Eating Disorder Recovery in Context by Andrea LaMarre A Thesis presented to The University of ...

357 Pages·2017·2.1 MB·English

by  Andrea Lamarre

Not on My Own: Eating Disorder Recovery in Context

by
Andrea LaMarre

A Thesis
presented to
The University of Guelph

In partial fulfillment of requirements
for the degree of
Doctor of Philosophy
in
Family Relations and Human Development

Guelph, Ontario, Canada
© Andrea LaMarre, June 2018
ABSTRACT
NOT ON MY OWN: EATING DISORDER RECOVERY IN CONTEXT
Andrea LaMarre Advisor:
University of Guelph 2018 Dr. Carla Rice

Eating disorder (ED) recovery is ill-defined in the research and clinical literatures; the
voices of those with lived experience of eating distress are largely absent in recovery
configurations. Recovery model proponents argue for person-centered conceptualizations of
recovery that attend to systemic constraints. However, biomedical perspectives continue to
dominate the way ED recovery is configured. In this dissertation, I take up the question of how
people who have experienced distress around food and body and their supporters understand the
possibilities, processes, and outcomes of “ED recovery” within a contemporary anglo-Canadian
context. I explore barriers and facilitators to recovery, and how systems might better support
people in recovery and supporters as they work together to assemble a sense of greater embodied
ease. I consider how self-representations of recovery are received by healthcare providers. I
conducted a feminist, new materialist thematic analysis of interviews with 20 people in recovery
and 14 supporters (chosen by those in recovery). Five of these participants made digital stories
(short films) about their experiences, which were screened with 22 healthcare providers, who
responded to qualitative pre/post questionnaires about ED recovery.
Participants in recovery explored feeling misunderstood, misrepresented, and mistrusted
as they navigated systemic constraints and dominant cultural norms about relationships with food
and body, as well as those issued for “how to be recovered”. Surveillance featured in
participants’ accounts of both treatment and recovery; more positive experiences of recovery
were found amongst highly attuned supporters. Supporters described living at the intersection of
their loved ones’ distress-inducing relationships with food and body. Healthcare providers
reported feeling underprepared to treat EDs and expressed a desire for more artistic, person-
driven representations of recovery such as the stories they were shown. Participants’ narratives
encapsulate interweavings of time, relationality, and space as they enact and perform their
recoveries in a matrix of instructions about bodily behaviours. Implicating new materialist,
feminist theoretical frameworks complicates a singular, linear, and choice-based logic of
recovery. The multiple versions of recovery articulated by participants reveals the need to engage
with uncertainty to promote recoveries that do not rely on dominant imperatives to be self-
managing subjects.
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Acknowledgments
This dissertation would not exist if it were not for the generosity of my participants, who shared
their experiences with me in person, over the phone, and via Skype, over long distances and in
spite of full lives. I continue to reflect on the privilege that is doing research: it is a rare gift to
get to connect with people and call it “work.” To each and every one of you—and to the would-
be participants for whom this moment was not the right time to tell your story—I am forever
grateful. You do not need me to tell you this, but you are exactly enough, exactly as you are.
I entered into the pursuit of this PhD without a thought for how much support I would
want and need. It has become increasingly clear to me that though I might be the one making the
phone calls, driving the distances, sitting at the desk (or on the couch) analyzing and writing and
thinking, this work has been profoundly collaborative and connected. Thank you to my
wonderful advisor, Dr. Carla Rice, who has supported me throughout the past six years of grad
school with an open spirit and a deep trust. Carla, you are the very definition of a feminist
mentor, and I appreciate everything you have done for me more than I could possibly say. From
holding my tears and anxieties to discussing high theory and configuring research assemblages,
you have made this journey possible. Thank you to my committee members, Dr. Jess Haines and
Dr. Leora Pinhas, for your insights and guidance along this path. Jess, I appreciate your close
reading of my work and thoughtful guidance on how to make this work broadly appealing and
relevant. Leora, you are an inspiration to me in your unwavering support of people with eating
disorders and refusal to stick to the status quo. Thank you to the two external reviewers for my
dissertation, Dr. Gwen Chapman and Dr. Rachel Calogero. I appreciate you taking the time to
read and respond to this work. Thank you to Dr. Clare MacMartin for chairing my defence.
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Many other academic mentors have so generously supported my learning: Dr. Olga
Smoliak, the work we have done together on social justice, neoliberalism, and therapy has
pushed me and challenged me to think about and beyond the discursive. You have helped me to
unpack neoliberal governmentality in the therapy room, and in my own life. Dr. Ingrid Mundel,
