You have lupus and you don't understand it -- How can you explain it to your children?

By Robert H. Phillips, Ph.D.
Center for Coping with Chronic Conditions
 
This is a very common problem. How should you explain lupus to your children? For young children, less of an explanation will be possible, perhaps only including some reassurance that you'll be OK. With older children, explanations can be more detailed. Encourage questions. If your children really don't want to ask you anything, they won't. But they know they can if they want to. Upsetting thoughts kept inside can be destructive.
 
Questions from older children will probably be more direct and more specific. Resulting discussions, if handled properly, will not only be helpful for your children, you'll enjoy them. Great feelings of closeness can result. 
 
The way you answer questions depends on the age of your child as well as how much information is desired. Provide answers specifically for the questions. Don't go into detail, unless your child asks for more information. Try to determine what the child really wants to know.
 
Be careful that you don't frighten your child. Be careful of what you say. You know what you mean, but how will it be interpreted in your child's head? Think how you want your information received.
You want your child to share feelings with you about lupus. Showing that you accept having lupus, and that you don't mind (and even welcome) questions about it, will keep the lines of communication open.
 
Specific Issues
Frequently, children will ask you (or think about) whether you're going to die. They may see you in bed a lot. They can tell you're not able to do what you normally do. You may be having difficulty "getting around" adequately. You may need a lot of medical attention. What do you say then? Reassure them that you're not going to die. It might be helpful to bring them with you to speak to a professional (your physician or your child's pediatrician, for example).
 
What happens if lupus physically prevents you from being a "good parent" as you'd like to be? How do you explain to your child that you can't take him/her somewhere, or that you can't do what you promised? 
 
Children have difficulty understanding when they're upset. Start by emphasizing that you have no choice. Try to make "deals". Remind your children repeatedly that there may be times that you won't be able to do much. Work out ways that some pleasant time can be enjoyed together when you do feel up to it. 
 
Spending "quality" time with your children (special time where you really share feelings and activities) is more important than "quantity" time (how many minutes or hours you're physically with them). Spending quality time, talking with your children, and being open and receptive are the most important ingredients in helping your children handle your having lupus.