Enduring anorexia: A multi-storied counter document of living and coping with anorexia over time Kristina Lainson ORCID: 0000-0002-5208-810X Submitted in total fulfilment of the requirements of the degree Doctor of Philosophy March 2020 Department of Social Work, Melbourne School of Health Sciences Faculty of Medicine, Dentistry and Health Sciences University of Melbourne 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 2 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. 3 Declaration I certify that: 1. this thesis comprises of my original work towards the Doctor of Philosophy; 2. due acknowledgement has been made to all other materials used; and 3. the thesis is fewer than 100,000 words in length exclusive of tables, bibliography and appendices. Kristina Janet Lainson 4 This thesis is dedicated to the participants who so generously and insightfully and often courageously shared their experiences, stories and knowledge. They have made this project and everything that may come from it possible. 5 Acknowledgements I would like to acknowledge with sincere gratitude my supervisors Professor Lynette Joubert, Dr David Denborough and Dr Winsome Roberts. I have valued your engagement with my research tremendously. Your readiness to step into different roles at various stages has afforded me the immense benefit of your collective knowledge, wisdom, experience and creativity. I have been encouraged by your ongoing enthusiasm for this project, touched by your recognition of its commitments, and have greatly enjoyed your companionship in the endeavour. Thank you to Dr David Rose for your helpful guidance as Chair, and Associate Professor Bridget Hamilton for your early participation on my committee. Many thanks are due to narrative practitioner friend-colleagues Aileen Cheshire, Dr Sarah Penwarden and Lisa Spriggens for thoughtful and generative feedback on the online survey design. I am also appreciative of organisations, individuals, agencies, colleagues and friends who circulated and promoted the survey on their social and other media pages and blog sites. These significant contributions to accessibility enhanced the success of the project. I am fortunate to have had wonderful PhD buddies Sarah Strauven, Kelsi Semeschuk, Lauren Kosta, Jacynta Krakouer and Lisa Spriggens, with whom to share the journey, dilemmas, celebrations … and the ‘learning labradors’. Such rigorous conversations, so much laughter! Thanks also to my boys, Jamie and Will Lainson. Jamie for designing and creating the promotional image that escalated the survey circulation, and Will for being an ever-patient and available IT help guru. Thank you both for being genuinely excited for me when I headed off to an overseas university, and for being wonderful supporters and encouragers all along the way. Not least, my heartfelt thanks and deepest gratitude to Tim Lainson, my partner, for being with me in this always; for believing in the importance of this project and my ability to complete it; for so willingly allowing this PhD to entirely disrupt your life; for being embarrassingly proud of me … and for skillfully proofreading the complete thesis. Finally, I gratefully acknowledge the generous scholarship from the Australian Government Research Training Program that funded this doctoral research, and The University of Melbourne and Dulwich Centre for co-creating the opportunity. 6 TABLE OF CONTENTS Abstract ..................................................................................................................................................... 2 Declaration ................................................................................................................................................ 4 Acknowledgements .................................................................................................................................... 5 TABLE OF CONTENTS .................................................................................................................................. 7 List of figures and boxes ........................................................................................................................... 11 CHAPTER 1. INTRODUCTION ..................................................................................................................... 12 1.1 Identifying beginnings ........................................................................................................................ 12 1.2 Becoming an insider-practitioner-researcher ....................................................................................... 12 1.3 Locating the project as a hopeful response .......................................................................................... 13 Concerns about limited and limiting attention ................................................................................................ 14 Beliefs and hopes that lead to seeing the alternatives .................................................................................... 14 Possibilities for narrative practice in research ................................................................................................. 15 1.4 Outline of thesis structure .................................................................................................................. 16 CHAPTER 2. LITERATURE REVIEW .............................................................................................................. 18 2.1 Outline of literature review structure .................................................................................................. 18 2.2 An insider-researcher reflection on the literature review process ......................................................... 18 A personal history of engaging with academic literature on anorexia ............................................................ 19 Putting myself ‘back in there’ and coming up with strategies ........................................................................