To Örebro University

Background: Eating disorders are psychiatric conditions that extend beyond concerns with weight, body and shape, encompassing complex issues related to self-esteem, emotion regulation and interpersonal functioning. Moreover, co-occurring depression, often undiagnosed, is a common complicating factor. Gaining an in-depth understanding of living with an eating disorder is vital both theoretically and for identifying factors that maintain or inhibit recovery. Patient-centred studies offer valuable insights into the lived experience of eating disorders, highlighting their impact and interaction with various life phenomena.

Methods: This qualitative study aimed to capture the meaning and experience of living with an eating disorder from a patient perspective. Semi-structured interviews were conducted with 15 women suffering from eating disorders and comorbid depressive symptoms, prior to the start of treatment. Data were analysed using reflexive thematic analysis.

Results: Two dimensions of relating to the eating disorder emerged. The first dimension, "Relating to the eating disorder over time", followed a temporal trajectory with four themes: "The eating disorder as a way to handle other difficulties", "From control to a consistent loss of control", "The whole existence revolves around the eating disorder" and "Hard to see a life without the eating disorder". The second dimension, "Having an eating disorder- a relentless relating", focused on the present experience and was divided into two themes: "The eating disorder's impact on relating to myself" and "The eating disorder's impact on relating to others".

Conclusions: Living with an eating disorder involves a constant, entangled and conflicted relationship with the disorder, leading to alienation from significant others and one's own body. This pervasive presence of disordered thoughts and behaviours makes it challenging to relate to oneself and the external world without their influence. Over time, the disorder becomes increasingly ego-syntonic, rendering it difficult to envisage a life without it. Treatment should, therefore, aim to externalise the disorder-to foster new life goals, enhance social engagement, and improve interpersonal skills. Further research is needed to elucidate how co-occurring depressive symptomatology influences an individual's relationship with their eating disorder, as these factors may be crucial in tailoring effective interventions.

Plain English Summary: To capture the meaning and experience of living with an eating disorder from the patient's perspective, 15 women with eating disorders and depressive symptoms were interviewed before treatment. Reflexive thematic analysis was used to analyse the data. Two main dimensions of relating to the eating disorder were identified. The first dimension, "Having an eating disorder - a relentless relating," described the present experience and included themes about how the disorder affects their relationships with themselves and others. The second dimension, "Relating to the eating disorder over time," followed a timeline with themes showing how the disorder evolved from a coping strategy to a pervasive force affecting their entire existence. Living with an eating disorder means constantly experiencing a chaotic relationship with the disorder that distances individuals from others and their own bodies, making it challenging to imagine life without the disorder. Treatment should help individuals see the disorder as separate from themselves, reconnect with their bodies, and acknowledge their needs. It should also foster new life goals, social engagement, and improved interpersonal skills for a meaningful life beyond the eating disorder. Further research is needed to understand how depressive symptoms influence the experience of living with an eating disorder and the recovery process, as these factors may be crucial in tailoring effective interventions.