thank you for supporting me in all things Re•Vision and community-based research. To my other
Re•Vision colleagues: Tracy Tidgwell, Kimber Sider, Hannah Fowlie, Erin MacIndoe-Sproule,
Michelle Peek, Sara Wilde, Angela Underhill, Farrah Trahan, Kavya Yoganathan—thank you for
our work together on community and artistic practice. Dr. Sarah Riley, thank you for your insight
into body image and embodiment, and for showing me around Aberystwyth! Dr. Jen Rinaldi, we
have not always agreed on interpretations of eating disorders, but I have appreciated our debates
and discussions for how they have probed me to more closely examine my own perspectives—
over vegan dinners in Reykjavik and Dublin, I learned so much about different perspectives on
pathologization. Dr. Ally Gibson, thank you for exploring arts-based method with me and
bridging time changes between Australia and Canada. Dr. May Friedman, you have further
solidified my commitment to relational, collaborative, and embodied work. Dr. Deb McPhail,
you broadened my perspectives beyond eating disorders toward weight stigma and reproductive
care, a turn that enriched my main area of research more than I could have imagined. Dr. Eliza
Chandler, you have taught me about disability studies and disability art, and encouraged me to be
artful in my academics. Dr. Nadine Changfoot, we have bonded over a love of dance,
embodiment, and knowledge mobilization, and I cannot wait to see where these connections take
us. Dr. Patty Douglas, thank you for your generous spirit, and your keen perspectives on
“making space” in arts-based research. Thank you to Elisabeth Harrison, Jill Andrew, Emma
Lind, Crystal Kotow, Lauren Munro, Daniel Goldberg for your collaboration and conversation
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over the years. Thank you to ISCHP for being such a supportive organization full of wonderful
humans doing important works.
My work has been profoundly shaped by engagement with more activists, therapists, and
practitioners in the eating disorders, weight stigma, and Health at Every Size® community than I
could name. To scratch the surface, I am grateful to Carmen Cool and Hilary Kinavey for
unpacking weight stigma in the eating disorders field with me, and for always being game for a
doughnut outing in Vancouver. To Beth McGilley, for holding my hands and my heart while I
sobbed at you in Prague, and for your commitment to always learning and supporting others. To
the rest of the AED’s Recovery SIG for working together on finding a consensus definition of
recovery, and Sander de Vos in particular for inviting me to collaborate on recovery
determinants work. I have learned so much about binge eating disorder from Chevese Turner. I
am indebted to so many others in this work toward more socially just eating disorder work: Deb
Burgard, Sigrun Danielsdottir, Erin Harrop, Lisa Dubreuil, Dana Sturtevant, Kelly Boaz, Kaley
Roosen, Marbella Carlos, Hannah Noel Smith, Kristin Bulzomi, Þorgerður María Halldórsdóttir,
Niva Piran, Jannell Mensinger, Ashley Solomon, Millie Plotkin, Carrie Arnold, Fiona
Sutherland, Melissa Fabello, Joslyn Smith, Rebecka Peebles, Shaleen Jones, Michael Levine, Su
Holmes, Sarah Thompson, June Alexander, Isabel Urrita and so many more. Thank you to Karen
McGratten for co-chairing the Waterloo-Wellington Eating Disorders Coalition for two years
during the time I was doing this PhD work. Tanya, thank you for giving me the space on Science
of Eating Disorders to build a platform around translating (and ranting about) research on eating
disorders. As you know, those 80+ posts have been read many more times than this academic
work will ever be. To NIED and its founders, Wendy Preskow and Lynne Koss, thank you for
everything you do for people with eating disorders and their supporters. To the team at Ontario
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Shores Eating Disorder Unit, thank you for welcoming me into the patient-oriented environment
you built, and especially to Raluca A. Moriaru for office chats and hard work together.
There are those whose support bridges the academic and the personal, including those
named above. Any acknowledgments would be incomplete without thanking Emma Louise
Pudge, my best friend and academic twin (give or take seven years). Thank you, from the bottom
of my heart, for your extremely close read of this and every other thing I have ever written, for
the long Skype calls, and for the convenience of being a night owl who lives in England. Thank
you for your hospitality in Canary Wharf and for our good-food-procuring outings. To my other
British supporters: Dr. Glen Jankowski, thank you for our POWS conference walk-and-talks, for
keeping me from taking myself too seriously, and for your collaboration. Dr. Angela Meadows,
thank you for welcoming me into the Weight Stigma Conference world. Dr. Jess Drakett, Dr.
Dee Lister, Dr. Beth Bell, and everyone in the Psychology of Women and Equalities (POWES)
section of the BPS – thank you for welcoming in a rogue Canadian and for putting on ace discos
in the basement of Cumberland Lodge. To the other academic friends I’ve learned from over the
years: Kate Williams, Megan Racey, Lindsay Day, Tylar Meeks (the knowledge mobilization
crew), Chrissy Scott, and many others. Thank you to my students at Trent Durham and
University of Guelph for teaching me. Thank you to all of those in my Facebook, Twitter, and
