On Language in Eating Disorders Research, Treatment, and Advocacy

One of the things that I have been noodling on a lot lately is related to an anxiety I have in conducting critical feminist eating disorders research, particularly while also doing eating disorder advocacy work. Sometimes these roles require me to use different sets of language and terminology, while they share a broad goal of questioning the status quo of eating disorders research, treatment, and advocacy. As an advocate, I use the terminology often used in the public arena, relying on diagnostic language to call attention to the seriousness of eating disorders. As a critical feminist eating disorder researcher, I question the inherent reality of any eating disorder diagnosis (as I will describe, this is NOT the same as questioning the reality or seriousness of the suffering related to food and body), complicating the picture of what it means to have an eating disorder—and to be diagnosed and possibly treated for an eating disorder.

A white cake with a gold sparkly topper that says “love”

A white cake with a gold sparkly topper that says “love”

Sometimes these come into conflict as I work with colleagues who prefer vastly different terminology and orientations to eating disorders. I have been critiqued for advancing the “dangerous” view that people have the right to self-define around eating disorders and (particularly) recovery. This criticism hinges around the contention that “untruthful” representations of eating disorders and/or recovery would enter into the fray. I fear, sometimes, that I fall prey to the traps I critique in other scholarly work, such as post-hoc and largely theoretical explanations of the intertwining of body and society in recovery. That is, I am always thinking about how it might feel to read theoretical work about eating disorders if the reader is currently experiencing an eating disorder or has in the past. It felt important to write this post to clear up a few things about what it means to question diagnostic and other labels in eating disorders, including dispelling the idea that questioning these labels is the same thing as questioning the veracity of suffering or somehow downplaying the seriousness of these kinds of concerns.  

When I take issue with the term “eating disorders,” what do I mean? If I put that term in quotation marks, or I add a slash between the dis and the order (“dis/order”) in the way that some other post-structuralist and critical feminist scholars have done, does that mean that I am not taking suffering seriously? Why be so postmodern about it? Why question clinical labels at all? If I recognize the inherent reality of eating disorders, why take issue with naming this reality in clinical language? Wouldn’t it be easier to prescribe the same clinical interventions that have been prescribed for years, accepting that people will go into treatment, some will get better, some will develop new harmful experiences and traumas, and some will die?

One of my first big reads about critical feminism and eating dis/orders was a volume edited by Helen Malson and Maree Burns, Critical Feminist Approaches to Eating Dis/Orders (2010). This book continues to be one of my favourites for bringing complexity into the way we think and talk about eating disorders. As Malson & Burns describe in the introduction, adding the slash helps to break apart the divide between which behaviours around food and in bodies are “normal” and which are “pathological” by moving the focus away from “individual pathological responses to patriarchal cultures” (p. 2, italics added) by first breaking apart (literally, textually, and conceptually) the term “eating disorder.” This helps us to move toward a look at how eating dis/orders exist within a sociocultural nexus complete with various (constructed) norms around food and bodies.

This is one of several inspiring critical feminist takes on eating disorders that draw attention to “the complex, shifting, and varied meanings embedded in these experiences, bodies, and practices” (Malson & Burns, p. 4). However, despite their brilliance, post-modern and post-structuralist approaches to eating disorder research sometimes get sidelined at best or dragged through the mud as “unscientific” or denialist at worst. They are sometimes deemed damaging to the cause, as they tend to disrupt the usual way of labelling and addressing things. Further, perhaps because we are used to seeing things in an individualizing way, particularly where psychology is concerned, critical feminist arguments may be interpreted as saying things like “the patriarchy caused your eating disorder,” when it’s really not as simple as that. Cause in particular takes on a particular amplitude at a historical moment wherein the pursuit of the cause(s?) of eating disorders is a hot topic.

To dislodge a clinical label is not to discount the reality of suffering; however, the assumption is that if a label is questioned, the thing itself is questioned. Not to go all Judith Butler on you, but language creates the world; it is important to question the language we use, and whether there is inherent reality to pathologies, because of power.

What does that mean, and why is it important? A clinical label might be used in a way that restricts or opens access to a particular thing, such as treatment or insurance coverage for treatment. Clinical labels were developed over time, and they change over time. Think about the different iterations of the Diagnostic and Statistical Manual (DSM), as an example. In earlier iterations of the DSM, categories of social belonging like homosexuality were deemed pathological. We have other examples, but this one often helps to draw attention to the strikingly contextual nature of diagnosis.

