Community Views: What Nobody Talks About with Cystic Fibrosis

While many people have heard of cystic fibrosis (CF) and may even know a little about the condition, very few fully understand what life with CF entails. Even the friends and family members of someone living with CF may not grasp how this diagnosis can greatly impact physical, mental, and emotional well-being.

To find out more about the unspoken aspects of life with CF, we turned to community members on our Facebook page. We asked them to tell us: “What are some things about CF nobody talks about?”

Nearly 70 people responded. Here is what was shared.

CF takes a huge mental toll

Living with CF can bring a lot of stress and anxiety. There is a certain stress that comes from the uncertainty of CF, along with the toll of daily treatments, remembering to take medicines, and hospital visits. It is not uncommon for people with CF to have feelings of frustration, depression, anxiety, and anger. Acknowledging and addressing the mental aspects of CF is just as important as treating the physical symptoms.

“Mental illness that comes with all the ups and downs.”

“Anxiety, stress, and depression.”

“Medical trauma and PTSD.”

“The mental anguish they go through, wondering if they are going to live to their next birthday.”

CF can cause additional health problems

There is a common misconception that CF only affects the lungs. However, anyone impacted by the condition can tell you that this diagnosis also brings a host of other health problems. Beyond respiratory system issues, CF can also affect the digestive system, cause infertility, and even lead to osteoporosis.

“All of the other health issues that come with having CF or things you are more prone to getting because you have CF. All the ‘extra’ things that come with it cause my husband more grief than the disease itself does.”

“CF-related diabetes.”

How common gastrointestinal problems are

The thick mucus caused by CF affects the digestive system and can lead to uncomfortable gas and issues with stools. While these symptoms are common, many people are embarrassed to openly discuss them, especially with others who do not understand.

“I am not too polite to say it: pooping and farting. And teachers who do not believe you are not making disgusting bodily noises on purpose.”

“The smelly poop.”

How much it costs

For most families, the costs of caring for someone with CF can be a huge burden. The medicines and doctor visits can cost thousands of dollars each year. This can also mean taking a lot of time to navigate health insurance coverage and costs.

“It is a financial hardship.”

“Being on disability. Because we have over $500,000 in medicine alone, not counting everything else. We are also trying to figure out how to make enough money to pay the bills because $840 dollars a month from Social Security does not go far.”

Thank you to everyone who shared insights for this story. We are grateful for so many people to share so openly. Thank you.