Women’s eating disorder origins as responses to childhood trauma and negative social self: a qualitative study exploring lived experience perspectives

Abstract

Background

Research has identified many risk factors, ranging from individual to sociocultural believed to contribute to the development of eating disorders. However, the majority of studies are quantitative and tend to focus on anorexia nervosa exclusively, while prioritizing the voices of experts over those with lived experience’s descriptions of causes. This is problematic because individuals with eating disorders have been found to hold different perceptions regarding the cause of their condition compared to individuals without an eating disorder. In this study, we address these gaps. We focus on the voices of individuals with lived experience rather than experts, take a qualitative approach to get richer, fuller accounts of individuals’ experiences than may be allowed by quantitative data alone, and investigate the onset of a spectra of eating disorders rather than limit focus to one particular type. The purpose of this qualitative study is to explore the perceived origins of eating disorders from the perspective of women with lived experience.

Method

We interviewed 21 women to elicit their eating disorder life story narratives. Women’s eating disorder life story narratives were analyzed using reflexive thematic analysis.

Results

Analysis identified two origin story themes: Eating Disorder as Response to Childhood Trauma (i.e., private threats to the self) and Eating Disorder as Response to Negative Social Self (i.e., public threats to the self). Taken together, these two origin story themes help situate women’s eating disorder beginnings in their private and public contexts.

Conclusions

Study results are discussed as holding both academic and practical significance. Academically, this study advances eating disorder research in five ways. First, it extends research on eating disorder causes. Second, it advances the area’s feminist efforts. Third, it increases lived experience perspectives. Fourth, it accelerates the area’s reflexive turn. Fifth, it addresses diverse eating disorder experiences. Practically, study results hold utility for women with eating disorders and eating disorder professionals by better contextualizing women’s eating disorder beginnings and aiding in sense-making.

Plain language summary

Many risk factors contribute to the development of eating disorders, from individual characteristics to broader social pressures. Research in this area often prioritizes expert viewpoints and leans on quantitative methods. Here, we foreground lived experiences and shift the methodological approach. In this study, we listen to women who identify as having had an eating disorder and explore what they believe contributed to the development of their eating disorder qualitatively. Through analysis of interviews with 21 women, we found that the eating disorder originated as Responses to Private and Public Threats to the Self. The first theme, Eating Disorder as Response to Childhood Trauma, captures the ways participants traced the origins of their disorder to early life family trauma. In the second theme, Eating Disorder as Response to Negative Social Self, participants traced the beginnings of their eating disorder to public rather than private threats to the self, which we refer to as a negative social self. Taken together, these two themes help situate women’s eating disorder beginnings in their private and public contexts. Considering causes from the perspective of individuals with first-hand experience of the condition has become increasingly important in both research and clinical practice.

Background

Eating disorders are complex mental illnesses affecting approximately 30 million Americans [33, 82]. Research has identified many risk factors, ranging from individual to sociocultural believed to contribute to the development of eating disorders [10, 16, 92]. Historically, research has taken a quantitative approach [57] and tends to focus on anorexia nervosa [61] (for exceptions see [78, 117]). To deepen extant knowledge, our study explores a spectrum of eating disorders, takes a qualitative research approach, and focuses on eating disorder onset.

Likewise, research on risk factors has tended to prioritize "expert" voices, including those of researchers1 and clinicians [48], over those with lived experience's descriptions of causes [11]. Unsettlingly, individuals with eating disorders have been found to hold different perceptions regarding the cause of their condition than individuals without an eating disorder [16]. This limited and potentially problematic focus becomes especially pertinent when investigating women2 with eating disorders because they have traditionally been oppressed and subjected to retaining a non-dominant status in many cultural contexts (along social, economic, and political lines [76]). We challenge these persistent gender power gaps and instead value women as experts of their own lives rather than merely objects of inquiry. In doing so, this study contributes to a growing body of literature centering the voices of individuals with lived experience of eating disorders (e.g., [59]).3 The aim of this article is to qualitatively explore the perceived origins of eating disorders from the perspective of women with lived experience.

Study significance

This study holds both academic and practical significance. Academically, this study advances eating disorder research in five ways. It extends research on eating disorder causes, advances the area’s feminist efforts, increases lived experience perspectives, accelerates the area’s reflexive turn, and addresses diverse eating disorder experiences. Practically, study results hold utility for women with eating disorders and eating disorder professionals by better contextualizing women’s eating disorder beginnings and aiding in sense-making.

Factors contributing to eating disorders

It is widely accepted that the causes of eating disorders are complex and should be considered multifactorially rather than singularly [82]. Research has identified numerous biological, psychological, and environmental factors believed to influence the onset, persistence, treatment and recovery success of eating disorders, with varying impacts from individual and sociocultural contributors [10]. A “perfect storm” of risk factors may arise whereby an individual’s inherited biological and psychological predispositions react with their social surroundings, creating significant risk ([36]; citing Frank, 2016). Here, we present some of the most salient risk factors identified in the literature as contributing to the development of eating disorders,4 including genetics, body dissatisfaction, perfectionism, abuse, familial influences, peers, competitive sports, and the media.

Genetics and biology play a role in the development of eating disorders, with research indicating they are 40–70% heritable ([7, 119]). Dysregulation of certain neurochemicals has been strongly associated with eating disorders [80]. In addition, puberty has been linked to an increased risk of disordered eating, likely due to increases or irregularities in circulating hormones [30].

Body dissatisfaction is a second threat in the development of eating disorders [16, 34, 83]. Body dissatisfaction arises when an individual’s personal image of their body, especially its size and shape, doesn’t match the idealized version they hold in their mind [58]. Body dissatisfaction has been shown to lead to disordered eating patterns, such as binge eating and purging.

Perfectionism is a third threat for eating disorder development [117], as this personality trait likely fuels a persistent pursuit of the thin ideal [34]. Perfectionism is “the tendency to demand of others or of oneself an extremely high or even flawless level of performance, in excess of what is required by the situation” [1]. Perfectionism may promote dieting, binge eating, purging, and maladaptive exercise particularly when combined with low self-esteem [43].

Emotional, physical, and sexual abuse have all received empirical support as risk factors for eating disorders [11, 78, 113]. One study identified that among those affected, 45% experienced emotional abuse, 31% sexual abuse, and 26% physical abuse [77]. Evidence from a large-scale study suggests that individuals exposed to multiple types of maltreatment in childhood may be at particularly high risk for eating disorders ([10]; citing Hazzard et al., 2019).

Additionally, eating disorder risk factor studies regularly link illness susceptibility to familial influences [115]. For example, in families, commonly identified threats for eating disorders include parents’ own body dissatisfaction and dieting behaviors [3]. Parental teasing, critical comments about weight, pressure to lose weight, and encouragement to diet have also been associated with eating disorder development [92, 98].

Peers have been consistently identified as an important factor associated with the development of eating disorders, especially among adolescents [99]. Girls, in particular, may learn attitudes and behaviors from their peers, such as the importance of being thin and dieting behaviors, through modeling [100], fat talk [4], and messages that contribute to the idealization of thinness [53]. Furthermore, risk factors for lesbian and female bisexual adults and adolescents include pressure from friends to be thin and a lack of social support from friends [87].

Competitive sports and their focus on physical fitness pose a risk in the development of eating disorders [91, 111]. Sports that are leanness focused, requiring leaner physiques and lower weights (e.g., dance, long-distance running) pose a greater risk than nonleanness focused sports [56]. Additionally, sport environments where success is based on body aesthetics and where costumes, makeup, femininity, and physical attractiveness are valued (e.g., figure skating, gymnastics) create additional pressures, putting athletes at even greater risk for developing eating disorders [56].

