How to Raise Hopeful, Empowered Teens with CF

By Lisa C. Greene, MA CFLE

I talked with an amazing dad who is concerned about his fifteen-year-old daughter. He is afraid that she is giving up. She has cystic fibrosis (CF) and it's taking a toll on her mentally and emotionally. She’s been hospitalized a lot and is not doing well at school. He feels like she's just waiting to die and he needed ideas for how to turn it around. 

I certainly don't profess to have simple answers to this complex problem but here are some of the ideas that I shared with him and I thought might help you too. 

1. First, is your child depressed? I suggested this dad take his daughter to a professional who is experienced with working with people who have chronic illnesses. They can identify whether or not she is clinically depressed or if she is “simply” disheartened. People with chronic illnesses have a higher rate of depression. Sometimes their medications can cause symptoms of depression. Getting professional help early is the first line of defense. Keep in mind that some people express depression as anger, particularly men and boys. Also, children can become depressed but may exhibit symptoms that can be different from the classic sadness that most of us associate with depression. 

2. What brings your child joy? Without having something to look forward to in life, something or someone that brings you joy, people get tired of living. Sometimes with kids it takes a little effort to figure it out. I worked with one mom whose son was 14 with CF and struggling with similar issues as this teenage girl. He loved animals. 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 towards as a possible career down the road. It gave him just enough hope and joy to get through some rough spots.

And, by the way parents, what brings you joy? Are you taking good care of yourself, making sure you get your batteries recharged, and have 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. 

3. Are you purposeful about having fun and connection 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 to 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 of the hospital (with permission) to see the premier of “The Hunger Games” with her friends. 

Everyday life affords many opportunities to make memories. Living in WA State, we enjoy the snow in the winter whether it’s skiing, sledding or snowballing. And in the summer, we go somewhere fun even if only a road trip with tents.  Of course, visits to grandparents in Florida are always cherished. 

As a family, we try to invest more of our time, energy and money in "having fun" than buying "stuff".  Healthday News (April 2, 2014) says, "Buying so-called 'life experiences' makes Americans happier than material goods such as cars, but they tend to favor the latter in the mistaken belief that they provide better value, according to a new study" published in Journal of Positive Psychology. I agree with these findings and 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. 

It all adds up over the years. Memories form to create the sense of a life well-lived. Family traditions, time together, fun experiences… A life well-lived lends a sense of hope and meaning even during the hard times.   

Linda, a mom of a teen with CF, shares: "Our daughter moved from our hometown when she was 6, hasn't been to school since 3rd grade, is now in a wheelchair with continuous iv's and oxygen at the end stage of CF. She has a great outlook on life and loves making memories. We make memories every day even on her bad days." 

4. Does your teen have a vision for his or her life? Sometimes when kids have a serious chronic illness like cystic fibrosis (CF) that is considered progressive, they have a hard time seeing past the illness to a future. As parents, we might feel the same way, too. But it’s important that we put our own fears aside so that we can be encouraging and hopeful, empowering our children to dream and plan. When weare hopeful, our children are more likely to be hopeful. With many illnesses including CF, there is so much hope for the future! And we have amazing peopleto help light the way and give us encouragement when we are down.  

Take Elizabeth Nash, for example. When Liz was diagnosed with CF in 1973, her parents were told not to expect her to graduate from high school. But she didn’t let that stop her. Liz earned a PhD in molecular genetics, interned at Johns Hopkins University and went on to become a research scientist for CF. She also volunteered as a mentor to teens with CF.

Liz “thumbed her nose” at CF. As the captain of her college ski team, she refused to quit even when she needed to use oxygen. She just skied with a backpack filled with portable oxygen tanks! 

Because she was so inspiring, Elizabeth was selected to carry the 2002 Olympic Torch through Union Square in San Francisco. I’m sad to say that Liz died at nearly 33, well past her “statistical average” at the time. But she taught us that it’s not how long you live that matters, it’s HOW you live.  

5. Speaking of mentoring: Can you connect your child with a good role model? When parents try to directly express hope and encouragement in an attempt to help their child, the child may discount what the parent has to say with, “You don't understand, you're not the one with __.” That's why it’s important to share about positive, powerful role models who are as much like the child as possible.

