Listen to Our Stories: Young Women with Anorexia Nervosa Speak Out about Hospital Experiences
A Dissertation By Jacqueline Segal
This thesis explores the personal experiences of young women with Anorexia Nervosa (AN) who have been hospitalised in eating disorders units (EDUs). The narratives of seven women aged between seventeen and twenty-four were collected in semi-structured, qualitative interviews. Their experiences of life inside the EDU were examined using a narrative framework. As a recovered anorexic who has been hospitalised in EDUs, I have included my own narrative as a starting point for the framework of this study. Despite the diversity of experiences, a number of common themes have emerged. Findings suggest that hospitalisation in the EDU can be a devastating and counter-therapeutic experience – one in which there is intense competition to be the ‘best’ (or ‘sickest’) anorexic. Against a backdrop where food and weight are given prominence, sometimes at the expense of therapeutic support, anorexic game-play and deceit are rife inside the EDU. Difficulties associated with long admissions render dependence on the EDU and institutionalisation common experiences among those interviewed. However, support and understanding from other in-patients and empathic nursing staff can contribute to worthwhile experiences inside the EDU. This study emphasises the importance of research that directly involves those who have had first-hand experience with AN, little of which has been conducted in the past. Furthermore, it illuminates several alternative suggestions for the treatment of AN, in light of the negative comments directed at the EDU.
I would like to take this opportunity to give my warmest thanks to the seven young women who gave of their time and emotional energy to participate in this study, and to those clinicians who led me to these incredible women.
To Richard, thank you for your invaluable ongoing support, your constructive feedback and, of course, your fabulously dry sense of humour, without which supervision would not have been nearly as enjoyable.
To my family and friends, thank you dearly for being there, not just during the lifetime of this thesis, but during all those years when I myself was so unwell.
And finally, to Jan and Chris, who helped me replace subsistence with life. “Thank you” is most inadequate!
Without you, this thesis would not exist.
To all the young women who are currently suffering from anorexia, to those who have suffered in the past, and to those who are yet to suffer…and to their amazing families and support networks for standing by them through an oftentimes extended period of treachery.
This thesis is for you.
CHAPTER 1 – BACKGROUND
“In the hospital, I did not get well. I got worse.”
(Hornbacher, 1998: 158)
“You must learn to use your life experience in your intellectual work: continually to examine it and interpret it.”
(Mills, 1959: 196)
Anorexia Nervosa (AN) is an enigmatic disorder that is exceedingly difficult to treat effectively. Indeed, “[a]norexics are notoriously difficult patients, being suspicious, frigid, untruthful, uncommunicative and determined to hang on to their symptoms at all costs” (MacLeod, 1981: 131-132). Medical practitioners and therapists largely rely on hospitalising people with AN in eating disorders units (EDUs) with the aim of reversing emaciation, restoring physical health and preserving life. Yet, in recent times, there has been considerable debate about the efficacy of treatment modalities, especially the EDU.
The purpose of this narrative study is twofold. Firstly, it enables seven young anorexic women to recount their (oftentimes traumatic) stories about life inside the EDU. This is of great importance because there is a dearth of research that has focused on the experiences of those who have lived with AN – those who are the experts of their conditions – and consequently, a paucity of first-hand information, particularly about life inside the EDU. Secondly, emerging from these narratives is an appraisal of the EDU as a treatment for AN. Numerous advantages and disadvantages are illuminated by those who have lived inside the EDU. Bringing their expert voices into the public arena is vital if changes are to be made to the treatment of AN within the EDU.
AN is, by nature, a disorder in which individuals are deficient in self-esteem and autonomy. The struggle to control eating and weight are important mechanisms by which individuals strive to assert control. Ironically, research which continues to ignore the first hand experiences of the experts themselves perpetuates this disempowerment. This study provides an arena in which these often ‘voiceless’ young women can express feelings (be these positive or negative) about their treatment, and it is original and important for these reasons.
This is a narrative study, thus prominence is given to the stories that the participants recount. One may ask, “Why tell your story?” Story-telling or ‘narrativising’ (Riessman, 1993) is not only an effective and accurate first-hand transmission of information, but the process is an empowering experience – it is therapeutic in its own right and it effectively establishes a rapport between author and listener/reader.
As a recovered anorexic who has been hospitalised on numerous occasions, I am intensely aware of my own story and perceptions of the treatment that I received inside the EDU. “The temptation to study persons or situations that are familiar to us can be powerful. Many a valuable study has had its origins in personal biography” (Padgett, 1998: 26). Indeed, this study is grounded in the narrative of my personal experience of anorexia as an in-patient in an EDU. This is a technique known as “auto-ethnography” (Van Maanen, 1988) – “a turning of the ethnographic gaze inward on the self (auto), while maintaining the outward gaze of ethnography, looking at the larger context wherein self-experiences occur” (Denzin, 1997: 227).
Upon reflection about my experiences, I developed an interest in learning about the stories of other young anorexic women who had also spent time in the EDU. By telling my story (The ‘Breeding Ground’, p.9) and inviting other young women to share their narratives, a wealth of personal experience about in-patient hospitalisation in EDUs has emerged. Acknowledging the stories of young women who have lived through AN underscores the fundamental social work values of self-determination and autonomy.
This is a phenomenological study in which I have attempted to access the ‘lived experiences’ of the participants – to enter their perceptual worlds (Lomas, 1973; as cited in MacLeod, 1981: 138) and gain insight into their narratives. Through participating in qualitative interviews, these women were given the opportunity to recount their stories and re-live their in-patient hospital experiences. For most, it was the first time that they were able to evaluate their treatment and talk freely with an ‘insider’ who had shared a common experience.
It is hoped that these narratives will raise an awareness in treating professionals about the personal experiences of their clients and prompt a re-evaluation of the efficacy of the EDU for young women with AN. The ‘lived experiences’ of these young women can no longer be ignored, and they will speak out throughout the following thesis.
“Anorexia nervosa is a serious psychiatric disorder with unacceptable morbidity and mortality rates” (Griffiths et al, 1997: 525). The treatment for AN is “difficult and controversial” (Touyz et al, 1984: 517). However, as a result of the dangerous effects of starvation and weight loss, “[t]here is now a general consensus that the restoration of a normal weight is mandatory if treatment is to be successful” (Touyz & Beumont, 1985: 20). Indeed, “nutritional rehabilitation is essential to recovery” (Russell & Meares, 1997: 693), yet ‘refeeding’ is only the first step in treatment.
It has been claimed that “refeeding works best in an environment that has been defined as holding, in which caregivers provide a safe, firm, caring environment” (Fisher et al, 1995: 430). However, how to best achieve this ‘holding’ environment is a contentious issue. As yet, there is no definitive agreement on how to attain meaningful recovery. Indeed, the “successful recovery from anorexia, as opposed to the temporary fattening-up of the hospitalized anorectic is notoriously difficult” (Orbach, 1993: 100).
The vast majority of eating disorders literature contends that most patients with AN require in-patient hospitalisation (Beumont et al, 1993; Beumont et al, 1995; Fisher et al, 1995; Kreipe & Kidder, 1986; Powers & Powers, 1984). Indeed, it has been argued that the majority of successful treatment programs have included in-patient admissions (Crisp, 1965 & Russell, 1977; as cited in Powers & Powers, 1984). Powers & Powers (1984) assume that success can be measured exclusively by weight gain, irrespective of improvement in patients’ psychosocial functioning. However, an holistic approach to rehabilitation of an individual with AN would surely involve physical, emotional and psychosocial factors.
From the 1970s to the early 1990s, the dominant treatment ideology for AN was behavioural modification. The operant paradigm for AN involves “isolating patients from material or social reinforcers that are delivered contingent upon specified amounts of weight gain or caloric intake” (Bemis, 1987: 433). Some believe that the hospital provides the necessary degree of “environmental control required for the manipulation of reinforcement contingencies” (Bemis, 1987: 435).
There are two primary reasons for the preference for hospital treatment. Firstly, “there is a high prevalence of physical morbidity indicating a need for access to general medical facilities” (Beumont et al, 1995: 96) to counteract and treat “the dangerous effects of starvation and weight loss” (Powers & Powers, 1984: 523). Some of these physical effects include life-threatening abnormalities in electrolyte levels and cardiac function, liver and kidney failure, dangerously low blood pressure and general hazardous consequences of malnutrition and dehydration (Beumont et al, 1995; Garner & Garfinkel, 1997). The second reason is the appeal of the rapid weight gain achieved through behavioural modification techniques (which can be implemented relatively easily by hospital staff [Vandereycken & Beumont, 1998]). It has been widely observed that until the starvation process can be reversed, patients are not responsive to psychotherapy (Bemis, 1987; Bruch, 1978b; Danziger et al, 1989). Thus, hospitalisation aims to reverse starvation as quickly as possible.
However, “there is more to the treatment of anorexia nervosa than inducing weight gain” (Bruch, 1978b: 93). Indeed, it has been suggested that “[l]ike prisoners, hospital patients are oriented towards the day of release” (Davis & Horobin, 1997: 217). In the case of AN, discharge requires weight gain, yet “[q]uite often the patient will eat and gain weight in order to get out of the hospital – and then will lose again” (Bruch, 1978b: 95). It has been demonstrated that “weight gain alone is a misleading sign of recovery” (Bruch, 1974: 1422), especially if it is not coupled with psychological improvement (Bemis, 1987). As such, “[t]here has been considerable controversy about the merits of hospitalisation” (Bruch, 1978b: 94). Several experts in the field (Bemis, 1987; Bruch, 1978a, Goodsitt, 1985; Levenkron, 1977, 1985; Sanger & Casino, 1984) believe that behavioural modification “is a dangerous tactic that intensifies the sense of helplessness and hopelessness that originally precipitated the development of anorexia nervosa” (Griffiths et al, 1998: 443-444).
