Enduring anorexia: A multi-storied counter document of living and coping with anorexia over time

Abstract

It has been well-documented that anorexia (nervosa) often endures in people’s lives, yet very limited research attention has been given to the perspectives of adults who have lived with its influence and effects over time. What studies do exist have engaged participation through specialist services, potentially skewing representation, and participants’ experiences, knowledge and capabilities have tended to either go unrecorded or else are dominated by bleak narratives and/or deficit-based portrayals written from clinical perspectives. The Enduring anorexia project addresses these issues by inviting more inclusive participation via social media and by employing the theoretical lens of narrative practice. This hopeful lens centres lived experience perspectives, acknowledges personal agency and seeks entry points into alternative storylines of preferred identity that can lead to new possibilities and understandings.

Since social workers Michael White and David Epston first co-created narrative practice as a respectful and non-blaming approach to counselling and community work that recognises people as separate to problems and intentional in responding to difficulties, the field has been characterised by innovation and diverse application. The Enduring anorexia project extends this application, innovation and practice stance into conducting academic research in the realms of longer-term experience of living and coping with anorexia, demonstrating what opportunities arise as a consequence.

A two-step format of online survey and optional interview gathered stories of experience, response, and ideas about ways forward from 96 participants across 13 countries. Their generous and insightful contributions were thematically analysed congruently with narrative practice’s theoretical bases of poststructuralist, feminist and critical thought. This reflexive process generated 12 themes describing complex and multi-storied experiences of living with anorexia over time. Some themes highlighted the capacity for anorexia’s ongoing influence to create profound and extensive difficulties in people’s lives; accumulating consequences for physical, psychological and social wellbeing were compounded by multiple psychiatric and societal discourses that created obstacles and confounded attempts at seeking support or creating change. Other themes illuminated the meaningful ways participants engaged with their circumstances to purposively manage both their lives and anorexia’s influence in it in order to overcome barriers, to reclaim all or part of their lives, and to live meaningfully and consistently with their values, beliefs and hopes.

In a realm where there is considerable professional uncertainty about how best to proceed or help, the Enduring anorexia project points to a need for

- professional attitudes that view people as separate from problems and privilege ‘insider’ over ‘expert’ perspectives;

- therapeutic approaches that attend to the politics of experience, and double-listen for skills, knowledges and entry points into alternative storylines;

- support services that are available, accessible and intentionally inclusive;

- research lenses and directions that focus on response, inclusion, opening space for possibility, and reporting respectfully;

- a re-conceptualisation of what has been considered a problem of the individual, to invite wider societal responses.

Throughout, narrative practice is shown to be an effective lens/tool for conducting inclusive, non-blaming, hopeful and generative research.

The Enduring anorexia project incorporates reflections on academic research processes, written from the perspective of an insider-practitioner-researcher.