The primary professional diagnostic criteria for Anorexia Nervosa (AN) in the Diagnostic and Statistical Manual of Mental Health Disorders, fifth edition (DSM-5) are: (1) restricted eating, leading to a “weight that is less than minimally normal”; (2) “intense fear of gaining weight or becoming fat,” despite low weight; and (3) body image disturbance or denial of illness severity [2]. Individuals with AN often refuse treatment, which clinicians believe reflects the egosyntonic nature of the illness, alongside “delusional beliefs about body image, coupled with impaired judgement and cognition caused by starvation” [3, p419]. AN has the highest mortality rate of any mental illness [4,5,6]. Overall, AN is conceptualized as a drive to be thin at the potential cost of death.

What more is there to learn about the role of weight in AN beyond a portrait of “dying to be thin?” The present research centers individuals with AN history as the experts of their experience, from whom there is much for researchers to learn. Subsequently, this paper asks: How do individuals with firsthand AN knowledge understand weight loss and weight restoration in relation to recovery, and what do they believe researchers still need to know to better understand their experience? The importance of this study stems from an epistemological view that individuals who experience and narrate AN can be primary “knowers” or experts in this arena [7]. This research is urgent because conventional treatment practices, which may diminish personal voice in AN healing processes, may cause iatrogenic harm [8, 9].

Though modest in lifetime prevalence, affecting up to 4% among females and 0.3% among males, the illness’s impact is potent. Individuals may experience a mortality rate at least five times greater than the general population [10], with some estimates as high as a 16-fold [11]. When AN becomes chronic, deemed “severe and enduring anorexia nervosa” (SE-AN), individuals experience a significant decline in life expectancy, with a mortality rate of 20% at 20 years of illness [5]. Touyz and Hay [5, p2] indicate: “it is unfortunately not uncommon for death to occur in young adults in their thirties with a further 5–10% every decade thereafter” (2). Thus, early recognition and intervention are essential, with an average age of onset of 18 [12, 13]. Effects from starvation are a major cause of death, largely related to cardiovascular complications [14]. However, the second leading cause of death in AN, accounting for approximately 20% of deaths, is suicide [15, 16]. With so much attention to weight and the physical body in popular cultural depictions of AN, these suicide statistics are a powerful reminder of the psychiatric components of AN.

Treatment substantially mitigates the risk of death; however, there is a lack of an evidence base to set standards of care, and many people face difficulty in accessing treatment [17]. Almost half of individuals with eating disorders are insured through Medicaid in the United States of America (USA), which doctors rarely accept because of its notoriously low reimbursement rates [18]. Yet, Medicaid is often the only public insurance option for millions of low-income Americans [19]. Severe cases of AN are among the costliest mental illnesses to treat, and so private insurance companies also minimize coverage [20]. For instance, individuals with an AN diagnosis who may need more intensive care, such as hospitalization, can be denied treatment for weighing too much [21].

Definitional issues in AN experience extend beyond the weight requirements for accessing intensive care. Indeed, what constitutes “recovery,” beyond survival, remains undefined [22]. Remission criteria were added to the DSM-5 for the first time in 2013, and the manual does not employ the term “recovery.” Weight restoration is often the central DSM-5 criterion for remission, and sometimes the only criterion employed in empirical research [23]. Khalsa and colleagues [23, p2] maintain, “A greater consensus regarding the definition [of relapse, recovery, or remission] would be of considerable benefit to clinicians, researchers, patients, and family members, by allowing all constituents to speak the same language.”

If all constituents are to speak the same language, it becomes critical to ask, whose language will they speak? To this end, we center individuals with AN history to help better conceptualize AN and recovery through more nuanced understanding of the role of weight in AN. In the subsequent sections, we review relevant theory and research that postulates why weight matters in AN.

Theories about the etiology of AN play significant roles in how people—the general public and clinicians alike—comprehend and evaluate AN and recovery. Prior medical and mass media perceptions of AN have focused on it as an illness of weight, as a metric and/or aesthetic. Early debates (primarily of the late 1970s to early 2000s) broadly centered around whether AN was the result of internal psychological distress or the outcome of a misogynistic sociocultural context. The former largely focused on AN as weight loss as a strategy for psychological solace [24], while the latter allotted attention to the social rewards attached to thinness [25].

