5 Questions for Parents of CF Teens

As parents of kids with CF, we can make a life-transforming difference by focusing as much on their mental health as we do on their physical health. If you think your child's CF is taking an emotional toll, asking yourself these questions may help.

Sept. 29, 2015 | 4 min read
Lisa Greene Headshot_square
Lisa C. Greene, M.A., CFLE

Not too long ago I had a conversation with an amazing dad who is concerned about his 15-year-old daughter. She has cystic fibrosis and it's taking a toll on her emotionally. She's been hospitalized a lot and is not doing well at school. He is afraid that she is giving up, and he needed ideas for how to turn it around.

Certainly there are no easy answers here, but if you are the parent of a teen with CF and can relate to this dad's experience, here are some questions that may help.

 1. First, is your child depressed? Working closely with your child's care team, you may consider taking your child to a professional who is experienced with working with people who have chronic illnesses. They can identify whether or not your teen is clinically depressed or if she is “simply” disheartened. People with chronic illnesses, such as CF, have a higher rate of depression and anxiety. Getting professional help early is the first line of defense. 

2. What brings your child joy? Without having something to look forward to in life, people get tired of living. Sometimes it takes a little effort to figure out what brings your child joy.

I worked with one mom whose 14-year-old son with CF was struggling emotionally. She knew that he loved animals, so this mom made arrangements at the local zoo for her son to volunteer periodically. This really helped give him something to look forward to and work toward as a possible career down the road. It gave him just enough hope and joy to get through some rough spots.

3. Are you purposeful about having fun and connecting as a family? With our own two kids who have CF, we have always made it a priority to have fun as a family. It's not always easy; we have to drag around a lot of medical equipment everywhere we go. But it's a priority for us, so we do what it takes.

After medical clinic visits when our kids were little, we'd go to the zoo, a children's museum, a park or out to somewhere fun for lunch. We still go out after clinic when we can. When our daughter was hospitalized for several days, we “busted” her out of the hospital (with permission) to see the premiere of “The Hunger Games” with her friends.

Everyday life affords many opportunities to make memories. Studies have shown that investing more time, energy and money in life experiences, i.e., "having fun," makes you happier than buying "stuff." I believe this approach has been a big part of our kids having a good attitude about cystic fibrosis, enjoying their lives and being connected as a family.

Family traditions, time together, fun experiences … these are the things that lend a sense of hope and meaning, especially during the hard times. 

4. Does your teen have a vision for his or her life? Sometimes when kids have a serious and progressive chronic illness like CF, they have a hard time seeing past the illness to a future. It's important that we encourage and empower our children to dream and plan. With many illnesses, including CF, there is so much hope for the future!

5. Can you connect your child with a good role model? Sometimes when a parent tries to encourage their teen directly, the child dismisses what their parent has to say with, “You don't understand. You're not the one with CF.” In these situations, it can really help to share positive, powerful role models who are as much like the child as possible.

And by the way parents, what brings you joy? Are you taking good care of yourself, making sure you get your batteries recharged and having fun every now and then? Do you have a sense of purpose and meaning for your life (outside of living for your children)? Your positive example speaks more than words and lectures.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

Share this article
Parents & Guardians | Emotional Wellness
Lisa Greene Headshot_square

As a national public speaker, Lisa speaks to parents and medical professionals about parenting, medical adherence, transition, and resilience. She is also the author of three books on parenting children with health issues. Lisa is a certified family life educator and parent coach. She holds a master's degree in family life education and teaches college classes at Concordia University in the Department of Child and Family Education. Lisa's mission is to help families learn practical, easy-to-use tools to deal with the everyday challenges of living with CF. You can find more articles by Lisa at www.TipsForCFparents.com.

Recent Community Posts
Cycling Across America
Blog | 5 min read
Reflecting on 50 Years of Volunteering
Blog | 5 min read
How My Brother Inspired Me to Give Back
Blog | 7 min read