Instagram communities for being the most engaged, loving online community imaginable.
To my mom, who has been my number one fan and cheerleader, thank you. Thank you
for the long walks, for the hugs, for the times you said “stop working, we’re going outside.” This
dissertation has made me more aware than ever of the sacrifices you have made for me over the
years. To my dad, thank you for the coffee chats and the willingness to respect qualitative
research and for the many, many Atlantic and New York Times articles you send me “because it
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reminds you of my work.” To my partner in life, Alex—thank you for being the exact person I
never knew I needed. Thank you for your patience on the many evenings when I worked late, for
talking Deleuze with me from our first date, for eating as many of my stress-bake-goods as you
possibly can, and for teaching me that there is more to life than work. To the Reynolds-Hamilton
family, thank you for welcoming me into your warm and loving clan. Through!
To my friends outside of the academic realm, including Emma Van Ryn, Alexa Ward,
Megan Arppe-Robertson, Erin Dittmer, thank you for putting up with my frequent absences.
Thank you to my dance friends over the years, Brianne Davis, Louisa Cassoloto, Shannon
Clutton-Carr (who also healed my body more times than I can count, allowing me to do this
work), Robyn Walsh, Kelsey Searle, and so many more. Thank to Mrs. McLeod for the ballet
classes and for just letting me cry-dance out my feelings. Thank you for the studio time, Miss
Matheson. To my furry friends present and past, Marx, Zoe, Hope, Mango, Luna, Chopper,
Fugee. Thanks, too, to Sabrina for loving many of these creatures and for loving my dad. Thank
you to the folks at Second Cup for fuelling this writing with their delicious coffee. To everyone I
forgot to thank: I love you, too.
Thank you to the Vanier Canada Doctoral Program through the Canadian Institutes of
Health Research and to the Ontario Women’s Health Scholar’s Award through the Ministry of
Health and Longterm Care for the funding to do this work.
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Table of Contents
Abstract .......................................................................................................................................... iv
Not on My Own: Eating Disorder Recovery in Context................................................................ iv
Acknowledgments.......................................................................................................................... iv
Table of Contents ........................................................................................................................... ix
Chapter 1: Introduction ................................................................................................................... 1
1.1 Context and Background....................................................................................................... 6
1.1.1 “Eating Disorder Recovery.” ......................................................................................... 6
1.1.2 Research Questions. ..................................................................................................... 11
1.1.3 Linguistic Specificity. .................................................................................................. 14
1.2 Literature Review................................................................................................................ 23
1.2.1 Eating Disorder Recovery: The Recovery-Etiology Link. .......................................... 23
1.2.2 Perspectives on Recovery. ........................................................................................... 34
1.2.2 Recovery Model. .......................................................................................................... 37
1.2.3 The Family Context. .................................................................................................... 43
1.2.4 Supporters in Context. ................................................................................................. 51
Chapter 2: Methods ....................................................................................................................... 58
2.1 Recruitment and Exclusion Criteria .................................................................................... 59
2.2 Data Collection ................................................................................................................... 60
2.3 Data Analysis ...................................................................................................................... 64
2.3.1 Digital Story Analysis. ................................................................................................. 72
2.4 Theoretical Framework ....................................................................................................... 75
2.5 Reflexivity........................................................................................................................... 83
Chapter 3: Analyses – Interviews ................................................................................................. 92
3.1 Demographic Information ................................................................................................... 92
3.2 Themes ................................................................................................................................ 93
