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This thesis has been submitted in fulfilment of the requirements for a postgraduate degree (e.g. PhD, MPhil, DClinPsychol) at the University of Edinburgh. Please note the following terms and conditions of use: This work is protected by copyright and other intellectual property rights, which are retained by the thesis author, unless otherwise stated. A copy can be downloaded for personal non-commercial research or study, without prior permission or charge. This thesis cannot be reproduced or quoted extensively from without first obtaining permission in writing from the author. The content must not be changed in any way or sold commercially in any format or medium without the formal permission of the author. When referring to this work, full bibliographic details including the author, title, awarding institution and date of the thesis must be given. Biosocial Journeys: Care and Community in Experiences of Body-Focused Repetitive Behaviours ~ Bridget Bradley PhD Social Anthropology The University of Edinburgh 2019 2 Declaration ~ I declare that, except where otherwise indicated, this thesis is entirely my own work, and that no part of it has been submitted for any other degree or professional qualification. Bridget Bradley June 2019 3 4 For Matt, with love 5 6 Abstract ~ This thesis follows the emergence of a biosocial community and shows the importance of social relations for British and American people living with body-focused repetitive behaviours (BFRBs). It is based on sixteen months of ethnographic fieldwork in multiple sites across the UK and the US. I describe the experiences of women, men, and young people living with hair pulling (trichotillomania) and skin picking (dermatillomania), as well as their loved ones, health professionals, researchers and hairdressers working in the field of BFRBs. I present an in-depth view of what it is like to live with BFRBs, and the stigma and risk involved in the process of concealing and revealing to others. Exploring the complexities of how BFRBs are embodied, I show the shame and confusion that people feel towards their own bodies, triggering negative perceptions of the self. The suffering caused by BFRBs is reflected in families, with parents sharing feelings of loss, grief and frustration with their BFRB children. I expand on kinship theories to unpack these experiences through the concept of intersubjectivity, illustrating how parents are both connected and separated by their shared experiences with children. From these domestic challenges stem care practices that blur the boundaries between love and harm. Within the wider contexts of care, health professionals are described as unsupportive and uninformed, and people rarely receive effective support from the medical sphere. But despite the disappointments in medical care, diagnosis still has a value, and the journey that people living with BFRBs go through towards biosociality is dependent on the medical label. People therefore transition from isolated shame to connecting with others who share their embodied experience, forming relationships that are comparable to kinship ties. I argue that the process of finding and forming the biosocial BFRB community, allows people to overcome long-term feelings of shame, and leads to alternative notions of recovery. But biosociality is complex; it involves conflict, issues of inclusion, and ongoing work in order to be sustained. Due to the limits of biosociality, some people in the BFRB community are inspired towards biosolidarity; where BFRB experiences are turned into acts of advocacy that raise awareness and make these disorders visible 7 in new ways. This thesis involves combined ethnographic and auto-ethnographic perspectives, and hopes to bring BFRB experiences to the attention of scholars, professionals and lay people living and working with mental disorders. 8 Lay Summary ~ This research shows the importance of social relationships for British and American people living with body-focused repetitive behaviours. It is based on sixteen months of in-depth fieldwork in multiple sites across the United Kingdom and the United States. It includes the experiences of women, men, and young people living with hair pulling (trichotillomania) and skin picking (dermatillomania), as well as their loved ones, health professionals, researchers and hairdressers working in the field of BFRBs. I explore the moment that people living with hair pulling and skin picking “find out the name” for their behaviour, and how this often leads them to find one another online or in-person. I show how this moment can lead to new ways of seeing BFRBs, for those who come together in support groups and conferences, but also for the public through the media. By mapping this process of coming together, I argue that the strong connections felt between sufferers have the ability to overcome long-term feelings of stigma and shame associated with BFRBs, and can bring people closer