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. 2024 Jul 8;12(1):96.
doi: 10.1186/s40337-024-01045-5.

"It's like building a new person": lived experience perspectives on eating disorder recovery processes

Andrea LaMarre  1 , Megan Hellner  2 , Scout Silverstein  2 , Jessica H Baker  2 , Bek Urban  2 , Jacqlyn Yourell  2 , Hannah Wolfe  2 , Taylor Perry  2 , Dori Steinberg  3
Affiliations

"It's like building a new person": lived experience perspectives on eating disorder recovery processes

Andrea LaMarre et al. J Eat Disord. .

Abstract

Background: Deeply engaging with the expertise of those who have experienced or supported someone with an eating disorder can add to a growing body of knowledge about recovery processes. In this qualitative study, we sought to explore and generate nuanced understandings of recovery experiences of people with a lived ED experience (first hand or as a caregiver) who were working as mentors in the field. To do this, we focused on changes that occur in personality, traits, and interests over the course of an eating disorder and into recovery.

Method: We conducted semi-structured interviews with 27 people with an eating disorder history, either through personal lived experience (n = 14) or as a caregiver of a loved one with an eating disorder (n = 13). We undertook a reflexive thematic analysis of the data through a critical realist lens.

Results: We developed three themes, which illustrate the nonlinearity, relationality, and systemically linked nature of changes across experiences of having and recovering from an eating disorder. The first theme focuses on expansion; participants described how their worlds got bigger as they explored who they were becoming and discovered new ways of living in line with their values. The second theme emphasizes the balance between support and autonomy participants described as important for enabling change to occur across the recovery process. The last theme highlights the ways in which changes throughout the recovery process entwined with systemic factors, including actively pushing back against diet culture and weight stigma.

Conclusions: Participants' stories highlight interactions between individual, relational, and societal shifts that occur throughout the course of an ED and into recovery. They support ongoing calls to orient to ED recovery as situated within a broader social milieu, which invites us to build supportive environments to enable expansion and flourishing.

Plain language summary

If we wish to better understand eating disorder recovery, it is important to ask those who have lived experience. In this qualitative study, we sought to better understand changes that people experience while they have an eating disorder and into recovery. We conducted interviews with 27 people with an eating disorder history. Participants had either first-hand lived experience or lived experience of supporting someone with an eating disorder, and were working as peer (n = 14) or family (n = 13) mentors supporting others through recovery. We analyzed this data using reflexive thematic analysis. We developed three themes, which together paint a picture of recovery as a non-linear experience that occurs with the support of others. First, participants shared how recovery felt like the world was getting bigger as they discovered a version of themselves that resonated with their values. Second, they discussed the importance of striking a balance between being supported and having autonomy. Finally, participants reflected on how they needed to push back against weight stigma and diet culture as they worked toward recovery. These stories help to illustrate the importance of looking at shifts and changes in recovery to better understand it—including individual shifts, shifts in relationships, and social shifts that can support recovery.

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Conflict of interest statement

The authors, with the exception of Dr. Andrea LaMarre, are employed by or interns with Equip Health, Inc. Dr. Andrea LaMarre was engaged with Equip as an independent research consultant and paid by Equip for analysis and writing. This work is not intended as a testimonial for Equip and the results pertain to recovery experiences in general, not specific to Equip services.

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