"When you are living and dying at the same time" - a qualitative exploration of living with gastrointestinal motility disorders.

AIM: An expanding base of evidence indicates that chronic gastrointestinal disorders impact not only physical wellbeing, but also affect many psychosocial aspects of life. However, less is known about gastrointestinal motility disorders. The aim of this study was to explore how individuals experience gastrointestinal motility disorders and its impact on daily living.

METHODS: 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 impact of dysmotility on enjoyment of food, socialising, eating out, and quality of life. Interviews were tape-recorded, transcribed and analysed using an inductive thematic analysis approach.

RESULTS: 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 quality of life due to physical and social limitations, impairing their ability to have normal life experiences including education, work, and social activities.

CONCLUSION: Dysmotility is a complex illness that impacts nearly 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 quality of life. This article is protected by copyright. All rights reserved.