We live in a world of binaries – ‘good or bad’, ‘right or wrong’, ‘healthy or unhealthy’.
The binary oppositions are endless.
More than that – they are normalized and readily accepted.
The lives of people are complex, and yet, we so readily desire to water down reality into one or the other and ignore the vast diversity, complexity, and nuance that makes life what it is and every story unique.
To our further detriment, these binaries position the dominant or socially accepted ‘desirable’ against that which we should avoid at all costs – against the seemingly ‘undesirable’.
To be the best, most productive person and readily accepted into society, is to be or strive to be ‘good’, ‘healthy’, ‘right’ – to be the ‘ideal citizen’ (that is, the socially constructed ideal).
This way of being, knowing, and doing is so deeply entrenched in our world. It is ‘normalized’.
Accordingly, and unsurprisingly, the arena of eating disorders, treatment, and recovery is not void of such binaries. In fact, binaries of ‘sick or healthy’, ‘recover(ing/ed) or ‘not recover(ing/ed)’, ‘obedient or resistant’ are so deeply entrenched, that we ignore that vast complexity, difference, and need for different ways of healing in the eating disorder journey.
Instead, we have seen the (highly contested) introduction of ‘terminal’ anorexia. Instead of drastically altering how we understand eating disorders, treatment, and healing, we saw a jump to terminal illness.
Yes, this terminology has been highly contested and many activists, people with lived experience, and scholars have written critiques in response to this. But what this terminology does is remind us more about how deeply entrenched ideas about polarized opposites of ‘healthy’ and ‘eating disorders’ exist within society. It reminds us of how individuals who ‘recover’ and ‘comply’ are privileged over those who seemingly ‘resist’ treatment.
What if instead of labeling people as ‘resistant’, ‘non-compliant’, ‘hopeless’, or ‘terminal’, we disrupted binary ideas of recovery, tried something different, and lived within the messiness of different ways of healing?
What if we altered how we view eating disorders, health, and recovery?
In the treatment and recovery space, a binary continues to exist. We can see this clearly in the construction of the ‘good/obedient’ patient’ versus the ‘bad/obedient’ patient (Boughtwood & Halse, 2010). We see this in the way care is enacted, privileges are awarded, how access treatment is enabled, and how punitive measures are enforced.
The ‘good/obedient’ patient is one who ‘willingly’ and unquestionably complies with the rules, expectations, and goals of treatment. This patient is highly desired and privileged. This is the patient who is ‘willing’ to get well, who ‘chooses’ recovery’, and who enacts agency in alignment with ‘recovery’ goals (Lester, 2019).
Several scholars have illustrated how this discourse moves through eating disorder treatment spaces (Boughtwood & Halse, 2010; Holmes et al., 2021; Lester, 2018, 2019). Those who are ‘good’ are provided with privileges, such as increased freedom, the provision of more kindness and compassion in their care, etc.
In contrast, those patients who ‘resist’ treatment often face what can be viewed as coercive and punitive measures from clinicians that are accepted given that they are construed as therapeutic. Both studies and lived experiences, including my own and that of several of my peers, have shown how in instances of patient ‘resistance’, clinicians and other staff may draw on specific ‘care’ strategies, such as the threat of bed rest, tube feeding, the loss of privileges, the withholding of care, the threat of discharge, and other fear-based tactics to elicit compliance.
In this way, care and treatment in many spaces become predicated on compliance and being the ‘good/obedient’ patient.
Critiques have been lodged at this discourse, the dominant model of eating disorder treatment, and the one-size-fits-all approach to recovery, for rendering ‘resistance’ and ‘non-compliance’ as due to the pathology of the individual and an individual’s ‘unwillingness’, rather than an indication that practices of care not meeting the needs of clients (Boughtwood & Halse, 2010; Joyce et al., 2019; Lester, 2019; Malson & Burns, 2009; Malson et al., 2004).
In moments of non-adherence or so-called ‘resistance’ and ‘refusal to comply’, rather than attempting to understand what is happening for the client, they may be forcefully discharged from care, met with punishment, and/or labeled as ‘resistant patients’ or ‘hopeless cases’.
