How to Talk with Kids About their Medical Issues

I asked the doctors, "So how do I talk to my children about their illness? What do I tell them when they ask questions about how long they'll live?" And they said, "Treat it just like when kids ask questions about sex- answer them on a 'need-to-know basis'." "Okay," I thought, "I can do that." I figured that my kids are young so I'll have plenty of time to figure it out.

But then, as we were driving down the road one day, a question came out of the blue: "Mommy, how does the daddy seed get into the mommy's tummy to make the baby?" I stuttered and swerved and mumbled something about needing to pay attention to the road so I'd have to get back to them on that.   I thought, "A need to know basis??! What does a four- and six-year-old need to know about that?" And that's when I realized I didn't know how to talk to them about sex anymore than I knew how to tell them that the disease they were born with, cystic fibrosis, has a life expectancy of 37 years of age.

Parenting is tough enough at times for just about every parent. But the situation gets even more difficult when a child has a serious health issue. What do you say to a child who struggles with life-threatening allergies, cancer, cystic fibrosis or diabetes?   What do you do when parenting is truly a matter of life and death?

Parents must navigate a complex maze of medical information and cope with children who may be resistant, confused, or frightened. There are many difficult-to-answer questions that a child may ask: "Will my disease kill me?" or "Will it hurt when I go to the doctor?" or "What will happen if I don't take my medication?" Unprepared parents may find themselves at a complete loss.

Having now officially joined the "unprepared parent at a complete loss" club, I turned to an expert to answer these questions. Foster W. Cline MD is a gifted child psychiatrist and co-founder of Love and Logic. I knew if anyone had answers, he would. Here's what he taught me:  

• Teach your children early on about their medical condition and be honest about the consequences of non-compliance. One of the most challenging things for parents is to have a difficult discussion about life-threatening  content in a matter-of-fact manner. The key is to show curiosity and interest while outlining the consequences (of non-compliance) and show no fear and angst about the issue. Generally speaking, if parents don't show fear and angst, then the child won't become fearful. Children pick up on our cues.   Usually we don't know exactly how to handle these issues with our kids, so if we ask questions, they actually end up guiding us. If that method is good enough for therapists, it's good enough for parents! Some good questions to ask are:
  • "How much do you know about your illness?"
  • "How worried are you?"
  • "How are you handling it?"
  • "What can I do to make things easier?"
  • "Is there anything more you need to know?"

Obviously, we would explain things differently to a two-year-old than to a six-year-old. Concrete examples, word pictures and drawings are important communication tools for explaining things to young children. Condition-specific children's books can be very helpful. Hopefully, we would have had the whole thing clarified completely by around age six and the child would be fully aware of the situation.

• Set the example: Kids learn from our modeling. It's never too early to start teaching good health habits. Wise parents cheerfully model the behavior they want their child to learn: "Here's some cereal for you. Let's check if there are any peanuts in it. Nope! That's good. Peanuts can make you very, very sick. This is a no-peanut zone!"  Remember, toddlers can understand what you say long before they can actually talk.

• Here are some guidelines to follow when discussing difficult issues with your children:   

1. Before you give answers, ask yourself: whose needs are you addressing - yours or your child's?  
2. Consider whether you are giving more information than the child wants or needs to hear.    
3. Be open to your children talking with you about anything and everything.    
4. When you are not sure how to give the answer, ask more questions.  
5. Recognize that sometimes your child is trying to protect you.  
6. Show acceptance even when you can't show approval.
7. Every answer dealing with life-and-death issues should leave room for hope.

In summary, what we say depends on the age of the child, the ease of the parent in dealing in a matter-of-fact way with reality laced with hope and upon the parent's religious beliefs. But it might be something along the lines of: "Darling, God gives us a gift by not letting us know exactly how long our life on earth is. But one thing is for sure: some people pack years of experience into a shorter life, and some have a pretty vacant and hollow longer life. I guess what is important is not how big the bowl is but how much ice cream is in it! Your years could be shortened some because of your illness. On the other hand, lots of folks with illness live a nearly normal life span. But how important is that really?  The thing that makes my heart sing is knowing that however long our lives are, our family packs it full of good experiences and gifts for others."  

Dr. Cline answered my questions about talking kids about illness so well that I decided to ask him one last question...