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DOI: 10.1177/1363459315574118
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Proud2Bme: Exploratory
research on care and control
in young women’s online eating
disorder narratives
Bethany Hipple Walters
Erasmus University Rotterdam, The Netherlands
Samantha Adams
Tilburg University, The Netherlands
Tineke Broer
The University of Edinburgh, United Kingdom
Roland Bal
Erasmus University Rotterdam, The Netherlands
Abstract
Illness narratives have been studied to understand the patient’s point of view. These
narratives are becoming more prolific, accessible, and specialized, thanks to the
improved Internet access and the growth of health-specific online communities. This
article analyses illness narratives posted on a Dutch eating disorder website hosted by
a treatment centre. Specifically, we look at ‘care of the self’ and ‘control’. The young
women wrote about controlling situations with disordered eating as a self-care tool,
about being controlled by the disorder and about regaining control over the disorder.
The website, with the opportunity for constant, unseen supervision, coercion through
comments, and steering through edits and comments, revealed various modalities of
control. While issues of control and eating disorders have been explored by others,
little work has been done on how the control experienced by the young women
(coercion on the individual, the body as the object of control, and the modality of
pressure and supervision) interact, how control is presented in stories for a recoveryCorresponding
author:
Bethany Hipple Walters, Erasmus University Rotterdam, Burgemeester Oudlaan 50, 3062 PA Rotterdam,
The Netherlands.
Email: walters@bmg.eur.nl
574118HEA0010.1177/1363459315574118HealthHipple Walters et al.
research-article2015
Article
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2	Health 
focused, monitored website, and how the website directs the content. As recoveryfocused,
therapist-led website is likely to continue growing, understanding how and
why young women talk about care and control in the context of such websites is an
important topic.
Keywords
experiencing illness and narratives, gender and health, research methodology,
technology in health care
Introduction
I especially want to make it clear in my story that I have muddled along with all my problems
for many years. That’s why I am so pleased with Proud. If I had had such a website when I was
a teenager, it all might have turned out differently. No one had heard of BED [Binge Eating
Disorder], even dieticians and doctors knew nothing about it, and here [on the site] you can get
lots of information from professionals. You can get so much support from the users and from
the experienced experts; it takes you out of that damned isolation. (Story 12)
Why do people tell stories about their lives, including the stories of their illnesses? Where
and why do people tell these stories? What does it mean when the stories are written and
posted online on a recovery website, rather than spoken to a therapist or researcher?
What do the stories tell us, beyond the stories themselves?
This article explores these questions through the study of an online eating disorder
support community hosted by a treatment centre. Specifically, we analyse the discourse
that the authors used when writing stories of their eating disorders, especially with regard
to how different manifestations of control and discipline impact their lives, eating disorders
and participation in their online community. We also look at how the stories themselves
are steered and disciplined by the structure of the site, site participants and staff
from the hosting eating disorder treatment centre. For the purpose of this article, we
analyse the stories using Foucault’s definition of discipline, which is composed of multiple
modalities of control: ‘subtle coercion’ on the individual, the body as the object of
control, and ‘uninterrupted, constant’ pressure and supervision (Foucault, 1995). We
analyse the different forms control take in and through the stories, especially but not
solely focusing on the role of control in eating disorder illness narratives.
Background
In the Netherlands, as a recent review of research has shown, rates of anorexia nervosa
have increased to 7.7 per 100,000 in 1999 from 7.5 in 1985; young women (15–19 years
old) make up 40 per cent of all cases of anorexia, with young men representing less than 1
per 100,000 (Smink et al., 2012). Rates of bulimia nervosa dropped in the same period,
from 8.6 per 100,000 in 1985–1989 to 6.1 in 1995–1999; however, the data also revealed
that the age of onset (or diagnosis) of bulimia nervosa has been dropping as well, with
diagnosis occurring at ages 15–25 years rather than, as was previously, 25–29 years (Smink
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Hipple Walters et al.	 3
et al., 2012). Less information about rates of Eating Disorders Not Otherwise Specified
(EDNOS) and Binge Eating Disorder (BED) is available for the Netherlands; in the case of
BED, an article by Preti et al. (2009) revealed a lifetime prevalence of 1.9 per cent of
women in six European countries, including the Netherlands. Despite the relatively high
prevalence, few Dutch young women with an eating disorder ultimately receive mental
health treatment (Van Son et al., 2010). Many young women delay treatment for their eating
disorder due to shame, waiting lists or poor treatment centre match (De la Rie et al.,
2006; Escobar-Koch et al., 2010; Hayaki et al., 2002). Early identification and treatment
for eating disorders are highly desired by the eating disorder treatment community.
Alternative methods of reaching and treating young (wo)men with eating-disordered
behaviour, such as recovery websites, are a means of reaching this population.
Eating disorder treatment centres, recovery advocates and young women supporting
eating-disordered behaviour have been developing websites for those with an eating disorder.
Pro-anorexia and pro-bulimia websites have been developed and visited by (primarily)
young women who want to continue or are continuing in their disordered eating (see Norris
et al., 2006, among others); recovery/support websites include those hosted by eating disorder
treatment centres (as was studied for this article). As Rich (2006) found in her study
of anorexic patient narratives, young women with eating disorders often feel most understood
when interacting with others with an eating disorder, whether online or in-person.
This interaction comes in the form of participating on message boards, reading postings,
writing poetry, sharing photographs and/or storytelling, such as sharing their experiences
with illness, treatment and/or recovery using a traditional story arc (having a beginning,
middle and end; chronological; intended for an audience) (Greenhalgh and Hurwitz, 1999).
(Online) illness narratives
Storytelling is communication of lives and experiences and of impressions and interpretations.
The importance of narratives, as Hyden (1997) illustrated, ‘lies in its being one
of the main forms through which we perceive, experience, and judge our actions and the
course and value of our lives’(p. 49). When people tell the stories of their illnesses, especially
of chronic or long-term illnesses, they are using it as a means to understand, explain
and interpret their illnesses in relation to their life and life history (Williams, 1984).
