Community Views: How to Describe CF to Someone Who Has Never Heard of It

Last updated: January 2022

When life with cystic fibrosis (CF) is all you know, it can be challenging to describe this reality to people who know little or nothing about it.

To learn more about how community members explain CF to different people in their lives, we turned to the Cystic-Fibrosis.com Facebook page. We asked you to tell us: "How would you describe CF to someone who has never heard of it?"

Nearly 50 people responded. Here is a look at some of the insights you provided.

Like a cold that never goes away

Several people shared that CF feels like a cold that never goes away, which makes sense considering this diagnosis affects the lungs. Many folks named coughing and congestion as symptoms they deal with every day.

“If they think a cold is bad, imagine having one all the time. I have congestion, fatigue, and shortness of breath every day.”

“I explain that it is like when they are at their sickest with coughing and a painful chest. Plus, I am coughing crap up and have nose issues much like allergies.”

Makes it hard to breathe

One of the biggest challenges is that CF makes it hard to breathe. A few people in the community shared that they sometimes feel winded, even when just standing still or doing a small task like washing the dishes.

“If you think you get out of breath when you are out for a jog, imagine just getting out of breath when you only get up to do the dishes or laundry.”

Creates lots of mucus

CF creates a buildup of mucus in the body, which leads to a lot of coughing. This mucus also affects the organs’ ability to function.

“CF is a genetic disease that affects the lungs and the digestive system by surrounding the organs with sticky mucus. This makes organs challenged to function at their optimal level so those with CF need special treatments and medicines to move this mucus along.”

“I cough a lot. It is a producing cough that brings up constant thick mucus or blood.”

Makes it hard to gain weight

For many people with CF, getting enough nutrition is a daily struggle. Being underweight can make someone more susceptible to illness or just lead to fatigue, headaches, or generally not feeling well.

“You eat anything you want but you do not gain weight.”

“I have always said it is a lung disease that makes it hard to breathe and gain weight.”

The treatment is ongoing

Living with CF means taking lots of medicine each and every day. Treatment can also look like regularly going to the hospital. This diagnosis requires so much work and attention. For many people, there is the added emotional fatigue of spending so much time in the hospital when they would rather be out living their life.

“Having to take pills every day, at least 10 to 20 of them, then sitting and doing treatments for about an hour, 3 or 4 times a day.”

“Going to the hospital a lot.”

“A page of medications to take every day.”

“Lots of trips to the hospitals. You have to live very close to a CF hospital.”

Thank you to everyone who took the time to share responses for this story. We appreciate hearing such a variety of perspectives.

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