When you are living and dying at the same time: A qualitative exploration of living with gastrointestinal motility disorders.

Abstract

An expanding base of evidence indicates that chronic gastrointestinal disorders not only impact physical wellbeing, but also affect many psychosocial aspects of life. However, less is known about gastrointestinal motility disorders. The present study aimed to explore how individuals experience gastrointestinal motility disorders and their impact on daily living. Eleven people with a gastrointestinal motility disorder participated in semi-structured interviews face-to-face or via telephone. The interviews explored how participants came to be diagnosed, their experiences with health professionals, as well as the impact of dysmotility on enjoyment of food, socialising, eating out and quality of life (QoL). Interviews were tape-recorded, transcribed and analysed using an inductive thematic analysis approach. Analysis revealed an overarching theme of frustration that stemmed from three subthemes: (1) feeling misunderstood, judged and dismissed by health professionals leading to delayed diagnosis, misdiagnosis and multiple diagnoses; (2) severity and unpredictability of undesirable gastrointestinal symptoms; and (3) reduced QoL because of physical and social limitations, impairing their ability to have normal life experiences, including education, work and social activities. Dysmotility is a complex illness that impacts almost all aspects of a person's life. In addition to managing reported physical symptoms, the social and psychological burden associated with dysmotility needs to be addressed to improve outcomes and QoL.