For example, with this dad, I suggested he try to connect his daughter with Christina Christensen.  Christina and her older sister, Ali, took the CF world by storm (and many others too) when they competed in America’s Got Talent in 2010 and came very close to winning. They areboth incredibly positive, inspiring, beautiful (inside and out) people who show us how to “do CF right”.  

6. Help your teenager begin to make specific plans for the future including career planning. This goes along with helping your teen have a vision for his or her life. When teens are in high school, they typically start the career exploration and planning process. Encourage your teen to participate fully.  Don’t let his or her illness be an excuse not to do something that is even remotely within the realm of his or her possibilities. Liz Nash, is a great example of this. Ask your teen: “If you didn't have __, what would you want to do with your life? How can you overcome the roadblocks? What's your first step? How can I support you to make your dreams come true?”

Even if your teen can't be exactly what they want to be, they might be able to still participate in another way. For example, maybe your teen can't be a firefighter but they can still work directly with firefighters in any number of capacities. Help your teen to explore options, interview people, and get creative.   

Encourage your teen to take career and interest inventories and personality tests like Myers Briggs to help figure out areas of strengths and interests. Take your teen to visit different companies that may be of interest for career paths. 

For our fifteen-year- old son with cystic fibrosis (CF) who has a strong interest in math and engineering, we visited the Boeing plants here in Seattle. We also connected him to a robotics competition offered through FTC, a national robotics club. Just because Jake has CF doesn’t mean he can’t enjoy life and plan for the future. He is a good student and we work hard to help him stay caught up with schoolwork during long hospitalizations.  Over the years, he has played basketball, is currently in track, and just became an Eagle Scout. He and his dad participated in the Seattle to Vancouver, BC bike ride (about 200 miles) two summers ago. Last summer, he went on a twelve day Boy Scout trek in New Mexico and this summer is joining a mission trip to build homes for an orphanage in Mexico. 

All of this doesn’t come easy. Jake works hard to keep up, doing two hours a day of medical treatments. Occasional hospitalizations for IV antibiotics slow him down at times but he doesn’t let that stop him from his dreams and goals; he just works harder. My daughter is the same way in her own special way but I’ll save her story for another blog.

7. Help your teen find ways to contribute to someone or something outside of him or herself. When a child has a chronic illness, it is natural for family members, both immediate and extended, to revolve around the patient. Without counter-balance, this can result in children, and eventually teens, who are self-focused and even entitled. For a great example of this, watch the movie "The Secret Garden."

People just don't function well when they are the constant center of the universe.  Helping teens learn that they are an important, contributing member of a family and society is a critical first step to helping them find meaning and purpose in their lives. There is something fulfilling to the human soul about helping those who are less fortunate. Seeing that there are other people "out there" who also suffer various misfortunes and hardships can help teens refocus their thoughts from, "Why me?" to "I can make a difference."

8. Encourage and participate in "faith". Research shows that people of faith have more hope, are physically healthier, happier and live longer. When times are really tough, we need something to hold on to; some sort of anchor in the storm.  

I am not an expert on world religions, but most believe in some sort of an afterlife. Whatever the religion, people find comfort in knowing that there is something bigger than us in all of this; that there is some meaning and purpose for it all, even if we don’t know what that might be.  

A research report of the National Study of Youth and Religion (2002) titled Religion and the Life Attitudes and Self-Images of American Adolescents reported that "Regular attendance, high importance of faith and years spent in religious youth groups are clearly associated with high self-esteem and positive self-attitudes". 

Even if you don't go to church every week, encourage your teen to explore and participate in faith-based activities. 

9. Be positive and real at the same time. Sometimes, in our attempt to be positive and hopeful, adults can come off as a little “fake.” People, including our kids, can pick up fake from a mile away.

I have found over the years that most people appreciate honest, straightforward, compassionate and gentle discussion about struggles and fears around illness. We all know it's there but many people understandably have a hard time talking about the elephant in the room. However, when we face it and talk about it, it helps us and our teens to cope with it.

When a teen expresses frustration about illness, adults can open up dialogue and communication by acknowledging the feelings and asking exploratory questions rather than offering clichés and false assurances. After your teen feels heard, help brain-storm about solutions to a problem they might be having or look for a different mind-frame. More ideas can be found in my blog on "giving and receiving support". 

