Cystic fibrosis (CF) is an inherited and chronic disease related to a defect in the cystic fibrosis transmembrane conductance regulator (CFTR) gene. Patients produce an abnormally high amount of sticky and thick mucus that accumulates around the organs, including the lungs, making it difficult for patients to properly breathe and more likely to develop infections.
Symptoms are different in each patient, but tend to include persistent coughing, wheezing, breathlessness, exercise intolerance, repeated lung infections, inflamed nasal passages or a stuffy nose, foul-smelling and greasy stools, poor weight gain and growth, intestinal blockage, and severe constipation.
However, in addition to the physical symptoms, patients, family, friends and caregivers face an emotional burden associated with the disease. As a progressive disease, cystic fibrosis can involve a stressful routine of symptoms and treatments. The CF community may face numerous psychological and social problems due to the demands of the disease, which need to be addressed with as much importance as its physical burden.
Emotional Wellness of Children or Adolescent CF Patients
The lives of children diagnosed with cystic fibrosis can be very different from those of healthy children, with great demands regarding feeding, treatments, and regular procedures like blood tests and cough swabs. Behavioral challenges are often accompanied by feeling different than kids their own age.
“However, feelings of being different are understandable, perhaps inevitable, especially in the school environment. As well as having a different diet and an awkward treatment regime, children with cystic fibrosis are often smaller and thinner than their peers, which can give rise to bullying,” explains the Cystic Fibrosis Trust.
The impact of body image stereotypes may be a problem for patients growing up with the disease. Puberty and the onset of menstruation may be delayed a year or two. As patients grow into teenagers, a feeling of frustration may arise from the responsibility of taking care of their treatments. Patients may need to skip school at certain times given the higher incidence of infections and disease, and it is also common for pediatric patients to feel anxiety, insecurity, or depression due to the lack of control of certain aspects of their lives. In addition, it is important that caregivers pay special attention to patients who might neglect their treatments as a way of not feeling so different.
Emotional Wellness of Adult Patients with Cystic Fibrosis
“Increasing numbers of cystic fibrosis (CF) patients are surviving into adulthood. An understanding of the psychiatric and psychosocial aspects of CF in adults and adolescents is therefore more important than ever,” write the authors of the study, “The psychosocial and psychiatric side of cystic fibrosis in adolescents and adults.”
“There is a large body of evidence indicating that the psychological and psychosocial functioning of people with CF is similar to that of well people, until the disease becomes severe. However, there is also evidence that patients do suffer an increased likelihood of psychiatric problems, such as depression, and of scoring poorly on physical functioning measures of quality of life,” the authors write.
As patients become adults or in the cases when the disease is only diagnosed as adults, it is demanding to balance a normal adult life with managing a chronic disease. There are symptoms, treatments, work, family, emotions, and social experiences to cope with. Sometimes, patients may face barriers or challenges that may lead to anxiety or depression.
According to the Cystic Fibrosis Foundation, anxiety is one of the most common emotional issues faced by these patients. This is related to daily treatments, remembering to take medications, missing out on things they want to do, and being hospitalized for periods of time. In addition, it is known that CF patients and caregivers are more likely to suffer depression — a state of sadness that can last for weeks, months, or years, accompanied by feelings of hopelessness and a lack of interest in everyday things.
CF Patients’ Loved Ones Emotional Wellness
Not only patients, but family, friends, and caregivers experience the emotional impact of cystic fibrosis. The signs of emotional problems among loved ones of CF patients include physical problems like headaches, stomach problems and back pain; along with sleeplessness, feelings of frustration, sadness, depression, anxiety, guilt, anger, loneliness, resentment, decreased enjoyment of pleasurable activities, social isolation and blaming, mental issues like forgetfulness, mental exhaustion, more frequent accidents, trouble deciding, poor attention and memory, and confusion, as well as spiritual issues like feelings of alienation and hopelessness.
The first step to cope with these problems and seek emotional wellness is to recognize the signs. Patients and their loved ones are not alone in the fight against cystic fibrosis, and the emotional problems they are experiencing may be shared by other people.
Patients and loved ones can seek psychological help with specialists or with support groups, which are common not only in associations and organizations like the Cystic Fibrosis Foundation, but also among specialized medical centers. Caregivers, particularly those who care for children and teens, are also advised to discuss their feelings with the medical team responsible for the healthcare of the patient.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.