Coping with the complexities of life, and especially life with a health condition, requires us to pay attention to our psychological wellbeing. As a person with cystic fibrosis, you will have developed your own coping skills to manage the physical symptoms, treatment burden, psychological and social factors that affect your quality of life. However, at particularly stressful times you may feel that you are nearing the limit of these coping skills. Higher levels of anxiety and depression are common in individuals with chronic health conditions, as well as their caregivers, and cystic fibrosis is no different. Psychological distress can be just as damaging to a person’s quality of life as the physical effects of the illness. In addition, it can actually lead to decreased lung function, lower BMI, worse treatment adherence, and more frequent hospitalisations. Battling against the effects of the condition can take so much of your time and energy that it can get in the way of the things that matter to you. People who are cared for in terms of their medical and psychological wellbeing are more likely to adjust to any challenges arising from their condition, better enabling them to lead a life that is meaningful to them.
Clinical psychologists work across the lifespan, and an individual and their family may need support at different developmental stages; newborn, infancy, toddlerhood, school age and adolescence. Even resilient families will find that there are times that they struggle more than others. Common stressors in cystic fibrosis include:
Clinical psychologists do not just focus on reducing psychological difficulties associated with cystic fibrosis when it arises, but aim to promote wellbeing, resilience and ‘living well’ with illness. All members of the multidisciplinary team can contribute to the psychological wellbeing of people with cystic fibrosis. Sometimes it may feel that a more targeted piece of work with the clinical psychologist in the team is needed. Common pieces of work include helping with:
The clinical psychologist can also give you advice and support with accessing psychological help from other services where necessary.
Clinical psychologists working in health have a range of techniques for supporting people. A meeting can be arranged at a time that suits you; either coinciding with a clinic, or a different time. The focus of these meetings depends on the difficulties you are experiencing; it might be to explore the link between physical and mental health, to think about unhelpful patterns of thoughts, feelings and behaviours, to identify things within your control that might be getting in the way of what you value, to talk about how to reduce tension around doing treatments, or to explore more emotive topics. These sessions are confidential, unless a risk to yourself or others is identified, or you want to share some information with other members of the CF team.
You will meet the clinical psychologist regularly during your routine clinic appointments to help you get to know them and to feel comfortable raising any concerns. They will try to meet with most patients at the annual review or pre-annual review appointment to check on any issues that have arisen in the last 12 months, and to complete some wellbeing screening questionnaires. If you would like to discuss something in between these times, you are welcome to contact the clinical psychologist on 01392 676376, or pass a message through any member of the CF team.
Resources:
CF Trust psychology home page – lots of useful psychology updated links
New 2024 CF Trust psychology document : Information for people with Cystic fibrosis and parents and carer
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