These stories are a potentially fertile source of research data; when reading and interpreting
unsolicited illness narratives, researchers, clinicians and policy-makers have the
opportunity to understand the patient experience when it is not directed towards a clinician,
possibly revealing a more unfettered story of illness, treatment and/or recovery
(O’Brien and Clark, 2012). As Greenhalgh and Hurwitz (1999) noted, illness narratives
invite interpretation by the readers, whether those readers are others with a similar illness,
clinicians or researchers. In research, illness narratives can help to focus on patients’
needs, confront prior knowledge and help form new theories and hypotheses about care,
treatment and patient experiences (Greenhalgh and Hurwitz, 1999). Yet, benefits of illness
narratives to research are not limited to these points. As will be shown in our
research, analysing and interpreting online and unsolicited narratives can also substantiate
research conducted in other ways (such as interviews, surveys, and observations);
allow researchers to gain information about vulnerable, hard-to-reach and/or hidden
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populations with little impairment to that population; and conduct research in and on
new locations of health care (websites, YouTube and Twitter).
Formal illness narratives have been traditionally part of medical history taking as an
attempt to understand patient experiences with illness, especially chronic illnesses (Bury,
2001; Greenhalgh and Hurwitz, 1999). Websites and forums provide fresh spaces for
individuals to gather social support through the telling of their experiences, as seen in
research on online eating disorder forums (McCormack, 2010) or in social networks
(Juarascio et al., 2010), as well as in research done on online weight loss support groups
(Hwang et al., 2010), HIV/AIDS online communities (Mo and Coulson, 2008) and infertility
sites (Malik and Coulson, 2008). In the eating disorder literature, it is clear that
writing is a form of personal interpretation and analysis of the causes and recovery from
eating disorders, whether guided by therapists (Schmidt et al., 2002), for oneself (Hay
and Cho, 2013) or for a community of peers online (Darcy et al., 2010; Dias, 2003; Riley
et al., 2009). (Online) writing allows for the creation/manipulation of the self and personal
histories in a public forum, as seen in work done on online gender presentation
(Van Doorn et al., 2007), for personal empowerment (Pitts, 2004), for accountability
(Leggatt-Cook and Chamberlain, 2012) and for self-disclosure.
Internet-based resources provide flexibility for people to learn how to tell the story of
their illnesses and to seek support through reading others’ stories; researchers suggest
that this online storytelling has implications for how people understand health (care) and
implications for the new politics of disease and of the body that emerges in online communities
of practice (Akrich, 2010; Ziebland and Wyke, 2012). By posting stories online,
the users form part of online communities, gaining and offering support, setting community
norms, educating others, forming and shaping identities, and sharing experience.
For many members of online communities, the distinction between online and offline
worlds is blurred, with online activities affecting offline ones. Online stories offer the
possibility to understand online communities, site dynamics and norms, and issues
behind the illness narratives, including those of control.
Control and eating disorders
While the term ‘eating disorders’ encompasses a variety of physical and mental health
problems (such as BED or excessive exercise), two of the more commonly researched
eating disorders are anorexia nervosa and bulimia nervosa. Control is expressed differently
in the minds and bodies of those with bulimia or anorexia. As research on young
women with anorexia shows, the women saw themselves as attempting to control and
process their lives by reducing food intake (Skårderud, 2007). Other work with young
women with anorexia revealed that bodies were seen as the only thing that women could
control by not eating, but noted that these behaviours quickly spun out of the women’s
control to the point where the anorexia became an identity (Malson, 2004). The disordered
thinking was embodied, manifest in the young women’s physical forms. Young
women with anorexia were aware that they were controlling their bodies due to personal
unhappiness, yet took pride and found joy in the control that they exerted; control over
the body and emotions was found to be more important than changes in appearance
(Dignon et al., 2006; Malson, 2004). Young women with bulimia reported feeling out of
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control of their eating and sought to regain control through purging (Fairburn and
Harrison, 2003), as well as literally and figuratively ridding themselves of bad feelings
by vomiting or using laxatives (Polivy and Herman, 2002). For those with anorexia,
bulimia, BED or EDNOS, what the young women were feeling and thinking impacted
their bodies (and vice versa).
Sex and gender play strong roles in eating disorders and issues of control. While growing
numbers of young men are developing eating disorders, eating disorders are thought
to predominantly impact young women in the Netherlands at this time (Smink et al.,
2012). It is important to keep in mind that female bodies are disciplined differently than
male bodies; eating disorders reflect this social and personal disciplining of the female
body. As King (2004) noted, the ‘female body exemplifies Foucault’s arguments about
discipline’, in that the female body is frequently disciplined into socially acceptable forms
in ways specific to women (p. 30). This disciplining has happened over time, Bordo
(1997) wrote, as women’s bodies have been historically subject to more cultural manipulation
of bodies than those of men, whether through physical manipulation of the body
through eating disorders or through the limiting of education and career opportunities.
The language of control is pervasive in discussions of eating disorders; this discourse
is found in research on eating disorder treatment, on pro-anorexia sites, and on the experiences
of young women with eating disorders (Bell, 2009; Bemporad, 1996; Claes et al.,
2012; Gremillion, 2003; Malson et al., 2008, 2011; Riley et al., 2009; Roth andArmstrong,
1990). This discourse is also present in eating disorder narratives in culture and media as
well, including in the Netherlands; journalist Maartje Laterveer wrote, in the June 2014
issue of Dutch Vogue, ‘I thought that I had everything under control. But I had long relinquished
control to an eating disorder that I did know about, if I was honest’ (p. 154).
While control, eating disorders and young women have long been associated, there are
gaps in this understanding. Less is known about what types and how the different modalities
of control act and interact in young women’s written, unsolicited illness narratives.
