The Emotional Roller Coaster of Cystic Fibrosis

Those who live with cystic fibrosis must manage their disease intensely, usually for multiple hours a day, every day of their lives. The disease causes an abnormal amount of thick and obstructive mucus to form around the lungs and other nearby organs. Over time, this can lead to high risk of infection, difficulty breathing, and eventual respiratory failure. Cystic fibrosis is a progressive illness, meaning that patients will steadily decline over a long period of time.

There is a long list of common symptoms and complications that a person must learn to manage and overcome over the course of their life. This includes constant respiratory issues like wheezing, difficult catching one’s breath, chronic coughing, and a constantly dry or runny nose. Most people also experience difficulty maintaining a consistent weight, intestinal problems, and problems having clean or easy bowel movements.

Despite all of the struggles and symptoms that a person with cystic fibrosis must face, the hardest symptoms are typically not physical. The emotional struggles that a person with cystic fibrosis must face over the course of their lifetime are much less visible, and much more difficult to treat. As social and psychological problems arise in members of the cystic fibrosis community, more and more people are recognizing the importance of mental health and emotional wellbeing in those who must face their own internal health problems every day.

Cystic fibrosis youth and emotional development

Having cystic fibrosis puts children in a wildly different sphere of life than the average child from the moment they are born. Healthy children do not have to regularly see a doctor, maintain a strict treatment regimen, or worry about playing and growing the way that a child with cystic fibrosis does. With these differences come all of the inevitable difficulties of growing up markedly different from your peers.

Unfortunately, it is common for children with cystic fibrosis to find themselves susceptible to bullying. Feeling different from kids of the same age can create feelings of frustration and isolation, which can in turn lead to behavioral and emotional challenges. Children with cystic fibrosis typically mature at a slower pace, have a unique diet, and grow to be smaller, thinner, and sicklier than their peers. Unfortunately, and especially in a school environment, this does not often translate into easy socialization.

Childhood and growing up is hard enough without adding onto it the pressures of staying on top of an intensive treatment regimen and managing a currently incurable disease. Constant social pressures, including body image stereotyping, may make children with cystic fibrosis feel chronically inferior and embarrassed. Additionally, children with cystic fibrosis are more prone to anxiety and depression as they must wrestle with feelings of helplessness and come to terms with the reality that their illness will afflict them for all of their lifetime.

The burden of treatment for those suffering from cystic fibrosis also makes childhood, particularly education, a difficult time of life. The risk of lung infection is always high, and the consequences of infection are always severe. For this reason, patients with cystic fibrosis must avoid all contagious illnesses, even the common cold, when something breaks out in a school setting. This can make school a difficult undertaking for students with cystic fibrosis, on top of all of the medical difficulties that they must already face.

Overall, children face an incredible pressure to establish themselves in the world. They must find a way to live as healthily as possible under severely adverse circumstances. Although many will feel the temptation to skip or abandon treatments in an attempt to live a more normal life, this can lead to consequences as severe as permanent damage to their bodies and quality of life. It is important as children age that they learn to cope with their disease from a mental and emotional standpoint, even as they learn to cope with it medically and physically.

Read on to learn about the emotional roller coaster of cystic fibrosis in adults.