These labels have power insofar as they can direct actual actions taken to “remedy” the situation at hand. The assumption is, where there is pathology, there is cure. That cure—the modalities it takes, the particularities of its usage—is usually developed (at least in Western psychiatry) without much input from the person who is suffering. There is, of course, a movement of consumer/survivors (with “survivor” gesturing at how people have survived—sometimes narrowly—encountering being admitted to, clinical services and “consumer” lately relating to a commoditized framing of healthcare) that has made inroads elsewhere in making change in the way treatment is designed and delivered (see this article for more information about the consumer/survivor movement). Yet, in the eating disorders field, this has not emerged in the same way.

A part of the reason behind this, from what I can glean, is that people with eating disorders are rarely trusted to be reliable narrators of their own stories. In my research, I’ve spoken with people who felt the surveillance of others in their lives long after they felt they were doing much better; I’ve talked to people who had to fight tooth and nail to get treatment; I’ve heard stories of both people who were not believed when they said they had an eating disorder and people who did not believe they had an eating disorder when they were so-labelled. This dance is a tricky one. “Eating disorders” are heterogeneous not only in the sets of symptoms that are often clumped into the available diagnostic language, but also in the individual’s orientation to, awareness of, and preferences for management of their behaviours.

Ultimately, I believe in the right of the person to self-define how they perceive their relationships with food and their bodies, as well as their relationships with the label “eating disorder” and all associated labels. And, I recognize that this self-definition is limited by the societal context. I often cringe when I see people haphazardly diagnosing someone as having an eating disorder, or claiming that someone has anosognosia and therefore is “unwilling” to accept their problem. I do not say that I cringe because this is never the case, but instead because the external and a-contextual labelling does away with a consultative and collaborative understanding of things that have come to be called “anosognosia” and “eating disorders.” I do believe that people do not always recognize when their behaviours are problematic; sometimes, I am sure, this is at a brain-level—the brain not being able to compute the issue as threat, in a very simplified explanation. If that is the case, it seems highly problematic to deem the person “resistant” or “problematic,” as I have sometimes seen occur. I am sure that the lack of awareness often ascribed to eating disorders is also sometimes tied to the social reinforcement of particular standards for what bodies are allowed to be and do in this world. If the very behaviours causing you emotional and physical pain and suffering are praised in the cultural zeitgeist, how could you reconcile the pain you are experiencing with the “goodness” of the behaviours?

In both of these cases, a person may not “admit” to their suffering or want to call it an eating disorder. But is the answer to force them to “admit” to it and to take action that someone else has decided is the right answer? I am yearning for more complex discussions about paths of action in cases where people are not seeing the problem in the same way that clinicians are. I think we need to do more than simply draw on clinical labels and staid interventions to “fix” people.

The discussion is a complex one, as well, because of the conditions that grabbing on tight to clinical language can create for those who do see their behaviour as hurting them, and reach out for support, only to be met with resistance. If we over-state the extent to which people with eating disorders “don’t understand” or “refuse to admit to” their struggles, then accepting and reaching out about the issue risks, paradoxically, being framed as “not eating disordered” and not attracting the same level of support. I have yet to see research really diving into this conundrum in a meaningful way, and I think it is well beyond time.  

Perhaps the biggest issue that raising these critiques, well, raises, is that the general public does not have a base understanding of eating disorders, let alone a nuanced conceptualization of clinical and diagnostic language and its power. In advocacy spaces, the use of “mainstream” terminology becomes important because it acts as shorthand, allowing for at least the possibility of adding distress around food and in bodies to, for example, national policy agendas. It becomes less important that a few years ago, the DSM classification system for eating disorders was rearranged, which re-shuffled diagnoses and created new “realities” and clinical “truths.” The emphasis is collective and systemic, and ultimately aimed at generating more possibilities for funding to, hopefully, stop perpetuating harms.

But the thing is, unless we accompany our advocacy efforts with a critique dominant of models—including clinical labelling and treatment practices—we might be advocating for what amounts to more of the same. Where is there room for self-definitions and multiple truths and complexity within cut-and-dry conversations about where the money should go?

This post raises more questions than answers, I realize. It feels vulnerable to enter into the fray of questioning the powered uses of diagnostic and related terminology. I fear being labelled a postmodern hack, sure. What I fear more is the accusation that in leveraging this kind of critique, I do not care about the wellbeing of people. I would argue that there is nothing more caring than listening, questioning, and working through complexity. While I may question the use of clinical labels or put a slash in a word here or there, what I never question is that many, many people are suffering—many more than we’re even aware of—and that people deserve help that works for them. And yes, I do think that we need to empower people to be active participants in their own care, giving them an opportunity to shape what this looks like and what role “health,” “wellbeing” and “recovery” plays in their lives.   

With a huge thank you to Emma Pudge for the thoughtful read and suggests.