Currently, there is increasing evidence about the lack of efficacy of hospitalisation for people with AN. In a recent study, Ben-Tovim et al. (2001) found that patients with anorexia are no more likely to recover if they receive hospital treatment than if they remain untreated. Furthermore, in-patient care has been described as “intrusive” (McKenzie & Joyce, 1992: 240), because it removes individuals from their natural environment, “penetrates the private reserve of the individual and violates the territories of his self” (Goffman, 1961: 29). Additionally, one can argue that the unnatural structure of the in-patient EDU “negates what little autonomy” (Kreipe & Kidder, 1986: 655) the patient retains.
‘Anorexia nervosa’ has frequently been interpreted as a response to feeling out of control and as an attempt to assert control by controlling the body (Bruch, 1974)” (Malson, 1998: 121). Indeed, “[u]sually the anorexic syndrome emerges, not as a conscious decision to get as thin as possible, but as a result of her having begun a diet fairly casually…having succeeded splendidly in taking off five or ten pounds, and then having gotten hooked on the intoxicating feeling of accomplishment and control” (Bordo, 1993: 149). Diet is one aspect of life over which the individual can exercise control (Bordo, 1993; Bruch, 1978b, Touyz & Beumont, 1985), and for those who are often described as being “deficient in their sense of identity, autonomy and control” (Bruch, 1978b: 39), the ability to control one’s eating provides a window of opportunity to re-establish these perceived deficits. However, inside the EDU, control is taken away from the individual and handed over to the ‘authorities’ (Moldofsky & Garfinkel, 1974), thus the process of regaining control (over body, eating and other aspects of life) is ironically inconsistent with in-patient hospitalisation.
The most compelling argument highlighting the disadvantages of in-patient hospitalisation comes from Bruch’s landmark study, “Perils of Behavior Modification in the Treatment of Anorexia Nervosa” (1974). Bruch describes behavioural modification programs as dehumanising, humiliating and counter-therapeutic. She believes that programs focusing on weight as their primary concern are inadequate and successfully invalidate other issues at the root of non-eating and weight loss. Bruch asserts that most patients with AN will gain weight in hospital “under the pressure of persuasion, force or threats” (1978a: 651) but that the weight gain is transient, and is frequently lost soon after discharge. She metaphorically describes patients as ‘eating their way out of hospital’ (Bruch, 1974) as a means of escaping the punitive, coercive environment. Bruch also believes that underlying fears of helplessness and lack of control, common in young women with AN, are overlooked in behavioural modification programs, whilst worthlessness and isolation are reinforced by “making social contacts dependent on weight gain” (Bruch, 1978a: 646).
Hospitalisation as “loss of self-determination” (Goffman, 1961: 44) arises as a theme in Bruch’s work (1974, 1978a,b) and in Garrett’s (1997) personal account of recovery from AN. Garrett defines recovery as a multi-dimensional, ongoing process in which individuals abandon food and weight concerns through gaining a sense that “their lives were meaningful; believing they were worthwhile” (Garrett, 1997: 264) and actively creating a “new, recovered self” (Garrett, 1997: 270) by the process of Narrative Therapy. Garrett (1997) recognises that the loss of autonomy consistent with in-patient treatment presents several problems. Indeed, there are two potentially conflicting professional responsibilities for carers of patients with AN. These are (i) the effective treatment of the patient’s illness, and (ii) respecting the patient’s autonomy (Russell, 1995; as cited in Vandereycken & Beumont, 1998). This dilemma is illuminated by Russell & Meares (1997: 692), who state that, “[r]efeeding, life-saving although it may be, can be experienced as persecutory, since it removes the sense of self achieved through agency, leaving emptiness, vulnerability, depression and anger in its wake”. Inside the EDU, treatment of the illness takes priority over self-determination and autonomy. This is illuminated by the lack of research that involves patients’ own opinions about their treatment.
Indeed, “[r]emarkably little is known about how anorexics perceive…treatment – because investigators have shown little inclination to ask them” (Bemis, 1987: 454). There is a significant gap in eating disorders literature about the ‘lived experience’ of the in-patient herself (Garrett, 1997). Ironically, “the opinions of patients regarding the hospitalization are rarely considered” (Kreipe & Kidder, 1986: 650). However, “[t]hose clinical studies of anorexia nervosa and recovery which have trusted patients’ ideas and given them a voice have provided far richer understandings (eg. Bruch, 1973, 1978, 1988; Beresin et al, 1989)” (Garrett, 1997: 263) of the experience of AN.
Indeed, when researchers do ‘show the inclination’ to ask the ‘experts’ about their experiences, a negative appraisal of the EDU begins to emerge. One such study is Griffiths et al. (1998) – “Perceptions of Bed Rest by Anorexic Patients”. ‘Bed Rest’ (see Appendix 7) is intended to facilitate weight gain, and whilst professionals claim that it acts as an incentive to gain weight, patients often see it as coercion. The outcome of this study showed that 96.3% of patients found bed rest to be an unpleasant experience primarily because of the coincident boredom, isolation and depression.
Whilst proponents of in-patient hospitalisation claim that the peer pressure on the ward “contributes significantly to patients attaining weekly weight gain” (Touyz & Beumont, 1985: 17), and thus to recovery, Warin (as cited in Rouse, 2001: 1) describes the in-patient treatment setting as “dangerous and cult-like” – a place where anorexics compete “to be the best at not eating” (Rouse, 2001: 1). Furthermore, “[i]t’s like a club with its own hierarchies, and within this club it’s a highly competitive world” (Rouse, 2001: 2). Personal narratives of individuals’ hospital experiences seem to be more aligned with Warin’s (as cited in Rouse, 2001) findings than claims of Touyz & Beumont (1985). For example, Zimmerman & Dickerson (1994) outline a clinical vignette of ‘Jackie’ (the pseudonym selected for a fifteen year old girl with AN) who “traces the turning point of anorexia’s total dominance of her to her first hospitalisation” (Zimmerman & Dickerson, 1994: 300).
“Being in the hospital, I was watched whatever I did. Being on the ward made me more nervous about food. I think it made me much worse to be around others. I saw girls who were skinnier than me. We competed with each other. I don’t think they should have us all together. I felt gross if I wasn’t the smallest” (Zimmerman & Dickerson, 1994: 302).
‘Jackie’ describes the negative impact of her hospitalisation – the competition between the girls on the ward, the desire to be the thinnest and the problems associated with being surrounded by others with AN. Her experience of surveillance in the hospital exemplifies the Foucauldian (1980) concept of the “normalising gaze”. The policing and scrutinising of anorexics in the EDU renders them “docile bodies” under the ‘subjugation’ (Foucault, 1979) of the ‘authorities’. Indeed, “[f]rom a Foucauldian perspective modern individuality is produced precisely through the exact observation and detailed examination of the body and the self (Foucault, 1977b) that is exemplified in ‘anorexia’.” (Malson, 1998: 169)
Another documented narrative reveals that ‘Rebecca’ experienced her hospitalisation as dehumanising, reducing her identity to numbers –
“When I’m in the hospital, I feel like a number of calories, a unit of weight, a measurement, not a person…My weight is just painted on my forehead. It’s kind of like the scarlet letter, only different.” (Gremillion, 2001: 9-10)
Hepworth also argues that numbers are of primary importance in the EDU, claiming that “[w]ithin the clinic weight gain is the most significant outcome” (Hepworth, 1999: 96). As a number, ‘Rebecca’ too has been forged as a “docile body” (Foucault, 1979) who has lost her sense of identity. Since many anorexic women believe that they are entitled to only a very limited space on earth (Orbach, 1993: 133), the substitution of a number for one’s identity is likely to intensify the need for a “self-erasing lifestyle” (White, 1986: 60).
Thus, it becomes clear that there is little agreement about how to best assist people with AN to achieve recovery. The fact remains that AN is the third most common chronic condition from which adolescent females suffer (Beumont et al, 1995), yet “[t]he treatment of eating disorders, particularly of anorexia nervosa, remains controversial, always difficult, usually protracted, and often unsuccessful” (Vandereycken & Beumont, 1998: vii). Without an awareness of the experiences of young women who have been hospitalised in EDUs, I do not believe that an adequate and accurate appraisal of this treatment modality can be made.
However, before exploring the experiences of others, I have chosen to present my own narrative, The ‘Breeding Ground’ as an ‘entrée’. This is in keeping with the auto-ethnographic (Van Maanen, 1988) tradition used in this study.
CHAPTER 2 – MY EXPERIENCE
THE ‘BREEDING GROUND’
Anorexia nervosa is a Thief. A Thief and a Murderer. It stole from me five years of life during which time it murdered my spirit and sucked the life out of me, leaving a fragile shell, ready to crumble at every moment.
Anorexia thrives in eating disorders units. It is nourished by the constant focus on food and weight. Members of the in-patient ‘anorexia gang’ compete at every feasible level. Competition to be at the lowest weight, to have the largest number and longest duration of hospital admissions, to be most medically at-risk and closest to death, to eat the least, to lose the most weight between “weigh days”, to take the longest time to push the food around the plate at dinner time…
Anorexia is, by nature, a competitive, selfish disorder – one in which a common character trait in sufferers is perfectionism. The environment of the EDU is conducive to the individual remaining ill and flourishing as an anorexic.
