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Thematic synthesis

Identity, control and ambivalence

AN can be experienced simultaneously as organizing identity/control and as narrowing life, relationships and agency. This helps explain ambivalence without reducing it to refusal or ignorance (Espíndola 2009, PMID 19225241; O’Connell 2023, PMID 34041954).

Recognition is filtered through body size

People with atypical AN describe the label and weight-based service thresholds as invalidating. Clinical comparative evidence separately shows comparable or higher eating-disorder psychopathology and many shared physiological complications (Harrop 2023, PMID 36577133; Verma 2024, PMID 37897094; Walsh 2023, PMID 36508318).

Stigma shapes disclosure

Public beliefs may frame AN as vanity, choice or a disorder only of thin young white women. Stigma and limited knowledge can delay help-seeking and exclude people who do not match the stereotype (Varnado-Sullivan 2020, PMID 30784020; Puhl 2015, PMID 25652251).

Families need support without blame

Family-based treatment assigns caregivers an active recovery role, while public carer organizations describe isolation, fear and navigation burden. These sources support skills and peer support, not the historical claim that families cause AN (Fisher 2019, PMID 31041816; F.E.A.S.T., accessed 2026-09-02; EDFA, accessed 2026-09-02).

Coercion and end-of-life language divide lived experience

Both published lived-experience letters on “terminal anorexia” argue against the label as harmful, objecting to each proposed criterion (Asaria 2023, PMID 37400874; Asaria 2023, PMID 38082348). An earlier version of this file implied that lived-experience scholarship supplied the argument in favour; corrected in the 2026-09-02 audit. Where plurality does show is in a stakeholder study of people with lived experience, caregivers and clinicians: most were critical of the proposed criteria — the age threshold most strongly — while the criterion requiring capacitous determination of futility drew the most agreement, and a subset supported elements of the framework around autonomy and relief of suffering (Robb 2026, PMID 42410953). Clinical and collaborative work warns that prognosis and capacity are too uncertain for a terminal category, and the proposal's lead author disavowed the term in 2025 (Crow 2023, PMID 37057340; Bauschka 2025, PMID 40760030; Gaudiani 2025, PMID 40361218). There is no single “patient position”, but on these criteria the published lived-experience writing leans clearly against.

Outcomes patients may value beyond BMI

Themes include freedom from intrusive rules, relationships, education/work, bodily trust, identity beyond illness, autonomy and avoidance of traumatic care. Quality-of-life meta-analysis supports measuring function beyond symptoms but does not define one universal recovery narrative (Winkler 2014, PMID 24857566).