With our teenagers (who both have cystic fibrosis), we discuss the increases in life expectancy and how medical technology continues to help that number increase. We discuss new research and look at the drug development pipeline to see what’s new. (Visit www.CFF.org.)  We try to keep our focus on today, living one day at a time. Our faith also helps us find a more positive focus when times are hard. 

10. Have everyone in the family practice gratitude. Count your blessings out loud each day, not just at Thanksgiving. Make a family practice of keeping a gratitude journal and share it weekly over dinner or a fun family get together. Gratitude for new medical discoveries and great doctors can be encouraging.

Parents are a powerful example for their children. Even if your teen won’t participate, just hearing the little things that everyone else is grateful for can help to change perspective little by little. If you are having a particularly hard time with your child, keep a gratitude journal about him or her. Then, share it. Words of love and encouragement can heal the hearts and souls of both giver and receiver.

11. Guide children and teens to focus on "being" rather than "doing".  Life on planet earth tends to be defined by what we do, not necessarily who we are. The idea of achievement and excellence based on results starts early from academics to sports to the quest (of many) for fame and fortune. 

Don’t get me wrong, I think achievement and excellence are great! However, when our self-worth, meaning and purpose in life are defined solely by these areas, what happens when a child, teen (or adult) doesn’t excel or achieve? What happens when what we do and what we have isn’t important enough or glamorous enough or good enough by the world’s standards? Or what happens when people with chronic illness are unable to “keep up” with these standards? Or they achieve great things early on as many do but, due to progressively severe health issues, can no longer keep it up? It’s called an “existential crisis” and can result in depression and loss of motivation to take care of one’s self and in severe cases, they just give up. 

As parents and professionals, it’s important that we guide our children, teens, and patients to find meaning, purpose and contentment in life because of WHO they ARE, not WHAT they DO. 

This journey of meaning and purpose is a lifetime process for all human beings. And it is especially important for people with chronic illness who may be experiencing an accelerated life cycle due to a lowered life expectancy. 

Many people hit an “existential crisis” (also called an “identity crisis”) in their 40′s (hence the term “mid-life crisis”). Then we hit it again in old age as a “taking stock” of one’s life.  This life stage is described by psychological theorist Erik Erikson as the stage of Integrity vs. Despair where, looking over one’s life in old age, we either feel that our life has been wasted and we will be left with bitterness and despair. Or, we will feel satisfied with our accomplishments, ourselves and the way we lived which leads to contentment and acceptance even as we face death. This life stage occurs around age 60 to 70 however people with a shortened life expectancy face this much earlier, before many have a chance to fully develop as human beings. It’s almost like a butterfly being pulled out of the chrysalis too early. 

That’s why young people with CF and other chronic illness need to be purposefully guided and supported in their development; basing their self-worth not only on accomplishments but also on who they are as a person including character strengths and virtues. Psychologist Martin E.P. Seligman and colleagues have developed a whole new area of study in this subject called positive psychology to tap human potential as well as treat psychological disorders. 

Viktor Frankl, also one of the great theorists, and a concentration camp survivor, says: “Life is never made unbearable by circumstances, but only by lack of meaning and purpose.” - Viktor E. Frankl, Man's Search for Meaning 

As parents, medical professionals, and other caring adults that are involved with children and teens with chronic medical conditions, we can make a life-transforming difference by focusing as much on their mental health as their physical health. 

As Besier and Goldbeck said so succinctly in their 2012 study titled Growing up with cystic fibrosis: achievement, life satisfaction, and mental health: "A favorable mental health status seems more important than pulmonary function to maintain a good satisfaction with life." 

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Lisa C. Greene, MA, CFLE
Lisa is a national public speaker, writer, and a mom of two teens with cystic fibrosis. She is also the co-author with Foster Cline MD of the award-winning Love and Logic book “Parenting Children with Health Issues.”  Lisa's mission is to help parents learn practical, easy-to-use tools to deal with the everyday challenges of raising kids. Her message is: "You can do it!"

For more information about Lisa, see www.pcwhi.com and www.happyheartfamilies.com