In this article, we used a novel method of data collection to gather and analyse how
users of an eating disorder support website wrote about control in the stories of their eating
disorders and what the impacts of control were on the authors, their illness narratives
and the treatment providers. As the illness narratives analysed here were posted on a
monitored eating disorder recovery website, the research presented in this article is an
opportunity for readers to understand how the online community, recovery support website,
and illness narratives (inter)act in regard to the modalities of control, as well as to
understand how the data collected online fit with the larger literature on eating disorders
and control. As less was known about how online communities form a new arena for discussing,
exerting, and tinkering with issues of control, this research shed light into the
growing world of monitored online illness communities. In addition, this article illustrated
a deeper understanding of how the types of control interact and serve, ultimately, to discipline
the lives of authors, the stories that they tell and the website that they participate in.
Theoretical underpinnings
The theoretical underpinnings of this article stem primarily from the work of Foucault on
the technologies of power and, secondarily, on his work on the technologies of the self.
As Foucault (1988) noted,
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technologies of power … determine the conduct of individuals and submit them to certain ends
or domination, an objectivizing of the subject, [while] technologies of the self … permit
individuals to effect by their own means or with the help of others a certain number of operations
on their own bodies and souls, thoughts, conduct, and way of being, so as to transform
themselves in order to attain a certain state of happiness, purity, wisdom, perfection, or
immortality. (p. 18)
For a better understanding of technologies of power, we refer to Foucault’s (1995)
work on the penal system; Discipline and Punish explored how bodies and minds are
shaped to internalize discipline by external actors, including the people in and the architecture
of schools, prisons, hospitals and churches. This shaping comes via initially
external forms of discipline, which are exercised through different modalities of control:
discrete coercion and steering through, for example, creation of daily routines, the creation
and discovery of the body as a subject of power such as through medical and prison
structures and (seemingly/potentially omnipresent) surveillance through panoptic physical
structures (Foucault, 1995). As seen in the literature on online narratives and in the
literature on eating disorders, one of the more remarkable ways in which the technologies
of power can be seen is through surveillance (Conrad, 2009; Dryburgh and Fortin,
2010; Leistert, 2012; Rich and Miah, 2009; Walstrom, 2000). This surveillance stems
from multiple origins: the change towards new forms and implementations of surveillance
within health care, especially in non-acute illnesses (Armstrong, 1995); the use of
surveillance in eating disorder treatment in specific (Gremillion, 2003); the selfsurveillance
inherent in having an eating disorder (Bell, 2006); and the surveillance and
governance of online activities, including those related to health care (Eysenbach, 2011;
Walstrom, 2000). Gender plays a key role in the surveillance and control of bodies,
thoughts, and activities. As feminist scholars have pointed out, women’s bodies are
watched (and, resultantly, controlled) in different ways than are those of men – by their
families, society at large, the medical profession, and themselves (Bordo, 1997; Conrad,
2009; Corones and Hardy, 2009; Gestaldo, 1997).
The watching of one’s self is a form of self-care and an aspect of technologies of the
self. Technologies of the self, understood simply, is working on one’s self, often for selfimprovement
and taking care of one’s self; without observing and knowing oneself, it is
difficult, if not impossible, to care for the self. Here, writing plays a key role. As noted
by Foucault (1988),
Writing was also important in the culture of taking care of oneself. One of the main features of
taking care involved taking notes on oneself to be reread, writing treatises and letters to friends to
help them, and keeping notebooks in order to reactivate for oneself the truths one needed. (p. 27)
Writing and re-reading illness narratives provide one with the opportunity to take care of
the self, to self-improve and to communicate those lessons learned about self-improvement
to others. This writing is not, as Foucault (1988) showed in The History of Sexuality, necessarily
done in isolation but is conducted as part of a self-improvement culture. The self, in
many ways, is developed through care, whether through writing, self-care activities, or
interacting with others. The technologies of power and the technologies of the self are
interwoven in the lives and stories of the authors. While writing allows for the further care
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and development of the self for oneself and for/in one’s community, this writing is not just
a technology of the self but is a technology of power as well. As our research will show in
the following sections, the self is cared for and created through the online writings and
postings of the young women.
Methods
The stories reviewed in this research were posted on a Dutch eating disorder support
website called Proud2Bme. The Clinical Director at the Ursula Centre for Eating
Disorders, other professionals at the Ursula Centre for Eating Disorders and patients
helped to develop Proud2Bme in 2008 to fill a gap in educational and supportive services,
including providing an alternative to pro-anorexia sites, for the growing number of
young women with eating problems.
As a currently active online support and education centre, Proud2Bme promotes positive
self-image, healthy eating and treatment for eating disorders through participation in
forums, chats with dieticians and psychologists, news on eating disorders, inspirational
messages, beauty and fashion pages, blogs written by site participants, and stories about
living with eating disorders. While the website states that it is a resource for everyone,
most of the postings focus on information of interest to women in high school and at
university, such as healthy eating and team sports, eating disorders and school stress, and
advice on how to tell parents, teachers and friends about an eating disorder. The site’s
look and feel is also directed towards young women, featuring photographs and vector
images of younger looking women on a pink background. These cues, as well as a statement
on the webmaster’s ‘About’ page, have led us to believe that the site was (and is)
targeted towards youths and young adults. Some of the articles are directly written to
family members of those with an eating disorder or are tagged with the tag ‘parents’.
While the site contains information about eating disorders with formal diagnosis criteria,
such as anorexia nervosa, bulimia nervosa, and BED, much information is also provided
about sub-clinical eating disorders or problems, atypical disorders such as excessive
exercise or orthorexia, and other issues with food, body image and mental health, such as
cutting or depression. According to the site’s ‘About’ page, over 200,000 unique visitors
access the website each month; over 20 volunteers work on the website, as well as 2
website editors who have experience in eating disorders, 2 other part-time employees,
and various psychologists and dieticians from the centre. The website has been advertised
in the media; has active YouTube, Instagram, Pinterest and Twitter accounts; has an
app; and is linked off of multiple mental health and lifestyle websites. The website has
spawned a US version as well.
