An eating disorder is an eating disorder is an eating disorder... That is pretty much the summary of what I have to say here, but let's dig a little deeper.
In general, the most commonly known eating disorders are Anorexia Nervosa (AN) and Bulimia Nervosa (BN). Other eating disorders that are less known, but more common, include Otherwise Specified Feeding and Eating Disorder (OSFED) and Binge Eating Disorder (BED). Pica and Avoidant Restrictive Food Intake Disorder (ARFID) are also of note. The category of OSFED functions as a catch all for diagnoses that do not otherwise "fit" in another eating disorder category and includes "Atypical" Anorexia Nervosa or Bulimia Nervosa, low frequency BED, Purging Disorder, and Night Eating Syndrome. Unspecified Eating Disorder is also a category (largely influenced by a clinician's understanding of an eating disorder and the setting in which the diagnosis may be made.)
Each specific classification outlines a descriptor of behavioural symptoms, frequency of behaviours, and (unfortunately) some physical characteristics. These definitions have changed over the years as our understanding of eating disorders have evolved, but they are a long way from perfect and may never quite capture the complexity of these experiences. It is important to recognize that frameworks, however useful they might be in some regards, are also created by humans and thus, are subject to our biases. Western psychiatry and modern medicine are steeped in a historical context that we need to take note of, as it lends itself to biases that perpetuate prejudice, stigma, and harmful stereotypes.
The reflection and critical thinking I want to encourage through this post, is whether there could be alternative ways of viewing eating disorders and subsequently, changing the way in which we categorize, describe, and treat these illnesses. Like most reflective pieces I write, there is no "right" or "wrong" here, there is simply an opportunity to explore how frameworks and nomenclature that are intended to capture and describe a phenomenon (in this case eating disorder diagnoses) can influence the reality of how we conceptualize and construct these struggles. My hope is to encourage reflection around diagnoses and disorder classifications in Western psychiatry and to remind people of the benefits and limitations in diagnostic classifications. Obviously, I am not psychiatrist or professional working in the field of eating disorders, my perspective is simply of someone with lived experience and informed by a nursing background.
To start, let's go through a brief history of the psychiatric bible - the DSM, from its first to its latest iteration. This part may be a bit dry for some, so feel free to skip this section if this is not your cup of tea.
A Brief History of the DSM
What would one day become the starting place for the DSM began in census data from the 1840s in the United States. At that point in time, all that was really being documented broadly were cases of "idiocy/insanity," but by the 1880s, there were seven different classifications for mental disorders. These included: mania, melancholia, dementia, monomania, paresis, dipsomania, and epilepsy.
By 1917, the American Medico-Psychological Association and the National Commission on Mental Hygiene developed a plan for capturing uniform health statistics across mental hospitals, that the Bureau of the Census adopted. This plan was more focused on administrative classification than it was towards creating clinical applications to support patients. In 1921, the American Medico-Psychological Association changed its name to the American Psychological Association (APA) and collaborated with the New York Academy of Medicine to develop a national psychiatric classification system that could be used to diagnose those with severe psychological and neurological illness, across the United States.
It wasn't until the Second World War, that the U.S. army developed a broader classification system aimed at better incorporating outpatient presentations of mental illness in servicemen and veterans. (Side note, it is incredibly interesting to explore how many things in the world were heavily influenced by war and the military.) Around the same time, the World Health Organization (WHO) released its sixth edition of the International Classification of Diseases (ICD), which for the first time, included a section on mental disorders. This document was heavily influenced by information coming from the Veterans Administration.
The ICD-6 was eventually formatted by the APA into the first form of the Diagnostic Statistical Manual (DSM) in 1952. This early version of the DSM contained a glossary of mental disorders and focused more on clinical usefulness in treating patients over statistical information gathering than previous classification systems. It was also heavily influenced by Adolf Meyer's psychobiological view of mental illness as a reaction of the personality to psychological, social, and biological factors.
This early version of the DSM struggled to gain widespread acceptance and the WHO facilitated a comprehensive review that eventually lead to the development of the DSM-II and ICD-8, which shifted away from the psychobiological view and the term "reaction."
Over the following decades the DSM's development walked hand-in-hand with further development of ICD editions. The DSM-III was released in 1980, followed by the DSM-III-R in 1987, the DSM-IV in 1994, and finally the DSM-V in 2013.
Critiques of the Traditional Classification Systems
Through each version of the DSM, it is critical to examine the ways in which biases influence diagnoses, our understanding of mental illness, and the factors which influence its development. For example, it was only in the 1970's that homosexuality was removed from the second edition of the DSM. More recently, the criterion of amenorrhea associated with anorexia nervosa (AN) was removed for the fifth edition of the DSM. This previous criterion was harmful in that it reflected the assumption that eating disorders only affect women and that all women menstruate. This is why we have to critically examine racial contexts, gender bias, weight stigma, trauma, and much more when looking at how we understand and treat mental illness.
