Introduction Fatigue is frequently reported by people with active (86%) and quiescent (41%) inflammatory bowel disease (IBD).1 It is considered a complex and multifaceted symptom; it affects many aspects of individuals’ lives. To date, limited research has investigated IBD-fatigue;2 little is known about specific areas of life affected by it or how people with IBD manage it.
Methods Descriptive phenomenology with unstructured, in-depth interviews.3 Twenty participants with IBD and reporting fatigue were purposively selected and interviewed face-to-face. Interviews were audio-recorded, transcribed verbatim and analysed using Moustakas’ method. Data were analysed at individual and composite (group) level, and provided a description (texture) and an explanation (structure) of the studied phenomenon.
Results A wide range of terminology, including metaphors and similes, were used to describe fatigue reflecting its complex nature. Fatigue was presented as invisible, unpredictable, with constantly fluctuating daily patterns and severity. This made reporting fatigue difficult and at times lead to participants being challenged about its authenticity. The array of physical, psychological, cognitive and situational factors were perceived to contribute to fatigue, and different methods (e.g. sleep and rest, pacing, energy preservation, exercise, stress reduction, asking for help) were attempted by participants to manage fatigue. Most methods were not used systematically, possibly resulting in their apparently limited effectiveness. Impact of fatigue was perceived as negative, with participants constantly comparing their life and themselves as they were before fatigue and how much they have lost. They felt that fatigue is in control of their life and each day they had to fight another battle to defeat fatigue. Participants felt imprisoned in their fatigued unreliable body leaving them frustrated, isolated and lacking self-confidence. They reported loss of self and self-identity, resisting to accept the ‘new fatigued me’.
Conclusion Fatigue is a major and debilitating symptom for individuals diagnosed with IBD, reducing their quality of life. The complex, invisible and fluctuating nature of fatigue makes difficult for patients to describe it to others. Patients need to be informed that fatigue is part of IBD and they should be encouragement to report and to seek help from health professionals.
References 1 Czuber-Dochan W, Ream E, Norton C. Review article: description and management of fatigue in inflammatory bowel disease. APT 2013;37:505–16.
2 Czuber-Dochan W, Dibley L, Terry H, Ream E, Norton C. The experience of fatigue in people with inflammatory bowel disease: an exploratory study. JAN 2013;69:1987–99.
3 Van Manen M. Researching lived experience. 1997. The Althouse Press, London.
Disclosure of Interest None Declared