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Diagnoses are powerful tools that fulfill various practical and symbolic functions. In this paper, I examine how a contested diagnosis called orthorexia nervosa has been taken up by users on Instagram, where tens of thousands of posts engage with the topic, many of them from individuals who identify with the condition. I put scholarship on medicalization and diagnosis in conversation with literature on subcultures to foreground the subversive work that is enabled through this diagnosis. Drawing on more than 350 hours of online ethnographic fieldwork and 34 in-depth interviews, I examine how participants construct a shared identity, draw on common language and norms, and undertake collective practices, as they negotiate dominant understandings of health. I show how they draw on the legitimacy endowed by the diagnostic label to validate and make sense of experiences of suffering but also to counter dominant health-seeking discourses, practices, and aesthetics in an online space where these are highly visible and valued. I also discuss some ways Instagram as a digital platform shapes its uptake by this community in meaningful ways. On the one hand, participants draw heavily on the language and framing of medicine to make sense of their fraught experiences with food and their bodies, effectively advocating for the medicalization of their own suffering while also creating a sense of community and shared identity. However, on the other hand, they actively use the diagnosis and the recovery process enabled through it to effectively resignify dominant beliefs, values, and practices that are experienced as injurious, including some that are particularly prevalent on Instagram.

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Objective. Clinicians regularly use panel genetic testing to identify hereditary breast cancer risk, but this practice increases the rate of receiving an ambiguous test result, the variant of uncertain significance (VUS). VUS results are a growing and long-term challenge for providers and have caused negative patient outcomes. The objective of this study was to elicit expert opinions about patients’ decision making after receiving a VUS result to provide future guidance for VUS disclosure. Methods. Using an adapted mental models approach, experts ( N = 25) completed an online survey and in-depth interview eliciting qualitative judgments of the factors relevant to informed patient decision making after receiving a VUS result. Content analysis of interview transcripts clarified the basis for these judgments. Results. Participants identified 11 decisions facing patients after receiving VUS results grouped into ambiguity management or risk management. The experts also identified 24 factors relevant to each decision, which reflected 2 themes: objective factors (e.g., clinical information, guidelines) and psychosocial factors (e.g., understanding or risk perception). Conclusion. This study presents an adaptation of the mental models approach for communication under conditions of ambiguity. Findings suggest providers who present VUS results from genetic testing for hereditary breast cancer should discuss decisions related to ambiguity management that focus on hope for future reclassification, and be directive when discussing risk management decisions. Objective and psychosocial factors should influence both ambiguity and risk management decisions, but especially risk management decisions.

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In 1997, Steven Bratman, a physician specializing in alternative medicine, proposed he had identified a new eating disorder, a pathological fixation with healthy eating. Soon after, orthorexia nervosa, as he called it, began appearing in newspapers – long before it did in scientific venues. Using a mixed-methods analysis of 492 articles published between 1998 and 2016, I examine the various actors who have participated in orthorexia coverage, including those who were assigned expertise on the unofficial diagnosis. The findings demonstrate a variety of credentialed and non-credentialed sources contributed to media coverage in different ways. Experts in mental illness appeared less often than other healthcare providers, including Bratman and dietitians. Based on the findings, I argue for a more nuanced understanding of expertise to better evaluate source selection in medical journalism and propose a typology that considers both the nature of the claims and the qualifications of the person making them. I conclude with several hypotheses about news coverage of novel conditions undergoing biomedicalization.

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