It is well recognised that recovery is a contested term in the eating disorder literature and that ‘there is no single definition or description of [this concept]’ ([1] p4). A number of studies point to inconsistencies with the way criteria for recovery is used and defined in clinical trials, making it difficult to compare research and reach consensus [2, 3]. Current clinical definitions of recovery incorporate the presence of minimal eating disorder psychopathology (i.e., within one standard deviation of the range of healthy populations), the absence of disordered eating behaviours, and achievement of a healthy body mass index [3].
There has been a movement towards recovery-oriented practice and service delivery [4]. Those with lived experience of a mental illness and support organisations have emphasised the recovery model primarily within a social justice movement aimed at restoring the human rights and full community inclusion of people with mental health issues [1]. Australia’s National Framework for Recovery-Oriented Mental Health Services reflects this momentum, recognising the value of lived experience, the diffuse lines of recovery, and respecting clients’ knowledge and choice alongside that of health professionals [1].
The recovery model is a central theme in the Royal Australian and New Zealand College of Psychiatrists Clinical Practice Guidelines for the Treatment of Eating Disorders [5]. It is intended to provide current evidence based guidance on the assessment and clinical treatment of people with eating disorders in the Australian and New Zealand context [5]. The guidelines state ‘care for people with eating disorders should be provided within a framework that supports the values of recovery-oriented care’ ([5] p983). This document for the clinical management of eating disorders has been well received and represents the work of a collaboration of health care academics and professionals, and wide consultation with key stakeholders and the community. In their systematic review Hay et al., point out that ‘most people make a sustained recovery with treatment’, including ‘people with anorexia nervosa, where up to 40 % of adults (and a higher percentage of adolescents) will make a good five-year recovery, a further 40 % a partial recovery and those with persistent illness may yet benefit from supportive therapies’ ([5] p979). Research indicates that 50 % of those with bulimia nervosa fully recover and the outcomes with treatment for binge eating disorder obtain similar results [5].
However, Ben-Tovim et al.’s highly cited study on eating disorder outcomes in South Australia [6] concludes that ‘many patients make a good recovery without accessing specialised treatments of any kind’, including treatments such as lengthy admissions for weight gain or long-term outpatient care, pointing to the need to explore other contributing factors in people’s lives ([6] p1257). The course of natural recovery may differ depending on the eating disorder, with one study finding that 5-year prognosis for bulimia nervosa was poor, while the majority of those people with binge eating disorder were recovered [7]. Other studies have found that it is common for presentation for treatment to occur many years after onset of an eating disorder, and into late middle-age [5, 8, 9], highlighting that a large population of people with eating disorders are not engaged with treatment. These findings point to the diversity of recovery experiences, and to the importance of exploring qualitative experiences of disordered eating and recovery to understand what impedes and encourages recovery.
There are a growing number of qualitative studies on recovery from eating disorders [10–15] that focus on patient perspectives. Such studies also identify obstacles to recovery. For example, qualitative studies show that the pursuit of low weight addresses a sense of ineffectiveness, makes the person feel safe, helps communicate distress related to possible rejection and abandonment, and moderates the experience of negative emotions [11, 13, 16]. Bjork and Ahlstrom argue that qualitative approaches allow for different dimensions to be explored that would risk being lost in quantitative research. In their qualitative study of patient’s experiences of recovery from chronic anorexia nervosa, Dawson et al. note that the accounts of the women they interviewed should be understood within their gendered and cultural context [14]. While the women ‘did not greatly examine the sociocultural context from which their AN developed and recovery took place’ ([14] p503), Dawson et al. suggest that such investigations would deepen understandings of the cultural processes that underpin eating disorders. Similarly, in her analysis of gender and recovery in eating disorders, Moulding argues that while qualitative studies draw attention to the cultural dimensions of recovery, ‘there is [actually] little attention to the social dimensions of these processes, with the focus primarily on intrapsychic factors’ ([15] p71) located within individuals.