When the day’s six meals had been consumed and the nurses were busy in ‘hand-over’, the gossip sessions would begin. We would stand around (you’d never sit, because standing burnt more calories) in cliques sharing and comparing our stories. There was intense competition about how ill you had been over the course of your anorexic ‘career’. In my ‘curriculum vitae’ of anorexic experiences, I was proud of having been so medically ill, so emaciated, so unwilling to even wet my lips with water (in case I gained weight) that I was tube-fed, naso-gastrically. In the culture of competition, tube feeding ranks highly and is recognised as quite an achievement, a sign of the ‘successful’ anorexic, a status symbol – something that the true anorexic strives towards.
My hospital experiences in EDUs entrenched my disordered thinking, taught me bizarre eating behaviours, exacerbated my poor body image, and drastically increased my knowledge about how to become a professional anorexic and strive to be the best at it.
In the EDU, I lost my identity and became a number. In fact, numbers were very important throughout my admissions. On the first day of my first admission, I was informed of my “minimum weight” (see Appendix 7). This “minimum weight” was intended to represent a minimally healthy platform upon which to build, rather than a number upon which to fixate, in addition to calorie-counting, the number of times you could touch your toes in the bathroom before it became suspicious, the reading of your blood pressure – (the lower, the better, for the anorexic mindset) – the number of days spent in hospital etc. There was constant talk amongst girls about “minimums” – how ridiculously high they were, how unfair it was that they were expected to gain so much weight, how awful and frightening it would be to “be at minimum”, and how “if I eat that piece of cake, then I’ll reach my minimum by tomorrow” (despite the fact that I am 15 kilograms underweight). In fact, a discourse soon emerged whereby “minimum weights” were re-interpreted as absolute “maximum weights” towards which it would be ghastly to approach, let alone reach or pass.
For someone with anorexia, weight is a primary issue, so much so that before admission to hospital, I’d be jumping on and off the scales up to twenty times each day – first thing in the morning, after urinating, after exercising, after a shower, after drinking a sip of water or gnawing on a quarter of an apple…right up until last thing at night before going to bed.
So, the focus on numbers and weight in the EDU reinforces that already entrenched way of thinking. The “numbers game” plays its most significant role when it comes to being weighed. The Scales themselves – upright, shiny, silver, measuring me to the nearest hundred grams, like a piece of fillet steak – were a powerful entity that determined my mood and willingness to eat for the day. If the scales went up, I was devastated and I’d severely ‘restrict’ (see Appendix 7) what I permitted myself to consume that day; if they remained the same, I was ambivalent and my intake would remain much the same; and when the scales went down – especially if by a significant amount such as 0.5 kg (this is highly significant in anorexic terms) – then my internal jubilation and sense of accomplishment soared. It was only when the scales dropped, that I felt I was legitimately allowed to eat – or to eat with slightly less agonising guilt than otherwise.
It is normal for the human body to fluctuate by up to a few kilos each day. However, when I was being weighed daily, numbers became such a focus that I began to equate weight gain with what I had eaten on the previous day, rather than recognising it for the cumulative process that it is. As such, if I gained 300g the day after eating a bowl of muesli for breakfast, rather than a bowl of cornflakes, then it was definitely “the muesli’s fault”…and the status of muesli as a “fear food” (see Appendix 7) was entrenched.
Once I was medically stable, “weigh days” were reduced to three times per week – on Monday, Wednesday and Friday mornings, at 6am. Without exception, I would wake up between 4-5am on these mornings. I would lie in bed guesstimating what my weight would be. Numbers, foods and liquids I had consumed, whether or not I was constipated or bloated, and the level of exercise I’d managed to sneak the day before rampaged through my mind. In fact, my entire ‘head space’ was taken up by this process. At 5:45am I would get up, go to the bathroom (we had to, so as to ensure that we weren’t “water-loading” [see Appendix 7]), slip off my pyjamas and replace them with the fine cotton ‘weigh gown’ given to me upon admission, and pad down towards the end of the hall where the Scales lived. An onlooker would have seen this macabre ritual as a live corpse walking to the gas chambers in a concentration camp. Often the fear of being weighed was so intense that I’d have to go back to the bathroom and try to prevent myself from hyperventilating…And yet being in this EDU was supposedly conducive to recovery!
A month or so into my first in-patient admission, I was given the well-earned label of being ‘non-compliant’ – I was barely eating or drinking and I was losing, rather than gaining weight. Once you earn your status as a “non-compliant” patient, you keep it – it stays with you for your entire admission and for subsequent admissions too.
What to do with Miss Non-Compliance?…
Put her on a behavioural modification program (see Appendix 7)…
“Programs”, as they were known amongst the girls, were something to be avoided at all costs. I was stripped of everything important to me – my books, my writing material, my music, my cryptic crosswords, my phone calls, my visits from family and friends, my photographs, my sanity…I was left only with my thoughts. Thoughts of suicide. In such a program I had to ‘earn’ back these things – the things that were my only lifeline – by gaining weight. My radio was worth 0.5kg, a shower, 1.5kg, a phone call, 2.5kg, a visit from my parents, 4kg. When you find yourself in this predicament, you quickly learn that you need to eat to establish your self-worth. That a unit of weight and a number on the scales earn you the right to talk to your mother, or listen to your favourite Baroque music as you cry yourself to sleep at night.
Other than the obsession with numbers, the first thing you notice when you enter into the world of the EDU is that everything revolves around food…EVERYTHING. The day is structured into three meals – breakfast, lunch and dinner – and three snacks- morning tea, afternoon tea and supper. Everything happens in relation to meals. Medication is distributed after breakfast and again after supper, bed rest occurs for one hour after each of the three meals, visiting time is between dinner and supper. From 5:30-6:00pm there is an intense scent of anxiety in the air, as everyone nervously awaits dinner.
Meal times are horrendous. Each meal lasts for thirty minutes and each snack for fifteen. Everything is timed and measured and regulated. Usually a nurse sits on your table, eagle-eyed, ensuring that you spread your bread with the “appropriate” quantity of margarine, or that you don’t dilute your orange juice with water. You are under constant surveillance from the “food police” (see Appendix 7).
The silence in the dining room is so loud, it screams…you can hear the anxiety.
When meals are handed out, the moment of truth is lifting the metal lid off the plate to discover what lies underneath…After the initial horror at the content of the food on the plate, eyes dart around the table, measuring the size of everyone else’s meal to determine whose is smaller. You are the subject of excessive jealousy if you are lucky enough to receive the smallest meal. Wide eyes and gaping mouths express the injustice of it all! Comparison and competition are at the roots of anorexia, and so it thrives in an environment where one can constantly measure oneself up against one’s neighbour.
Not only is the difference in the size of meals a problem, but disaster strikes if you happen to land one of the three larger sized dessert spoons. If at all possible, you try to swap yours with a nurse’s. G-d forbid you should have to eat off a bigger spoon than the rest! That would be sign of gluttony and greed.
‘Follow-the-leader’ is the story of the EDU dining room. Newcomers quickly learn ‘how things are done’ from ‘regulars’. During my first admission, I looked and learned…I was stunned by some of the tricks of the trade, but soon enough I found myself behaving in precisely the same manner. When it’s raisin toast for morning tea, forests of trees worth of serviettes are used to soak up the excess butter, sneakily, slyly, eating-disorderedly. These are then stuck underneath the tables, the butter serving as glue. Success is when you don’t get caught…Eating a piece of fried fish takes on an entirely new meaning in the EDU. I too was quick to master the art of deftly extracting the “clean”, “untainted” fish from inside the fatty batter. I too learned how to eat a piece of cake without even letting the spoon touch the poisonous icing. Such skills can only be acquired in the company of others who are accomplished at their trade.
Towards the end of my first admission, I recall that my room-mate and I were petrified of being ‘released’. One of the fears we had was not knowing how to judge how much to eat…So one day we waited until breakfast was over and medications were being handed out. We guiltily sneaked into the dining room and stole a brown ceramic cereal bowl – the ones that we were used to eating from every morning. That way we’d know how much we were meant to have and we could be sure that we weren’t indulging in a single cornflake or a drop of milk more than that which we were ‘prescribed’ on the ‘inside’. After six months of having every meal measured out for you and placed in front of you, your hand freezes when it comes to serving yourself…On the ‘outside’, you become responsible for what you eat, and that is terrifying. That bowl was my life-line for three years.
On the ‘outside’, meal times also had to be replicated – if breakfast was not at 7:30am, morning tea at 10am, lunch at 12:30pm, afternoon tea at 3:30pm, dinner at 6:00pm and supper at 8:30pm, then the world was somehow out of kilter. This rigidity comes from weeks upon end of institutionalisation. Fear sets in when you move out of that familiar cocoon, and back into the real world where every glass from which you drink and every bowl from which you eat is a slightly different size, and where there is a choice to buy cornflakes made by Kelloggs or cornflakes made by Sanitarium.
I had to learn to eat again on the ‘outside’. To learn that it was OK to drink when I was thirsty, even if it wasn’t at a meal or snack-time, OK to eat dinner at 7pm rather than at 6pm. To learn that I was far more than just a number of kilos, a mass of body parts. To learn that my “minimum” weight was not my “maximum” weight. To learn that it was anti-social to scrape the crumbs off the chicken, and bizarre to eat the vegetables followed by the rice followed by the fish, ensuring each category of food didn’t touch any other on my plate (as is so common a practice in the EDU). I had to learn how to serve myself and to take responsibility for feeding myself appropriately and not simply eating robotically because if I didn’t, then the others in the unit would be forced to remain in the dining room until I had finished my meal. I had to learn to eat for me – something that you don’t need to do in the EDU.
In this breeding ground for anorexia, it took less than six months to do all this damage, and it has taken me five years on the ‘outside’ to undo it.
