Living through distress
‘When all else fails’. Photo credit: Matt McGee
This Think Piece reflects on the desire to maintain an existing illness, based on the narratives of individuals diagnosed with anorexia. Informants’ descriptions of anorexia as a ‘friend’ that may ‘look after you’ problematize taken-for-granted boundaries between health and harm, illness and care. Framed as a precarious and painful solution to distress, the illness is described as a way in which to live through, and move beyond, the present moment. It emerges as an ambivalent modality of self-care that may be actively maintained. Such accounts invite consideration of what desire is and how it acts in the day-to-day lives of individuals with anorexia. By engaging with these questions, the Think Piece asks how such desire might be ethically approached, read, and attended to, and what challenges it poses to habitual ways of thinking and doing in medical anthropology.
In her exploration of illness as metaphor, Sontag (2002, 3) writes that illness is ‘the night-side of life’. Medical anthropology has illuminated the phenomenological traversings of this ‘night-side’ across myriad empirical contexts, attending to intimacies of suffering and caregiving. Sontag goes on to present a moral binary, suggesting that although we all ‘hold dual citizenship’ we prefer the ‘kingdom of the well’ to the ‘kingdom of the sick’ (ibid.). In casting light on illness experiences, anthropologists have indeed tended to frame these as unwanted - as beyond the threshold of desirable. By considering accounts of living with anorexia, this Think Piece asks how anthropology might critically approach illness, and the suffering inhering within it, when both are intermingled with desire.
To explore this, I draw on two studies undertaken in large, urban National Health Service mental health hospitals in England: an ethnography of an eating disorders inpatient unit (2007–2008) and interviews with users of eating disorders outpatient, day-patient, and inpatient services (2013–2015), alongside an ethnography of pro-anorexia websites (2005–2013). Rather than exploring why people develop anorexia, or why some might wish to develop it, this Think Piece asks: What forms does the desire to hold onto illness take? What does desire doin the context of living with anorexia? And, how might this desire be approached ethically in both anthropological analysis and clinical practice?
Two countervailing premises ground this analysis: a recognition of the suffering and clinical realities of anorexia, alongside a refusal to accept the claim that, in anorexia, ‘what happens makes no sense’ (O’Connor and Van Esterik 2008, 9). Whilst many informants acknowledge that this is an illness, they also express an ambivalent desire to maintain it (see Lavis 2011). The analysis I offer here attempts to trace those jagged intersections of desire and distress, taking account of uncertainty and multiplicity. Is ‘desire’ a useful, adequate or even appropriate word to describe articulations of wanting anorexia? Does it offer the possibility of drawing attention to otherwise unheard and marginalized narratives? Or does it overlook the very lack of possibility and choice engendered by living with a psychiatric illness that may be ‘not under conscious or wilful control’ (Treasure, Smith, and Crane 2007, 19)?
Although my focus on ‘desire’ emerges from informants’ narratives, I do not assume this term to be unproblematic. Instead, it signifies a way to start thinking about how we might explore the further edges of illness narratives, and ask what challenges this poses to our habitual ways of thinking and doing in medical anthropology.
Holding onto anorexia
One summer afternoon during fieldwork in the eating disorders unit, all the residents were assembled in the stuffy dining room for communal snacks. Following some minutes in silence Chloe burst out, ‘I’m not eating this shit again!’ After slamming her untouched doughnut onto the table so hard it disintegrated into a squelchy mush of jam and sugar, she ran from the room. The nurse in charge asked everyone present – residents, nurses, and me – to leave our own plates and file into the corridor ‘to support Chloe’. Wide-eyed with the tension of being pulled away from their half-eaten doughnuts, other residents stood wordlessly in the corridor watching Chloe scream with frustration. A nurse then asked gently, ‘Shall we go back in [to the dining room] Chloe? Do you think that you can eat now?’ To this Chloe responded, ‘Of course I can bloody eat, I just don’t want to!’ Chloe then led the way back to the table and stuffed the doughnut into her mouth. Half-swallowing, half-gagging, she glanced around to meet the many eyes gazing at her before putting her tear-stained face in her hands, where it stayed until the end of snacks. Afterwards, Chloe and I chatted about what had happened. Chloe explained that being made to eat against her will was ‘barbaric’ when she had no wish to recover from her anorexia. She wanted, she said, to ‘stay anorexic’. Whilst expressing sadness that anorexia had ‘messed-up [her] life’, ‘ruining’ her relationships with friends and family, Chloe also said, ‘anorexia is just the way I do things’.
Desire has been analysed previously in relation to eating disorders, most notably in psychoanalytic literature. Hilde Bruch (2001) argues that anorexia is underpinned by a desire to return the body to a childlike state. But this desire to disappear into infantilized emaciation is often assumed to supersede all other desires, especially sexual ones. Desire, thus, is conceptualized as a pull towards that which is absent or out of reach, as in framings of anorexia as a relentless quest for thinness.