Finally, the media is believed to be a key contributor to eating disorder development [34, 92]. Media influence for eating disorder development is largely related to social comparison, or the drive to compare oneself to another [40]. Higher use of media, especially social media, is related to higher risk of eating disorder development, lower self-esteem, and body dissatisfaction [27, 79, 101]. Similarly, social media use, particularly content that is highly visual and appearance-focused, can trigger self-objectification, which often leads to body image concerns and disordered eating [102].

Despite research identifying many risk factors, ranging from individual to sociocultural, that contribute to the development of eating disorders, the majority of studies are quantitative and tend to focus on anorexia nervosa exclusively, while prioritizing the voices of experts over those with lived experience’s descriptions of causes. This is problematic because individuals with eating disorders have been found to hold different perceptions regarding the cause of their condition compared to individuals without an eating disorder [16]. Subjective research into the lived experience of the onset of eating disorders is limited, though research exploring the experience of an eating disorder more broadly has incidentally shed light on causal factors [68]. Qualitative research in general, and feminist qualitative work in particular, can, however, help address this gap. The current study adopts a qualitative perspective by examining the perceived origins of eating disorders from the perspective of women with lived experience.

Qualitative research and a feminist framework

Qualitative research is a type of inquiry that emphasizes context, experience, voice, meaning, and subjectivity in exploring and interpreting complex social phenomena [51]. Engaging with qualitative research is valuable for garnering a rich, in-depth and nuanced understanding of eating disorder development and how it is made sense of by those who have lived experience with the condition. Qualitative research fits our study given its congruence with feminist approaches, our centering of lived experience perspectives, and our use of reflexive thematic analysis.

Expanding on existing coherence between qualitative research and feminist approaches [61], qualitative methods and a feminist approach were utilized in this study. Various approaches to feminist research exist [60]. Despite a wide spectrum, several commonalities define feminist scholarship. Beyond the core goal of analyzing gender relations, these include: “a recognition of bias as an inherent aspect of any human inquiry, a stance of self-conscious reflexivity, and an emphasis on context as an essential factor in understand behavior” ([107], p. 439; citing Morawski, 1990). In the present study, we endorse a specific approach to feminism—an “empiricist feminist” framework ([107]; citing Worell, 1994).

An empiricist feminist framework builds on the very general common denominators of feminist scholarship described above and offers a set of emergent research criteria. These criteria are seen as additions to rather than substitutes for traditional standards of investigation. Following an empiricist feminist framework, we combined a gendered lens with four commitments seen as characterizing feminist research: (a) affirmation of a positive view of women, (b) adoption of a “contextual” approach, (c) utilization of a broad spectrum of research methods, and (d) consideration of the implications of research findings for social change. Our embodiment of empiricist feminists’ commitments is outlined below.

First, we affirm a positive view of women by taking legitimately women’s own accounts of their eating disorder origins. Second, we adopt a “contextual” approach by situating women’s eating disorder beginnings in their private and public contexts. Third, we broaden the spectrum of research methods by adapting McAdams’ [73] life story interview to elicit participants’ eating disorder life stories and analyze them using Braun and Clarke’s [21] reflexive thematic analysis. Fourth, we consider the implications of research findings for social change by translating study results for practical significance. By embracing a feminist approach to studying women’s eating disorder origins, our study responds to LaMarre et al.’s [60] call for feminist eating disorder scholarship.

Heeding calls for lived experience perspectives and reflexivity

Additionally, this study contributes to a growing body of literature that emerged in response to calls (e.g., [43, 62, 96]) for centering the voices of individuals with eating disorders. Qualitative studies, although limited in number, have led the way in providing insight into the lived experiences of individuals with eating disorders. For example, O’Shaughnessy et al. [85] analyzed the subjective experiences of women diagnosed with anorexia nervosa, with a particular focus on their emotional and relational experiences of anorexia nervosa. Watterson et al. [117] explored the experiences of women with a history of an eating disorder, identifying life events they perceived were relevant to the onset of their eating disorder through to recovery. Barry et al. [11] investigated the meaning that women diagnosed with anorexia nervosa and/or bulimia nervosa ascribed to their condition in the context of their families’ histories. Malcolm and Phillpou [68] sought to explore what women with lived experience of anorexia nervosa perceived to be causal or contributing factors involved in the development of their anorexia nervosa. This study solicits women’s eating disorder life story narratives and analyzes them using reflexive thematic analysis.

Reflexive thematic analysis is a methodological approach to qualitative data that enables the identification and analysis of themes or patterns [21]. Unlike traditional thematic analysis, which may not explicitly account for the researchers’ influence on data interpretation, reflexive thematic analysis demands an ongoing, critical examination of how the researchers’ perspectives, assumptions, and interactions with the data shape the construction of the themes [21]. This process of reflection and acknowledgement of the researchers’ active role in knowledge production was particularly pertinent given our own histories of lived experience with eating disorders. As an approach, reflexive thematic analysis aligns with the broader commitment to reflexivity in qualitative research. This underscores the relevance of reflexive thematic analysis for accelerating the reflexive turn in research on eating disorders.

To reveal how women make sense of their eating disorder origins entails exploring the origins from the perspective of women who self-identify as having had an eating disorder. The analysis in this study, therefore, addresses the following research question: How do women perceive the origins of their eating disorders?

Methods

This study obtained ethics approval from the Institutional Review Board at a university located in the west of the United States (U.S.).

Participants and recruitment

Participants included 21 women between the ages of 18 and 67 years old (M = 29.52, SD = 14.24) who self-identified as suffering from an eating disorder. See Table 1 for a summary of participant demographics. Twelve participants were from Colorado, two were from California, one was from Hawaii, one was from Illinois, one was from Michigan, one was from Minnesota, one was from North Carolina, one was from North Dakota, and one was from Wisconsin. Participants included women both clinically and self-diagnosed with eating disorders. Clinical diagnoses were not required for participation, given extant barriers for obtaining an eating disorder diagnosis in the U.S. [94], and given the fact that diagnostic tools are anchored in narrow, biased profiles [60]. Additionally, diagnoses themselves are socially constructed and rooted in the science and politics of nosology [41]. Requiring clinical diagnoses for participation would have resulted in a gross misalignment with our feminist approach. Feminist scholars have long interrogated the power and possible danger of diagnostic labels [71, 72]. For most feminist eating disorder researchers and practitioners, “the person’s embodied experience of distress is paramount: lived experience and self-reported suffering ‘count’ equally as much as, if not more than, a diagnostic label—a label that was always intended to be hypothetical and heuristic, serving as the opening decision in a long, complicated, and unstable process” ([60], p. 7). Such broad criteria for participation allowed for voices often excluded from traditional eating disorder research.

Table 1.