The stories were divided into four categories on the site: experience stories, interviews,
famous and special people, and the psychology of … (www.proud2bme.nl).1 As
the site was and is primarily targeted to young women and their families, we have
assumed that the majority of the stories analysed were written by young women (which
we define as high school and university-aged). The ‘experience stories’ were and are
stories written by young women about their life with an eating disorder, including the
development of the disorder, revealing the eating disorder to adults in their lives, treatment
paths, relapse and current circumstances. Some, but not all, of the analysed stories
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contained photographs of the authors, supporting the assumption that the majority of the
authors were young women; one story out of the reviewed stories had a photograph of a
young man as the author, while the remaining had photographs of young women, of
nature scenes, or of inspirational messages. While some aspects of the site require the
user to create and use a log-in, much of the site, including the stories analysed in this
article, was and is open to the public.
These data were gathered as part of a larger study. The Ethics Board of the Erasmus
University approved the data collection of an overarching study. For this article, we specifically
focused on the Proud2Bme website. We took various steps to ensure ethical data
collection, following the example of other Internet health researchers (Murray and
Sixsmith, 2002; Robinson, 2001). For this article, data were collected exclusively from
the public pages of the website. As the stories were posted on the public pages of a frequently
visited website, we assumed that the authors did not solely write for a private
community (as might be inferred in some forums and sites that require a log-in) but were
writing for an audience. As Hookway (2008) noted about blogs, ‘blogging is a public act
of writing for an implicit audience’. In addition, the centre’s director approved data collection
on the Proud2Bme website. The quotes from the stories, which were frequently
anonymous when posted on the site, have been further anonymized, with no reference to
the title of the story or locations. Translation from Dutch to English provided a further
level of anonymization. While issues might arise from translation, as the focus is on narrative,
efforts were taken to reduce these issues; translation was done by the first author
(B.H.W.) (a native English speaker) and verified by a native Dutch speaker. Translation
also allowed for the checking of quote relevancy and coding.
Procedure
We reviewed all ‘experience stories’ and the comments that were written between 4
November 2009 (the first story posted on the site) and 11 July 2011 and collected data
from the stories, which were coded into themes. However, the comments were not analysed
for this article, as we were mainly interested in the presentations of the young
women on this site at this time, rather than in the interactions on the site; as well, we were
concerned about the anonymity of the comments. As the comments were tied to user
names, which were used for any comments that the website users posted, the comments
were less anonymous than the stories and not included in the analysis.
To be included in the study, the stories had to be written for and posted on the public
section of the site as ‘experience stories’; while the website had much more content and
grows continuously through the postings of website staff and users, we limited the data
collection to these stories, as the stories were on the public part of the website, were written
by users of the website and were (in principle) written as complete narratives. This
resulted in the collection of 94 ‘experience stories’. One of the 94 stories collected
focused on self-harm, rather than life with an eating disorder; this story was not included
in the analysis for this article. One of the included stories was written by a young man;
based on pronouns, names, gendered words (such as daughter, school girl), photographs
of the authors and the fact that eating disorders were and are more common among
young women, we assumed that the remaining authors were young women.
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While it was not fully possible to know exactly who each of the authors were (e.g. in
terms of class, age and background) and knowing that this can present challenges in terms
of how we were to read the data, the data were taken at face value. Taking the data at face
value allowed us, as researchers, to read what other users of the site were able to read,
including those who do not have a log-in. This was a useful attribute to our research; we
researched what the authors wanted to share with the public through writing and posting
their stories. However, this can also be a limitation.As the stories were posted anonymously,
it was not possible to contact the authors for additional information or clarification; just as
the users of the website were, we were left with the information that the stories revealed,
educated estimates of demographics rather than precise data on education, age, location and
unanswered questions. As we analysed the stories as they were posted online (rather than
stories of the young women told to us directly), further information and clarification were
not needed for our analysis. Since the young women wrote in Dutch on a Dutch website, we
were able to make a few important assumptions: that the young women had access to health
insurance, as coverage is mandatory in the Netherlands and in Belgium (two locations where
Dutch is commonly spoken); that the young women were writing for a Dutch-speaking
audience of primarily young women; and that the young women were writing for an audience
that was interested in eating disorders and eating problems, as the site where the stories
were posted promotes support for those with an eating disorder or eating problems.
By collecting data from a public support site for those with an eating disorder, we
were exploring control by using a fairly novel methodology: online-only data collection
from illness narratives. This exploration allowed us to understand how young women
posted about control, what they considered important aspects of their stories and how the
young women wrote for a monitored community; it also allowed us to be unobtrusive
(yet ethical!) researchers on a very sensitive physical and mental health issue.
Data analysis
The remaining 93 experience stories were analysed deductively as well as inductively; upon
reading the stories, we realized how ‘control’was one of the main themes in the stories and,
as a result, decided to focus on this theme more in detail using thematic analysis. All stories
were first read closely to establish general knowledge of the data. Each story was then reread
and coded into themes by B.H.W., based on the discourse and content of the stories.Amemo
sheet was made in Word by B.H.W. for each theme, and references to original material representing
that theme were recorded under each theme. The major themes uncovered in the
stories were present in the majority of the narratives in various ways; however, how these
themes were presented by the authors and analysed by the authors varied based on the context
of the stories. The data were iteratively analysed and reflected upon by B.H.W. and the
co-authors throughout the coding, translation, and writing processes.
Findings
Eating disorders and control
The young women used a variety of discourses when writing about control and their eating
disorders or problems, including disordered eating behaviour as a tool to control a
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disordered life, eating disorders that took control of life, treatment for eating disorders
and control, and regaining control while recovering from an eating disorder. This was a
major theme in many of the illness narratives and was often quite explicit in the narratives.