These strands of thinking privilege the visual, rather than lived, body. They frame emaciation as the end goal of desire in anorexia, propelled either by a longing to return to childhood or by a ‘slenderness imperative that dominates our collective imaginations’ (Girard 2013, 2). In so doing, these discussions of desire are entangled in a wider discursive centralizing of thinness to anorexia. Although highlighting the cultural contexts of the illness is valuable (see Bordo 1993; Eckermann 1997), focusing on emaciation frames anorexia as a means to a desired end rather than the object of desire itself.
In contrast, Chloe’s words – ‘anorexia is just the way I do things’ – invite a shift in analytic perspective, drawing attention to the processual nature of anorexia. They suggest that we need to engage with the present as a ‘locus of reality’ (Mead 1932) in which subjectivities, experiences, and relationships between personhood and anorexia are played out day by day. Through these a desire to maintain anorexia emerges.
Chloe is not alone in saying ‘I want it’ about her illness. In her interview, Nita said, ‘it becomes so much a part of you,’ and asked, ‘without it, what would I be?’ These words articulate a pervasive sense of relationality between informants and their anorexia, expressed with more or less ambivalence and distress. In her interview, Miriam described anorexia as something that is ‘there for me’, saying, ‘with anorexia I’m not alone’. Likewise, Tara, who had been affected by anorexia for twenty years, explained, ‘it’s been a friend to me for a long time’.
Informants have suggested that this sense of a friendship with anorexia is underpinned by their experience of the illness as ‘helpful’ and ‘protective’. In his interview Laurie said, ‘It’s a friend, definitely a friend. It keeps me company – and it helps me, you know?’ Like many other informants, Laurie described anorexia as something that, as Leila put it, ‘looks after you’. Or, as Jumela said, ‘anorexia holds my hand’. Such descriptions elucidate the sense of being cared for by the illness. As such, although self-starvation may be clinically framed as an expression of a lack of self-care, it emerges from informants’ narratives as a modality of self-care that is simultaneously a response and precarious solution to pain (see Lavis 2015).
Some informants have explained that their feeling of being ‘looked after’ ensues from the way in which the illness offers a still and ‘safe’ space, and a ‘cloud away from everyone else’. This provision of a space in which ‘to be’ is crucial to our understanding of the shape and dynamics of desire. Invested with stasis and familiarity, this is about holding on to an existing illness in order to get by, day by day.
As such, this snapshot of informants’ descriptions of the illness illustrates how it can come to be valued. It offers a way to move through, and withdraw from, the world by positioning oneself within anorexia’s perimeters. ‘Living through anorexia’ thereby comes to be a technique of ‘living through’ more widely; individuals know it is harmful, feel it is painful, and yet they may wish to ‘keep it safe’, as Kate put it.
We therefore cannot dislocate informants’ desire for anorexia from their relationship with it, and this challenges a model of desire as engendered by lack, which is common to psychoanalysis (see Lacan 2001). Rather, the above quotations offer a vision of desire more in line with that proposed by Deleuze and Guattari ( 2004; see also Deleuze 2007) and extended and challenged by Grosz. Grosz (1994, 165) writes, ‘while psychoanalysis relies on a notion of desire as a lack, an absence that strives to be filled through the attainment of an impossible object, desire can instead be seen as what produces, what connects’. Similarly, Probyn (1996) suggests that it is ‘the slip between being and longing, that we paste over, that we search to avoid when we erect an edifice of communication based in lack’ (44); instead, desire ‘produces the pleats and folds which constitute the social surface we live’ (13). It is, she says, ‘a method of doing things, of getting places. Desire here is the mode of connection and communications between things’ (ibid., 41).
These conceptualizations of what desire does,in addition to what it is, intersect with the stasis in informants’ narratives. Desire makes and remakes the stilled space of the present moment, which is lived through, or perhaps within, anorexia. Yet, alongside the stasis offered by the illness, holding onto anorexia is an active subject position and one that takes continual effort.
Maintaining anorexia as a way of being in the world elucidates how recovery can be frightening. It also highlights that, if you live through an illness that ‘looks after you’, holding onto it may be profoundly inflected with need. This blurring of the boundaries between desire and need perhaps suggests that ‘desire’ does not adequately take account of the complexity of informants’ relationships with anorexia, and the slippages of agency threaded through these.
However, recognizing that ‘holding on to anorexia’ is also invested with need does not negate desire as an analytic framework. Rather, it points to the necessity of acknowledging the complexity and multiplicity of desire itself in such a context. The felt need to maintain anorexia’s ambivalent protection suggests that informants’ relationships with the illness are perpetually unfinished and mobile. Desire produces ‘ever-new alignments, linkages, and connections’ (Grosz 1994, 168) on the one hand, but there is also an ‘unfinished (and uninstigated) character to desire’ (Brown and Tucker 2010, 232; see also Lavis 2011, 274), as well as to anorexia, as both are precariously navigated.
