Cystic fibrosis is not just about medication, physiotherapy and regular visits to the doctor. It is about living with a disease that often goes unnoticed by others, but constantly affects a person’s physical and emotional state. One of the biggest challenges for many patients is having to explain to others over and over again what cystic fibrosis is, why you cough, why you have a disability certificate, why it is difficult to gain weight or why sometimes you just don’t have enough strength.
We publish Brad Dell’s personal story* with real-life examples of how to explain the essence of the disease in different life situations: in the hospital, at work, in transport, among friends or strangers. This text is not an instruction, but a sincere experience that may be useful to those who live with cystic fibrosis themselves or want to better understand what patients go through every day.
*Brad Dell was diagnosed with cystic fibrosis at the age of two months in 1993. He spent his childhood and currently lives in Hawaii.
Brad Dell:
“You never know when you’ll have to explain cystic fibrosis (CF). Maybe someone is looking at you in surprise during a coughing fit, or you’re in the hospital emergency room and worried that infection control protocols won’t be followed. Below are my basic explanations of CF in different situations:
In the emergency room or while talking to emergency medical personnel:
«I have cystic fibrosis, a rare lung disease that also affects the digestive system and sinuses. Please contact my pulmonologist and check my medical record—I take a lot of medications. And can I be in a separate room, away from patients with respiratory symptoms?”
Due to possible drug interactions and the presence of dangerous microorganisms in hospitals, a visit to the emergency department can be risky. It is important to identify your needs immediately and contact a pulmonologist as soon as possible.
After a coughing fit or when clearing your nose:
“Don’t worry, it’s not contagious! It’s a hereditary lung and sinus disease that I was born with.”
I’ve noticed that the word “hereditary” puts people at ease. Most people don’t realize that you can be born with a contagious disease.
When people look at me with disapproval for using a disability card or disability signs on my car:
“I have a lung condition that is not always noticeable, but sometimes it is very difficult for me to breathe – even walking becomes difficult. This document is for my safety.”
Many people don’t know that a disability card or other signs indicating a disability are not only required for those who use mobility aids. You can help others understand that not all disabilities are visible.
When people comment on how thin I am:
“I would love to gain weight! It would give me more energy. But my illness prevents my body from absorbing nutrients, and lung infections are a huge calorie drain.”
Many people forget that nutrition and weight directly affect energy levels. It’s worth a gentle reminder that weight is not always a choice, and that I am dealing with an invisible illness that is extremely debilitating.
In a professional environment, at work:
“I have cystic fibrosis, a non-communicable lung disease that can also affect my sinuses, digestion, and energy. I usually take care of my needs so that the disease doesn’t interfere with my work, but sometimes circumstances arise and I need some accommodations to maintain the quality of work I expect of myself.”.
I emphasize the quality of my work so that people understand that I am not trying to avoid responsibility, but rather to ensure that the results meet my own standards. I take pride in my work and want to maintain that feeling.
In social situations (with friends, family, or just interesting people):
“Imagine my body not producing mucus properly. We all have mucus, but because of my condition, it becomes very thick, which blocks my lungs and digestive system. This sets off a whole chain of health problems.”
Many people don’t know that everyone has mucus — even when we’re not sick. I’m clearing up this misunderstanding because it makes me feel less embarrassed to talk about my illness.
When you need to set boundaries (for example, if someone is acting indifferent or insensitive):
“Cystic fibrosis is a serious disease that makes it difficult to breathe. And when there is less oxygen, there is less energy. I don’t always have the strength to explain everything in detail, but I appreciate your understanding.”
Not everyone remembers that we live with an invisible illness every day. It’s worth reminding people that we have much less energy than they do. If someone doesn’t understand, remind them how they felt when they were sick and couldn’t do anything.
Sometimes you have to be very concise:
“Cystic fibrosis is an inherited disease, I was born with it. It causes chronic, but not contagious, lung infections, so I may cough a lot or get tired easily. I also have trouble gaining weight.”
I use this explanation when people want to understand what’s wrong with me, and I’m too tired to talk for long.
Source:
https://cysticfibrosisnewstoday.com/cfawarenessmonth2025/heres-how-quickly-explain-cystic-fibrosis/