The eating disorder was sometimes described as a tool, as the young women wrote
of using disordered eating behaviour to govern their lives, circumstances, and/or emotions;
these tools were a technology of the self, even if the self-care was often registered
as self-harm by others:
The only thing I could do outside of my mom’s control was eating. I longed to have something
of my own so much and it’s just sad that apparently eating was my only way out. (Story 1)
I took up weight loss again, skipped meals, threw up and took laxatives. I was searching for
control, control that I couldn’t find in my life, but I found it in weight loss. (Story 2)
The young women wrote of using eating behaviours as methods of self-care and independence
from the direction and manipulation of others; they were governed by ‘the
control, guidance, sway and mastery of others’ (Rose, 1999: 16). Control was highly
sought after, whether control of eating or of body weight, as the second quote reveals.
This control can be understood as the ways in which their bodies were the objects of
control, as enacted by themselves to manage difficult situations. Eating/not eating/purging
was their ‘own’and was the control that was unavailable in other arenas of their lives.
However, this was a battle. Parents were often described as controlling the young
women and pushing young women into less eating-disordered behaviours. As a result,
the young women’s bodies and behaviours ‘became the issue of a conflict between parents
and children’ (Foucault, 1980: 57). The young women wrote of seeing their behaviour
as tools for controlling difficult circumstances and emotions, while family, friends,
or clinicians were reported to have seen the behaviour as an illness in need of medical
attention, thus creating a conflict over bodily control. This conflict, in some cases, continued
throughout treatment, as the young women wrote of resisting the efforts of parents,
teachers and friends to take part in treatment.
Writing, eating disorders and control
The young women’s stories followed a common narrative trajectory, starting with disordered
eating behaviour as a tool for controlling an unruly life, followed by awareness of
the behaviour as an eating disorder and an exploration of how the eating disorder took
control:
Weeks go by and it’s getting worse, until I go to the doctor in a panic. I couldn’t take it anymore.
I wanted to be myself again and it wasn’t working. The control over my own life was dominated
by something inside me and at that moment, I came back. The control that I thought I had
appeared to be no control at all. (Story 3)
What had been a set of tools to manage difficult situations was reclassified by the young
women on a public forum as a disorder; at times, this reclassification was seen as coming
from parents, rather than from the young women themselves. The authors of the narratives
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frequently used discourses of subjugation when writing of the disorder. The disorder
‘dominated’ them, despite their efforts and without their full knowledge. As seen in the
quote above, the disorder steered the young woman; the author wrote of ‘not being herself’.
This narrative and others revealed that eating-disordered behaviour was deeply
internalized, yet remained external to identities.
The narratives described the various paths the young women took towards recovering
from their eating disorder and recovering their identities, including via mental health
treatment and support from friends, family and members of the online community.
Sometimes, the writers noted that the path towards recovery was not chosen by the young
women but was chosen for them:
I had to go into mental health care. Every week, sometimes twice a week, I had to go there and
every time I was weighed and measured. I thought it was awful. My mother also weighed me
and I almost started to hate her for that. (Story 4)
The young women’s stories revealed various sources of monitoring, often through observations
of the metrics and behaviours associated with eating disorders; whether the
young women chose therapy or were pressed into it, this theme was common throughout
the narratives. As a result of this monitoring and observation, the young women interpreted
their bodies as the objects of external, clinically driven control.
This external monitoring and regulation of their bodies through weighing and measuring
was conducted by multiple actors, making the body the object of collective control.
The young women’s written narratives also documented how they were (not so subtly)
coerced into less disordered behaviour and their frustration with this process of coercion.
As was seen in the stories that the young women wrote for the recovery website, the bodies
and minds of the young women were shaped by the various processes of control, even
if the result was the young women ‘almost hating’ those who controlled and measured
them. These modalities of control shaped young women’s identities, which are ‘the products
of a relation of power exercised over bodies, multiplicities, movements, desires,
forces’ (Foucault, 1980: 74). This imparted a deeper understanding of how the young
women framed control and their eating disorders, treatment and recovery for their online
community.
The website and control
The website impacted the stories the young women wrote about their eating disorders;
this theme was an undercurrent in all of the stories. In Foucauldian discourse, the possibility
of being watched shapes behaviour; the guard does not need to be seen in the
Panoptic tower to change how prisoners act (Foucault, 1995). The eating disorder recovery
website, with its blinded watching, provided an excellent example of how observation
and monitoring changed what the young women wrote. This potential for constant
observation was a process of control on the stories that the young women wrote; it was
built into the architecture of the website through monitoring by health care professionals,
trained volunteers and other users of the site, and through Google Analytics, which collects
metadata on the registered site users, pages visited and time on the site. The site’s
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data collection policy was stated on the site’s privacy page, which was viewable without
a log-in. In principle, the architectural nature of surveillance was made clear to the
authors, but the users had no way of knowing if, when, or how their stories were read.
The stories and comments themselves were monitored by one of the founders of the site,
clinicians and/or site volunteers, with all mentions of weights, diet pill brands, and proanorexia
websites replaced with ‘xx’:
When I eventually lost weight again, they said that when I weighed xx, I had to be tube fed.
(Story 15)
At school, I didn’t eat any more; I didn’t find breakfast so necessary. So I actually ate 1 meal a
day, took xx, and exercised a lot. (Story 16)
By replacing weights and diet pill brands with xx, the stories were edited, removing
aspects that may have been significant to the young women. While the removal of taboo
content was clearly demarcated with ‘xx’, it was not possible to know who removed the
content. The content may have been removed by the site administrators, who monitored
the discourse on the site to ensure body-positivity and to ensure the stories followed the
site standards; the young women who wrote the stories may have removed the content
themselves to meet the site norms and support the recovery of the other site users.
However, this editing controlled the stories to the point of removing content that was
relevant to more deeply understanding the young women’s narratives.
The editing and steering of the stories was a continuous process. The stories did and
do not end after the young women has posted them, but were/are continually changed
through the comments sections, through adjustments in the location on the site and
through edits by the webmaster. The information posted on the website created a record,
available to be viewed at any time. As Nicoll (2008) noted in an exploration of e-learning
environments, through this online record, the website users and their information were
more open to observation, correction. and tracking. This correction came, in part, through
the redaction of banned information, which also served as a public warning to others
about the types of information deemed appropriate for the site.