to recovery and self-acceptance. I also show how families struggle to deal with the effects of BFRBs in their children, highlighting the strain on parents and loved ones to fully understand the way BFRBs feel. From this, I expand our understanding of how families cope with the effects of a complex mental disorder. By examining other forms of care, I show how health professionals are frequently described as unsupportive and uninformed, and how people struggle to find effective support for BFRBs. Alongside my research participants, I also present my own personal perspective on living with trichotillomania, which has influenced my ongoing advocacy work within this community. Through this thesis, I hope to bring BFRB experiences to the attention of scholars, professionals and lay people living and working with mental disorders. 9 10 Acknowledgements ~ Without question, it has taken an entire community of people to bring this thesis into being. All of the people who have inspired, encouraged and pushed me towards my academic goals over the years, are too numerous to thank individually. But I am indebted to all of you for helping to shape who I am and making the steps towards this thesis possible – this journey has truly been life-changing. I would like to express my heartfelt gratitude to all of the people who participated in this research. Your openness and trust, and the kindness from your families, is the lifeblood of this thesis. Special thanks to Dhaya, Jude and Liz, for your unquestionable love and encouragement throughout this journey. Enormous thanks goes to my TLC family; Christina, Jennifer, Leslie, Kelly, Jude, Marta, Lauren, Liz, Dhaya, Jillian, Aneela, Jack, Zara, Dale, Frankie, Mandy, and the Maxwells; Tiffany, Penny, and Mark. I am privileged to be considered part of this family, and forever grateful for all you have taught me. Thank you to TLC’s Scientific Advisory Board including; Fred Penzel, Joe Garner, Jon Grant, Nancy Keuthen, Ruth Golomb, Susanne Mouton-Odum and Carol Novak; for your ongoing encouragement and fruitful conversations. Thank you for awarding me with the conference travel grant, allowing me to present my findings in 2018. Further thanks to Charley Mansueto, for the warmest welcome into the BFRB community of researchers, and for agreeing for me to conduct fieldwork at the Behaviour Therapy Center. Additional thanks to all the staff at BTC, and the clients and parents who took part in interviews, including Megan and her mother, Camila. Thank you to Beverley, for inviting me into the intimate space of your salons, and for sharing with me your wisdom and wonder. Also thanks to Beverley’s team for their support and insight during my visit. Special thanks to the Edinburgh salon manager, for treating me to a complimentary wash and style after the birth of my son. To my American parents; Dawn and Al, thank you for making me feel at home in Arlington, and sharing special moments of discovery with me during fieldwork. Thanks to all of the other people who gave me a bed across my many fieldsites; Susie and Ngaio, Laura and Kenny, Heather and Rory, Dhaya and David. I am grateful to all 11 of the people who have attended the BFRB support groups in Edinburgh and London; for your friendship, for helping me to make sense of this community, and for listening to my worries along the way. Thank you Dhaya, for making these groups happen and for being a wonderful fellow advocate. I have been fortunate to share this PhD journey with an awe-inspiring group of people. Thanks to all of you for taking this roller-coaster ride with me: Alysa Ghose, Elliott Oakley, Mairi O’Gorman, Adam Marshall, Guy Paikowsky, Roslyn Malcolm, Hannah McInnes-Dean, Mike Crawley, Alice Nagle and Becky Crowther. Special thanks to Elliott for your close proof-reading and dear friendship, and Alysa Ghose, for being there to share all of the highs and lows; from the first days of fieldwork to the final day of submission. Thanks to the Students of Medical Anthropology (SoMA) group for all of the events, book clubs, writing up sessions, and free lunches. Especially Imogen Bevan, Rebekah Thompson, Ritti Sonocco, Pia Noel, Abby King, Sandalia Genus and of course, my work wife, Lilian Kennedy; without your friendship and efficiency I literally would not have been able to finish writing. Huge thanks goes to my supervisors, who have helped this project to grow and flourish over the years. Thank you Stefan Ecks; for your early excitement and encouragement for this research and for believing in my ability to do it justice. Thanks to Alex Edmonds; for your insight and guidance. Thank you Koreen Reece; for joining my supervision team at the perfect moment and for strengthening both my argument and my confidence. To all the staff in the Social Anthropology department at the University of Edinburgh for creating the ideal environment for doing this PhD. Special thanks to Lucy Lowe, Ian Harper and Casey High.

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