“Being kept alive—but not being supported to live”: experiences of general psychiatric inpatient care among persons with anorexia nervosa

Although anorexia nervosa has been the focus of numerous studies, most research has been conducted within specialized eating disorder services, where the primary emphasis is on food, weight and physical markers of illness. The condition is described as difficult to treat, with persons with anorexia nervosa portrayed as being dominated by the illness and hard to engage in care. Treatment approaches are often rigid and protocol-driven, particularly in inpatient settings, where the primary aim is to preserve life. Given the limited research on psychiatric inpatient care for anorexia nervosa in settings not specialized in eating disorder treatment this qualitative study aims to explore lived experiences of being treated for anorexia nervosa in the context of general psychiatric inpatient care. The study was conducted in Sweden between August and September 2023. Eighteen women participated. Seventeen submitted written narrative texts reflecting on their experiences, nine of whom also took part in individual interviews. Only one participant agreed to being interviewed only. Data were analysed using inductive qualitative content analysis, involving a systematic abstraction and interpretation of the textual content. Findings revealed one main theme, Being kept alive—but not being supported to live; three themes, Being invisible as a person; Being chained by hopelessness; and Aiming to get on the road towards recovery; and eight subthemes, Lacking existential support; Having to stand up for myself; Being disconnected from real life; Being restricted; Being marked for life; Needing human connection; Finding ways to live; and Finding meaning and hope. The findings show that persons with anorexia nervosa may experience general psychiatric inpatient care as both life-saving and unsupportive. This calls for trauma-informed, recovery-oriented care that treats lived experience as essential expertise. Future work should focus on strategies to challenge entrenched assumptions in general psychiatric inpatient care and promote approaches that respect the complexity, autonomy, and meaning making of persons living with AN. Anorexia nervosa is an illness that can affect a person socially, physically, and mentally. Because of the severity of the illness a person with anorexia nervosa may need inpatient psychiatric care, either in a specialized eating disorder unit or in a general psychiatric ward. Research has focused on specialized care, but persons with anorexia nervosa, especially those with other conditions such as autism, depression or self-harm are often treated in general psychiatric inpatient wards. We interviewed people with experience of such care. They said general psychiatric inpatient care could save lives, but it often failed to address underlying problems or provide hope. Many felt unseen, unheard and left to manage psychosocial aspects of the illness on their own.