The Emotional Effects of Living with Cystic Fibrosis

Coping with any chronic illness, especially one as serious as cystic fibrosis (CF), can be emotionally draining. However, there are ways to find the support you need.

What is the emotional impact of having cystic fibrosis?

The emotional impact of CF on children, their parents, and adults with CF are well documented. A large U.S.- European study recently found that 10% of teens with CF, 19% of adults with CF, 37% of mothers, and 31% of fathers have experienced depression. Anxiety appeared in 22% of teens with CF, 32% of adults, 48% of mothers, and 36% of fathers. These results are two to three times higher than those in the general populace.¹ The study also found that teens whose parents reported depression or anxiety were more likely to have symptoms of these mental health issues too.¹

Healthy coping for parents who have a child with cystic fibrosis

The emotions that parents of children with CF feel can be overwhelming. Common reactions include guilt that your child inherited CF from you, worry and fear about their future and resentment for the time and attention that a child with CF needs. It’s vital to your child’s health that these feelings be acknowledged and dealt with so that you can raise a happy, healthy child.^2,3

Connecting with other families who are dealing with CF will give you a sense that you’re not alone. The CF community is active worldwide, giving you the chance to find parents who know exactly how you feel and what you’re going through. They may also have great tips and advice on how to handle the many issues unique to raising a child with CF.

Other healthy ways to cope with your child’s cystic fibrosis include:

• Relaxation techniques, such as massage, guided imagery, or listening to music
• Getting together with friends
• Regular exercise
• Talking to a counselor or psychologist

Learning more about CF and its treatments can help you feel more knowledgeable, in control, and hopeful for your child’s future.

Healthy coping for teens and adults who have cystic fibrosis

Teens and adults with CF should remember that feelings about their illness can change from day-to-day and week-to-week, especially if you go from feeling well to feeling tired and sick. Such ups and downs are normal. Finding the combination of healthy coping skills that work for you is an important part of that process.^2,3

Remember, you are not alone. Talk to friends, family, or someone on your CF team about how you are feeling. Most people are happy to listen. They may not have any answers for you but just getting the emotions off your chest can make you feel better.

Knowing and accepting yourself can also make your life easier. This means letting yourself rest when you’re tired or call your doctor if you feel symptoms getting worse rather than comparing yourself to others who don’t have CF. It may also mean recognizing when you feel anger or resentment that you have CF or feel worried or have fears about the future.

Connecting with other people who have CF will also give you a sounding board from people who know exactly how you feel and what you’re going through. They may also have great tips and advice on how to handle difficulties unique to CF. A wealth of online communities support people who have cystic fibrosis, including the forums on cystic-fibrosis.com.

Other healthy methods of coping with CF include:

• Regular exercise
• Relaxation techniques, such as massage, guided imagery, or listening to music
• Yoga or tai chi
• Good nutrition
• Getting together with friends
• Talking to a counselor or psychologist

Learning more about CF and its treatments can help you feel more knowledgeable and in control of your own health.

Resources for people with cystic fibrosis

Your CF care team and non-profit organizations can help you find local CF support groups and the emotional assistance you need. You can start with the Cystic Fibrosis Foundation’s Compass program. Compass offers personalized, one-on-one service to help people with CF deal with challenges related to the disease. Case managers can help with insurance, living expenses, legal issues, and clinical trial enrollment.