Contemporary research into AN is increasingly more interdisciplinary and dynamic in etiological inquiry and epistemological approach, for instance, in considering relationships between the social environment, individual psychology, neuroscience, and epigenetics [26, 27]. But even as academic theories have advanced to more complex explanations, AN is still conceptualized in reductionist ways in the cultural imagination, where appearance ideals continue to dominate [8, 28]. Legislative initiatives, including body mass index (BMI) minimum mandates for models and advertiser notes on altered images, imply that altering popular media will serve as a protective factor against AN [29].

No less than the National Institute of Mental Health [30] states, “Eating disorders are actually serious illnesses…” [emphasis added]. While this might seem like a trivial critique, for comparative context, it is unlikely that the National Cancer Institute would need to elaborate that cancer is actually serious. Warin [31, p9] noted how “people dying of cancer are rarely represented in the same exhibitionist manner” as people dying of AN. Media has aimed to lure sociocultural fascination through “shocking color images of young women’s emaciated bodies” (9). These extreme manifestations of AN, of “carnivalesque” imagery and “enticement of spectacle” [31, p9] can distort AN experience in ways we emphasize in this paper.

Further complicating matters is the extent to which thinness is not only idealized as a fashionable aesthetic, but also as a personal health achievement [28]. Two out of three Americans have a BMI in the “overweight” or “obese” range, and the U.S. has 72 billion-dollar diet and fitness industries, earning it the label “a cult of thinness” [32,33,34,35]. The prevalence of negative perceptions of higher-body weight clients among physicians is well-documented, with “higher-body weight clients being deemed ‘lazy,’ ‘sloppy,’ having ‘poor self-control,’ ‘unattractive,’ ‘indulgent,’ and ‘noncompliant’ [36]. In contrast to a stigmatized fat body, a thin body is often positively perceived, even if that body is sick [37, 38]. In AN, low weight becomes distinct from other symptoms such as anxiety and depression, given the often-lauded physical and psychological traits attached to thinness, such as discipline [39]. Sociologist Sharlene Hesse-Biber [34, p94] has asserted “disorderly eating is not a sign of pathology, but a strategy that is a ‘normal’ part of the female existence,” and broader human experience [34, 35]. What makes people with AN labelled as pathologically ill is that dieting, fear of weight gain, and body image disturbance occur in a body that is at “a significantly low weight” [2]. Whether and when weight fixation is pathological evolves as a theme throughout this paper.

Notably, these oversimplified and overgeneralized understandings of AN as beauty or celebutante aspiration can feel invalidating to people with AN, even interfering with getting well [40]. Even doctors, both within and beyond eating disorder specialty healthcare settings, may be heavily swayed by misleading conventional conceptions of AN [36]. For example, when mental health trainees saw clients with higher body weights, they minimized those clients’ symptoms, referred them for fewer therapy sessions, and attached negative stereotypes to their descriptions of the clients [41]. Trainees may have little other context: In “A National Survey of Eating Disorder Training” the authors found that of 637 responding medical programs, only 19% scheduled or had elective rotations for eating disorders [42]. Moreover, internal medicine averaged just 1.94 h of teaching about eating disorders, and even general and child/adolescent psychiatry averaged only 4 h [42]. Given that clinicians, as human beings, are not free from bias, stereotypes of eating disorders can influence illness assessments. Healthcare providers’ understandings of AN as trivial and choice-driven can make them reluctant to offer treatment [40]. For example, health care professionals often fail to offer higher-weight individuals the same level of care that they offer to individuals in lower-weight bodies even when the physical effects of malnutrition are similarly pronounced [43].

In sum, both mass media and medical perceptions have focused on AN as an illness of weight, as a metric and/or aesthetic. Broadly, less weight is believed to constitute more illness, while more weight is deemed less illness [43]. Given the high rates of suicide attempts and completed suicides in AN, this continued concentration on weight implies possible misunderstanding of AN experience [16]. To this end, in this study, we explore how weight loss and restoration are conceptualized from subjective perspectives of AN experience, and, in turn, ask what respondents believe researchers most need to know for better understanding.