The national framework on recovery acknowledges the subjective experiences of recovery beyond medical and psychiatric classification, with a focus on collaboration between people with disordered eating, carers and health professionals. However, 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. The national framework includes sections on ‘understanding cultural idioms’ and ‘keeping diversity in mind’ which focus on people from culturally and linguistically diverse backgrounds; Aboriginal and Torres Strait Islanders; refugees and asylum seekers; LGBTI people; and other minority groups [1]. In the eating disorder therapeutic guidelines, an exploration of culture is limited to the inclusion of the section Indigenous care, a dimensional and culturally informed approach to diagnosis and treatment ([5] p983). Culture is not an external attribute or independent variable (such as one’s ethnicity), but involves the myriad of taken-for-granted and embodied practices that give meaning to our everyday worlds. Anthropologists have long pointed out that culture is practiced through ‘the shared … (implicit and explicit) values, ideas, concepts, and rules of behaviour that allow a social group to function and perpetuate itself’ ([17] p345). All groups and societies (including researchers and health care professionals) have a number of co-existing, overlapping and competing subcultures [17]. Leading cultural psychiatrists (e.g., Kirmayer and Minas 2002) and the recent Lancet Commission on culture and health [18] support the view that culture is fundamental both to the causes and course of psychopathology and also to the effectiveness of systems of healing and health care. Population health literature also suggests that social factors, rather than medical interventions, are the main determinants of recovery from mental ill-health [19–21] (see also [22] for concept of ‘recovery capital’).
Therefore, while the recovery-oriented framework for treatment promotes inclusive service delivery, it lacks an interrogation of the cultural contexts of recovery and care. The main aim of this paper is to explore the cultural contexts in which a person experiences an eating disorder and how this is critical to how they approach recovery. Healthy eating and lifestyle discourses act as ubiquitous cultural signposts for people wishing to maintain eating disorder practices (‘watch what you eat’, ‘you are what you eat’) and often compete with medical and psychiatric advice. Dutch anthropologist Annemarie Mol has written widely about eating, bodies and care practices in health care settings [23]. Her ‘logic of care’ is a useful framework to discuss how understandings of care and recovery might differ between people with eating disorders and practitioners – and why people might not seek therapeutic care in the initial phases of disordered eating or in the case of severe and enduring eating disorders [24]. In the RANZCP ‘Clinical Practice Guidelines for the Treatment of Eating Disorders’, ‘meaningful engagement in therapy’ is singled out as being ‘a crucial component in all treatments for anorexia nervosa’ ([5] p988). Expanding on what ‘meaningful engagement’ looks like in practice would be beneficial, and we argue a framework of care may be valuable for thinking through the different understandings of care held by patients and practitioners. Furthermore, the national framework on recovery offers insights which could be expanded to include a discussion on perspectives of care. These include the framework urging health professionals to be aware of ‘a person’s explanatory models of illness, distress and wellness’ and ‘the impact of the practitioner’s own language, cultural beliefs and values on the therapeutic relationship barriers to service’ ([1] p14). A therapist’s capacity to understand how a person with disordered eating may perceive their practices as a form of self-care and health [25, 26] is an example of recognising an individual’s explanatory model and personal agency.
A recently commissioned report found that of the one million Australians who suffer from an eating disorder, less than 30 % engage with treatment [27]. Research to date has mainly focused on people who engage with treatment services [28], but we know very little about the significant number of people who do not seek help, or delay seeking help for many years. This paper thus offers new insights into why people might not even consider accessing recovery pathways, or take many years to do so. The results reported in this study are part of a larger project that aimed to identify why people with eating disorders deny they have a problem, or delay and resist professional care. In working with a group who are significantly under-researched, we aimed to demonstrate how behaviours were rationalised as part of a cultural milieu in which care of one’s self, demonstrated through careful eating and physical exercise, was culturally legitimated and widely sanctioned. In attending to how people understand their behaviours (as normal and ‘not sick’), we hypothesized that this would illuminate important cultural contexts that underpin and potentially obfuscate a need to attend to recovery.