[Report] Young internet users and eating disorder websites: beyond the notion of “pro-ana”

ANAMIA (“‘Ana-mia’ Sociability: an Online/Offline Social Networks Approach to Eating Disorders” ANR09-ALIA001) is a fundamental research project started in 2010 and funded by the French Agence Nationale de la Recherche (ANR). It is conducted by a multidisciplinary team of researchers based in France and UK.

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Report: Young internet users and eating disorder websites: beyond the notion of “pro-ana” (pdf, 92 pp, in French)

Infographic: results and recommendations of the ANAMIA project (pdf, in French)

 

The social phenomenon

In Internet parlance, “Ana” and “Mia” stand for anorexia and bulimia nervosa. A number of websites designed and run by users, discuss these eating disorders (EDs). The provocative stance of some of them, going as far as to claim that these disorders are a lifestyle choice rather than a disease, has attracted the attention of media and policy makers, and has earned them the derogatory label of “pro-ana” and “pro-mia”. Users describe their “crises”, purging behaviours, and longing for thinness and bodily perfection, inspired by airbrushed celebrity photos (thinspiration). For a long time it was impossible to obtain high-quality data on usage of these websites whose contents (text, photos, conversations, etc.) are hidden by their authors to circumvent censorship.

 

The survey

The ANAMIA survey, the first to cover the social environment, eating practices and digital usages of persons with eating disorders in the English and French web, fills this gap. It employs multiple and complementary methodologies: questionnaires, interviews, statistical modelling, computer simulation and web cartographies, to answer questions that have engaged the scientific community over the past decade. Does discussing eating disorders online equate to advocating them? Why are these websites experienced by their members as channels for support and personal autonomy? Do ana-mia blogs and discussion forums lock users into risky behaviours, or do they rather serve to inform them and to make them aware of their health state?

 

The methods

ANAMIA relies on the analysis of social networks, a technique practiced in the social sciences long before the advent of the Internet. The term “social network” denotes any group of friends and acquaintances, linked by relationships and interactions that can influence the opinions and behaviours of each of them. Since the development of information and communication technologies, new social networks have added to those developed face- to-face. Today, anyone facing a health issue (such as an eating disorder) can rely not only on their family, friends, doctor or local network of solidarity, but also on the users of many web platforms. The ANAMIA project reveals and evaluates complementarities and conflicts between these different ways of interacting with social networks, whether or not they are mediated by computers.

Visualization of the personal networks of four individuals with, respectively, EDNOS (Eating Disorders Not Otherwise Specified, top panel, left), anorexia nervosa (top, right), bulimia nervosa (bottom, left), binge eating (bottom right). The hollow circles represent their face-to-face acquaintances, the filled circles their online ones. Colours correspond to the degree of relational proximity to the subject (green: intimate, blue: very close, yellow: close, red: somewhat close). Source: Authors’ elaboration.
Visualization of the personal networks of four individuals with, respectively, EDNOS (Eating Disorders Not Otherwise Specified, top panel, left), anorexia nervosa (top, right), bulimia nervosa (bottom, left), binge eating (bottom right). The hollow circles represent their face-to-face acquaintances, the filled circles their online ones. Colours correspond to the degree of relational proximity to the subject (green: intimate, blue: very close, yellow: close, red: somewhat close). Source: Authors’ elaboration.

 

The results

The main results, summarized in the table below, of the project invite to rethink the very notion of pro-ana: glorification of anorexia is far from encompassing all the postures and practices in these communities. The stereotype of young, socially isolated “pro-ana” teens seeking refuge online from the troubles and inadequacies of their daily life, is also undermined: on the contrary, the users of these sites aim to restore some form of “commensality” and sharing around food, that their disorder would have spoiled otherwise. Generally, these sites offer an additional space for their members’ sociability, where they build self-help networks to access forms of support and assistance that would not be available elsewhere, and that add to the provision of services by the healthcare system. Users rarely refuse treatment, but rather seek complementarity with the healthcare system, especially when the latter is ill equipped to deal with them (in the case of “medical deserts” for example). The reality is more complex than many alarmist reports would suggest. This questions the usefulness of censorship. Such a measure is, in fact, ineffective and harmful, leading communities to turn inward, becoming entrenched and impenetrable to information campaigns and to health professionals trying to reach out to them.

Main results Recommandations
We need to problematize the notion of “pro- ana”. Pure anorexia affects less than 20 % of the users of these sites, while mixed forms dominate (45%) and bulimia is present especially in France (28%). Most websites reject the accusation of advocating anorexia or any other eating disorder. Reject the “pro-ana” label and adopt the notion of “ana-mia” (morally neutral and representative of the variety of disorders).
Censorship of ana and mia web sites is ineffective. Between 2010 and 2012, the number of French sites remained stable, despite repeated threats of closure. Censorship is also harmful, as communities’ attempts to hide prevent outreach by health professionals. Refuse censorship and filtering of ana-mia web contents, both at the level of service providers and of national laws.
Online relationships enhance the sociability of persons with eating disorders. If the disease often results in loss of the values of pleasure and food-sharing at the table, online spaces allow at least partial recovery of this «commensality». Facilitate online sharing for restoring some form of food-related sociability, albeit limited.
Ana – mia website users do not refuse healthcare. Over 50% of those with a disorder are being treated, usually by several professionals (GP, psychiatrist, nutritionist …) for long periods (3-4 years). However, they often consider the available provision of care insufficient. Integrate online spaces in the overall provision of care to offer additional forms of support and medical information, tailored to the needs of the affected population.
Ana – mia sites are a source of support for users. They offer them: 1) information, 2) empathy , 3) practical help and 4) companionship, «being together». Their clear separation from other contexts of social interaction allows users to access such support in a welcoming and non-judgmental environment. Promote the confidentiality of online interactions and non-judgemental listening, notably in any new online support service to be provided by health professionals.
Ana-mia sites tend to evolve towards moderate orientations. Any radicalization , whether «pro-ana” or «pro-recovery» can lead to the fragmentation of the community into opposing groups, but is unlikely to impose itself onto all members. Prefer «moderate» messages and give up too explicitly pro-recovery approaches in online information campaigns for persons with  eating disorders.

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