How to Explain Chronic Illness to Children

Why is the sky blue? What makes it rain? These are just a couple of the burning questions parents hear from their children time after time. Questions about science and nature can be tricky enough, but when your child is diagnosed with a rare and chronic disease, the questions become more difficult. How do you begin to explain such a complex and confusing condition? Each child has her own personality and coping ability. How you explain her disease depends a great deal on her unique nature. You know your child better than anyone, and you can best gauge the right approach to describing what is happening and what lies ahead. The following are some general suggestions that might help as you decide the right words to use.

Difficulty: Moderate

Instructions

1. Use common-sense examples or experiences from the past. Children often understand difficult concepts by relating them to something they know or remember. Choose your words thoughtfully. It isn’t easy putting medical terms into simpler words, so try to use words that your child can best understand. There is more to having a chronic illness than the disease itself, with blood tests, scans and physical exams to endure. Make these exciting for your child when you can. Compare an x-ray to a special camera taking pictures of the muscles, lungs or other body part.

2. Be open and honest while staying as positive as you can. Certainly there are some tough questions that come with learning you have a lifelong disease, and spelling out each and every detail might not be appropriate. Often, she simply needs reassurance that you are there to comfort her and help her in every way you can. Trust your instincts.

3. Repeat your explanations using the same words and concepts each time. Learning to read and write require doing it over and over again; repetition also helps children grasp the more difficult ideas that come with having a rare disease.

4. Give it a name. Sometimes, especially for younger children, it’s enough just saying the name of the disease and explaining that this disease is what is making him feel bad.

5. Include your children. Nothing is more frightening to a child than watching her parents whisper between themselves. Include them in at least some of the discussions, and let them make some decisions. This offers them a sense of control over a largely uncontrollable situation.
   Be sure to let her know you welcome her questions.

6. Encourage your child to share his feelings. Tell him it's okay to feel scared or angry or frustrated but that he should talk about it and not hold it in.

Tips & Warnings

• Connect with other mothers and fathers living with childhood chronic illnesses to find out how they have explained the disease to their children.
• Find books online or in the library that discuss the specific illness your child has. These often have sections to help explain the disease to a younger audience.
• Consider having your child see a counselor or therapist if she feels depressed for an excessive period of time.