Websites that bring together people with eating disorders are often put in the dock. The reality is quite different, according to recent research.
New Year’s Eve on December 24, then Christmas dinner, New Year’s Eve and New Year’s Day: the end-of-year celebrations are for many synonymous with moments of conviviality around a well-filled table. But for people with eating disorders (ADD), this period is more of a nightmare. Some may be tempted to go and share their experience or find comfort on a site bringing together other patients with these disorders. Often labeled “pro-anorexia” these sites are frequently criticized and portrayed as dangerous. But the reality is perhaps different from the commonplaces often relayed by the media, but sometimes also by caregivers or politicians.
Two sociologists decided to investigate in order to better understand who are those who create or consult these sites, and the nature of the links that are created “on line” between these patients. Paola Tubaro (CNRS) and Antonio Casilli (Télécom ParisTech / EHESS) led the project ANAMIA, and gathered the results of their eight years of research in a book. The “pro ana” Phenomenon – Eating disorders and social networks *, undermines many clichés.
Do not penalize the sick
“People who are going to a site for the first time with people with ACD may be shocked; we must admit that some content is disturbing. But our job was precisely to look beyond this facade, ”explains Paola Tubaro. To decipher what is playing out on the web between people with PDD, the Parisian researchers had to develop a methodology combining site analysis, questionnaires sent to their users, and interviews with some of them. “At times it was complicated, especially during the discussion on the amendment to the National Assembly,” recalls the sociologist.
In spring 2015, during the debates on the law to modernize the health system, an amendment indeed sparked a lively debate. It aimed to create a new offense, punishable by one year in prison and 10,000 euros in fines, targeting the authors of sites labeled “pro-anorexia”. Many voices were then raised to denounce a measure that would first and foremost penalize sick people. The measure had been voted in first reading by the deputies, rebutted by the Senate, reintroduced in second reading in the Assembly, before being definitively rejected. “We reacted against this amendment, and we were very happy to see that our research had been cited in the debates, and had helped to withdraw this text”, welcomes Paola Tubaro.
This event also convinced the two sociologists of the need to write a book, in French, on these sites which they studied thoroughly. “Knowledge is advancing on the subject, but it is not always easy, even for a parliamentarian, to read scientific publications in English. We wanted our results to become accessible to as many people as possible. “
Additional links
Far from clichés, the data collected by scientists made it possible to draw a profile of the authors and users of these sites. “No one ends up there by chance,” insists Paola Tubaro. Those who come are either patients or people who already have symptoms and are trying to put words to them. “
Belonging to an online patient community does not exclude “real life” sociability. The data indicate that most of the people interviewed have strong bonds with people around them; more than half are in a relationship. But many also stress that talking about their illness with those close to them is complicated, if not impossible. The links that are forged on the web are then solid and precious: “exchanging with peers on a disease is often reported as a benefit by those who belong to a community of patients. The same goes for the TCA, ”notes Paola Tubaro.
Regarding the apology for anorexia supposedly made by these sites, it would be far from being the norm. “It is above all suffering that is displayed. Yes people talk about what they experience, and share it, but there is no will to incite anything. And it should be noted that the sites have changed over the years, ”insists the researcher. Among the testimonies collected, some patients even underline the role of these “on line” exchanges in their care journey. Encouragement to accept hospitalization, support in the event of a relapse, sharing of addresses of centers or therapists.
Communicate for better care
While disseminating the results of research is important in changing society’s view of these behavioral disorders and those who suffer from them, it can also change the way in which carers are taken care of. The first results of the ANAMIA project were presented at the end of 2012, during a symposium at the National Library of France (Paris). From this moment, the two sociologists noted a change in their exchanges with certain health professionals. “They know the TCA much better than we do, that’s undeniable,” emphasizes Paola Tubaro. On the other hand, many of the aspects covered in our research were completely foreign to them. “
During their investigation, the researchers met doctors hostile to “pro ana” sites, without knowing much about them: “when in doubt, they prefer to adopt a precautionary principle, and advise against them,” notes the sociologist. However, she is delighted that over time, their work has changed attitudes. “Today, we can really envision the Internet becoming a means of enriching the healthcare offer available to these patients, and therefore another tool in the arsenal of caregivers”.
In the United Kingdom, the association beat has set up online discussion groups. A moderator is always present during the session. “It’s a concept that can help take the first step, for those who don’t dare go to traditional meetings. But above all, it is very useful for those who do not have access to it anyway. “
Because it is a fact, the offer of care for patients with TCA is not bloated in France. A patient even says that she came to work in Paris to have better follow-up. But living in the suburbs, she found herself again in a medical desert. The geolocation of the users of these sites thus indicates that a significant part of the demand for care remains unsatisfied. Far from the image of patients in denial and rejection of treatment, this survey brought to light “a community of people in distress, who encounter significant difficulties in accessing quality care, who come up against an incomplete understanding. of their condition, and which combine the need for support and the search for information, ”the authors conclude. An observation which, we hope, will positively inspire the next legislative proposals to “fight against anorexia” …
* Presses de Mines editions, 19euros
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