by Natasha Berthold, The University of Western Australia @BertholdNatasha
Many individuals who have experienced an eating disorder (ED), or been close to someone who has, have heard the sentence starting “But you don’t look….,” or its cousin “But you look….” As an ED genetics researcher with lived experience, I cannot count the number of times I have come across those phrases, nor how hard they hit. EDs are a group of psychiatric disorders that have historically faced extensive stigma, much of which is steeped in what EDs ‘look’ like. It is critical to address the continued stigmatization and stereotyping of EDs as they play very real roles in individual’s ED trajectories and treatment seeking. This is a huge topic and can in no way be captured adequately here. Instead, I hope to provide some prompts for the conversations we need to be having on a global level about what EDs are and how we can best research and treat them.
What are some manifestations of ED stigma?
- Weight Stigma
To combat stigma, it is important to first know what it looks like. To start with, let us address weight stigma. Broadly, weight stigma in EDs can be characterized as externalized or internalized weight stigma. Both types play roles in marginalization, clinical disregard, and individual suffering of people with EDs. Externalized weight stigma is discrimination, whether conscious or unconscious, towards body weights and based on societal beliefs and attitudes about body ‘ideals.’ It is a misconception among the wider public, and clinical and academic settings, that EDs and ED severity are associated solely with low weight and thin bodies (McNicholas et al., 2016; Ralph et al., 2022). This is fostered by the widespread use of BMI as a primary measure of ED severity in clinical settings. BMI does not account for muscle composition, respiratory function, bone density, chronic illness, water retention, or ancestry to name just a few factors that might influence an individual’s BMI (Zembic et al., 2021). Recent findings indicate that metabolic profile is more important than BMI, with a study by Zembic et al., (2021), reporting that individuals could be metabolically healthy at a BMI >30, conventially labeled as “obese”. Many individuals, particularly those living in larger bodies are suffering from undiagnosed or misdiagnosed EDs based on these limited criteria and bias (Ralph et al., 2022; Zembic et al., 2021). Individuals with EDs who are not low weight, can also experience severe negative physical and psychological effects. For example, there is little recognition or awareness of internalized weight stigma and ‘fat phobia’ that individuals with EDs face, nor the effects such preoccupation can have on individual’s functioning (Lydecker et al., 2021). Furthermore, weight loss programs—even those under clinical supervision—may be not only unhelpful to people with EDs in larger bodies, but may actually do harm (Ralph et al., 2022).
- SWAG: Skinny, White, Affluent Girls
Another damaging misconception is that EDs are an illness of privilege and choice (Griffiths et al., 2014; Guy et al., 2022). There is a persistent perception that EDs only emerge in wealthy, white females who starve themselves to become thin (Halbeisen et al., 2022). Contributing to this misconception is that studies have predominantly been conducted with white, female participants, primarily in western settings, and those most likely to enter a treatment setting are wealthier individuals in higher income countries (Halbeisen et al., 2022). Moreover, the diagnostic criteria listed in the Diagnostic and Statistical Manual of Mental Health Disorders, fifth edition (DSM-5; American Psychological Association; APA), are based on a limited set of symptoms and do not take aspects such as cultural context or cognitive functioning into account. However, the absence of evidence is very much not evidence of absence, and there is a vital push to appropriately characterize EDs in diverse populations (Halbeisen et al., 2022). The thin ideal may be a culturally relevant pressure on underlying pathology, rather than a defining characteristic (Halbeisen et al., 2022); indeed, the pathological weight/shape concerns are an eliminating factor in avoidant restrictive food intake disorder (ARFID). Furthermore, there is growing evidence for food insecurity or insufficiency playing a role in the development of bulimia nervosa (BN) and binge-eating disorder (BED) (Zickgraf et al., 2022). Children in resource deprived environments and college students who experience food insecurity have been shown to have higher risk and prevalence, respectively, of EDs (Barry et al., 2022; Zickgraf et al., 2022). The etiology of EDs is complex, multifaceted, and differs across the diagnostic types. The growing body of genetic research demonstrates that all currently recognized EDs have a notable genetic contribution, with many different parts of the genome involved (Bulik et al., 2021). Concurrently, there are certainly sociocultural, psychological, and environmental effects that act both independently and interface with genetic factors to produce EDs.
- It is not Just ‘A Female Thing’
The final misconception I will address (although by no means the last) is the stereotype that EDs only affect females. However, sex, sexuality, and gender are as diverse in EDs as in the wider population. Briefly, sex is defined as biological characteristics such as chromosome profile (karyotype), hormonal composition, external genitalia, internal reproductive organs and gonads and the terms used to capture these biological characteristics are male and female. Gender is defined as the psychosocial factors contributing to a person’s identity and health, and the terms used include woman, man, transgender, gender-nonbinary, and more (APA 7th ed.; Clayton & Tannenbaum, 2021). Sexuality refers to the gender or genders and individual is attracted to or sexually engages with (Calzo et al., 2017). Sex, sexuality, and gender are incredibly nuanced and have intersecting and independent roles in EDs. For example, male participants affected by EDs have reported feeling ‘not man enough’ (Griffiths et al., 2014), and body ideals tend towards muscularity rather than weight loss/drive for thinness. Gender non-binary individuals have identified social pressure from heterosexism driving body-dissatisfaction (Halbeisen et al., 2022). Those who identify as a minority sexuality (identify as non-heterosexual) report higher rates of disordered eating than heterosexual individuals, with compounded risk in transgender and ethnic minority groups (Calzo et al., 2017). Several contributing factors have been posited for this, including different attractive body ideals and increased social stressors such as shame and concealment (Calzo et al., 2017). The patterns of ED trajectories and presentations differ across sex, gender, and sexuality with specific risk factors emerging in epidemiological research for different groups. It’s critical that we take an intersectional view to ED treatment and research.
ED science is growing at a rapid rate and disseminating the findings is integral to destigmatizing EDs. Massive global collaborations, such as the Anorexia Nervosa Genetics Initiative (ANGI; Watson et al., 2019), the Eating Disorders Genetics Initiative (EDGI; Bulik et al., 2021), and the newer Avoidant Restrictive Food Intake Disorder Genes and Environment Study (ARFID-GEN) are uncovering the complex genetic and environmental contributions to EDs, and the way in which genes adn environment interact. It is important that we recognize that EDs are complex, and acknowledge that the experience of EDs differs between individuals. Continuing conversations around de-stigmatization of weight and EDs, replacing harmful myths with facts, and helping people appreciate the broad range of individuals who can be affected by EDs are important steps in ensuring the future advancement of the field and eliminating disparities in healthcare that can be perpetuated by misinformation.
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