Observation of online posting and activities by staff and users helped form the community,
as young women wrote of finding the stories of others as a useful and supportive
feature of the site. Through reading the words and looking at the photographs of others,
the young women were able to present information directly to their community to thank
other users, to present missing information or to support others. While this was implicit
in many of the stories, some of the young women explicitly addressed their reasons for
telling their stories in their illness narratives:
The reason that I tell my story here? People often think that when you have an eating disorder,
you are severely underweight. But you know, that is only a small part. Lots of people have
struggled unnoticed and died. It has nothing to do with how you look on the outside – fat, thin,
tall, short; anyone can struggle with it. I hope that people can come to see that you don’t only
have an eating problem when you can count your ribs, that it’s about what is in your head. I
hope that there is more understanding for people like me. (Story 9)
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Hipple Walters et al.	 13
The fact that there are so many girls and boys on Proud2Bme that fight to get better made me
realise that I can also do it and more than that, I want to. I’m now stronger than before. I have
control back, the real control. When I look in the mirror, I see myself as I am again. I have a
handle on myself again. (Story 10)
The young women shared the lessons learned in their care of the self with the hope of
training others to care for themselves and to inspire others. No matter the intention when
posting the stories, the stories and identities expressed through the stories were (and still
are, as the stories are still available online at the time of writing this article) being controlled,
‘manipulated, shaped, trained’by the potential for comments, community norms,
and surveillance by multiple actors at different times (Foucault, 1995: 136).Although the
use of the word manipulation suggests a negative connotation, in this case it was seen by
the authors as a positive force, protective and supportive. This control was welcomed by
the young women; research on weight loss blogs revealed that comments from readers
can serve as an important source of motivation and collaboration (Leggatt-Cook and
Chamberlain, 2012). The young women posted their stories to be read, to be observed,
and were (to a degree) aware of the potential for shaping that posted stories possessed.
While the rationale for posting their stories was implicit in many of the narratives, a
few of the young women stated explicitly that their reasons for posting on the public
forum of the site were to support others and to try to influence (and perhaps steer the
direction of) external systems:
With this petition, I hope that I can really achieve something, so that everyone who comes after
me can get better treatment. I am grateful to Proud for giving me the chance to talk about the
petition. (Story 11)
I’ve had to come a long way to be able to write these words and share with you guys. I hope
that with my story I can make the way to help and make recognition of the illness somewhat
more traversable for those who have felt incomprehensible and alone because of cultural
differences. (Story 14)
As research about an online community for the discussion of severe acute respiratory
syndrome (SARS) shows, online writing can serve as a form of cultural and political
resistance (Gillett, 2007). The online platform of the eating disorder website was an
opportunity to point out and publicize the faults and gaps that they perceived in society
and/or the current health-care system, whether it is faults seen in the lack of treatment
options available, the impact of cultural issues on bodies, treatment and emotions, or in
the treatment that they have personally received. Similar to what was seen in Akrich’s
(2010) work on online communities for pregnant women, the young women who were
part of the community formed a type of activist group, collecting and sharing knowledge
about the condition, mobilizing others and forming an epistemic community, producing
new types of knowledge about their diseases and bodies. These young women were
working, through their illness narratives, to steer the future of eating disorder support,
treatment and recovery in their online and offline communities through attempts at coercion
of those in power, as can be seen in the efforts to influence policy-makers through a
petition.
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Discussion
While eating disorders have long been associated with control, this work presents additional
insights into the current research on control and eating disorders, as well as
research on illness narratives; this research reveals the different manifestations of control
apparent in young women’s stories about their eating disorder, such as control manifested
in and over the body, control and steering from outsiders like parents and treatment
providers, control over the stories on the website by various actors, and control
through oversight and supervision of the young women’s bodies and stories. Through
this work, we can see how young women wrote about control, about how these modalities
of control impacted their lives, and how the stories were shaped by the website.
While the illness narratives revealed many of the issues of control and eating disorders
that were previously uncovered by researchers, this article adds to the literature by
exploring the modalities of control, as well as by using data written by young women for
other young women. Through this research, it is clear that the modalities of control were
key features in eating-disordered behaviour, eating disorders, treatment, and recovery for
young women, even when the young women were writing for themselves and for their
recovery-oriented community. As online support communities are growing in number,
this research can provide insight into how control and stories intertwine to create disciplined
illness narrative authors.
Storytelling and control
Writing an illness narrative for an online community gives people the opportunity to
explain their illness to themselves and to others (Hardey, 2002); in the case of the young
women who wrote for the site, explaining their illnesses, offering support to members of
these community and clarifying myths related to eating disorders were stated rationales
for writing and posting the stories. The process of writing, however, may not have been
simple. As was seen in the young women’s stories, there was a crafting to written autobiographical
stories, a pattern that was followed, a language that was used, an intentionality
of what was revealed and what was kept back. The posted stories, like the young
women who posted them, were weighed and measured. As Bell Hooks (1999) noted,
Unlike therapy, where anything may be spoken in any manner, the very notion of the craft
suggests that the writer must necessarily edit, shape, and play with words in a manner that is
always subordinate to the desired intent and effect. (p. 14)
The act of writing an illness narrative allows, in general, for interpretation and reinterpretation,
framing, targeting to an audience, reframing, and tinkering until a desired
portrayal of the self and of their story is reached. This is especially true online, where the
writing and rewriting self-narratives are common (Hardey, 2002). This is in contrast to
posting on forums (such as on pro-ana sites), which often serve as quick message boards
between users and do not often reveal complete narratives.