None of this is to say that the DSM is not an incredibly useful tool in psychiatry, Western medicine, and the operation of many healthcare systems. Without a common language to understand an issue, we would make very little progress on supporting those struggling with an illness. The DSM can give a name to a problem, which means there is something solid that can be explored, researched, and treated (in theory). There can be such relief for those struggling, to finally have a name for what they are facing. It also allows for a more widespread approach to research, treatment, and advances in the field. We need agreed upon meaning to be able to advance our understanding on a global scale. It would be akin to trying to coordinate trains travelling across vast time zones without the invention of international standard time - incredibly confusing and disorganized.
As we can see, structured diagnostic classification systems can be incredibly useful in creating a common language in how we approach, research, and treat various mental health conditions. However, just because this view of mental illness categories is the dominant dogma of Western medicine, does not mean it is without bias, fault, or risks potentially causing harm. Western medicine's approach to psychiatry has historically subjugated marginalized peoples to erasure, brutality, and institutionalization. Historically, people of colour, women, those who are mentally ill, disabled, those in "larger" bodies, those who have suffered trauma, those who identify as something other than their assigned gender at birth, and people of diverse sexual orientations, have suffered at the hands of Western medicine and psychiatry. This is not to deny that many people (sometimes even the same ones who have experienced harm from the system) might not have also received life-saving treatment.
When we look at the potential harms of rigid classification systems, what stands out immediately is the fragmentary nature of the DSM. While not necessarily the intention (although sometimes that could be argued), when we have a system of classification that narrowly specifies mental health conditions, it makes it more difficult to appreciate mental illness and underlying trauma (which is often present) in the context of the whole person and their circumstances. Rigid mental health diagnoses are defining "deviance" from a norm that we also have to critically question because "the norm" is based on many forms of Euro-centric privilege. This basis on Euro-centric privilege so often fails to acknowledge the underlying current of trauma(ata) that tie together so many mental and physical struggles. Historically, much of psychiatry and Western medicine has been dominated by white, affluent males. We cannot ignore that historical context.
The underpinning of Cartesian dualism (the mind-body split) that still exists in Western medicine is extremely limited and inaccurate. We are whole beings - our minds and bodies are one; they cannot be divorced from each other. When we see different specialists who focus in on narrow health issues, it is in part because there is no way that any one human can know everything there is to know. This is helpful. However, specialization also increases the risk of fragmentation and the silo-ing of care, thus perpetuating the game of whack-a-mole that many individuals struggling with chronic health problems or mental illness, experience. A great example of this that is relevant to eating disorders, is that they are somehow divorced from the rest of psychiatry and it is very difficult to find a psychiatrist who specializes in multiple mental illnesses that includes eating disorders. Eating disorders are not some uncommon, fringe issue, they are very commonly associated with other mental (and physical) health problems. Concurrent mood, anxiety, and personality disorders, as well as addiction and experiences of trauma, are common in this population. A holistic understanding of these entangled experiences is critical in how we support patients in their healing journeys.
For many individuals, mental health diagnoses begin to pile up - a long list of acronyms that trail behind people's names in their medical records. Often there is an undercurrent of trauma and/or attachment issues underpinning many diagnoses (such as Oppositional Defiance Disorder, Borderline Personality Disorder, Opioid Use Disorder, etc.) This is where it is critical to look at what has happened to people and the overall of context of their lives and situations instead of simply diagnosing what we think is "wrong" with people. Perhaps reactions and behaviours that seem outside "the norm" are understandable responses to previous and ongoing trauma or attachment injuries, often experienced in early childhood. Perhaps there is nothing wrong with a person, they are simply reacting to a threat that may no longer be present, but has influenced the way in which they perceive and operate in the world. As our understanding of trauma continues to evolve, it becomes clear that experiences that do not fit the traditional criterion of Post-Traumatic Stress Disorder (PTSD), but are due to smaller events during critical periods of development (and may have occurred unintentionally), have nevertheless seriously impacted a person's development.
There are many clear examples of mental illness diagnoses where certain biases have influenced the development of the category and the tendency to diagnose (or miss the diagnosis) in certain populations. Autism Spectrum Disorders (ASD) are frequently diagnosed in cisgender males, but the presentation is often missed in other patient populations (particularly females) because of the ways in which this diagnosis presents and embedded gender biases in Western culture and medicine. Another example, BPD is far more likely to be diagnosed in cisgender females than other populations. Again, it is critical to question how appropriate the diagnosis is if we include the context of trauma, attachment injury, and appreciate embedded structural gender biases. Viewed through that lens, BPD starts to look a lot like the former diagnosis of "hysteria" (at least in my unofficial opinion.)
Are there certain behavioural tendencies, symptomology, or patterns to heal (or support someone with) in certain diagnoses? For sure, there can be, but we can also talk about these things without placing a highly stigmatized and limiting label on someone (though again, everyone experiences mental health diagnoses differently.) What matters the most in any mental illness diagnosis is how useful it is to the person living the experience.
