Background: Eating disorders are psychiatric conditions involving not just weight, body, and shape concerns but also self-esteem, emotional, interpersonal, and cognitive difficulties. Understanding the deeper meaning of living with an eating disorder is significant from a theoretical standpoint and crucial for identifying factors that maintain or inhibit these disorders. Patient-centred studies offer valuable insights into the lived experience of eating disorders, highlighting their impact and interaction with various life phenomena. This qualitative study aimed to capture the meaning and experience of living with an eating disorder from a patient perspective.
Methods: 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 were identified. The first dimension, "Having an eating disorder - a relentless relating," described the present experience and was divided into two themes: “The eating disorders impact on relating to myself” and “The eating disorders impact on relating to others”. The second dimension "Relating to the eating disorder over time” followed a timeline with four themes; “The eating disorder as a way to handle other difficulties”, “From control to consistent loss of control”, “The whole existence is impinged” and “Hard to see a life without the eating disorder”.
Conclusions: Living with an eating disorder involves a constant, disorganized relationship to the eating disorder that creates alienation from significant others and one's own body, making it challenging to relate to oneself and the world without eating disordered thoughts and behaviours. Over time, the eating disorder becomes increasingly ego-syntonic, making it hard to envision life without it. Therefore, treatment should highlight interventions to help individuals view the disorder as distinct from themselves, in reconnecting with their bodies, and acknowledging their needs and wishes. Given that eating disorders often become the central focus of life, treatment should also aim to foster new life goals, social engagement, improve interpersonal skills, and develop a meaningful life beyond the eating disorder.