Bethany Hipple Walters*, Institute of Health Policy and Management, Erasmus University, Rotterdam, Netherlands Track: Research Presentation Topic: Building virtual communities and social networking applications for patients and consumers Presentation Type: Poster presentation Submission Type: Single Presentation Last modified: 2012-09-10

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Background
Websites and forums provide spaces for individuals to gather social support through the telling of their experiences. Past research has shown how online illness narratives serve as the means for patients to explain their illness, give advice and discuss treatment options. Through the study of these illness narratives, health care providers and the research community can learn how and what patients wish to share with their online health community, how patients view their illness and treatment, and what patients see as gaps and/or success.

Objective
The purpose of this research is to explore what, how, and why young women describe the experience of treatment for an eating disorder, as expressed by the young women themselves in the ‘experience stories’ section of a Dutch language eating disorder support website, Proud2BMe.

Methods
This study took place on the Proud2Bme website. All of the content analyzed for this article is open to the public without a log-in. Express permission to use to content was given by one of the founders of the site. ‘Experience stories’ were included if they had been written for Proud2Bme between July 11, 2011 and the first story. The analysis of the ‘experience stories’ was theme based. Each story was subject to content analysis (Krippendorf 2004), in which content from the ‘experience stories’ and their comments were classified into narrative themes.

Results
Control is a dominant theme. In many ways, eating disorders can be understood to be conditions of ‘disordered control’. This control manifests itself in a variety of ways – control over a life that feels out of control, controlled by a compulsion to eat/not eat, control of and by the treatment process.
I was a control freak, but I was really taken over by my eating disorder. (Story 1)
Many of their stories served as a warning for others in the online community about the control that both the eating disorder and the treatment exerted over them.
I had to go into care with the mental health care. Every week, sometimes twice a week, I had to go there and every time I was weighed and measured. (Story 2)
Other stories tell of gaining freedom from the control of treatment and of their eating disorder in a possible effort to inspire others in their online community who may be undergoing treatment.


Conclusions
While control has long been understood to be an issue for those with an eating disorder, this research adds to the knowledge base; as these stories were written for young women to other young women, we can understand how control plays a part in their own personal narratives and in the stories that they want to share with their online community. The framing and reframing of their stories allows the young women to take control of their illness and treatment stories in a very public way. The issue of control is has spread from the eating disorder to the manner of its disclosure– an open website for those with an eating disorder.