One of the toughest challenges you’ll face as a parent is deciding what to tell your child about cystic fibrosis (CF). You may be tempted to protect him by saying nothing at all, but that’s really not the best strategy. Keeping your child in the dark will only harm him in the long run.
What to Tell
Tell the truth. Your child is going to notice that his life is different than his friends’ lives. He needs to understand why. Answer his questions honestly, but try to tune in to what your child is really asking. Keep your answers simple and to the point. Give him the information he wants or needs to know, but don’t overwhelm him with too much information at one time.
Depending on your child’s age and maturity level, some things you’ll want to tell him are that:
- CF is not contagious
- CF is a genetic disease, which could be passed on to his children
- There is no cure for CF, but researchers are working hard to find one
- CF can be a life-shortening disease, but with treatment some people live long lives
- Following his treatment plan diligently can help him live better and longer
When to Tell
Many people with CF recall finding out about their diagnosis around the age of six, but this is just an average. You need to be honest with your child from day one, but give the information in small doses. Follow your child’s cues, and keep it age appropriate.
How to Tell
What you tell your child is important, but the way you tell him is even more important. When you talk to your child about CF, be sure you do it in a way that instills hope. Help your child see that CF is part of his life, but does not define his life. Whatever you do, don’t discourage your child from thinking about his future. None of us really knows what the future holds, but we all have hopes, dreams and plans for our futures none the less. Encourage your child to set goals and pursue his dreams, too.