CHAPTER 3 – RESEARCH PROCESS
THE NARRATIVE FRAMEWORK
“If you want to know me, then you must get to know my story, for my story defines who I am. And if I want to know myself, to gain insight into the meaning of my own life, then I too must come to know my story…a story I continue to revise, and tell myself (and sometimes to others) as I go on living. We are all tellers of tales. We seek to provide our scattered and often confusing experiences with a sense of coherence by arranging the episodes of our lives into stories”
(McAdams, 1993: 11; as cited in Plummer, 2001: 43-44)
A reading of Plummer (2001) and Riessman (1993) reveals that the Narrative Approach to research is blossoming. In Plummer’s (2001) appraisal of narrative literature, he compiles a list of terminology such as “narratives of the self”, “mystories” and “auto/ethnography” (ibid.: 34) that refers to the telling of the personal, experiential stories that map our own life experiences. Indeed, “[w]e have, each of us, a life-story, an inner narrative – whose continuity, whose sense is our lives. It might be said that each of us constructs and lives a ‘narrative’, and that this narrative is us, our identities (Sacks, 1985: 105)” (Garrett, 1998:31).
I have chosen a Narrative Framework for this thesis to provide participants with the opportunity to talk about their ‘lived experience’ within the EDU and to enable the reader to get a ‘taste’ of these experiences. The Narrative Approach “gives prominence to human agency and imagination” (Riessman, 1993: 5), thus it is well suited to this study of anorexic subjectivity and identity. Furthermore, it “takes as its object of investigation the story itself” (ibid.: 1). The construction and telling of one’s story is an empowering experience for the author. She has control over that which she wishes to disclose and that which shall remain private. This is of great importance for women with eating disorders for whom control, in various manifestations, is paramount.
Through the process of “interpretive practice” (Riessman, 1993: 13), the researcher is faced with the difficult task of selecting which parts of the narratives to include and which parts to omit from the analysis. The “challenge is to find ways of working with texts so the original narrator is not effaced, so she does not lose control over her words” (ibid.: 34).
THE QUALITATIVE PARADIGM
Participants are often “forgotten” (Gibbs, 2001: 39) in the research process. However, in this study, they have been “valued as knowledgeable and experts in their own right” (Gibbs, 2001: 39) – they are the ‘owners’ of the narratives that they tell. Thus, I chose a qualitative methodology in order to ascertain the uniqueness of experience that can only be captured by becoming “immersed in the world of the respondent” (Padgett, 1998: 34) and “decreasing the distance between the researcher and the informants” (Krefting, 1991: 217).
A “Judgement Sampling” (Burgess, 1984: 55) technique was used to gather a sample of seven young women between the ages of 17-24 years. I chose this technique so that participants could be “selected for study according to a number of criteria established by the researcher…or previous experience that endows them with special knowledge” (ibid.). Indeed, the four essential criteria for participants in this study were:
- female, between 15-24 years
- currently has, or has had AN
- has had at least one prior in-patient hospitalisation for AN in an EDU
- not currently an in-patient in an EDU
My reasons for establishing these criteria are numerous. Firstly, my own experience in the EDU occurred when I was a young woman, and as such I wished to explore the experiences of other young women, of approximately my age. The category of 15-24 years was not arbitrarily selected, but stands as a cohort in the Australian Bureau of Statistics (ABS) data, thus the data collected can be of potential use in future research or can be compared to other data relating to females of that age group. Secondly, the aims of the study necessitate that participants have experienced AN, and have been hospitalised at least once in an EDU. Thirdly, out-patients were selected rather than in-patients in order to avoid the lengthy and oftentimes futile process of applying for ethical approval from hospitals and because eating disorders in-patients are already a highly researched population group.
It is clear from the outset that this sample is not representative of the entire population of people with AN, nor of those young women between 15-24 years with AN who have had at least one in-patient hospitalisation, but who are not currently hospitalised. Thus, the degree of “generalisability” from the results is limited. The purpose of the study, however, is “to capture depth and richness rather than representativeness” (Padgett, 1998: 50) – to examine the unique experiences of individuals and to raise an awareness of issues of concern to those who have had an in-patient experience in an EDU, rather than to claim that all young women with AN have identical experiences.
A purposive sample of clinicians (including psychiatrists, clinical psychologists, social workers and dietitians) who specialise in the field of eating disorders was used to access the sample. Letters detailing the purpose of the study and the role of the clinician in distributing information to potential participants were sent to these clinicians in May 2001 (Appendix 1). Additionally, I was informed of an out-patient eating disorders clinic in the ACT. I applied to and was granted ethical approval from the ACT Health and Community Care Human Research Ethics Committee on 9 July 2001. However, this avenue was not pursued as the sample from Sydney rendered sufficient data for the purpose of this small-scale study.
Clinicians distributed Participant Information Sheets (Appendix 2) to clients who fulfilled the research criteria and who expressed interest in participating. Potential participants either contacted me, or their clinicians provided me with their contact details, after both clinician and potential participant signed a form consenting to the release of contact details (Appendix 3). From here, interview times were organised.
For participants under 18 years of age, a parent/guardian was required to read the information sheet and co-sign the Participant Consent Form (Appendix 4) prior to the interview. For those 18 years and above, signatures on consent forms were obtained at the time of the interview. In order to recognise the commitment made by participants in this project, I included a statement about my own commitment to an ethically sound study in which participants would be highly valued. My decision to do this was grounded in the belief that in doing so, the research process becomes more empowering for the participants.
Each participant took part in one semi-structured interview conducted by myself. Interviews lasted between 55 minutes and 1 hour 35 minutes, and took place between July and October 2001. These interviews commenced with nine short-answer factual questions, after which eight open-ended narrative style questions were posed, enabling participants to freely begin to recount their stories. Please see the attached interview schedule (Appendix 5).
Three of the seven interviews were conducted at UNSW School of Social Work in an attempt to provide “a meeting place that is neutral for both respondent and interviewer” (Grinnell, 1993: 274), in which a quiet room could be used for the purpose of obtaining an interruption-free environment, amenable to tape-recording the interview. However, in the case of four participants, for whom travelling to UNSW was not feasible, alternative locations for the interviews were negotiated. Three of these interviews were conducted at the homes of participants and one was conducted in a city hotel. Indeed, Grinnell (1993: 273-274) notes that “[b]ecause people generally are more comfortable in familiar surroundings, the best location often is in the respondent’s home”.
According to Van Maanen (1988: 131), “crunching text requires text to be first put in crunchable form” thus all seven interviews were tape-recorded so that I could transcribe them. Once the narratives were transcribed, a process of familiarising myself with the texts began. The small sample size enabled me to engage in manual rather than electronic coding techniques.
Analysis of the narratives followed a Grounded Theory Approach (Glaser & Strauss, 1967), whereby core themes are derived inductively. However, I not only sought to extract themes from these texts, but I paid critical attention to the language of the participants. Indeed, linguistic construction such as choice of vocabulary and verb tense is as much an integral part of the stories as the content.
Ethical clearance for this study was granted by UNSW School of Social Work Ethics Committee in April 2001.
Participants were informed about the study directly by their clinicians to ensure that they did not feel pressured into participating. Participants were given information sheets detailing the purpose of the study and their role in it (Appendix 2). They were informed of their freedom to withdraw from the study at any time without this interfering with their current treatment.
Participants consented to interviews being tape-recorded and were made aware that raw data would be securely stored in the school of Social Work, UNSW, for 5 years, after which time they would be destroyed. If at any time within those five years any individual requests the tape to be returned to her or destroyed, then this will be done. Randomly selected pseudonyms replaced participants’ real names, and the names of clinicians and services from which participants were accessed have been altered. Informed Consent Forms (Appendix 4) detailed the above information, and as such, participants were aware of their rights before embarking on the research process.
A further point of ethical consideration is my own experience in EDUs. As a result of regular supervision and “reflexivity” (Fook, 1996) – “the ability to examine one’s self” (Padgett, 1998: 21) and to understand and acknowledge the impact of personal beliefs and biases on the study – this study remains participant- rather than self-focused. I recognise that as researcher, I am “part of the research, not separate from it” (Krefting, 1991: 218), and armed with this knowledge I have sought to understand the impact of my ‘insider’ status on the research.
Therefore, the process of ‘member checking’ (Padgett, 1998) was used in order to seek the respondents’ verification of the data collected to guard against my own biases. This involved summarising the findings from the seven interviews (Appendix 6) and mailing these to participants, providing them with the opportunity to give feedback. This process also contributed to the empowerment of participants and the recognition of their active role in the research process.
Explanatory key before proceeding to Chapter 4.
Bold, italicised words Emphasis given by speaker
= Overlapping speech
… (i) Pause in speech, or
(ii) A portion of text has been omitted
[ ] Words inserted into square brackets do not appear in the original text.
CHAPTER 4; SPEAKING OUT
“The hospital became a haven for me, as it does for many of us…Life stops. Time stops. You become a case, a study, a curiosity, a problem, a sickness, a child”
(Hornbacher, 1998: 159)
Hospitalisation in the EDU is described by many of the young women interviewed as a time of confrontation with their AN, a time when the realisation of ‘being anorexic’ sets in. Libby recalls,
“So, then suddenly I was whacked into an institution, everyone around me was really underweight, really sick…I guess I had to think, ‘Well, maybe I’m really sick too because I’m in here’…so, I guess first going into hospital was…was a huge realisation for both me and those around me…that I was actually sick”.
Libby’s choice of language – the passive voice coupled with the vivid activity of the verb ‘to whack’ in “I was whacked…” – seems somewhat paradoxical. However, it exacerbates the intensity of disempowerment and loss of control she experienced when she was first hospitalised. Furthermore, this emotive expression emphasises the stark reality of Libby’s predicament.