Participant Demographics

Participant pseudonym	Age (years)	Age at ED onset (years)	ED	Race	Sexual orientation/ Gender identity	Social class	Education	Religion, spiritual practice, existential worldview	Identity label
Afton	22	11	AN; BN; AA; OSFED	White	Heterosexual	Affluent	Some college	None	Partially recovered; no such thing as recovered; disordered but functional
Briar	18	13	AN; BED	White	Bisexual	Middle	Some college	Atheist	Disordered but functional
Cora	21	13	AN	White	Bisexual	Middle	Some college	None	Fully recovered
Deja	18	12	AN	White	Heterosexual	Working	High school diploma	Christian	Disordered but functional
Estee	31	26	OSFED	White	Bisexual	Middle	Doctorate degree	Spiritual but not religious	Partially recovered; no such thing as recovered
Freya	22	6	AN; BN	White	Questioning	Middle	Master’s degree	Christian	Partially recovered; disordered but functional
Gwen	21	12	AN	White	Heterosexual	Affluent	Bachelor’s degree	Spiritual but not religious	Fully recovered; no such thing as recovered
Hollis	34	14	BN; BED	White	Questioning	Middle	Doctorate degree	Christian	No such thing as recovered
Ivy	57	18	BN	White	Heterosexual	Middle	Some college	Christian	Disordered but functional
Jules	19	11	AN	White	Heterosexual	Affluent	Some college	Christian	Partially recovered
Lei	22	18	AN; BN; BED; OSFED	Asian; White	Fluid	Middle	Bachelor’s degree	None	Partially recovered; no such thing as recovered; disordered but functional
Maree	41	19	OSFED; ARFID	White	Heterosexual	Working	Unknown	Spiritual but not religious	Disordered but functional
Nimah	23	16	BED; OSFED	White	Heterosexual	Middle	Bachelor’s degree	Pagan	Partially recovered
Odette	25	10	AN; BN	White	Bisexual	Middle	Master’s degree	Christian	No such thing as recovered
Pippa	21	16	AN; ON	White	Heterosexual	Middle	Some college	Christian	Fully recovered; disordered but functional
Quinn	19	12	AN; BN; BED; AA	White	Questioning	Middle	Some college	Spiritual but not religious	Disordered but functional
Rakel	19	12	AN	White	Heterosexual	Middle	High school diploma	Agnostic	No such thing as recovered; disordered but functional
Skye	39	7	AN; BN; BED; ON	American Indian	Heterosexual	Working	Bachelor’s degree	Atheist	Fully recovered; no such thing as recovered
Tru	54	8	AN; BN; BED	American Indian; White	Heterosexual	Working	Master’s degree	Atheist	Partially recovered; no such thing as recovered
Ume	18	11	OSFED	Asian	Bisexual	Middle	Some college	Agnostic	Partially recovered; disordered but functional
Val	22	13	AN; OSFED	White	Pansexual	Middle	Bachelor’s degree	Spiritual but not religious	No such thing as recovered

N = 21. ED: eating disorder; AN: anorexia nervosa, characterized by low body weight, distorted body image, and fear of being overweight; BN: bulimia nervosa, characterized by eating large amounts of food in a discrete period of time followed by compensatory behaviors; BED: binge eating disorder, characterized by eating large amounts of food in a discrete period of time along with experiencing a sense of a loss of control; OSFED: other specified feeding or eating disorder, also formerly called eating disorder not otherwise specified, characterized by displaying some characteristics of other eating disorders; ON: orthorexia nervosa, characterized by obsession with optimal nutrition; AA: anorexia athletica, also called hypergymnasia, characterized by excessive exercise; and ARFID: avoidant/restrictive food intake disorder, characterized by avoidance and aversion to eating.

All participants voluntarily responded to the recruitment materials, disseminated at four locations, including local coffee shops, university communication courses, university academic buildings, and the first author’s social networking websites. When potential participants contacted the first author directly via email expressing interest in participation, the first author verified they met participation criteria before providing (a) a link to the Qualtrics online consent form and sociodemographic survey, (b) information about the interview, and (c) a participant resource document with university-, local-, and national-level eating disorder support resources.

Data collection

Six interviews were held in-person and 15 were conducted online. Interviews started out in-person but were moved online because of social distancing mandates following the coronavirus outbreak. After reviewing the consent form, the first author discussed the purpose of the study, including her personal experience with an eating disorder, before introducing the interview protocol, which adapted McAdams [73] life story interview to elicit the eating disorder life story. The eating disorder life story is the story of a woman’s eating disorder as they remember it and choose to (re)construct it. While there are various versions of the life story interview, McAdams’ [73] protocol was chosen for adaptation given its effectiveness at cuing people to supply narrative accounts embedded with a strong sense of identity and purpose [74]. Participants were guided through seven overarching sections: (a) chapters, (b) key scenes, (c) future script, (d) challenges, (e) personal ideology, (f) story theme, and (g) reflection. Interviews lasted between 1 and 2.5 hours (range in minutes: 65–158 [M = 96, SD = 31]). All interviews were audio recorded.

Data analysis

Data were analyzed using Braun and Clarke’s [21] six-phase reflexive thematic analytic process. Phase one: Familiarizing yourself with the dataset began with the first author repeatedly listening to audio recordings of the interviews. During this first phase, the first author also transcribed the interviews. The written transcripts took the form of a Microsoft Word document (line count range: 435-1,038 [M = 725, SD = 194]). The first author checked the written transcripts against the digital audio recordings for accuracy before changing participant names to pseudonyms and removing all identifying personal information. Following transcription, the first author printed the transcripts and began reading, gaining a holistic sense of the data. Repeated, focused readings were performed and, consistent with a theoretically driven approach, the literature was regularly reviewed.

Phase two: Coding involved sorting and organizing units of the data into meaningful codes. During this phase, the first author read through the transcripts line-by-line and manually assigned tentative code labels. Examples of initial code labels included “eating disorder as coping mechanism” and “eating disorder as result of co-comparisons.” During this phase, the first author worked systematically, naming as many codes as were relevant to identify a feature or segment of raw data. The intention was “data reduction” and “conceptual development” ([64], p. 243). Data reduction consisted of trimming the raw data into schemes of interpretation, while conceptual development involved building upon concepts already outlined and surveying the data for additional concepts. This phase concluded once the transcripts had been coded and a comprehensive list of codes created.

Phase three: Generating initial themes began with the first author cohering codes developed in phase two into larger systems of meaning (i.e., categories and themes). Thematic mapping provided a framework for organizing the relationships between codes [21]. Codes were organized and re-organized into clusters to form categories. Examples of categories included “attributed private eating disorder origins” and “attributed public eating disorder origins.” Categories were (re)organized until candidate themes were formulated.

Phase four: Developing and reviewing themes incorporated two verification procedures. The first, data conferencing [19], consisted of a three-hour meeting with scholarly peers for evaluation of candidate themes, theme definitions, and data exemplars—vivid data extracts that demonstrate the essence of a particular point or issue of focus [13]. Peers were recruited given their expertise with either McAdams’ [73] life story interview or Braun and Clarke’s [21] reflexive thematic analytic process. Two of the three peers had lived experience of eating disorders themselves. Peers used Patton’s [88] criteria for authenticating themes—internal homogeneity and external heterogeneity. Internal homogeneity (i.e., internal consistency) refers to instances in which the data aggregated within each theme coheres together in a meaningful way. External heterogeneity (i.e., external distinctiveness) means there is apparent and discernible differences across themes. Peer feedback suggested theme refinement to meet Patton’s criteria. Refinement included division of a candidate theme too heavily concentrated and merging of candidate themes too deficient to stand on their own.

The second verification strategy, member checking [63], included the process “whereby data, analytic categories, interpretations, and conclusions are tested with members of those stake holding groups from whom the data were originally collected” ([63], p. 314). Participants were emailed a table with the revised five candidate themes, theme tenets, and narrative excerpts illustrating each tenet. Eight of the 21 women responded. These women reviewed the provisional report, agreeing with the initial interpretations, authenticating the themes and tenets. Two of the eight women offered additional insights, alerting the first author to circulating cultural discourses that merited further analytic attention.

At this phase, the first author recruited the second author for assistance, given their expertise in reflexive thematic analysis. During an initial data conference, the second author noted the possibility of multiple research questions being answered by the themes. Afterwards, the first author returned to the data, once more revising the candidate themes.

Phase five: Refining, defining and naming themes began with the second author verifying the first author’s activities. The second author was presented a Word document, which included theme names, theme definitions, and vivid data extracts demonstrating each theme’s essence. The second author evaluated the (a) individual themes themselves, (b) themes against the data, (c) themes against each other, and (d) themes against the research question and the overall developing narrative. During this phase, the authors decided to focus on two themes. The scope of each theme was defined, and informative theme names were chosen: Eating Disorder as Response to Childhood Trauma and Eating Disorder as Response to Negative Social Self.

Phase six: Writing up involved the formal writing of the analytic narrative. The first author constructed the analytic narrative by moving back and forth between theme definitions, thematic maps, data extracts, the literature, and data conferences with the second author. During this phase, the first author also selected exemplars and embedded them within the developing narrative. The second author read and edited each draft of the analytic narrative and provided recommendations for improvement. Revisions were made until both authors agreed on the analytic narrative in answer to the study’s research question.