Instead of altering how care is provided, listening to the needs of the clients, understanding what ‘willingness’ and ‘recovery’ means to the client, and responding accordingly, care work in eating disorder treatment tends to focus on one form of ‘recovery’ that ignores the needs, experiences, and desires of too many individuals.
These punitive, coercive practices, the use of labels of ‘treatment resistant’, ‘non-compliant’, and ‘terminal’, and the refusal to change course in care are deeply troubling.
While there is a desire to help the client within them, as these rules and regulations can also be read as symbolic of the oppositional stance that service providers take towards the eating disorder, they also do not create room for people to make mistakes or discuss lapses and setbacks, without fear of judgment, shame, or punishment (LaMarre & Rice, 2016).
Moreover, across several studies, it has been demonstrated that treatment and care practices underpinned by carceral logics are associated with lowered motivation, increased rates of treatment dropout, higher rates of relapse, feeling unsafe in treatment, retraumatization, and declining entry into treatment (Andersen et al., 2021; Holmes et al., 2021; Johns et al., 2019).
Additionally, in a synthesis of client perspectives of premature treatment termination, Vinchenzo et al. (2022) highlight how feeling unsafe in treatment due to strict rules, reward and punishment systems, and denial of one’s own voice were common contributors to patients leaving treatment early.
The dominance of the medical model and neoliberalism creates a black-and-white environment where one is ‘well’ or ‘sick’ and being somewhere in between does not fit. As it appears in the literature, care protocols do not often center on the psychosocial, affective, and underlying reasons why the eating disorder became a safety net, coping mechanism, or developed (Lavis, 2016, 2018). Thus, ‘resistance’ is read as a failure on the part of the client and being undeserving of care, rather than a sign of a need for clinicians to enact a different approach to care that privileges more than the physical body and dives into what purpose the eating disorder may serve (Lester, 2019).
Eating disorders occupy certain places and serve specific roles in people’s lives (Lavis 2015, 2016; Musolino et al., 2020). They are not simply biologically based mental illnesses, nor are they chosen or wanted. Rather, they do things, often acting as coping mechanisms for trauma, emotions, and more, as biological, psychological, and social factors complexly intersect to bring an eating disorder into existence.
As past research and this current work illustrate, when the focus of treatment and care is disproportionately on biology, nutritional rehabilitation, and behavioural change, with emotional, social, and embodied experiences of eating distress sidelined, the clients and clinicians can be disproportionately negatively impacted.
Without deep engagement with other elements, an individual may experience a deep sense of loss: a loss of a sense of self, a loss of control and power, and a loss of what has offered a sense of safety and care. This can create situations that result in relapse after treatment when conditions of outside control and surveillance are removed, and situations where blame is placed on the individual for ‘failing’ or ‘resisting’ treatment. Yet, in many cases where relapse, ‘resistance’, or treatment ‘failure’ occur, what is often needed is a different enactment of care. Not only does conventional treatment restrict clients from getting their needs met holistically, as several studies have identified (Andersen et al., 2021; Gustafsson et al., 2021; Holmes, 2016; Holmes et al., 2021; Johns et al., 2019; Lester, 2019), but it can similarly limit the care work of clinicians.
In her work on care and eating disorders, Lavis (2018) explores how eating disorders become a modality of self-care, enabling the individual to contend with other psychological, emotional, and social experiences. Such a view aligns with the idea that eating disorders serve a purpose in individuals' lives. Moreover, Musolino et al. (2016) highlight that being attentive to how people experience or do not experience care through their eating disorder practices has the potential to open possibilities for therapists to expand their practices of good care and nurture the therapeutic relationship, going beyond care as predominantly physiological, toward seeing care as also about emotional nurturance.
Such views provide us with a starting point to disrupt the discourse of ‘resistance’, ‘non-compliance’, ‘hopeless cases’, and ‘terminality’ in the context of eating disorders. They push us to reconsider that the needs of each person struggling with eating disorders or eating distress have a different relationship with their struggle, food, body, emotions, and more, which require deeper interrogation than weight, nutritional rehabilitation, and food. While these remain crucial elements of treatment, when they are the first line of treatment, and other elements are sidelined, we will continue to live in the binary space of treatment, continue to fail too many of those struggling, and continue to ignore the diversity of needs.
References
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