Exploring Alternative Frameworks
Suggesting alternative ways of framing mental illness is not new. Many indigenous cultures have long had diverse descriptions of what Western society would describe as mental illness, trauma, and related struggles, encapsulated in non-clinical terms and broad understandings that support healing. These forms of understanding healing are not fragmentary in nature and support connection to community and culture through various, multimodal therapeutic approaches (bottom-up, top-down, and pharmacological.)
The question I want to pose here (simply for reflective purposes) is: what would a spectrum-based diagnostic framework for eating disorders look like? What might be the benefits of this conceptualization and what might be the limitations and challenges?
Many individuals who struggle with eating disorders shift between behaviours over time and while the DSM's specifically defined boundaries separate one classification from another, these are essentially arbitrary borders based on weight stigma (for example, in the distinction between "atypical" AN and AN), other ingrained biases, the type and frequency of behaviours, etc. Aside from ARFID and Pica, many eating disorder diagnoses have very little to do with food. At the end of day, despite how an eating disorder may appear on the surface, these issues often go much deeper than the ways in which they are expressed.
If we conceptualize individual's struggles and recovery from those struggles with extremely rigid boundaries and associate certain diagnoses with certain stereotypes, we miss the deeper issues going on that need to be explored in order for recovery to take place. We are also more prone to mis-diagnosing patients (e.g. people of colour, men, etc. are far less likely to be diagnosed with an eating disorder because of the stereotypes that surround them). Dismantling rigid diagnostic boundaries is also important for research purposes and follow-up care, for example when a patient is leaving a higher level of care. The fact that an individual can enter treatment with one diagnosis and leave with another based on weight changes or behaviour-use changes, does not erase the fact the underlying cause for their eating disorder persists. The core of their struggle has not changed, only their presentation has.
Now of course, there are reasons why programs and insurance providers have a definable boundary to what they treat - it is part of what allows them to provide support, conduct research, and receive funding to do so. Changing this is complicated, but it is not impossible and if we are truly going to tell people that their struggles are valid and they deserve recovery, then we have an obligation to make it more accessible. Many programs or insurance companies only provide support to those struggling with AN, BN, sometimes OSFED, and BED. Someone can be seriously struggling with an eating disorder, but because they might use a behaviour slightly under the rate of a defined diagnostic classification (or they may not fit a specific stereotype), they will not be able to access many forms of support. Essentially, the system promotes "getting worse" in order to receive help. This is entirely inefficient and extremely damaging as well as being not remotely cost-effective in the long run.
I have heard so many individuals express extreme shame and distress when their behaviours shift over time, from what might feel like a more "valid" eating disorder, to behaviours that they may associate with losing control. This is by far the norm in the trajectory of an eating disorder and recovery from one. At the end of the day, if you are struggling in your relationship with food and your body, the specific details of a diagnostic category do not matter: you have an eating disorder and you deserve support. I personally no longer even describe myself by diagnostic labels, I simply have an eating disorder, my behaviours have shifted over time and circumstance, but the underlying causal and maintenance factors persist. To truly heal, focusing in on those factors (while repairing my relationship with food and my body) is all that matters. (However, I cannot make that statement without acknowledging my own privilege. While it may not matter what the diagnosis is in the grand scheme of things, it does impact people's access to support.)
Limitations in support options do not reflect an individual's potential in recovery, but we cannot ignore that they do impact an individual's access. This is where asking questions and being curious about how we can continue to dismantle oppressive symptoms, redefining how we approach supporting people, is key.
What would it look like if we diagnosed eating disorders as just that - an eating disorder? If needed, we could further delineate the diagnosis with further detail simply regarding current behaviours (which may shift over time and circumstance). An example being "eating disorder (currently experiences restriction, bingeing, and purging type behaviours.)
The predominant argument I anticipate against this kind of approach might be "the diagnosis informs the treatment approach, if we didn't use specific classifications, how we would approach treating individuals?" At the heart of it, how much truly differs in how we approach treating different ED diagnoses that wouldn't already be captured in individualized approaches to care? Indeed there are differences to what people struggle with - for example, someone may avoid a certain food out of fear due to diet culture biases or worry over weight changes; others may avoid a given food out of the fear or distress that arises from texture/sensory stimulation, etc. At the end of the day though, the things that are critical to recovery are very similar. These include regular, balanced nutrition (everyone already has an individualized meal plan), different forms of therapy (CBT, DBT, somatic therapies, trauma therapy, etc. based on what is useful to an individual and the other aspects of their struggles), body image work if relevant, harm reduction approaches, treatment of concurrent issues, and pharmacological approaches, etc. All of these things can be fairly well covered by the concept of individualized care, which we already strive to offer.
- S.
References & Further Reading:
https://www.psychiatry.org/psychiatrists/practice/dsm/history-of-the-dsm
Trauma-Informed Approaches to Eating Disorders - (Ed.) Andrew Seubert & Pam Virdi
What Happened to You? - Dr. Bruce Perry & Oprah Winfrey
When The Body Says No - Gabor Mate
The Body Keeps the Score - Bessel Van der Kolk