Researcher reflexivity

We enacted researcher reflexivity throughout the research process. Here, we reflect on the impact our subjectivities may have had on our work. For instance, both author’s histories with having had eating disorders yielded insight only available to “cultural insider[s]” ([32], p. 21). Second, our paradigmatic commitments and professional interests inevitably impacted our engagement in this study. For example, the potential to challenge androcentrism5 inspired the first author’s criteria for participant recruitment. Additionally, given our standpoints as critical interpersonal, family, and health communication scholars, we were likely sensitized during data analysis to attend to private interpersonal-/family-level and larger, social-/public sphere influences in the development of eating disorders. Lastly, our feminist sensibilities presumably inspired the essence of our themes and the writing of our results.

Given our histories and commitments, we engaged in several procedures to ensure the quality and rigor of the research process. For instance, the first author kept a research journal, including descriptive memos and recorded sense-making from the onset of the investigation to the reporting of findings. The second author wrote and shared detailed memos following each data conference. Together, these activities resulted in development of an audit trail [63]. The audit trail was reviewed by an independent auditor who expressed overall agreement with the analysis.

Results

Figure 1 provides an analytic structure of the results of our reflexive thematic analysis of 21 women’s life story narratives of the origins of their eating disorders. The top-level rectangle represents the overarching theme or umbrella concept of eating disorder origins as Responses to Private and Public Threats to the Self that anchors together the two themes of Eating Disorder as Response to Childhood Trauma (i.e., private threats to the self) and Eating Disorder as Response to Negative Social Self (i.e., public threats to the self). These two themes are represented by the horizontal mid-level rectangles. Three subthemes sit under each theme, each of which focuses on a particular aspect of its respective theme. Consistent with a multifactorial view (e.g., [82]), some participants traced the origins of their eating disorder to private threats to the self, others to public threats to the self, while others identified a combination of both private and public threats to the self as contributing to the development of their disorder.

Fig. 1.

Organizational Framework for Eating Disorder Origins. This figure provides an analytic structure of our results. Results are anchored to the overarching theme of ED origins as Responses to Private and Public Threats to the Self. The overarching theme is represented by the top-level rectangle. Two themes were identified: ED as Response to Childhood Trauma (i.e., private threats to the self) and ED as Response to Negative Social Self (i.e., public threats to the self). These two themes are represented by the horizontal mid-level rectangles. Three subthemes sit under each theme. Each of which focuses on a particular aspect of its respective theme. Private origins of EDs were framed as: (a) coping mechanisms for childhood sexual abuse, (b) physical responses to negative familial memorable messages, and (c) means of control in face of uncontrollable childhood. Public origins of EDs were framed as: (a) physical responses to hyper-competitive social environments, (b) avoidance of negative social evaluation, and (c) search for social rewards. ED: eating disorder.

The labels private and public threats to the self are rooted in our respective discipline of Communication Studies—specifically within the Family Communication literature. Historically, family communication scholarship has maintained a sharp divide between private and public life, viewing the family as a protected haven insulated from external cultural forces [13, 108]. The conceptualization of the terms private and public within our discipline informs our operational definitions. We operationalize private threats to the self as experiences existing predominately in the intimate domestic/home sphere and public threats to the self as experiences existing predominately outside the personal home/family realm, in the external public and impersonal social sphere that challenge, contradict, or derogate an individual’s valued sense of identity. In other words, a threat to the self is a condition perceived as unfavorable to a person’s self-conception. For the analytic purposes of and scope of this article, threats to the self are bifurcated. That is, we present each theme and associated realm independently to illuminate issues especially relevant to that respective sphere. However, in practice, private and public threats to the self co-inform one another. For instance, the dominant beauty standard as a public set of ideas and practices is supported by the domestic sphere of the private family. Likewise, the external public provides varying degrees of support for messages received from family members privately. As these examples illustrate, private and public threats to the self have different but complementary roles to play in contributing to the development of eating disorders. Befittingly, we encourage viewing threats to the self as along a continuum rather than as separate categories. Viewing threats to the self as a spectrum helps avoid the tendency to separate threats by spheres (i.e., private or public). Consequently, inviting a more complex view.

Eating disorder as response to childhood trauma: private threats to the self

We begin with the first theme, Eating Disorder as Response to Childhood Trauma, which captures the ways participants traced the origins of their disorder to early life family trauma. While we observed participants linking the onset of the disorder to a variety of types of childhood trauma—physical, verbal, psychological, and emotional—we identified three subthemes, which we focus on here. Each subtheme contained a somewhat different kind of response and was associated with a different type of childhood trauma (e.g., sexual, verbal). Origins of the women’s eating disorders were narratively framed as: (a) coping mechanisms for childhood sexual abuse, (b) physical responses to negative familial memorable messages (i.e., hurtful, negatively valanced, verbal messages remembered across time with profound effects on attitudes and behaviors [54], and (c) means of control in face of uncontrollable childhoods.

Eating disorder as coping mechanism for childhood sexual abuse

This first subtheme captures how eating disorder beginnings were characterized as coping mechanisms for childhood sexual abuse. For instance, Ivy shared how bulimic behaviors of binge eating and purging helped her cope with sexual abuse at the hands of her uncle, whom she characterized as “definitely a pedophile,” but also her mother’s complicity in the abuse. As Ivy explained, “She would basically hand me over on a platter to him and then clean me up after he was finished with me.” Ivy felt angry with her mother, yet unable to confront her: “I would just have these horrible feelings about what my mom did to me and be so angry with her, but yet she’s my mom and you’re not supposed to be angry with your mother.” Feeling trapped, Ivy binged—physically eating the unexpressed feelings of betrayal. As she succinctly stated, “I would eat to stuff it down.” The physicality of purging the binged food became a means of purifying herself from her uncle’s violations, “as a child going through sexual abuse, you feel so dirty. I’ve learned as the years have gone on that my purging was a way to try and feel clean.”

Purging functioned similarly for Hollis as she coped with her step-grandfather’s sexual violations of her. As Hollis explained, “The reason that I started to hate my body was that my step-grandpa started molesting me during puberty.” Hollis’ narrative mirrored not only Ivy’s feelings: Hollis “felt dirty and gross and uncomfortable” after the abusive episodes, but also Ivy’s actions. Purging helped Hollis cope. Purging “was something I could do to try and control the way—or slow or stunt that transition of girlhood to womanhood.” Hollis reasoned that if she could reverse her body’s physical development, she would draw less attention to her body—and hopefully less attention by her step-grandfather. “I didn’t want to gain any more weight or become anymore curvaceous. Like I wanted to revert back to before I was seen in any kind of sexual way.” Hollis’ purging was her means of intervention. Purging was her attempt—as a child—to stop the abuse.

Eating disorder as physical response to negative memorable messages

In the second subtheme, participants attributed the onset of their eating disorder to negative memorable messages. The messages as well as the women’s recounting shared several repeated characteristics. First, the messages themselves all related to participants’ bodies, appearance, intake of food and/or eating habits. They were also uniformly communicated by family members, who, notably, were always older female family members. Second, the recounting was all delivered in the style of direct reported speech [114], meaning the source of the message was always named and the messages were not only recounted word-for-word, reproducing the source’s words verbatim, but also performed in the style in which they were originally uttered [12]. Moreover, narrators reported explicit details about the interaction, such as date, location, setting, and other family members present.

For instance, mirroring other participants, Briar began by naming the precise date and location of the message. She then changed her voice to sound more nasally and sassy to match her sister’s voice, reciting her sister’s message word-for-word:

It was August of 2014. I had just gotten home from school one day and I was eating this snack and my sister walked into the kitchen. ... I will always clearly remember her saying, “maybe if you wanted to be skinny like me, you wouldn’t eat like a fat fucking pig all the time.”