As such, desire for anorexia is reminiscent of Berlant’s (2010, 2011) discussion of desire as ‘cruel optimism’. She writes that, when we describe something we desire, ‘we are really talking about a cluster of promises we want someone or something to make to us and make possible for us’ (2010, 93). Informants’ narratives suggest that anorexia as the object of desire ‘provides something of the continuity of the subject’s sense of what it means to keep on living on and to look forward to being in the world’ (ibid., 94), yet it is also imbued with a profoundly cruel optimism.
Desire for anorexia, then, may be wanted, maintained, and actively worked upon, but also sometimes unwanted and painful (see also Lavis 2011, 225); it may be fractured or fluid, with hatred and longing for anorexia juxtaposed within the same sentence. As such, desire to hold onto the illness may be about seeking out ways of living within compromised conditions of possibility, rather than an expression of preference. This, importantly, suggests an anthropological reconceptualization of desire as not necessarily implying choice, or indeed, agency. Ambivalence and need may be part of, as well as other to, desire.
Attempts to understand the desire for anorexia draw anthropology into dialogue with critical debates in mental health beyond the discipline, particularly in relation to concepts such as ‘care,’ ‘chronicity’, and ‘recovery’. The pervasive clinical and cultural understanding of anorexia as something that is centrally about the body (instead of a way of living through distress) has disconnected the illness, and its treatment, from a growing interdisciplinary recognition of the complex relationships between painful life events and mental illness (see Romme and Escher 2012). Accounts of being ‘looked after’ by anorexia reposition the illness, showing it to be a simultaneous response and solution to distress, and elucidate the painful logic of a desire to be ‘left alone’ to ‘quietly starve’, as Chloe put it.
Such narratives thereby suggest that anorexia and its treatment need to be reconsidered in line with recent reflections on the meaning of recovery that have taken place in mental health more widely. In relation to psychosis in particular, these have reconfigured what it means to recover, framing this as living well with illness rather than necessitating the eradication of clinical symptoms (see Hall et al. 2013; Myers 2010). Against this background, how might the desire to remain anorexic be engaged with in the clinic, in order to step between the binaries of ‘cure’ or treatment failure? What forms of care might such a rethinking mobilize? And, what are the ethical and human implications of this challenge to current ways of conceptualizing illness and recovery in anorexia?
Thus, engaging with the desire for anorexia has both a clinical and anthropological imperative. It poses questions that cut across disciplines, inviting an urgent, situated, and sensitive revisiting of concepts such as health and harm, ‘chronicity’ and ‘recovery’ as these are lived and challenged by individuals themselves.
Recognizing this desire for anorexia also interrupts habitual ways of thinking about whatdesire is, and what can be desirable. This leads to a more theoretical reflection. The image sketched here is at once partial and yet replete with intimate nuance; informants both desire to hold on to their anorexia and acknowledge that it causes immense suffering. Their narratives thereby not only highlight the need for complexity to be integrated within the concept of desire itself, but also provoke the question: how it is possible ethically to take account of, and represent, this complexity in anthropological analysis?
Faced with dissonance and partiality – with narratives, perhaps, that seem not to ‘fit’ – exploring the desire for anorexia calls for an ethical ethnographic attention that does not attempt to neaten, but rather to listen. From field to text, it necessitates avoiding (re-)instating binaries that are blurred and subverted by informants themselves. It requires thinking in ways that engage with simultaneity and multiplicity. This demands balancing clinical realities with informants’ voices, maintaining an ‘ethical ambivalence’ (Butler 2000) that empathizes whilst also not encouraging potentially fatal practices and desires. Attending to the multiple and tangled threads of desire for this illness thereby requires us to draw out, rather than write out, the very felt and lived ambiguities that informants themselves navigate as they live through anorexia.
I should like to thank the many individuals who have shared their stories with me during the course of research. This paper has drawn on two studies: The first was my doctoral research, undertaken in the Anthropology Department at Goldsmiths, University of London, which was funded by an Economic and Social Research Council studentship and which received National Health Service ethical approval. I thank my supervisors there, Simon Cohn and Catherine Alexander. The second study took place at the University of Birmingham with Newman Leung, Charlotte Connor, Max Birchwood, Sunita Channa, and Colin Palmer. The study was funded by the NIHR Collaboration for Leadership in Applied Health Research (CLAHRC) and it also received National Health Service ethical approval. The views expressed in this Think Piece are those of the author and not necessarily those of the NHS, CLAHRC, or the Department of Health.
About the author
Anna Lavis is a lecturer in medical sociology at the University of Birmingham. Her research focuses on illness and caregiving experiences, particularly in relation to mental ill-health and distress. She has presented and published across the social and medical sciences and is co-editing a forthcoming special issue of M/CJournal entitled ‘Corporeal’. Anna holds an honorary post in the Institute of Social and Cultural Anthropology, University of Oxford. There, with Karin Eli, she founded the Body and Being Network, which develops dialogues about the body among social and medical scientists and performance artists.
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