This past week was Eating Disorder Awareness Week in Canada, which is really like any other week in my world. A week of reminding people that eating disorders don’t only impact young, white, thin, cis, hetero girls, and that when treatment doesn’t work, people aren’t failing – treatment is failing them. A week of calling for systemic changes to support a world where more people’s bodies are made welcome. A week of reminding people that all the research into biochemistry and genetics in the world will not convince people that they need to make space to hear people’s suffering, regardless of its origin (necessary caveat – I’m not saying it shouldn’t be done, I’m just saying we need to mobilize research knowledge or it just remains research knowledge and the status quo marches on).
Given that there’s actually a specific ‘reason’ to get on my soap box, I’m emerging from dissertation land to write about an article I came across recently about understandings of recovery and care amongst people with eating disorders. I could likely speak or write for hours about my issues with how people with eating disorders are framed as resistant, hostile, or unmotivated to seek treatment, and about how we lack a strong definition of what “recovery” means. This article combines the two to explore ways of better supporting people who might not normally seek treatment for their eating disorders.
Recovery and Care
Musolino, Warin, Wade, and Gilchrist (2016) situate their study in relation to something I’ve written about many times: the fact that there is still no agreed-upon definition for recovery from an eating disorder. They also highlight a recent move in mental health toward recovery-model informed care; that is, including people with lived experience in defining what recovery is and how to get there. Of course, this still rarely plays out in relation to eating disorders specifically. People with eating disorders, at least in North America, are rarely included in the development of the services meant to serve them, and we lack significant community supports and services for these folks.
It seems, however, that Australia and New Zealand at least are setting the stage for change in this regard. The authors describe guidelines developed for eating disorder treatment in Australia and New Zealand that include a stipulation that:
“Care for people with eating disorders should be provided within a framework that supports the values of recovery-oriented care”
This is encouraging and perhaps builds on the work of Dawson et al., who highlight some of the natural affinities between eating disorders and the recovery model (I described this article in more detail in this post), including the need to match treatment models and support with individuals’ needs and contexts. People with eating disorders are more likely to recover when they feel supported in and outside of treatment, when they think that treatment will be effective, when they feel empowered to recovery, and when they think recovery is possible – all of which fit with a recovery model orientation.
Musolino et al. explore the multi-faceted nature of recovery, highlighting how different pathways yield different recovery expectations and experiences. For instance, they explore how some people recover without treatment. They also note that people’s contexts including their gender and culture can significantly impact what they think “recovery” is and what it looks like. They specifically state that though the recovery model might provide a spring board for centralizing patient points of view on what treatment and recovery will look like:
“the recovery model does not currently engage with people’s cultural perceptions and experiences of eating and care, despite the aim of recovery-oriented treatment being to encourage people to seek professional health care and practice self-care” (p. 2)
In other words, eating disorder treatment guidelines frame culture as more of a variable than an experience through which people’s encounters with care are filtered. Accordingly, the authors looked at how people experience eating disorders in relation to their cultural experiences (in and outside of dominant culture) – and how these experiences subsequently impact their approach to recovery, including their decisions to seek or not seek professional help on the path to recovery.
To find out more about how people orient to care and recovery, the researchers interviewed 21 women who had not been diagnosed with eating disorders, or who had been diagnosed and not sought treatment for their eating disorders. In addition to these interviews, they did field work (observations and psychological evaluations).
The researchers also administered the Eating Disorder Examination in order to better understand whether this group, though undiagnosed and untreated, met diagnostic criteria for eating disorders and what they thought about the instrument used to diagnose eating disorders. Participants were also invited to write in a diary for 8 weeks. The authors used grounded theory to analyze the multiple forms of data.
The authors note that this was a difficult group to recruit – something I can relate to. Trying to find a group who is not generally recognized in the eating disorder treatment world as “legitimately” suffering, whose stories do not fit within the dominant narrative of who gets eating disorders, and for whom stigma around mental illness may go double (i.e., if dominant mental health stigma is supplemented by cultural stigma around seeking help from authorities) is a challenge.
Most (90%) of the participants met criteria for eating disorders, though only 6 had ever been diagnosed (with anorexia nervosa); 19 participants had not sought or received diagnoses or professional help. At the time of interviews:
- 81% fit criteria for eating disorder not otherwise specified
- 2 individuals fit criteria for anorexia nervosa
Participants described their eating disorders as providing safety, comfort, control and familiarity. Seeing a therapist, then, indicated a risk or a threat. At times, the perception of safety in the eating disorder also presented recovery as an impossibility or as undesirable.
In addition to the safety provided by the eating disorder, participants described how recovering in a society that prizes thinness and fitness is profoundly challenging. As the authors note, the sheer number of health dictates we all receive every day made recovery seem like a process of wading through piles of information. Being called upon to “take care of oneself” but receiving conflicting and continually changing information about how to do so builds confusion and can lead to overwhelm. Maintaining eating disordered behaviour is also often praised in a society fixated on promoting dieting, extreme exercise and “clean eating.”
Why Does it Matter?
Other studies might frame the perception of eating disorders as safe or the challenges of recovering in a society fixated on fixing bodies as inconsequential, and suggest that these orientations will disappear once nutrition is restored. Musolino et al., however, highlight how these themes contribute to our understanding of why people might “resist” professional treatment. In terms of social capital (the benefits a person derives from their position in society), bodies engaged in continual pursuits of “self-discipline,” as eating disorders are often framed from the outside, receive social benefit. Giving up this safety and social acceptance is not easily done. Particularly when a person’s body is otherwise marginalized – along the lines of race, class, ability, gender, etc. – enacting thinness and/or fitness and discipline can provide a kind of protection against further discrimination.
None of this is to say – and this is important – that people choose to have eating disorders, want to keep them, or don’t suffer when they have eating disorders. What putting eating disorders into sociocultural context does, however, is highlight just what we are asking of people in recovery in this time and place, in which so many public resources are devoted to preventing the kinds of bodies that they might recover into. The uncertainty of what kind of body might result when one stops eating disordered behaviour – and the impact that living in that body might have – can be enough to sustain disordered relationships with food.
This knowledge might be mobilized, the authors suggest, to foster stronger therapeutic relationships with patients. Understanding what patients are being asked to give up – particularly if their eating disorder is currently bringing them widespread praise from those less aware of the physical, mental, relational, and emotional tolls that eating disorders wreak – might help caring professionals better understand and manage what is often framed as “resistance” and met with increased surveillance and coercion.
Moving beyond control to care, argue Musolino et al., is a key step in helping people with eating disorders engage with therapy. Again, this speaks to a logic in which we consider people with eating disorders not simply resistant young girls who need to be controlled, but rather complex human beings living in a constraining world who need to be heard.
Musolino, C., Warin, M., Wade, T., & Gilchrist, P. (2016). Developing shared understandings of recovery and care: a qualitative study of women with eating disorders who resist therapeutic care. Journal of Eating Disorders, 4(36).