3.2.1 People in Recovery. ..................................................................................................... 93
3.2.2 Supporters. ................................................................................................................. 155
3.2.2.2 Surveillance and Normalcy. .................................................................................... 160
3.2.2.3 Recovery Time, Family Time. ................................................................................ 168
Chapter 4: Analyses – Digital Storytelling ................................................................................. 182
4.1 Workshop Reflections ....................................................................................................... 182
4.2 Digital Story Case Studies ................................................................................................ 187
4.2.1 Meghan. ..................................................................................................................... 187
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4.2.2 Catherine. ................................................................................................................... 190
4.2.3 Amy............................................................................................................................ 193
4.2.4 Gina. ........................................................................................................................... 197
4.2.5 Kay. ............................................................................................................................ 199
4.3 Healthcare Provider Screening ......................................................................................... 201
4.3.1 Understandings of Eating Disorders and Recovery: Nuancing “Cure” ..................... 201
4.3.2 Emotional Impact: Empathy and Powerlessness. ...................................................... 204
4.3.3 Wanting More: The Limits of Diversity. ................................................................... 206
Chapter 5: Discussion ................................................................................................................. 209
5.1 People in Recovery ........................................................................................................... 210
5.1.1 Untrustworthiness. ..................................................................................................... 210
5.1.2 Choosing Your Choices. ............................................................................................ 219
5.1.3 Bodies of Proof. ......................................................................................................... 225
5.1.4 Surveillance................................................................................................................ 229
5.1.5 Being Listened To. ..................................................................................................... 233
5.1.6 Liminality. .................................................................................................................. 237
5.1.7 Recovery as Life. ....................................................................................................... 244
5.1.8 Embodied Recoveries. ............................................................................................... 248
5.2 Supporters and Healthcare Providers ................................................................................ 252
5.2.1 Relational Entanglements. ......................................................................................... 252
5.2.2 Temporalities of Family-Based Treatment (FBT). .................................................... 261
5.2.3 Different Conceptualizations of Recovery................................................................. 264
5.2.4 Recovery Model and Healthcare Providers. .............................................................. 273
Chapter 6: Conclusion................................................................................................................. 276
6.1 Providing Support to Those in Recovery .......................................................................... 276
6.2 Not All Sunshine and Rainbows. ...................................................................................... 278
6.3 Fear of Return. .................................................................................................................. 280
6.4 The Power of the “Recovery” Language. ......................................................................... 281
6.5 Recoveries: As Diverse as Life Itself................................................................................ 284
6.6 Honouring Lived Experience. ........................................................................................... 291
6.7 Limitations ........................................................................................................................ 292
6.8 Implications and Contribution .......................................................................................... 294
References ................................................................................................................................... 298
Appendix A: Script for Screening with Healthcare Providers .................................................... 330