By telling their stories as participants of an online community, the writers were developing
and strengthening relationships; as Frank (2000) wrote, storytelling forms, reforms
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Hipple Walters et al.	 15
and elaborates the relationships between the storyteller and the audience. In the studied
stories, this recursive relationship relied on writers, readers and the hosting institution to
develop. The development of the relationship between the writers and the readers could
be seen in the stories themselves, as the authors of the stories addressed their community
directly for support, with gratitude or with further insight into the disorder. Much as
Foucault (1988) stated, the young women were writing for themselves to care for themselves,
as well as for their community; the stories posted online were the modern ‘treatises
and letters to friends to help them’ (p. 27). The relationships formed through
storytelling helped shape the online community with its own norms, expectations, surveillance
structure, and language, including the language used when discussing the different
modalities of control associated with disordered eating, an eating disorder,
recovery, and posting stories online.
Control and eating disorders
The stories that the young women wrote for the eating disorder website were not linear
tales of how the young women got sick and then got better, but were highly complex
illustrations of lives (and the stories of these lives) in transition. Although control was
often characterized as a singular entity by the young women, the stories revealed that
control was not singular, nor enacted by one actor at only one point in time. Through
what the stories said and where they were and still are posted, it is clear that different
modalities of control, multiple actors and various forms of oversight impacted the
authors’ lives and stories. The narratives revealed that a complex network of relationships
between writing, agents, actions and control was formed; this network was, as
Foucault (1980) notes, a ‘highly intricate mosaic’(p. 62). This mosaic included the actors
such as the young women, the externalized eating disorder, their families, their treatment
providers, the members of the online community, the actions of treatment and recovery,
participating in the website, writing and posting their stories, and the ways in which
control was acted out in and around the young women’s lives and stories. The mosaic
was not static but was a complex, moving network of actors and actions interacting in
multiple ways over time in the stories and in the young women’s lives.
The segments of the stories about treatment revealed the mosaic of actors, actions
and the processes of control most explicitly. Treatment was described as involving the
body as an object of control, coercion, and near-constant monitoring. Through treatment,
the external, treatment-led modalities of control (such as weighing the young
women, monitoring what they ate, and restricting access to the bathroom to limit
purging) created discipline, which was exercised on the young women and their stories.
In the young women’s stories, this interplay of various modalities of control
(coercion on the individual, the body as the object of control, and that of pressure and
supervision) was conducted by different agents, with some actions revealing multiple
modalities of control. For example, by insisting that the young women ate defined
amounts of foods, the bodies were objects of control and the young women were pressured
to learn how to eat and were supervised by nurses, parents and others until they
ate. Sometimes, the young women wrote, there was a struggle against the supervision
by others to eat and coercion of the eating disorder not to eat. As was seen in the
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young women’s narratives, treatment was an effort to discipline bodies and minds to
improve the health of the young women.
Care for the self played an important role in the disciplining of the young women, as
the narratives reveal. Eating-disordered behaviour was often begun in an attempt to care
for the self, although the care of the self was seen as misguided by those around the
young women and, often later, the young women themselves. However, as this technology
of the self was understood to be more harmful than helpful, the young women were
often forced to seek outside help in caring for themselves. Treatment and recoveryfocused
activities were some of the primary technologies of the self, as one of the goals
of these activities was an internalization of the lessons learned from therapists, friends,
family, clinicians, other users of the site, and others with an eating disorder. These lessons
often focused on new ways to care for oneself, such as through healthier eating
habits, connecting with others on the recovery-focused website and through maintaining
a healthier weight (for those who struggled with extremely low weight). The young
women wrote of being disciplined into care of the self by treatment, recovery-focused
activities, and participating on the website.
In general, this discipline is not limited to eating disorders but can be seen in other
programmes intent on the modification of women’s bodies, as research by Cressida
Heyes revealed. In her exploration of a commercial dieting programme, the article
exposed the supervision of the body inherent in weight loss programmes, through the
shifting of authority from the body to the mind and through the disciplining from both
internal and external sources, such as weigh-ins and calorie logs (Heyes, 2006). This
observation and coercion were also true for the treatment of eating disorders, as the stories
from the young women revealed and as was shown in the literature (Bell, 2006;
Gremillion, 2003; Malson, 2004; Warin, 2005). This literature, much like the young
women’s stories, revealed that treatment was situated within discourses of class, culture
and gender, affecting young women’s bodies, lives and, in turn, illness narratives in very
specific, normalized ways. Much like research on diabetes has shown, the bodies and
actions of the disorder, treatment and recovery were embodied (Mol and Law, 2004);
eating/not eating, as shown in the example above, was how young women both did their
bodies, disorders and stories and were their bodies, disorders and stories.Bodies and
control were always present in the stories.
The notion of control that is pervasive in the literature on eating disorders was,
through the analysis of the stories, more nuanced and clarified; through this analysis, it
was possible to see that there are many versions of control (controlling what, by whom,
and through what mechanisms) that compete, overlap, and influence the young women’s
lives and stories. The young women’s illness narratives, intentionally or not, reflected the
language of and the literature on the controlling and disciplining nature of eating disorder
treatment. Whether this was due to the pervasive language of control surrounding
eating disorders or a manifestation of the language of control of the online community
was impossible to tell and, in all honesty, may not be that important; as Mol noted, attuning
and adjusting is needed, as control is an illusion and the elements involved in lives,
treatment and bodies are constantly moving (Mol, 2009). In this case, the attuning happened
in the young women’s lives and was reflected in their stories. What is important
was that the young women wrote of how treatment disciplined them. The origin of the
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notions of control in the stories is less important than the fact that it was important in the
young women’s lives and stories.
Insights for clinicians and those with eating disorders
For young women with an eating disorder, this research presents an opportunity to understand
how the academic community understands the issues of control surrounding an
eating disorder, storytelling about eating disorders and the impact of posting said stories
on a recovery website. This analysis also provides those with an eating disorder the
chance to see how others with an eating disorder present their stories and interact with
others on a recovery site. The translation of the quotes allows for those who do not read
Dutch to see how others in another culture experience an eating disorder. This article also
shows that insights from the stories posted online are valuable not only to those with an
eating disorder but also to a wider community, such as clinicians and researchers.
