“But you don’t look ill...”: The invisible symptoms of CF

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Cystic fibrosis (CF) is often described as an invisible illness: despite the battles going on inside the body, a person with CF might not always look ‘ill’ on the outside. Here, we take a look at just some of the invisible symptoms of CF… 

Coughing and lung infections 

Perhaps the least invisible symptom of CF is the cough that people with the condition often experience. Sticky mucus in the lungs creates the perfect environment for harmful bacteria to get trapped and thrive, often causing a persistent cough, wheezing and sometimes leading to irreparable lung damage. These infections can become serious and lead to hospital stays for intravenous antibiotic treatment. What most people don’t see, however, is the time (sometimes hours) that people with CF spend doing physiotherapy and exercise each day to help loosen the thick mucus, helping the movement of air through the lungs. 

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Mental health 

Living with any chronic illness can have an impact on mental health: fear of what the future holds, survivor’s guilt and health anxiety are all common in people living with a life-limiting condition. Fluctuations in health can also cause periods of mental stress, especially if physical health takes a turn for the worse. Recent advancements in the treatment of CF have brought new levels of hope to many in the community, with improved outlooks and an increase in life expectancy. Although good news, this can leave some people with CF facing a future that they didn’t think they would have and haven’t necessarily planned for, which can cause anxiety.  

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Puberty and fertility 

In young people with CF, the onset of puberty can be delayed, usually by 18 months to two years. At an age when hormones are in full force and peer pressure can be rife, this can affect self-esteem and cause anxiety. In adults with CF, fertility can be affected: women are more likely to experience irregular periods, particularly if ill or underweight, and thicker vaginal mucus can make it harder for sperm to reach the egg, making it more difficult to conceive. Around 98% of men with CF will not be able to father a child without fertility treatment due to the tube that carries sperm from the testicles to the penis (the vas deferens) being blocked or missing.  

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Bones and joints

As we age, our bones become weaker and more prone to fracture. In people with CF, this thinning of the bones can start at an earlier age. Bone strength is strongly linked to severity of lung disease and body weight, so those who have experienced more frequent lung infections and had trouble maintaining a healthy weight are more susceptible to weaker bones. Around in 10 people living with CF also experience arthropathy (disease of the joints).  

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Pancreas and digestive system 

In addition to the lungs, the pancreas and digestive system are heavily affected by CF. Many people with the condition take supplementary digestive enzymes to help them digest food. In CF, the pancreas is unable to release digestive enzymes, as thick mucus blocks the small tubes through which they travel. This is called pancreatic insufficiency.  The scarring caused by the build-up of enzymes can also mean that the pancreas cannot effectively produce insulin needed to regulate the amount of sugar in the blood, resulting in CF diabetes (CFD). CFD affects around 30% of adults with CF. 

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These are just some of the many invisible symptoms of CF.  

Over 2,000 variations of the CFTR gene have been identified so far, and even two people with the same variations won’t necessarily experience the same symptoms. When you add to this the huge range of other influencing factors, the one thing we can say for sure is that CF is as individual as you are! 

Don’t judge a book by its cover… 

Remember, just because you can’t see what is going on inside someone, doesn’t mean that person isn’t fighting hard to stay as well as possible.

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. Over 10,800 people in the UK are living with cystic fibrosis (CF), but the condition is still widely misunderstood.

The COVID-19 pandemic has made common many of the everyday experiences of the CF community. The sacrifices made. The distances kept. The milestones missed.

But while many people now look forward to a return to normality as restrictions lift, the effects of the pandemic are not over for all of us. Those with CF must go on experiencing them, every day.

Because we were coughing before it went viral.

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Share your #CFTruths

Help others understand what everyday life is like for people with CF. Remember to tag us @cftrustuk and use the hashtag #CFTruths to join the conversation.

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