Like other participants, the link between Briar’s sister’s message and the onset of her disorder was direct, “That was when it really started the connection in my head of being skinny and not eating. So, after that point I started restricting.”

Lei’s sense-making was similar. Lei attributed her disorder’s onset to a memorable message received 10 years before the interview, when she was only 12 years old. Lei first set the stage for her retelling. After sitting down at the dinner table with her parents and older sister home from college, Lei recalled her sister commenting on the spoonful of rice Lei put on her plate. Lei then reproduced her sister’s message both word-for-word and in its original style, “Wow Lei so many carbs.” Lei explained she “had no idea rice was a carb” or she “should be worried about [carbs]” or “the spoonful [she] had was a lot of rice.” Lei remembered “second-guessing” herself before putting a portion of her serving back in the bowl. Lei declared her sister was “one of—maybe even the primary reason—I had any weird body image or food related associations.” Having “always looked up to her,” Lei recounted, “she’s what made me aware of those things.” Like other participants, the link between the message and behavior was explicit for Lei: “From that moment on, when I ate rice, I thought about that—what she said. I still think about that. Those thoughts really shaped my behaviors and relationship to food.”

Eating disorder as control in face of uncontrollable childhood

In this third subtheme, participants positioned their disorders as means of asserting some semblance of control within childhoods that otherwise felt completely out-of-control. We observed two central patterns within this subtheme. In the first, participants reported controlling the size of their body to try and effect a desired outcome. For instance, Ivy narrated how she restricted her eating to making herself physically small and seemingly less noticeable in an effort to avoid parental physical abuse: “My dad was always very abusive to my older siblings ... if I could be small, meaning thin, I’d be more invisible and ignored, and left alone.” Relatedly, Freya described restricting and obsessively exercising to appear perfect (read: thin) to save her parent’s marriage:

I grew up in a pretty dysfunctional family. My parents had a toxic relationship. … They used to fight about money. Then we moved to Colorado, and they had money. Then they fought about being here. … There was only so much fighting I could take. … If I didn’t give them a reason to fight, if I was the perfect daughter, I thought maybe they’d stay together.

In the second pattern, participants resorted to controlling their bodies when other traumatic childhood events felt uncontrollable, whether addiction, neglect, parentification (when a child is forced to take on developmentally inappropriate adult-like roles and responsibilities), dysfunction, or conflict. For instance, Deja explained how the behaviors of restricting and starving associated with anorexia nervosa provided her some semblance of control when otherwise helpless to control her sister’s addiction. For Deja, the eating—or lack there-of—provided a sense of “control over situations that I literally have no control over. Like my sister. I can’t control her addiction. I might as well control something about myself .. what I’m putting into my body and how my body looks.” Similarly, Jules traced the onset of her eating disorder to how her “life kind of imploded when I was 16.” Simultaneously parentified as caretaker for her cancer-stricken father and grieving the sudden death of her boyfriend after he drove drunk into a wall, Jules reported “I couldn’t control those situations, I had to control other things. I could control what I ate. I could control how much I worked out. I could control my body and my appearance.”

Eating disorder as response to negative social self: public threats to the self

In the second theme, Eating Disorder as Response to Negative Social Self, participants traced the beginnings of their eating disorder to public rather than private threats to the self, which we refer to as a negative social self. We found three distinct—though interconnected—subthemes articulated across the dataset in which participants linked the onset of their disorder to a negative social self. Specifically, eating disorder origins as a/an: (a) physical response to hyper-competitive social environments, (b) avoidance of negative social evaluation, and (c) search for social rewards.

Eating disorder as physical response to hyper-competitive social environments

This first subtheme captures how participants characterized their eating disorders as stemming from feelings of social inadequacy. Feeling trapped in hyper-competitive social environments, participants attributed their eating disorders to feeling constantly judged and never measuring up. Participants reported turning to eating disorder behaviors (e.g., fasting, exercising obsessively, binge eating, and purging) to numb a felt sense of shame for perceived personal shortcomings. We noted three patterns within this subtheme.

In the first pattern, participants linked the disorder’s onset to a never-ending stream of public status competitions in which they felt inadequate. For instance, Jules felt nearly crushed by constant comparisons and unrealistic expectations having explained, “I feel like women especially, there’s so many pressures put on them to be perfect, to look perfect, to be a certain weight and height and statue. I definitely fell into that really bad hole of never feeling good enough.” Feeling like she didn’t measure up, Jules further descended into her eating disorder. Jules went on to add, almost as an aside to herself, “The more I’m thinking about it, my self-worth and the approval of others has really been the caveat of my whole eating disorder, just never feeling good enough, just always trying to compete with other people.”

In the second pattern, participants connected the disorder’s origins with hyper-competitive online environments. Participants reported comparing themselves to individuals online that, in retrospect, they realize weren’t even real, but enhanced depictions thanks to beauty filters and editing apps. Evidencing this, Jules explained, “I started to use social media more. I would follow very unhealthy pages that would show women that were Photoshopped a lot, like the Kardashians or people that were just figments of online reality.” Throughout her disorder, Jules described how, “I just put them on a pedestal. And if I didn’t match their body shape or if I wasn’t trying to exceed them, I would never feel good enough.” Subjected to severe and constant judgments and out of reach beauty standards while living under a tyranny of metrics, Jules’ self-esteem plunged, leading Jules to starve herself and run to the state of exhaustion.

In the third pattern, participants associated the disorder’s beginnings with hyper-competitive childhood sport environments. For instance, Pippa traced her disorder’s origins to the milieu of competitive swimming. “The basis of my eating disorder came from an orthorexia type of standpoint—basically, a basis in athletic performance and wanting to improve. On top of that,” Pippa further reasoned, “a really big factor of why it occurred during swimming was that’s, obviously, a sport where you’re around people and everybody’s wearing swimsuits, and so your body’s very visible, and it’s really easy to compare yourself to other people.” Pippa recalled, “looking at the girls who were really good at swimming,” realizing “all of them were really skinny. And so, I thought maybe that’s what I needed to look like to achieve the same level of success as they did.” Enticed to pursue a seemingly “better,” “more successful” version of herself, Pippa described, “first having conscious thoughts about watching what I eat and body image.” So pivotal was hyper-competition to Pippa’s eating disorder she explained:

A lot of it is centered around the fact that I never thought that I was good enough for a lot of things. I always felt that there was something that I needed to fix about myself, and that I just wasn’t able to accept who I was at the time and realize that I could still do great things even if I didn’t weigh a certain amount.

Adding a final warning, Pippa cautioned, “Comparing yourself to others in that sense is what can be really dangerous.”

Eating disorder as avoidance of negative social evaluation

Like other aspects of these results, in this subtheme, the disorder developed as a protective measure. In the case of this second subtheme though, participants reported the eating disorder developing from a desire to avoid negative social evaluation. Avoidance of negative social evaluation of peers as well as the families of their peers were cited as particularly powerful sources of motivation.

Rakel’s remembrance of unfavorable assessments of her body during summer camp evidence the eating disorder originating as an attempt to sidestep negative peer evaluation. Rakel recalled boys calling her fat during a camp relay race. Rakel remembered “internalizing” these criticisms. As Rakel recounted, “that’s when I really started to take notice of my body more.” For Rakel, the interaction was a “defining moment,” one “that really shifted things for me.” The relay race was the first time she recalled viewing negative social evaluation as “something to be worried about” and social others’ perceptions of her something to “be aware of.” For Rakel, “this was really the first time that I attached my worth with my physical appearance.” In Rakel’s narrative, she framed her eating disorder as an internalized physical response to social anxiety stemming from a feared inability to make positive social impressions.

Similarly, Gwen attributed the beginnings of her disordered behaviors to an avoidance of negative social appraisal. Weight gain, as perceived by Gwen, would elicit negative social reactions making her the brunt of adverse social exchanges: “Morally, there’s such value based on certain types of bodies. That’s what led me to feeling like mine was bad and I needed to change it.” Differing from Rakel though, Gwen’s narrative illuminates participants’ tracing the onset of the disorder to unfavorable judgments of peers’ families.