Clinicians and webmasters of recovery websites can benefit from this research by
reading the narrative reproduction of the lived experience of those with an eating disorder,
especially how those with an eating disorder experience control. As many young
women with eating disorders were (and are) subject to treatment involuntarily, it can be
useful to see how those with an eating disorder viewed the control exerted by treatment,
whether this control was steering to make healthier choices, the physical control over the
body by coercing eating or the control by family assisting in treatment. It is also useful
for clinicians to see how those with an eating disorder recovered from the control of the
eating disorder with the help from a virtual community, allowing the clinicians to see that
there are other, less traditional resources available to help. Webmasters can see how such
a website played a role in recovery and assisting those with an eating disorder in regaining
control of their lives and how the monitored nature of the sites (indeed, the controlling
of the stories) influenced the recovery-positive nature of the website. Through this
research, webmasters and volunteers gain insight into the pathology of the disorder from
the point of view of those with the disorder, as well as how the stories posted on the
website fit into larger understandings of eating disorders and recovery.
Insights for researchers of individuals with eating disorders
This research and article provide insights for researchers of individuals with eating disorders
by showing ways in which researchers can access the stories of those with an
eating disorder: by looking at the illness narratives that those with an eating disorder post
online on a recovery website. Collecting data from illness narratives provides researchers
with the opportunity to review the complete story that the authors want to share. By
analysing illness narratives posted online, the researchers have the opportunity to collect
data about personal experiences with an eating disorder outside of a research setting.
Through this method of collecting data, there is less research burden on a vulnerable
population, as well as the ability to collect data in an asynchronous manner. However,
ethical steps for online data collection should still be taken.
The analysis of control in the online eating disorder narratives also provides insights
for researchers on aspects of control and discipline. While control is often treated as a
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singular issue, our research reveals the benefits of nuancing the types of control, as well
as understanding how these types of control interact and discipline. By taking a more
nuanced understanding of control, researchers have the potential to explore underresearched
or ignored aspects of control. This more nuanced look at control also benefits
researchers through giving them the possibility of deeper insight into how discipline is
created and enacted through different modes of control. Looking at control in this way
may help researchers, for example, to analyse how disordered eating can be a form of
self-care and how treatment (in a broad sense) can function to change the ways that different
modes of control play in the lives of people with eating disorders.
Conclusion
Through this work, we laid a foundation for future endeavours concerning control, especially
in regard to online illness narratives and eating disorders, as well as showed that
the findings gathered through the novel data collection of analysis of online eating disorder
illness narratives conform with the larger eating disorder and control literature.
This research illustrated the technologies of power and of the self in how the young
women and their stories were shaped by themselves, by the externalized eating disorder,
by parents and treatment providers, by the structure of the website, by the website readers,
and by members of the eating disorder treatment centre. This coercion was not unidirectional;
as the stories revealed, some of the young women used their stories to raise
recognition of cultural issues and eating disorders and to reduce gaps in knowledge surrounding
less common eating disorders such as BED (as seen in the quote at the beginning
of this article). The research also revealed the different ways young women wrote
of their bodies as objects of control for an audience of their online peers. In addition, we
can see that the structure of the website supervised and surveilled the stories through
Google Analytics and through the constant availability of the stories; the young women
who wrote them did not know when, if or by whom their stories were read. These modalities
of control served to discipline the young women and their stories into acceptable
forms.
One of the important findings of this research is that the processes of control put forth
by the website had a large impact on the young women’s stories and lives. As online support
communities are growing for those with eating disorder, understanding how the
processes of control affect the lives and stories of those with an eating disorder has the
potential to improve care both online and offline.
Limitations
This research has a few limitations. As the data were collected from anonymous stories
on the public portion of a website, it was not possible to contact the authors for further
information and clarification. The stories were posted by Dutch authors and were written
in Dutch; however, the analysis revealed that the analysed data posted on the site were in
line with data collected by other means (interviews, document analysis, and focus
groups) and with data from young women from other countries, such as the United
Kingdom (see, for example, Malson, 2004) and the United States (e.g. Gremillion, 2003).
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Hipple Walters et al.	 19
Acknowledgements
The authors would like to acknowledge Rik Wehrens for his readings of the article, AnneLoes van
Staa for her suggestions on coding, and ZonMw for their funding of the disease management programmes
and for the funding of this (and future) analysis of those programmes (ZonMw project
number 300030201). Special thanks to the young women who write on the site and the Ursula
Centre for Eating Disorders for permission to analyse these texts. We would also like to thank the
anonymous reviewers of this manuscript for their thoughtful and improving comments.
Funding
The author(s) disclosed receipt of the following financial support for the research and/or authorship
of this article: This research was funded by ZonMw (the Netherlands Organization for Health
Research and Developmetn) as part of a larger research study of disease management programmes
(ZonMw project number 300030201).
Note
1.	 While the stories are still available on the website, the categorization has changed.
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Author biographies
Bethany Hipple Walters is a PhD candidate at the Health Care Governance group at the Institute
of Health Policy & Management at Erasmus University. Her research focuses on the treatment of
chronic disease and integration of programs into established medical systems.
Samantha Adams is assistant professor of eHealth at the Tilburg Institute of Law, Technology and
Society. Her research focuses on the relationship between ICT and health(y) practices. Special
points of interest include the normativities of technologies, changing delineations between health
and illness, use of social media for providing patient-centered care and the development of qualitative
research methods for studying these dynamic topics.
Tineke Broer is a researcher in Science and Technology Studies, conducting research on the intersection
between psychological research, mental health care, health policy, and the neurosciences.
She is a Research Fellow at the University of Edinburgh, working on a Leverhulme Trust research
on the consequences of the neurosciences for policy and for families.
Roland Bal is the chair of the Health Care Governance group at the Institute of Health Policy &
Management at Erasmus University. His teaching and research focus on science-policy-practice
relations, quality of care policies and the development and use of ICTs in healthcare settings.
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