A new book is just out, co-authored by myself and Antonio A. Casilli: a synthesis of our 5-odd years research on the self-styled internet communities, blogs and forums of persons with eating disorders. For years, lively controversies have surrounded these websites, where users express their distress without filters and go as far as to describe their crises, their vomiting and their desire for an impossibly thin body – thereby earning from the media a reputation for “promoting anorexia” (shortened as “pro-ana”). In France, an attempt to outlaw these online spaces last year was unsuccessful, not least because of our active resistance to it.
The book tells the story of our discovery of these communities, their members, their daily lives and their social networks. Ours was the first study to go beyond just contents, and discover the social environments in which they are embedded. We explored the social networks (not only online relationships, but day-to-day interactions at school or work, in the family, and among friends) of internet users with eating disorders, and related them to their health. The results defy received wisdom – and explain why banning these websites is not the right solution.
Internet deviance or public health budget cuts?
It turns out that “pro-ana” is less a form of internet deviance than a sign of more general problems with health systems. Joining these online communities is a way to address, albeit partially and imperfectly, the perceived shortcomings of healthcare services. Internet presence is all the more remarkable for those who live in “medical deserts” with more than an hour drive to the nearest surgery or hospital. At the time of the survey in France, a number of areas lacked specialist services for eating disorder sufferers.
These people do not always aim to refute medical norms. Rather, they seek support for everyday life, after and beyond hospitalisation. These websites offer them an additional space for socialisation, where they form bonds of solidarity and mutual aid. Ultimately, the paradoxical behaviours observed online are the result of underfunded health systems and cuts in public budgets, that impose pressure on patients. The new model of the ‘active patient’, informed and proactive, may have unexpected consequences.
A niche phenomenon with wider repercussions
In this sense, “pro-ana” websites are not just a niche phenomenon, but a prism through which we can read broader societal issues: our present obsession with body image, our changing relationships with medical authorities, the crisis and deficit of our publich health systems, as well as the growing restrictions to our freedom of expression online.
Classical data for the digital age
Although the study on which the book is based focused on a population of internet users and their online interactions and practices, we did not exclusively rely on web data mining. This is because we would have missed all those interactions, relationships and behaviours that do not leave online traces, or that people tend to keep out of sight – a common practice in this stigmatized, largely hidden community. Therefore, we used a mix of data and methods: digital data retrieved from the web for a cartography of the eating disorders webosphere, but also classical questionnaires and interviews. “Small” data were used in the digital mode, though: the questionnaires were distributed online and included a graphical software application for users to “draw” their social networks, and interviews were conducted over the internet. This is another aspect of the book that is more general than the specific social group it focuses on – a practical example of how data and methods can evolve and be adapted to new empirical contexts without losing their relevance and the decades-long knowledge that supports their use.
The social role of the researcher
Should a social scientist aim to describe reality without any ambition to change it? To what extent can the results of a research support decision-making in policy, business or practice? These are very general questions that all researchers face, and the book tells the story of how they were addressed in the specific case at hand. Policymakers’ attempt to ban “pro-ana” contents last year, the response of the authors, and the involvement of a wide range of civil society actors (health professionals, associations, families of patients, other scholars) exemplify the difficulties and dilemmas that can arise in similar situations. The book presents the solutions that were adopted, opening the way to further reflection and raising questions that touch on the practice of all social researchers.