For instance, Gwen recalled an early memory, in sixth grade, when a friend’s mom invited her over for dinner. After Gwen agreed to attend, the friend’s mom remarked she didn’t want leftovers and she knew if Gwen was present, there wouldn’t be leftovers. Gwen observed abashedly, “I realized that’s how people viewed me.” Gwen explained the impact:

I guess the reason I thought it was bad was because she said it as a negative thing. … It felt like she was projecting her own beliefs and thoughts onto me. … Her comment triggered something in me because I thought about that a lot long after that happened.

Upon further reflection, Gwen reasoned, “I think that shows how I really internalize what people say, and I think I internalize those things and that’s how they became to be these subconscious beliefs in my eating disorder and about me.” Like others, this negative social evaluation prompted compensatory eating disorder behaviors, in Gwen’s specific case—compulsive exercise and binge eating/purging of food.

Eating disorder as search for social rewards

In this third subtheme, participants framed their eating disorders as mechanisms by which they increased their social status. Participants reported using their thinner bodies and physical appearances that fit the dominant beauty standard to obtain more social power and to elicit more social rewards. For example, for Odette, “It was all internalized to me that my success in my interpersonal relationships and anything that I wanted to pursue in life had to do with my physical appearance.” Garnering social acceptance was a key motivator for why Odette developed her eating disorder, connecting the disorder onset to the sociocultural surround, her eating disorder: “Call[s] attention to the fact that women grow up with these expectations.” “Women are expected ... to look a certain way or have opportunities based on appearance.” For Odette, these expectations are:

Continually reinforced in society. So, whether that be in our shows or in jobs that we perceive as powerful or sexy even, that whole concept all comes from body image, and it permeates every aspect of our lives including education, including relationships.

Rewarding elements of a thinness allowed upward social mobility.

Being thin functioned similarly for Cora as she insisted her eating disorder behaviors began after she had lost a bunch of weight and were grounded in a terror of gaining the weight back and losing the affirmation of others. As Cora explained:

I lost all sorts of weight. I went from being overweight to being really thin. And obviously that doesn’t change anything about me or how I think about myself as a person. But the people in my life started treating me differently because I was skinny.

Cora recounted having experienced social mobility and increasing her social capital because of changes to her body, “I was getting all this positive attention from my peers and family and even my teachers because I had lost weight. Then I was terrified of gaining that weight back. And so, I started restricting.” Restricting was her attempt to continue garnering positive social evaluation associated with a smaller body size.

Afton’s sense-making was similar. Afton recollected people validating and encouraging her eating disorder, recounting, “my grandparents were so proud when I lost a bunch of weight,” despite being “so sick.” This positive experience of pro-social evaluation by others provided a sort of “positive feedback loop” for Afton, who emphasized the rewarding elements of inclusionary status, stating, “People are attracted to people who are skinnier. It is true.” Afton reasoned that thinness carries social status, influencing her desire for a slender body. Embodying thinness permitted her to heighten her social worth. Illustrating this Afton talked about how “we live in a visual culture. Appearances matter.”

Discussion

Taken together, the two themes: Eating Disorder as Response to Childhood Trauma and Eating Disorder as Response to Negative Social Self capture how women traced the origins of their eating disorder to private and public threats to the self. In this section, we first discuss the academic significance of our results. Then we turn to address the practical significance of our study for audiences outside academia.

Academic significance

Academically, this study makes five significant contributions to eating disorder research. First, it extends research on eating disorder causes. Second, it advances the area’s feminist efforts. Third, it increases lived experience perspectives. Fourth, it accelerates the area’s reflexive turn. Fifth, it addresses diverse eating disorder experiences. We address each significant contribution below.

Extending research on eating disorder causes

First, this study extends research on the causes of eating disorders. Results contribute to six key areas of literature addressing eating disorder etiology, including: (a) childhood sexual abuse, (b) memorable messages, (c) distress and control, (d) hyper-competitive environments, (e) negative social evaluation, and (f) social rewards. Here, we expand upon each area.

Childhood sexual abuse

This study deepens understanding of the interrelationships between childhood sexual abuse and women’s eating disorders (see also [45, 46, 70]). In the current study, two-fifths of participants (n = 8) cited sexual abuse as contributing to their eating disorder. Notably, eating disorders have multiple meanings and functions ascribed to them by those with lived experience—including being perceived as concurrently harmful and helpful [15, 96]. As such in the case of childhood sexual abuse, an eating disorder may serve interpersonal functions including protecting the self from further abuse by attempting to create a body that is undesirable to perpetrators [22, 78]. As vividly illustrated by Hollis’ story recounted above, our results are consistent with previous research suggesting that eating disorder development for survivors of sexual abuse likely represent a logical attempt at self-protection by becoming so large or small as to become sexually undesirable [67, 69]. Additionally, as evidenced by Ivy’s story, our findings parallel the work of Hodge and Baker [45], who suggest that women who have been sexually abused attempt to cleanse their bodies of unwanted emotions and memories through purification rituals and eating disorder practices (e.g., purging).

Memorable messages

Building upon Orrego Dunleavy and Malova’s [86] and Jordan’s [53] work linking interpersonal and familial memorable messages to eating disorder development, this study reports how memorable messages are often perceived by those with lived experience as triggers for eating disorders. Findings provide support for the theory of memorable messages [28] by highlighting the role family communication and the processing of memorable messages play in the development of eating disorders. The current study amplifies Jordan's [53] call for further work on family communication and eating disorder development.

In addition to contributing to memorable message literature, this study showcases the utility of extending research on the impact of family members’ appearance-related communication on body image outcomes. Extending previous insights on effects of mothers’ appearance-related communication on daughters’ origins of eating disorders, our findings draw attention to impacts of older female family members appearance-related communication, including aunts and sisters, as illustrated in the narratives of Briar and Lei. As such, we amplify calls by Arroyo and colleagues (i.e., [3, 5]) for examination of familial relationships beyond the mother-daughter dyad.

Distress and control

Furthermore, this study is compatible with previous qualitative research reporting a “need to feel in control” as a main cause for developing an eating disorder (e.g., [42]). However, our results extend this line of study, highlighting what women are seeking to (re)gain control of (i.e., the context). Past framings have located control within the individual, as a stable personality trait (i.e., not dependent on circumstances or context; [20]). Our results draw attention to the wider circumstances (i.e., traumatic childhood events) girls and women find themselves trying to assert control in.

Relatedly, our results support previous research linking eating disorder onset to adolescence (e.g., [117]). The average age for disorder onset for our participants was 13 years old (M = 13.24, SD = 4.52, range in years of age: 6 to 26). Some participants’ noted difficulty in managing distress with the eating disorder originating as a pseudo form of control, as depicted in both Deja and Jules’ stories. Previous studies note a correlation between difficulty regulating emotions and eating disorders (e.g., [11, 24]). Our results expand upon this literature by situating the distress outside rather inside the individual. From a family systems perspective, our findings support the notion that eating disorders can be viewed, in part, as symptoms of social environments and interpersonal interactions, rather than as individual-level pathologies (see also [93]).

Hyper-competitive environment

Our results extend research on impacts of competitive sport environments on eating disorder development (e.g., [83, 111]) in two ways. First, results spotlight the role of public status competitions and resulting feelings of adequacy in eating disorder origins, as vividly illustrated in Pippa’s story. Second, study results connect disorder onset to hyper-competitive online environments, as demonstrated by Jules’ story. Social comparison is well documented in research on eating disorders (see [76] for a critical systematic review). Our results underscore existing concerns about the impact of the increasingly competitive nature of public life on eating disorder origins.