Not only did Libby’s admission to the EDU confront her with her illness, but it also urged her to consider her sense of identity. Indeed, she describes hospitalisation as fuelling her identity as an anorexic –
“It just totally feeds into that self identity as…a walking piece of anorexia. Y- you just see yourself…or I began to see myself as just, not even, not a person, just a 2-dimensional…lump of living flesh that was concerned with how much fat was on that piece of flesh and the only thing that was in my mind was anorexia, and all I was was anorexia…And so you become more reliant on it…because, that’s for me, that was a huge reason why…I think for most people, why you, you first get that eating disorder is because you feel there is a void in your life, you feel you’re not of enough worth to just be you and so you become reliant on being anorexic because it’s your way of appraising yourself, an[d] having self-worth. An[d] so when you get into an environment where everything is about weight, food an[d] shape, it totally feeds into that self-identity as anorexia…Which means becoming more reliant on it, so you feed into it more an[d] it’s just a vicious cycle an[d] you just go down an[d] down”.
In the EDU, Libby became ‘anorexified’ – she ceased being ‘Libby’ and became anorexia personified. Libby’s frequent use of the verb, ‘to feed into’ is indicative of her ‘anorexification’ – even her vocabulary is food-related. The environment of the EDU enables in-patients to indulge in an anorexic mind-set and encourages a “self-identity as anorexia”. The focus on “weight, food an[d] shape” inside the EDU creates an inescapable ‘anorexia-world’, inside which AN becomes more powerful and ‘weightier’, controlling, or ‘anorexifying’ the individual. Indeed, Libby states, “overall I found that it wasn’t very beneficial, an[d] more than anything it actually reinforces the mentality of an eating disorder rather than trying to break away from it”.
In contrast, however, hospitalisation for Michelle was “that realisation, um, I wasn’t, I was not nearly as in control as I thought I was…It sort of opens your eyes and you go, ‘Oh my Gosh!'” The EDU was Michelle’s last resort – “It was basically, I feel now, the only thing I was able to really do in the circumstance”. Nicole’s view expands upon this – “I think that I needed to be in hospital to be confronted with what I was doing to myself…so, for me I felt that going into hospital was really, um…really beneficial”. Thus, for Michelle and Nicole, hospitalisation was a valuable experience at a time when AN had ‘consumed’ their lives.
The EDU represented respite and sanctuary from the chaotic exercise-obsessed lives of Tia, Nicole and Lauren. Tia admitted (in a soft voice, with downcast eyes), “I was sort of looking forwards to going back into hospital where I didn’t have to exercise an[d] I was allowed to just rest and relax”. Tia’s non-verbal communication in addition to the softening of her voice suggests that she felt guilty for desiring a period of anorexia-free life. When the individual becomes ‘anorexified’, a “tug of war” (Lauren) is established in her mind – the anorexic side of her mind needs her to flourish as an anorexic and the counter-anorexic side strives for her to overcome AN. Guilt then results when the counter-anorexic side defeats AN, as is illuminated by Tia’s comment and her body language.
Throughout all seven narratives a distinctive new language emerges. I shall refer to it as ‘anorexia-speak’, for it represents an adoption of the language of the EDU that quickly becomes incorporated into the vernacular of these women.
Terminology such as “restrict”, “N.G. tube”, “minimum”, “Ensure”, “meal plans” and “water-loading” (see Appendix 7) flow freely throughout these narratives. Indeed, ‘anorexia-speak’ becomes the language of in-patients who are ‘anorexified’ – it establishes in-group status for those who belong to the anorexic family on the EDU. Just as street gangs communicate in ‘dialects’ known only to their members (Whyte, 1943), so too do people with AN. Indeed, none of the women interviewed offered any explanation of the eating disorders jargon that characterised their speech. It was understood that those who had been in the EDU were fluent in ‘anorexia-speak’, thus it was assumed that I was privy to this dialect.
It is of particular interest that ‘anorexia-speak’ becomes so deeply entrenched that it is used liberally even by women who have not been hospitalised for several years. Indeed, as someone with ‘insider’ status who is cognisant of ‘anorexia-speak’, I was oblivious to its existence in these narratives at first. As a result of my own experience, ‘anorexia-speak’ is a dialect that I both use and understand. Through my own reflexivity as a researcher I became aware that someone without the ‘lived experience’ inside the EDU would be unaware of this foreign tongue, thus a glossary of ‘anorexia-speak’ has been included in Appendix 7.
THE EDU – AN INSTITUTION
“To the anorexic, hospital must seem like a prison where she is being punished for seeking autonomy by being deprived of what little autonomy she has managed to find”
(MacLeod, 1981: 112)
The EDU is a highly structured institution. Whilst structure can be important for re-establishing order in chaotic lives, Kate interprets the strict structure of the EDU quite differently –
“So you spent the day just going from, like you had 8 &endash; at 8 o’clock it was breakfast, 10 o’clock it was morning tea, like 12 o’clock, you know, as you know, 2 o’clock, 4 o’clock whatever 6 o’clock. And you just spent the day literally going back into your room an[d] just sitting there waiting for the time, for the next time to eat to come.”
Libby succinctly refers to this as “time cut up by a meal”. The focus on food in the EDU can be interpreted as ‘feeding into’ already food-dominated minds that thrive off dwelling on the meal just consumed and the next meal to come. Thus, the expectation of meals every two hours not only becomes a focus for the anorexic mind, but also structures the day in place of the more conventional structure provided by education, work or leisure. The effect on the individual of these rigid meal times after she is discharged from the EDU is explored below in ‘Release’ (p.37)
Throughout the narratives, comparisons are drawn between the EDU and prison. Kate claims that,
“they treat you as if you’re a prisoner…they take away all your powers…it felt like you were imprisoned….it just felt like they were completely controlling my life…I just felt like I was doing time”.
Coupled with the theme of imprisonment is a strong emphasis on “they” (the clinical staff). This is indicative of Kate’s oppression inside the EDU. Indeed, Kate becomes a “docile body” (Foucault, 1979) inside the EDU. She is rendered powerless under the control of the staff, and is forced to conform with the rules of the institution, lest she risk assuming the status of a non-compliant patient.
The prison metaphor spreads further, as Jade refers to weekend leave from the EDU as “day release” – a damning indictment of the captivity she felt as an in-patient. Furthermore, Tia speaks of two critically ill in-patients who were “on death’s row and everything”. Her linguistic choice vividly creates an image of the EDU as a prison, or perhaps a concentration camp, the latter of which is an analogy I draw in The ‘Breeding Ground’ (p.11). However, the narratives not only include prison-related vocabulary, but also contain pure thematic comparisons. Libby relates,
“I did, for Year 12 I did a study on recidivism in jails, and it’s, it’s exactly the same, because you are treated as a criminal, you are surrounded by criminals, everything you live and breathe is criminal, it just totally feeds into your self-identity as a criminal…An[d] anorexia’s exactly the same thing…you are anorexia, you live an[d] breathe anorexia, your self-identity is anorexia”
Thus, the EDU becomes to the anorexic what prison is to the offender – a breeding ground in which disordered behaviour is exacerbated and thrives.
The prison metaphor is extended further by the theme of surveillance –
“L: I felt very much, very much always watched and especially at meal times…Just um, nurses that would just stare at you, and it was just awful really, and also the whole um, y’know get yelled at if you use the stairs an[d], I don’t know people u-, we always used to joke that there’s cameras everywhere watching us
J: Big Brother! (laughing)
L: Yeah, because they’d always somehow know that you’d been doing something.”
‘Being watched’ becomes a part of everyday life on the EDU. Indeed, Tia refers to “the fish bowl” (see Appendix 7), the purpose of which is, “Um, to make sure we wouldn’t play around with the N.G. tube [see Appendix 7], to make sure we weren’t exercising, to make sure we were there! (laughing)”. As a counterpart to Kate’s ongoing reference to “them”/ “they”, Tia frequently uses the pronouns “we”/ “us” to convey a sense of identification and solidarity with the other in-patients. Thus, the notion of the in-patients as an anorexic family is born.
A fish bowl, in the literal sense, is a cage or enclosed environment. The EDU as a “zoo” emerges as a theme in three of the narratives. Indeed, Lauren remembers that some of the nurses were
“L: fascinated when you = ate, and they’d look
J: = Yeah (laughing)
L: = at you like insects and it was just
J: = (laughing)
L: = not good
J: = yeah, that’s the ‘zoo phenomenon’
L: Yeah, yeah. It was really, that’s what I – I can get very worked up about it sometimes, it’s just cos some of the casual nurses were just, they do treat you like animals.”
Not only does this substantiate the notion of the EDU as a prison (a zoo being a prison for animals), but it also illuminates the potential for the EDU to be dehumanising and barbaric. Thus, being constantly under surveillance creates an atmosphere of captivity.
Jade experiences a feeling of paralysis as a result of the close surveillance –
“yeah, that first day of just being watched and not being able to move an[d], y’know, basically having any aspect of…your ability to think for yourself taken away from you”
The ‘inability to move’ can be interpreted as both literal (movement is severely restricted inside the EDU in order to conserve patients’ energy and maximise weight gain) and metaphorical (all control lies in the hands of “the authorities” [Libby] and the in-patient becomes a puppet in the theatre that is the EDU).
