"Ordinary days would be extraordinary": The lived experiences of severe and enduring anorexia nervosa

Abstract

Objective: Approximately 25% of individuals with anorexia nervosa (AN) experience a chronic form of the disorder, referred to as severe and enduring anorexia nervosa (SE-AN). Although the classification of SE-AN remains preliminary, there have been increasing calls for a harm reduction-based, collaborative treatment model for these patients. To provide such care for patients with SE-AN, it is critical to listen to and learn from their lived experiences.

Method: Patients (N = 17) admitted to an inpatient eating disorders program who met initial criteria for SE-AN completed semi-structured interviews about the course of their illness and prior treatment episodes. Interviews were audio recorded and transcribed. Data were analyzed using an inductive, reflexive approach to thematic analysis that examined common themes within and across interviews.

Results: Three themes were identified focused on (1) the all-encompassing nature of SE-AN, (2) treatment experiences, and (3) living with chronic illness. Within these themes, there were subthemes. Overall, individuals noted clear insight about their condition, both negative and positive experiences with previous treatment, and hope for better quality of life despite their illness.

Discussion: Individuals with SE-AN describe their illness as a chronic condition and hope for a harm reduction-based treatment. Future work, including the lived experiences of individuals with SE-AN, is important to build our understanding of the classification and clinical characteristics of SE-AN and to develop treatment approaches that may best serve these individuals.

Public significance: Many people with anorexia nervosa do not achieve a full recovery despite repeated treatment episodes throughout their lifespan. Understanding the lived experiences of individuals with SE-AN may help to inform future treatment development efforts that could improve eating disorder and quality of life outcomes for these patients.

Keywords: anorexia nervosa; chronic illness; qualitative; quality of life.