Negative social evaluation

Aligning with existing research, our results illuminate links between eating disorder origins and negative social evaluation. For instance, Watterson et al. [117] found a link between conditional acceptance, fear of abandonment, and eating disorders. Similarly, Longmire-Avital and Finkelstein [65] found a connection between body insecurities and negative peer appraisal. Moreover, Jordan [53] found that messages of body unacceptability and messages communicating fatphobia contributed to eating disorders in a sample of LGBTQ+ individuals. The current study extends this body of research by spotlighting avoidance of negative social evaluation as a particularly powerful source of motivation in the development of eating disorders, as illustrated by both Rakel and Gwen’s narrative exemplars.

Social rewards

Finally, this study contributes to the literature addressing the interrelationships between eating disorder origins and women’s search for social rewards. Kwan [58] found that overweight and obese women were motivated to lose weight because of what the aesthetically appealing slender body represented—improved status and social power. Cheney [25] found that ethnically diverse women coming of age in American society “might use the body to overcome perceived inequalities present in [their] everyday social relationships, ultimately increasing [their] social capital and power” (p. 1357). Espinoza et al. [38] noted pressure to be attractive as a common trigger for disordered eating and extreme weight-loss behaviors. Furthermore, participants in Jordan’s [53] study recalled messages (a) pressuring them to stay physically appealing and (b) communicating requirements for being attractive. This study extends work on the socially rewarding elements of thinness.

Advancing feminist research on eating disorders

Second, this study advances eating disorder research by deepening the area’s feminist efforts. First, this study builds on the epistemological synergy between qualitative research and feminist approaches. Feminist scholars are increasingly embracing multiple perspectives and methods [37]. Consistent with these interdisciplinary approaches, this study blends qualitative methods and feminist theorizing to uncover the nuances and to offset the “expert” (i.e., researchers and clinicians)-centric bias in identifying risk factors for eating disorders [49]. This study affirms a positive view of women by taking legitimately women’s own accounts of their eating disorder origins. It adopts a “contextual” approach by situating women’s eating disorder beginnings in their private and public contexts. It broadens the spectrum of research methods by adapting McAdams’ [73] life story interview to elicit participants’ eating disorder life stories and analyze them using Braun and Clarke’s [21] reflexive thematic analysis. It considers the implications of research findings for social change by translating study results for practical significance. LaMarre et al. [61] established initial support of compatibility between qualitative research and feminist approaches. Likewise, this study builds upon the established congruence between qualitative methods and an empiricist feminist framework ([107]; citing Worell, 1994). Like LaMarre et al. [61], this study provides a blueprint for future research.

Second, feminist scholarships’ relevance to eating disorders has been present for at least 45 years (e.g., [18]); yet there remains a striking absence of explicitly feminist approaches to eating disorder research [60]. This study advances the field by contributing a feminist perspective to investigating women’s eating disorder origins.

There was certainly a good deal of early excitement in research contexts about the capacity for feminist approaches to extend our understandings of eating disorders. This was evidenced by Fallon et al.’s [39] edited volume entitled Feminist Perspectives on Eating Disorders and later Malson and Burns’ [71] edited volume entitled Critical Feminist Approaches to Eating Dis/Orders. Work on feminist approaches to eating disorders has expanded considerably since the early volumes were published. For instance, Holmes [47] investigated how gender featured in women’s eating disorder and treatment experiences. Using feminist-informed constructivist grounded theory methodology, Wacker and Dolbin-MacNab [116] examined protective factors for women with subthreshold eating disorders. Holmes and Ma [49] adopted a feminist approach to explore women’s experiences of eating disorders in China. This study elaborates on the area’s vibrant feminist work.

Increasing lived experience perspectives in the study of eating disorders

Third, this study advances eating disorder research by increasing efforts to center lived experience perspectives. The current study amplifies answers to LaMarre et al.’s [61] call to attend to the lived experiences of people with eating disorders (see also [62]). In response, Tosi et al. [112] and LaMarre et al. [59] explored the meanings of recovery among people with lived experience of an eating disorder. Tosi et al. [112] examined experiences of recovery and areas of personal growth following the condition in individuals’ who self-identified as recovered from an eating disorder. LaMarre et al. [59] interviewed people with an eating disorder history—either first-hand lived experience or lived experience of supporting someone with an eating disorder—to investigate changes that occur in personality, traits, and interests over the course of an eating disorder and into recovery. Cobbaert et al. [26] provided a lived experience-led narrative review of the factors underlying risk of eating disorders for neurodivergent individuals. Barry et al. [11] analyzed the meaning individuals ascribe to their eating disorders in the context of transgenerational trauma, including helping them to manage their emotions and to feel safe.

This study contributes by deepening research on lived experience perspectives in the study of eating disorders. This study capitalizes on Musić et al.’s [81] argument that although infrequently pursued, “studies designed and conducted by researchers with lived experience” (p. 216), make a great impact. Fascinatingly, given our use of reflexive thematic analysis, results provide insight into two layers of lived experience—the lived experience of participants affected by eating disorders and the lived experience of researchers with histories of eating disorders.

Accelerating emergent reflexive turn in research on eating disorders

Fourth, this study advances eating disorder research by accelerating the area’s reflexive turn. Historically, eating disorder researchers and practitioners in general, and those endorsing feminist approaches in particular, have demonstrated openness to exploring their own bodies, subjectivities, and assumptions about eating disorders and the people they impact. For instance, practitioners have been urged to reflect on the ways their bodies might be perceived and interpreted by clients and the impact these perceptions might have on the therapy process after Rance et al. [95] found that clients with anorexia nervosa not only observed, speculated, and made assumptions about their therapists’ bodies but also that these perceptions had the potential to influence both their beliefs about the therapist’s ability to help them, and their willingness to engage in therapy. Yim [120] discussed the issue of clinician bodies within the context of providing eating disorder services. As these examples illustrate, issues of reflexivity are particularly salient for practitioners treating individuals with eating disorders. Likewise, reflexive practice is essential for researchers working closely with those with lived experience of eating disorders. Researchers have been called to position themselves in relation to their research and to explore the impact their subjectivities may have on the research process (e.g., [66, 109]. In response, reflexivity statements have increasingly appeared alongside ethics and funding statements in eating disorder publications (see [31, 51] for examples). This transparency allows readers to contextualize empirical claims and ethical positions more fully, ultimately strengthening the epistemic and ethical integrity of scholarship [106]. Like the countless authors embedding reflexivity statements in their articles, we publicly reflect on our own positionalities and commitments. As such, this study augments the area’s rich history of critical introspection.

We argue emphasizing reflexivity helps redress the tendency of eating disorder research to take apolitical, acontextual views by mandating self-critical and explicit reflection of the researcher’s own personal history, perspectives, biases, and agenda, and the impact these have on every stage of the research process. This is entirely in keeping with the emphasis on the political nature of personal experience in feminist research and the commitment to disrupt power dynamics that work to delineate possibilities for women.

Furthermore, since the reflexive turn, studies engaging reflexive thematic analysis surged in the area. For instance, utilizing reflexive thematic analysis, Scutt et al. [104] unpacked the experiences of siblings of people with anorexia nervosa who have had eating difficulties themselves. Cripps et al. [31] used reflexive thematic analysis to derive themes to explain how externalization in treatment for anorexia nervosa can help and hinder recovery. Bäck et al. [9] conducted a reflexive thematic analysis to capture the meaning and experience of living with an eating disorder from the perspectives of 15 women with eating disorders and co-occurring depression who were awaiting the start of treatment. Rankin et al.'s [97] reflexive thematic analysis explored parents’ and caregivers’ experiences of residential treatment for eating disorders. Like Scutt et al. [104], Cripps et al. [31], Bäck et al. [9], and Rankin et al. [97], this study’s use of reflexive thematic analysis accelerates the area’s reflexive turn.