If the EDU is a prison, then the nurses are the warders responsible for surveillance of the patients. In any institution, the main role of the staff is to monitor the clients. Thus, inside the EDU, the nursing staff are the “food police” (see Appendix 7) who observe the in-patients and write notes on their behaviour. Many of the women speak of the harshness and abruptness of the nurses and their lack of understanding of the anorexic condition. Kate believes that “they weren’t the kind of caring motherly types that would have helped”, and Lauren clearly recalls one nurse who was “renowned to hate eating disorder patients”. She recounts an incident when
“everyone had had, for some reason, a particularly bad day, and everyone was just feeling very fragile…an[d] just out of the blue this nurse just yelled at us an[d] said, ‘I don’t give a fuck if you eat or don’t eat’ and stormed off to get her meal. And everyone just sat there and no one ate their meal that night.”
Furthermore, Michelle was disturbed by the lack of trust between in-patients and nursing staff. She speaks of the humiliation of having to “show someone your plate” before leaving the dining room, and of having nursing staff pour her orange juice and butter her bread. She vividly recalls an incident where she had to explain to a friend that she needed to be back on the ward for afternoon tea and was not allowed to eat out with her friend because “they won’t believe me”. Similarly, Lauren states that “they’d never trust you, like ever, ever, ever”. Thus, life inside the EDU appears to become a battle between “them” and “us”, where “we” are the voiceless, untrustworthy minority.
Ideally, the role of the nursing staff should extend beyond mere surveillance to support and encouragement of the in-patients. Nicole and Lauren comment on the benefit of nurses who “did understand” (Lauren), who were prepared to listen and talk at any hour of the night and who would “go out of their way to sort of…check on you…and ask how you were going” (Lauren). Indeed, for Lauren, “when there were the good nurses on, they would just be like the highlight of my week”.
Jade believes that one of the problems of the EDU is that it is “a closed environment” where “everything’s done for you”. Indeed, Libby states that,
“in a way I enjoyed being there because…I, I mean, I’m not diagnosing everybody, but for me, I found that part of the eating disorder was about not having to take responsibility for things in my life, and so, by being in something like that you are, just somebody with a mental illness, in an institute. You don’t have to have any responsibility over anything, an[d] you can just…you know, I sink, I’m helpless and hopeless and…so, I kind of took on that role…whilst you’re in the unit, it’s not your decision to eat, so although the anorexic part of you is saying ‘No, no, no you can’t eat’, the kind of, it’s not quite as strong because you’re thinking, ‘Well, it’s OK, it’s not my choice that I have to eat. It’s m-, the nurses made me eat this, an[d] I didn’t put that butter on that bread, it was the nurses'”
When nursing staff assume the responsibility for ‘feeding’ patients, it becomes possible for these women to eat and gain weight for the wrong reasons. The EDU becomes a place where the patient is not responsible for decisions – she acts because “the authorities” (Libby) require her to do so and she faces consequences if she chooses not to act according to the rules. Thus, the notion of the in-patient as a puppet on a string or a “docile body” (Foucault, 1979) is strengthened.
LIFE ‘INSIDE’ THE EDU
“Nothing will escape the watchful eye”
(Hornbacher, 1998: 159)
Inside the EDU a common fear arises. It is most appropriately encapsulated by the worrisome thought, “Am I sick enough?” Kate felt that,
“watching the other girls agonising over every single bite just m- it makes you then start wondering if you’re doing something wrong if you’re kind of eating normally – it makes you then nearly…copy behaviours. So like I’d see them tearing every piece into tiny little things, so I would s- I noticed by the end I nearly started doing that because you want to fit in”.
Eating ‘normally’ within the EDU leaves patients feeling that they are not sick enough to be on the ward, that perhaps they should strive to become ‘better’ anorexics. Indeed, normality – be it with respect to eating behaviours or weight – seems to create the feeling of being an ‘outsider’. Lauren, who was not emaciated at the time of her admissions, experienced this feeling of being ‘other’ –
“I found it really hard to go in there because I felt, um…I felt like I was the, I dunno like something they would never want to be, like, cos I was reaching a goal weight an[d] stuff like that”.
Normality is interpreted as negative inside the EDU because it is a betrayal of the anorexic self that many seem to perfect and live out during their hospitalisations.
During Libby’s five week admission, she feared, “Well, the nurse isn’t watching me, I mustn’t be sick, therefore I must be fat, therefore I’ve gotta lose more weight”. For those who are less emaciated, less medically at risk or for those who appear to be eating without too many difficulties, the experience inside the EDU can be very destructive. It can result in the feeling that “I’m not successful, I haven’t done anything, I don’t deserve to be there” (Tia). Libby describes the thinner patients as consistently receiving more attention from staff than the “in inverted commas ‘better patients'” and she believes that this “feeds into the idea that ‘I’m not sick enough'”.
The notion that the majority of the clinical attention is given to the sickest patients, at the expense of the others, is corroborated by Tia. When speaking about two critically ill girls, Tia recalls feeling,
“totally jealous, they were really treated as special because they were so sick, they were so skinny and everything…I just thought, ‘Well, why am I here? If they’re so needy and if I’m so well, what the hell am I doing?'”
Jealousy is not uncommon in the EDU. Indeed, Kate recalls,
“I mean the first day I got there, I had one of the girls who was about 35 or something, and had been sick about ten times, and in and out of hospitals, and she was just, she looked at me and she said, ‘Oh, I wish I were as skinny as you are!’ You know, the whole jealousy thing.”
Kate continues to describe the “unbelievable competitiveness” of the EDU –
“K: when you’re put together they compare…an[d] you wouldn’t believe the things said…When we’re served afternoon tea, they, they, you should see the look in the eyes measuring everyone
= else’s slice and things,
J: = yeah, if your cake is you know three millimetres smaller or bigger…Yeah, and I know what that feels like.
K: Exactly, exactly. So, I do think it engend- it encourages competition.”
Competition exists at multiple levels inside the EDU. According to Tia, there is competition to be the skinniest girl on the ward. Jade recalls,
“there’d be competitions for who could not gain weight (laughing), yeah, definitely for most prolonged periods of time which, I mean, I was in there and put on like, whatever, 16, 17 kilos in three months and there was a girl in there that basically stayed the same weight that whole time! (laughing)”.
Jade also speaks of competition to be the slowest at meal times for fear of finishing one’s meal first – a sign of gluttony and a denial of one’s anorexia. Libby describes “games between you and other people, because it’s who can lose the most weight, who manages to restrict the most”. Whilst at the start of her admission competition between the girls on the ward was not endemic,
“towards the end of my stay, a whole lot of new people had come and their, their focus was solely on how to restrict, how to lose weight, how to get out of eating…and that then fostered a real competitive, negative energy because…it was, you could see people, y’know, suddenly someone would be slipping something into their sock (miming this while talking) or chucking something into the, the plant behind you, an[d] just all of the little tricks that people create…An[d] so, by the end it was really, I mean, just really kind of negative an[d] depressing, an[d] not helpful at all”
A hierarchy clearly exists within the EDU. Kate talks about the girls who have been hospitalised on multiple occasions as the “elders”, and Tia refers to “the skinniest girl on the ward” as the “prom (smiling) queen”. These titles of respect show the extent to which those who are extremely ill are admired and “idolised” (Tia). Furthermore, Tia identifies those with the more traumatic ‘illness careers’ (Goffman, 1968; as cited in Weir, 1977:135) as,
“sort of cooler than the others…who’s been sickest the longest – they’re definitely up there…and, um, those who are most underweight, those who went to the most extreme measures”.
The description of my ” ‘curriculum vitae’ of anorexic experiences” (The ‘Breeding Ground’, p.9) defines naso-gastric tube feeding as ranking highly as an anorexic “status symbol”. For some, the EDU becomes an arena for performing well as an anorexic, and receiving recognition for this.
Libby aptly redefines the game-play that is ubiquitous inside the EDU as “deceit” –
“an[d] you see other people doing these tricks like, y’know how to restrict on a glass of orange juice, an[d] you think ‘Oh, I can do that too’, an[d] so you try an[d], you become a master of deceit, really…And, and you get so caught up in those games that you forget, hang on, the reason that I first came in here was because I’m trying to get better…an[d] so your motivation becomes different an[d] any motivation that you did have shifts back onto how to lose weight, how to restrict, which is…all wrong if you’re wanting to get better.”
The shift in motivation described is one of the prominent disadvantages of the EDU – when the focus turns to game-play and competition, the reasons for the hospital admission become clouded and the experience can become counter-productive.
The theme of education – witnessing and mimicking tricks and games that others engage in – is explored by most of the participants. Indeed, throughout the narratives, vocabulary such as “learnt”, “knowledge” and “being taught” arises. Lauren recalls, “it was like you learnt what all the other girls are doing”. Tia admits,
“I think I learnt more than – when I came out than when I went in…I had no idea about exercising to lose weight like that, and I met other girls in there who never counted a calorie in their life until they came out of hospital”
Tia not only received an ‘education’ about exercising as a mechanism to lose weight. She learnt how to falsify her weight by “drinking a hell of a lot of water…fishing sinkers in your underpants…those weights that you wear when you’re exercising”. Perhaps it is Lauren’s astute comment regarding her re-hospitalisation that best summarises the destructive nature of the ‘education’ one acquires in the EDU –
“And also, you know all the, y’know, tricks of the trade and scamming and stuff, and it’s like, ‘I know everything now, how am I supposed to get better if I know everything I can do to…not get better?'”
However, whilst Michelle acknowledges that,
“some people don’t like lots of the eating disorder units because they say that people swap stories and like, ‘Oh, you can do this to lose weight and this and this'”,
she believes that, “you can also swap stories on things that’ve helped…And in that way it’s good”. This suggests that the individual experience inside the EDU is contingent upon (amongst other things) the attitude of the other in-patients. This is explored further in Group Dynamics (p.31).
