A lifeline or a label? lived experience perspectives on the severe and enduring eating disorder (SEED) classification in eating disorder treatment.

objectiveThe classification of severe and enduring eating disorders (SEED) was introduced to acknowledge the chronic nature of eating disorders (EDs) that persist beyond standard treatment. However, concerns exist regarding its role in reinforcing prognostic pessimism, shaping clinician attitudes, and influencing patient identity and treatment trajectories. This study explores lived experience perspectives on SEED classification, examining how diagnostic language affects treatment access, psychological outcomes, and engagement with care.

methodAn online survey was employed to collect demographic and clinical history data, followed by in-depth online semi-structured interviews with 41 individuals with longstanding eating disorders across a range of diagnoses. Reflexive thematic analysis examined participants’ experiences of SEED.

resultsThree key themes emerged: [1] SEED as a paradoxical classification, with participants describing the term as both validating and restrictive; [2] SEED as a justification for treatment withdrawal, with clinicians and services interpreting the classification as an indicator of treatment futility, contributing to reduced care opportunities and systemic exclusion; and [3] redefining SEED through recovery-oriented frameworks, with participants advocating for alternative terminology, such as “longstanding eating disorder,” and treatment models prioritising harm reduction, step-down care, and sustained engagement. DISCUSSION: These findings suggest that SEED classification is not merely a descriptor but actively shapes treatment options, patient agency, and long-term engagement with care. The inferred association between SEED and “treatment resistance” contributed to exclusion from services and reinforced therapeutic nihilism. Participants suggested the need for person-centred, recovery-oriented language and clinical frameworks that support continued access to care rather than rigid prognostic assumptions. Further research is needed to examine how chronicity-based classifications influence clinician decision-making, resource allocation, and stigma, informing more inclusive and responsive treatment models.