Exploring the Illness Experience of Fibromyalgia Patients Using Identity Boxes

Authors: Nicole Brown

Abstract:

This study considers the illness experience of fibromyalgia patients by using identity boxes. The results improve health care professionals' understanding of patient experiences. Additionally, the concept of the identity boxes may offer a practical solution for helping patients accept the diagnosis of fibromyalgia. Fibromyalgia research traditionally refers to pain experiences and relies on questionnaires, surveys, interviews and some narrative analysis. However, due to the variability in symptoms, symptom levels, and locations, these methods may not be best suited to provide an insight into the patient experience. On the other hand, lengthy interview processes are not easily accessible for sufferers of fibromyalgia. In addition to timelines and diary extracts, this study uses identity boxes as its main data collection method. Participants are asked to find items in response to specific questions and to arrange them in their box. The objects represent the patients' experiences holistically. Participants provide photographs of their identity box at each stage of the process and explain their chosen items. The photographs of the identity boxes and the patients' explanations of their objects and their boxes are subjected to interpretative phenomenological analysis. Despite the unique forms of the completed boxes, common experiences are described: the need for comfort, the role of spirituality and the impact of fibromyalgia on everyday life, that it plays a significant role but those patients are determined not to let it rule their lives. The work with the identity boxes has shown beneficial impact due to the reflective nature involved in the tasks. Further investigations will be needed to identify the long-term impact of identity work using such boxes.

Keywords: biographical disruption, fibromyalgia, illness experience, illness narrative