Perhaps as a result of competition and of the internalised fear, “Am I sick enough?”, a persistent ‘anorexic pride’ emerges in these seven narratives. There seemed to be a need for these women to convince me of their anorexic achievements, lest I be blinded by their near-normal weight appearance at the times of the interviews (it should be noted that only one out of seven participants was underweight when interviewed). Comments such as “I weighed about 55 pounds then, so that’s not much” (Kate), “I didn’t wake up one morning, so I was taken to a hospital” (Kate) and “[Crosby] was only meant for patients with a BMI [see Appendix 7] round 10 or 11, and even though I was there physically, I didn’t really feel like that mentally” (Tia) peppered the narratives of the participants.
In addition to this ‘anorexic pride’ about being severely emaciated and medically at-risk, these women needed to establish themselves as ‘pure’ anorexics rather than bulimics, who rank lower than anorexics in the eating disorder hierarchy, due to the lapses in control bulimics experience during binge/purge cycles. Indeed, Michelle proudly asserts her anorexic identity in the comment, “I don’t vomit or anything!” Furthermore, in a discussion with Lauren, I recalled
“silly things like in hospital whether you’re in the ‘A’ or the ‘B’ bed…in [Westbank] there were four beds [labelled A, B, C, D], but in [Ebbsworth] there was only ‘A’ and ‘B’. And it was always like a bun fight, for if you didn’t get the ‘A’ bed it was like terrible because the ‘B’ bed was like the (laughing) bulimic bed!”
Inside the EDU, this mentality is not uncommon. It illustrates the pervasiveness of the disorder and the ways in which AN can flourish.
The mix of people in the EDU has a significant impact on the individual experience of hospitalisation. According to Michelle,
“the main problem, I think, with being in hospital is it all depends on the people, a lot of it depends on the people you’re in with”
Indeed, those who experienced the EDU as beneficial all spoke of being hospitalised with a group in which “generally everyone was pretty positive with each other” (Nicole). Tia, who had lost count of the number of admissions she has had, asserts that “life was so much easier when everyone else was positive and happy”.
Whilst many of the women discuss the inadequate support from clinical staff, they comment on the benefit of being in close contact with other patients who are experiencing similar difficulties. Lauren recalls “making a pact” with another patient to “give it a go” and Nicole developed a supportive relationship with a room-mate –
“that was really good having her as well, because, I guess at the table as well, where everybody looks at each other’s plates, it was like, it was our goal not to look at other people’s plates.”
Thus, the support of others who are doing well is experienced as “really inspiring and really encouraging” (Tia). Indeed, for Jade, who experienced her hospitalisation as “pretty demoralising”, the “friendships I could make in there, like, the actual other patients were the only thing that made it livable”.
However, Tia and Kate speak of the “bitchiness” between girls in the EDU –
“An[d] it was so bitchy, it was like…imagine getting a group of North Shore, or y’know, pretty well-off girls together…private schools mainly, an[d] just who are so bitchy! It’s hell!” (Tia)
Tia recalls another patient saying “really terrible things to me like, ‘My goodness you’ve got a big piece of cake!'” Comments like this may result in patients refusing to eat – an unhelpful response arising from a destructive, competitive comment.
The “bitchiness” can extend beyond food-related discussions. In Kate’s experience, not only were the other girls not supportive, but
“they ostracised me completely &endash; I remember them saying ‘Oh she must be on drugs cos she’s so skinny’. You know, all these things, I heard them in their little rooms talking about me, um, so there was no fr- no camaraderie whatsoever.”
Thus, the EDU is a microcosm in which the rotten core of human nature is exposed. Tia believes that life inside the EDU becomes a
“psychology game, it was like ‘Big Brother’…get people together, where they’re not allowed to leave, and they’re constantly being monitored, an[d] people just act so weird to each other”.
However, the group dynamics extend beyond this. Lauren describes the best parts of her admissions as those times when there was a small group of between three and five patients. During these times she felt that the group was more supportive and less competitive than when numbers approached twelve or fifteen. Nicole also comments on the impact of group dynamics. She recalls that during her admission there was a boy with binge-eating disorder who “was really hyperactive – he had AD…ADHD…yeah and so that was a lot of relief for the group”. The presence of a male, of someone with an eating disorder other than AN and of someone who is hyperactive, rather than depressed are three ways in which the group dynamics differ vastly in Nicole’s admission to the usual EDU experience. Thus, group dynamics have an important role to play in creating the atmosphere in the EDU, contributing to the ‘lived experience’ on the ward.
Inside the EDU, patients and staff eat together in a communal dining room. Whilst Michelle experienced communal dining as helpful – “if you were gonna try something scary, then people’d often try things together…I know some people find it harder, but I always find the group concept easier”, for Libby, communal dining
“was the most depressing thing I have ever experienced in my life…I went into th[e] dining room at hospital on my first day, and there was just stone dead silence, an[d] everyone just stared at their food as though it was…a mortal sin (smiling) or something… an[d] there was no attempt to be creating a normal environment”.
The use of death imagery emphasises the horror of the dining experience for Libby. Like Libby, Kate reports, “I, I had a nervous, nearly a nervous breakdown every time I had to go in there…[there was] dead silence”. In this tense environment (Michelle recalls “the atmosphere in there could’ve been cut with a knife”), in-patients focus exclusively on the food on the plate in front of them, the food on the plate of their neighbour and on anyone who is eating in a socially acceptable manner. Thus, ‘normal’ eating stands out whilst disorderly eating is the norm.
NUMBERS AND BEYOND
“A life consisting of nothing but eating and sleeping, with the additional perk in return for docile behaviour, is not an adult life and, in my opinion, is also less than a human one. It reminds me of a battery animal being fattened up for the kill”
(MacLeod, 1981: 111)
The majority of patients in the EDU are underweight, thus regular ‘weigh days’ are part of the routine on the ward. Without exception, all of the women interviewed believe that they were weighed far too frequently, and as a result, they become more weight-focused and competitive. Nicole articulates,
“like, I think it, it would’ve been maybe better if they didn’t have to weigh you as often, because I felt that it put too much prominence on it…Like, I felt…I dunno, it made me feel like it was, um…it’s hard to describe, like almost as if I was, um…I found myself sort of like…competing with myself as to how much weight I could not put on”.
Indeed, Libby recalls feeling “a bit like a piece of meat or something (smiling)”. This corporeal simile is one I use in The ‘Breeding Ground’ (p.10) when I describe being weighed to one hundred gram increments as analogous to measuring “a piece of fillet steak”. ‘Being weighed’ is a passive activity, something that is done to in-patients and something that has a de-humanising effect.
Others comment that the word of the scales “would set the mood for the entire day” (Lauren). Lauren recalls that “if everyone’s put on weight, everyone would be so depressed and so snappy, and, um, just really short and sharp with everyone”. Tia recounts with a smile –
“T: You could always tell at breakfast after a weigh day what had happened to people on the scales…
J: Was that by mood or by what they were eating, or, just a bit of both?
T: both, the way how they were eating, if they came to breakfast or not (laughing), if they were on the ward or not (laughing)…yeah.”
Armed with this knowledge, one must consider whether or not it is productive for in-patients to be informed of their weight.
Bed rest after meals (see Appendix 7) is an integral part of the program on the EDU. Described as “horrendous” by Michelle, “demoralising” by Jade and “mental torture” by Lauren, most of the women agree that,
“the last thing you want to do, or the last thing I want to do after a meal, is lie down by myself, in my room with nothing to focus on apart from the food that I have just eaten. It’s just (laughing) psychological torture.” (Michelle)
The recurrence of the word “torture” in these narratives illustrates the intense angst these women feel about bed rest. Indeed, for Libby,
“to be talking and distracting rather than just having to lie there an[d] feel the sensations of, well, what I imagined was my body putting on kilos as I lay there”
was a better alternative than to be isolated and dwell on the meal just consumed.
In-patients who fail to take responsibility for regularly gaining weight by following their “menu plans” (see Appendix 7) and refraining from exercise are sometimes put on behavioural modification programs (see Appendix 7). Tia recalls her experiences on such “programs” as
“T: hell – like they took away everything. I couldn’t even ring my Mum, couldn’t even write a letter, couldn’t wear clothes, I couldn’t go outside and sit in the sun, couldn’t do anything.
J: Did that make you want to gain weight and get well?
T: No! (laughing)”
Lauren believes that “programs” “just made things worse” because they induced depression and exacerbated isolation, mirroring the exact criticisms made in the study of patients’ perceptions of bed-rest, in Griffiths et al. (1998) (see above, p.7). Indeed, Jade’s comment that the EDU “basically denies all human rights” is validated by descriptions of these dehumanising, counter-therapeutic “programs”.
Many of the women interviewed believe that the strong focus on numbers inside the EDU (predominantly on the “minimum weight” [see Appendix 7] that is set for the individual to reach) encourages patients to ‘eat their way out of hospital’ (Bruch, 1974). Tia describes this process as –
“Like, you just think, (smiling) ‘Oh, I hate eating this and I hate putting on weight, but if it means I can get out of here and lose it all again, well then it’s worth it.'”
All seven women recall either ‘eating their way out of hospital’ or witnessing others doing this. When in-patients only eat in order to gain weight so that they can be discharged, they neither address the problems at the root of the non-eating, nor do they eat for the right reasons. Perhaps if there was less focus on numbers, in-patients would be less likely to eat as an ‘escape route’ and more likely to achieve slower, but longer-lasting weight gains and thus more meaningful recovery. Possibly then relapse after discharge and subsequent re-hospitalisation would become less common.
According to Jade, “the only thing that happened in hospital was…like putting on weight an[d] like eating”. Kate also believes that the EDU merely functions as a weight gaining mechanism –
“so they were focused there, I guess, on bringing up your weight & that was the only thing that that y’know was good for. And see again, I believe that’s wrong.”
