Cystic Fibrosis and Mental Health: Here’s What to Know

Cystic fibrosis (CF) is a chronic, inherited condition that impacts many areas of a person’s life. This includes your mental health. CF causes a buildup of thick, sticky mucus in the lungs. This leads to difficulty breathing and frequent infections. It can also damage other parts of the respiratory, digestive, and reproductive systems.

Most people with CF are usually diagnosed at a young age. This means that they must navigate medical treatments and procedures early on in their lives. Let’s look at how CF can affect mental health and where to find help. 

Can cystic fibrosis affect mental health? 

Yes. There is evidence that people with CF are more likely to experience mental health conditions, like anxiety and depression. The World Health Organization (WHO) estimates that about 1 in 8 people worldwide have a mental health condition. But this rate is higher in people living with chronic medical conditions, like cystic fibrosis. 

How does cystic fibrosis impact mental health?

CF doesn’t directly cause mental health conditions. But there are many aspects of living with CF that can affect your mental health. 

Medical and procedural related anxiety

People with CF may need to undergo invasive and sometimes painful procedures. These procedures can happen often, usually starting at a young age. This can lead to feelings of fear, stress, and avoidance. In one study, 75% of children with CF reported feeling anxious about these procedures. 

Strain on relationships

Planning for the future can be a challenge for anyone living with CF. And it can also be challenging for your friends and family. People with CF are living longer than in the past. But CF remains a life-threatening condition. In addition to uncertainty about the future, side effects from treatment can leave you feeling tired and sick. This can affect how you are able to interact with loved ones. 

Financial stress

About two-thirds of people living with CF in the U.S. experience financial, food, or housing insecurity. Financial stress can lead to problems like missed medication doses. It can also contribute to delays in treatments and more frequent hospitalizations. These can significantly affect your overall disease outcomes and quality of life.

Missing major life events

It’s frustrating to miss out on important life events because of CF treatment and hospitalizations — especially during teenage years. The loss of time with family and friends can be challenging to handle. 

What mental health challenges do people with cystic fibrosis face?

Living with a chronic illness can lead to physical, psychological, social, and financial challenges.  These may help explain why individuals with CF are more likely to have mental health problems. 

There are many mental health disorders experienced by people with CF. Here are the most common.

Depression 

It is normal to experience feelings of sadness and loss when dealing with chronic illness. Usually, these feelings come and go. But if you have sadness that does not go away, you may be experiencing depression. Other symptoms of depression include:

• Feeling hopeless

• Difficulty concentrating

• Losing interest in things you used to enjoy 

People with CF and untreated depression may experience:

• Weight loss

• Trouble following treatment plans

• More frequent hospitalizations 

Generalized anxiety

Feeling anxious is a common response to stressful situations. But if anxiety starts to affect your daily life and your ability to manage your health, it can be a sign of a generalized anxiety disorder. People with CF and generalized anxiety may have:

• Trouble falling asleep at night

• Difficulty concentrating

• Irritability

About 1 in 5 adults with CF experience generalized anxiety.

Substance misuse

Substance misuse is when a person uses alcohol, medications, or other substances in an unhealthy way. The anxiety and stress of living with a chronic illness like CF can lead to the misuse of substances as a way to cope. But substance misuse can cause more physical and emotional impairments. And it can interfere with CF treatment and lead to worsened quality of life. 

Procedural anxiety 

Unlike generalized anxiety, procedural anxiety is worry about medical appointments, tests, and procedures. This type of anxiety doesn’t affect how you function in your day-to-day life. But it can significantly interfere with a medical appointment, test, or procedure. If untreated, the anxiety can progress and worsen. 

Mental health support for people living with cystic fibrosis

Recognizing the symptoms of anxiety and depression can be challenging. But discussing your mental health with your support team is crucial. This will ensure you get the help and resources you need. Here are some resources to start with: 

• Cystic Fibrosis Research Institute (CFRI): The CFRI provides individual counseling, support groups, and caregiver counseling resources. 

• Cystic Fibrosis Family Connection: This non-profit organization provides supplemental support for people living with CF and their family and friends. 

• Cystic Fibrosis Foundation: The Cystic Fibrosis Foundation helps connect people living with CF, and their friends and families, to a variety of resources. 

• Nationwide Children’s Hospital: This children’s hospital in Columbus, Ohio, has created a support webpage. It has a list of books, videos, apps, and other helpful resources. 

Why trust our experts?

Written by:

Meredith Grace Merkley, DO, FAAP

Dr. Merkley is a licensed, board-certified pediatrician who has over a decade of experience working in community health. She is currently a National Health Services Corp scholar, and is serving as the medical director of a school-based health clinic at a federally funded health center.

Edited by:

Patricia Pinto-Garcia, MD, MPH

Patricia Pinto-Garcia, MD, MPH, is a medical editor at GoodRx. She is a licensed, board-certified pediatrician with more than a decade of experience in academic medicine.

Reviewed by:

Christine Giordano, MD

Christine Giordano, MD, is board-certified in general internal medicine. She received her medical degree from Rutgers New Jersey Medical School and completed residency at Thomas Jefferson University.

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