Life expectancy in cystic fibrosis (CF) has greatly improved, but as people live longer, they experience increasing symptoms. Literature indicates pain in CF is common and underreported, affecting quality of life, mental health and adherence to treatment. Pain is best explored in the context of the whole person, yet previous studies are almost exclusively quantitative.
The aim of this research was to gain understanding of the experience of pain, within the context of the whole person with CF. Within a social constructivist framework, narrative methodology focused on the complex and unique experiences of individuals. Data were gathered through interviews with nine individuals and analysed using a method of narrative analysis to present findings in stanzas, a poetic form that preserves the narrator’s voice. Findings were interpreted through the lens of total pain theory.
Three key narratives contributed to understanding pain: emerging awareness, social legitimacy and invisibility. Emerging awareness was the gradually increasing understanding of what it means to have CF. Social legitimacy was critical in the experience of total pain, appearing as participants struggled to conform to societal expectations. Total pain was ever-present in these stories, and when participants were isolated or marginalised and lost social legitimacy, they felt invisible.
Total pain and suffering in CF are best understood as a singular experience happening to a whole person, encapsulating their very being. This deeper understanding highlights an opportunity to explore pain in the context of the whole person, to inform clinical practice and future research.