS is that it depends on the age and maturity of your child. There is no one right way, and there are many differing opinions. But Dr. Dingledine and other experts do agree that there is no reason to burden your child until they need to know. And they need to know when they start sensing or seeing from your behavior that something is wrong, or just different.
Children do notice behaviors. They are smart, and they often see more than we think they do. They also have active imaginations, and the truth may be less scary to them than what they have conjured up to explain behaviors they don’t understand. Your child may not come straight out and ask what’s wrong; it’s up to you to be sensitive to your child’s level of awareness.
Self-awareness is important, too. When you think your child has reached a point when they need to know, ask yourself whose need this really is. Is it your child’s need to know, or your own need to unload?
When you do decide to explain that you have MS, in general the younger your child, the simpler the explanation should be. A straightforward “I have something called multiple sclerosis, or MS, and it can [make me tired] [affect my walking] [make it hard for me to be in the heat]” can be sufficient. Focus on behaviors. Older children may want and need more facts; they will cue you to how much to tell them.
Like adults, children need time to absorb difficult information. And, they will undoubtedly need to keep talking from time to time, even if they may have trouble letting you know that. Asking “What did you think when you saw that?” can encourage them to share.
Above all, remember that the goal is to help your child understand in a way that enables them to cope.