Addressing diverse eating disorder experiences

Fifth, this study advances the area by addressing diverse eating disorder experiences. Research on how individuals with lived experience of an eating disorder understand the emergence of their eating disorder has marginally increased in recent years. However, with limited exceptions (e.g., [117]), previous studies have focused on the development of anorexia nervosa [61]. Understandable, as anorexia nervosa is the most notorious [17] and has the distinction of being the deadliest eating disorder—and by some accounts, the deadliest psychiatric disorder due to its high mortality rate [8]. This line of research has contributed knowledge related to perceived causes of anorexia nervosa in adolescents with lived experience of the condition [57] and in a clinical sample of former patients [83]. Other scholars have advanced knowledge related to the links between the development of anorexia nervosa and childhood abuse [70] and childhood trauma [69]. Gulliksen et al. [43] contributed four perceived pathways into anorexia nervosa with the common denominator behind the emergence of anorexia nervosa in these four pathways as an attempt to master life’s challenges. Watterson et al. [117] shifted the focus to identifying the life events women with a history of an eating disorder—any eating disorder—perceived were relevant to the onset of their condition through to recovery.

The current study extends this body of research on the lived experience perspectives of the emergence of diverse eating disorders, including anorexia and bulimia nervosa, and binge-eating disorder among others. This study veers from a focus on thin women’s experiences of restriction to the lived experiences of diverse manifestations of the spectra of eating disorders. It is one of few studies to examine lived experience perceptions of the causes of eating disorders beyond anorexia nervosa.

Practical significance

In this section, we consider how study results can be applied for audiences outside academia. Study results hold practical value for women with eating disorders and eating disorder professionals. Poor opinions towards individuals with eating disorders are well documented [23]. Individuals with eating disorders have been described as “manipulative” ([105], p. 133), “devious” ([62], p. 290), “untrustworthy” ([50], p. 57), and “blameful and responsible for their situation” ([23], p. 8). This study challenges these biased notions, painting a remarkably different picture of women with eating disorders. As such, study results invite pause. Recognizing shared experiences reflected in the narratives might afford an alternative view of women with eating disorders. Results might humanize those affected, better contextualizing their eating disorder beginnings. Moreover, the narrative nature of this study is compelling; results offer an authentic, experience-centered access point. This study draws attention to the illustrative power of emphasizing the experiencing voice, providing a glimpse into things which cannot be directly observed [14], such as how women trace the origins of their eating disorders to private and public threats to the self.

Relatedly, individuals with eating disorders tend to internalize intense stigmatizing beliefs about their conditions [96]. Although evolving, those affected continue to experience stereotypes, discrimination, and prejudices [23]. Individuals with eating disorders often project stigmatizing beliefs onto themselves [29]. They often feel shame, loathing themselves, their bodies, and their behaviors [96]. Study results present a contrasting perspective of women with eating disorders. Diverging from dominant assumptions that those affected are at fault for their condition [23], here, women are recipients of private and public threats to the self, and thus victims. Study results help clarify misconceptions, enhancing women’s understanding about eating disorder origins by placing them in their respective private and public contexts.

In addition to holding practical value for women with eating disorders, study results hold practical value for eating disorder professionals. This study better connects eating disorder beginnings to their private and public contexts. Undoubtedly, our results include origins with which eating disorder professionals are well-versed (e.g., childhood sexual abuse). In this article, we investigated attributions women make about the private and public origins of their eating disorders to contextualize understandings of eating disorders causes. Study results may be used to help eating disorder professionals more compassionately understand, research, and treat eating disorders by placing women’s eating disorder origins in context.

Furthermore, the study interview design spotlights the importance of women voicing their own eating disorder life stories. So vital is women voicing their own stories that it has important implications for health and well-being (see [55]). Research in Pennebaker’s expressive writing paradigm [89, 90] suggests that consistent and significant health improvements are found when individuals write or talk about personally upsetting experiences. Orbuch [84] further contends that when people attempt to make sense of their life experiences, they tend to feel a kind of mastery of the past, which contributes to present well-being, and arouses optimism about the future. By highlighting events and experiences of personal salience [6], the life story interview functioned to create “definitional ceremonies” [118] for the participants in our study. Such a study design produced knowledge that aided participants.

Limitations

Given the inclusive criteria for participation, there may be concerns whether women’s experiences constituted an eating disorder. Our response is two-pronged. First, diagnostic labels rely in part on some form of self-report. Second, the very instruments used to diagnose eating disorders are rooted in particular populations. Many continue to be left out (e.g., transgender/non-binary populations, people of lower socioeconomic backgrounds). These exclusions highlight broader issues of power dynamics that impede certain individuals from being included in pools of potential research volunteers. Considering the obstacles that prevent people from accessing eating disorder diagnosis and treatment, we believe findings based solely on “legitimate” cases are limited in their applicability to the general population. Therefore, our inclusive criteria likely enhance the generalizability of results and makes the knowledge more useful to a broader audience. Like many qualitative scholars, we believe people are the experts on their own lives. However, we acknowledge that this still might be viewed as a limitation.

From positivist and post-positivist perspectives, including aspects of personal experience may seem “unscientific” and at odds with a prioritization of “evidence-based” knowledge. However, like many feminist scholars we advocate for self-critical and public reflection on our positionalities. How we relate to and understand participants’ stories depends on our own theoretical and methodological orientations, which have been made explicit. None withstanding, it is difficult to say how our own experiences with eating disorders impacted the research process and results. Further investigation is warranted.

Lastly, given this study’s focus on women, findings may not apply to other gender identity groups, including men and transgender individuals with eating disorders. Both theoretical frameworks (e.g., [71]) and empirical evidence (e.g., [49]) indicate that gender critically shapes how individuals with eating disorders make sense of their experiences. This implies that the experiences of women and other gender identity groups may be quite different. Future studies should seek to explore diverse gender identity groups’ eating disorder origins in order to fill this gap.

Future research

Eating disorder-informed research using narrative methods, like life stories, yields an important next step in building upon the results reported in this study. Such an approach could also facilitate scholars in answering the chorus of calls to support individuals in narrating their own eating disorder experiences (e.g., [43, 61, 62, 96]). This study’s integration of narrative and feminist theorizing serves as a starting point for researchers interested in this work. Including more voices would provide an even greater range of eating disorder origins. A future study with greater diversity in participant standpoints could serve to shine light on additional private and public threats that contribute to eating disorders. For example, further exploration into middle age and older women’s eating disorder origins is warranted given the rise of older women seeking treatment for eating disorders across the U.S. [35]. Additionally, more in-depth investigation into LGBTQ+ women’s eating disorder origins is needed. Although we had a noteworthy sample (10 of the 21 women identified as LGBTQ+), including a larger sample in future research could help illuminate the ways in which LBGTQ+ women make sense of their eating disorder origins.

Abbreviations

AA

Anorexia athletica

AN

Anorexia nervosa

ARFID

Avoidant/restrictive food intake disorder

BED

Binge eating disorder

BN

Bulimia nervosa

ED

Eating disorder

LGBTQ+

Lesbian, gay, bisexual, transgender, queer/questioning, and other sexually or gender diverse identities

M

Mean

ON

Orthorexia nervosa

OSFED

Other specified feeding or eating disorder

SD

Standard deviation

U.S.

United States

Author contributions

KVS conceived of and designed the study, sought and received ethical approval, collected and analyzed the data, and wrote various drafts of the manuscript. EAS verified KVS’s activities, and read and edited drafts, providing recommendations for improvements. Both authors read and approved the final manuscript.

Funding

No funding was received for this research.

Data availability

Extracts of anonymized data are provided within the manuscript. However, in line with the ethics approval for this study, additional data and materials are not available as written informed consent was not sought and obtained from participants.

Declarations

Ethics approval and consent to participate

This study contained ethics approval from the Institutional Review Board at the University of Denver (Approval Number: 1186753-1).

Consent for publication

All participants provided written informed consent prior to enrollment in this study.

Competing interests

The authors declare no competing interests.