For over a decade, a kind of moral panic has set in concerning websites accused of advocating anorexia (“pro-ana”) and encouraging extreme weight loss (“thinspiration” or “thigh gap”). A recently published report titled “Young people and the web of eating disorders” presents the results of the ANR ANAMIA project, the first research project to have applied the analysis of social networks to the study of web communities of people with anorexia or bulimia. For a long time it was impossible to obtain quality data on visits on these sites designed and run by those with eating disorders. The report criticizes popular beliefs about the social isolation of internet users, their refusal to get medical care, and the efficiency of censorship to prevent their radicalization.
Beyond the notion of pro-ana
Researchers in the ANAMIA research project have just published the report after a three-year study on the web communities of people with eating disorders. Several myths associated with anorexia and bulimia in the context of digital sociability are exploded in the report. In particular, the study indicates that the very notion of pro-ana (a pejorative label which refers to the web communities accused of “promoting anorexia”) is actually not appropriate when describing these websites, blogs, forums and social platforms. The question of whether the internet contributes to the spread of eating disorders has kept researchers from different fields busy for a long time: nutritionists, psychologists, sociologists and digital culture experts.
“The results of our research, carried out on French and English-speaking Internet users, fundamentally changes our understanding of this phenomenon”, confirms Antonio Casilli, sociologist at Télécom ParisTech and at the Edgar Morin centre of EHESS, who was scientific coordinator of the research. “We were surprised to discover that pure anorexia affects less than 20% of the users of these websites. Mixed disorders prevail (45%) and bulimia is present, especially in France (28%). Furthermore, half of the users have a Body Mass Index considered to be normal by the World Health Organization. We are therefore faced with people who slip through the net of the classical clinical system, as their weight is too high for them to be treated against anorexia”.
By analyzing the personal communications networks of hundreds of individuals thanks to data-collection software specifically designed in collaboration with CNRS researcher Paola Tubaro, the team of researchers became aware that these people found something in these web communities that the health system does not offer them: personalized information and emotional support. But the members of online groups dedicated to eating disorders rarely refuse treatment; quite the reverse, they are seeking extra support in conjunction with the medical system, especially as the latter is ill-equipped to deal with them, which is the case in the “medical deserts”, for example.
Going beyond the alarmist discourse of the mainstream media, which have raised the specter of “pro-ana” or the “thigh gap” for a decade, the participants in the ANAMIA study do not vindicate anorexia, but instead adopt critical stances for keeping a distance from the illness. Far from representing an exclusively negative force in terms of spreading disorders, these website contain elements of self-regulation. And as Antonio Casilli summarized, “These anorexic people are, so to speak, hungry for recognition”.
Unique research of its kind
The findings of the ANAMIA study were a surprise to various sections of medical and social research. “For many years”, confirmed Paola Tubaro, “several of us thought that by applying innovative methods of analysis of social networks to these websites, we could evaluate the impact of internet usage on the development and continuation of eating disorders. But this was only a hypothesis. Now, by using these methods, we actually have convincing results”.
Nevertheless, NEDA, the American national eating disorders association, states on its website that “these websites are dangerous both for those who have an eating disorder and for those who don’t, but who may be vulnerable”. According to them, there has been a sharp increase in these types of website on the Internet.
But the team of ANAMIA researchers defends its position: “Certain associations and companies producing parental control software have indeed carried out unscrupulous surveys over the past few years”, Antonio Casilli warned. “Their generalized comparison between violent or sexual content and the websites of people in a daily battle against anorexia and bulimia is highly unlikely. Of course public decision-makers and health professionals should be vigilant, but we are confident that other studies will be carried out to add to our survey and to help develop awareness”.
Changing awareness and public policies
Several years will be needed to make doctors and parents understand that it is important to integrate these communities in order to “help without judging”, observed Pierre-Antoine Chardel, philosopher at Télécom Ecole de Management, who ran the ethical and legal thinking part of the study. However, this study could have consequences which go beyond disciplines: “A significant part of our results”, continued Pierre Antoine Chardel, “tends to show that the links which develop between anorexic and bulimic communities on the internet create socialization patterns for people who were often marginalized before the digital boom”.
A better understanding of the effects of websites on socialization patterns in patients could help develop more appropriate public health strategies in the future. “This is only the first step towards providing better support for these disorders”, assured Paola Tubaro, “but it is an important step”.
The ANR ANAMIA project: studying eating disorders from a sociability angle
Supported by the ANR and coordinated by the EHESSS, IMT, with CNRS, the University of Western Brittany and Aix-Marseille University, this project studied the Internet communities of people with eating disorders for three years, using innovative analysis methods of online and offline social networks.