Anorexia nervosa through the lens of a severe and enduring experience : 'lost in a big world'

Background: Severe and enduring anorexia nervosa (SE-AN), is a serious and persistent illness, despite 'state of the art' treatment. Criteria have been theoretically proposed, but not tested, and may not adequately capture illness complexity, which potentially inhibits treatment refinements. The clinical reality of death as an outcome for some people who experience SE-AN (1 in 20) and broadening access to voluntary assisted dying, further complicates the field, which is undeveloped regarding more fundamental concepts such as nosology, treatment, recovery definitions and alternative conceptualisations of SE-AN. The present paper is in response to this and aims to build upon qualitative literature to enhance phenomenological understandings of fatal SE-AN. Method: A published book, being the legacy of a 32-year-old professional artist offers a rich account of a life lived with AN, for 18 years with continuous treatment. A polysemous narrative via the interrelationship between the languages of the artist's words and visual art is translated via interpretative phenomenological analysis (IPA), offering rich insight into the SE-AN experience. Findings: The process of analysis induced three superordinate themes (1) Disappearing Self (2) Dialectical Dilemma (3) Death and Dying: Finding Meaning. Two cross cutting themes traversed these themes: (a) Colour and (b) Shifting Hope, where the former produced a visual representation via the 'SE-AN Kaleidoscope'. Collectively the themes produce a concept of SE-AN, grounded in the data and depicted visually through the artist's paintings. Conclusions: The picture of SE-AN revealed in the analysis extends upon conceptualisations of SE-AN, highlighting key processes which are thus far under explored. These factors are implicated in illness persistence eliciting opportunities for further research testing including diagnostic considerations and treatment directions. In SE-AN, distorted body image extends to a global distortion in the perception of self. Additional criteria for the severe and enduring stages of illness related to (1) self and identity processes (2) measures of 'global impoverishment' across life domains are proposed for consideration in the future testing of putative defining features of SE-AN.