Ironically one of the only positive aspects of the EDU that Libby mentions is that,
“after being there for a month, there was so much emphasis on food an[d] weight, an[d] you know, we were weighed every second day…everyone in the unit talked about food, that I suddenly went, ‘My G-d, I am sick of this!'”
Thus, the immersion in ‘anorexia-world’ that Libby experiences inside the EDU results in her becoming ‘sick of being sick’. However, Kate and Jade do not experience the focus on food and weight as at all beneficial. Indeed, they express anger that there is more of a focus on food and weight than on individual therapy. Jade states,
“Individual therapy was, it was strange in there, there wasn’t that much, not a lot done…like it’s the time to focus on issues cos you’ve got nothing else to do in there, yet it’s the only thing ignored. It’s like they don’t want to talk about it to you until you get up to this…weight.”
Not only were criticisms made about the lack of individual therapy in the EDU, but the general opinion about group therapy was, “I didn’t find it helpful in (softly) pretty much any way” (Lauren). Libby articulates,
“a lot of those group therapies, they really rely on participation and when everyone’s unmotivated to be there no one really participates, so you don’t get much out of it.”
Jade also feels that “nothing got achieved in groups…no one talks about the real issues”. Both Jade and Lauren believe that “it was more beneficial when the group of us would sit down maybe late at night and start talking ourselves” (Lauren) – “that’s where real work was done” (Jade).
“Unlike much medical hospitalization, the patient’s stay in the mental hospital is too long and the effect too stigmatizing to allow the individual an easy return to the social place he came from”.
(Goffman, 1961: 355)
Whilst Goffman (1961) writes about life inside general psychiatric institutions over 40 years ago, much of what he says can be translated to today’s EDU. Inside the “total institution” (Goffman, 1961), life becomes managed and “formally administered” (Goffman, 1961: xiii) by the social structure. Strict schedules are adhered to, hospital routine is dictated by “rules for patient management” (Goffman, 1961: 347) and the hospital assumes a “custodial role” (Goffman, 1961: 353). In this environment, the alienation that results “frequently has more significance for the patient and his personal circle than do his original difficulties” (Goffman, 1961: 356). Therefore, upon discharge, the patient faces an entirely different set of problems, in addition to those that originally necessitated the hospitalisation.
The degree to which the individual becomes institutionalised inside the EDU appears to depend on two things. The length of the admission and the overall number of admissions to the EDU seem to increase the negative effects of institutionalisation. Jade believes that her three-month admission “was too long, like I think way too long”. Tia, who was hospitalised on numerous occasions, recalls that many of her later admissions became “reunions” –
“I just went around the table, ‘Oh, I know her, I’ve been friends with her for years’…and it did feel like these are like your family now and this is the way how it’s always gonna be”.
Once the other patients became Tia’s ‘anorexic family’, the EDU became her surrogate home. In light of this, Tia’s tearful confession –
“it’s really scary, but, like, you can get worn out of being anorexic, you can get sick and tired of all the games and all the lies, and all the cheating, and all the exercising and that”
becomes a poignant reminiscence, a eulogy of her anorexic experience.
Whilst the women interviewed in this study were hospitalised for periods lasting between four weeks and six months, all admit to becoming institutionalised. Many recall that they were scared about leaving the routine and the “safety” (Kate) of the EDU. Goffman describes the fear of leaving the institution where everything is done for and to patients as, “Can I make it on the outside?” (Goffman, 1961: 70) Indeed, Lauren “just felt very protected there…I couldn’t imagine being out of [Westbank]”. The emphasis Lauren places on the word “being” as opposed to the expected “out” signifies the extent to which the EDU became her lifeline – she could neither imagine life without, nor life outside the EDU.
Libby vividly recounts –
“I got so caught up in the world of…[Davidson]…EDU in-patient life, that I just, I guess I – in a way I didn’t wanna be reminded of what was out there…an[d] friends would come an[d] I felt like I had nothing to say to them an[d] all I wanted to do was go into the room next door an[d] talk to one of the other sick people…you know about w- what did we eat for dinner, an[d] what’s for breakfast tomorrow an[d] really just caught up in it…an[d] I started turning off my mobile phone, an[d] just never answering my hospital phone, an[d] started really avoiding the outside world a lot…Partly because that created conflicts because I had to try an[d] be a person, and it was much easier to just resign myself to be an anorexic than it was to be [Libby], and to have a life outside the eating disorder.”
Libby began to close herself off from the outside world and to retreat into the EDU. Once this occurs, being discharged from the EDU can become almost as traumatic as being admitted. Indeed, to combat the trauma of discharge, Kate recreated her home as an EDU – “I nearly copied what I did in hospital”. Similarly, in The ‘Breeding Ground’ (p.14), I disclose that,
“On the ‘outside’, meal times also had to be replicated – if breakfast was not at 7:30am, morning tea at 10am, lunch at 12:30pm, afternoon tea at 3:30pm, dinner at 6:00pm and supper at 8:30pm, then the world was somehow out of kilter.”
The structure of the EDU can be re-created to the ‘outside’, yet it results in a rigid, non-spontaneous existence. Whilst several of the women interviewed experienced the EDU as “terrible” (Libby, Jade, Lauren), the following exchange between Lauren and I exemplifies ironically the measures that the dependent in-patient is prepared (or in fact compelled) to take in order to ‘bring the EDU home’ –
“L: I even nicked um, bowls, cereal bowls, an[d] (smiling) plates
J: (laughing) Pleased to meet you! (shaking her hand) Is that so you could tell how much exactly you were meant to have?
L: (smiling) Yes!
J: Right, yeah, OK.
L: I still do that.
L: An[d] I just = like
J: (laughing) = I didn’t realise anyone else had done that!
L Oh, you did that?
J: Yeah, you bet, I stole a cereal bowl because I had no idea how much, how I’d be able to know, I wouldn’t be able to sort of tell whether I was eating enough or too much
L: Yes, or too much
J: or G-d forbid too much! (laughing)
J: And yeah, I wanted to get one of the cups, and then I thought, ‘Naaaa, I’m not gonna go that far’
L: I took, what did I take? Four bowls and a cup, I think. So embarrassed (laughing)! An[d] I took one for my friend who left before me. She said, ‘Oh, that’s a really good idea, take one for me’. An[d] so I had everything,
L: Everything was very secure for when I came back…
J: I, I can relate to that so much. I remember the traumas that I went through when I eventually discarded those bowls and I was always terrified, cos I, I only had one, and I was always terrified, “What if it’s being washed up and it gets broken?”
L: (smiling) Yes!
J: “What on earth am I going to do? (in a self-mocking tone of voice) How will = I survive without my cereal bowl?
L: = I survive, yeah”
Thus, the cereal bowl is not only symbolic of the dependence that the EDU can foster in in-patients, but it illuminates the need of the in-patient to take a piece of the EDU home with her – a macabre memento of her experience inside the EDU.
When in-patients become dependent on the EDU, life after “release” (Jade) can be so difficult that it is often easier to relapse and be re-admitted to the safety of the EDU. Thus, the revolving door is set in motion and ‘anorexification’ continues.
CHAPTER 5 – IN SUMMARY…
In stark contrast to the majority of literature that proposes that the EDU is the best form of treatment for AN (see above, p.3), the narratives of these seven women and my personal experiences inside the EDU would suggest that this is not always correct. Indeed, these narratives, coupled with the exceptionally high rates of relapse (quoted as up to 88 percent [Hsu et al., 1979]) appear to indicate that the ‘lived experience’ in the EDU can, in fact, exacerbate the disorder.
Whilst specific and limited advantages of the EDU were illuminated by the participants, the overriding impression that emerged was one of negativity – that the EDU is a “bandaid” (Jade), and that the disadvantages ‘outweigh’ the benefits considerably. Indeed, it is clearly problematic that the EDU is intended to treat AN, but often results in its promotion.
Perhaps the most significant disadvantage revealed in this study is the competition (endemic inside the EDU) to be the best anorexic. This is of particular importance because it is consistent with Warin’s findings (as cited in Rouse, 2001) about the dangers of in-patient hospitalisation (see above, p.7). In this competitive environment, jealousy towards those who are thinnest or most medically at-risk is rife, and individuals can become sicker as they strive for anorexic perfection.
Furthermore, on the basis of the narratives discussed in this thesis, the EDU could be conceived of as a ‘university’ for AN – a place of further education where one learns how to become a ‘better’ anorexic, simply by watching the eating behaviours of others or by listening to the boasting of ‘successful’ anorexic ‘career women’. Ironically these women do not speak of learning how to recover from AN, only of learning how to deceive, how to manipulate and how to play games. This ‘education’ can serve to render individuals wiser anorexics upon discharge.
Inside the EDU individuals become ‘anorexified’ by the focus on numbers and eating. This behavioural focus “feeds into” (Libby) the anorexic mind-set and reinforces the anorexic identity. Furthermore, it seems to heighten the sense of helplessness and disempowerment of in-patients, as is suggested by Griffiths et al. (1998) (see above, p.5), and can contribute to the individual’s experience as a “docile body” (Foucault, 1979). Bruch (1974) criticises the excessive emphasis on weight gain at the expense of psychosocial rehabilitation (see above, pp.5-6) and without exception, each of the participants echoes her sentiments. Surely one must ask why these problems which were identified by Bruch in 1974 have not yet been addressed some twenty-eight years later?
Of concern to most participants was the phenomenon of institutionalisation, a direct result of the length of time required to achieve the designated number – the “minimum weight”. Several of the women illuminated specific examples of the difficulties that they faced upon discharge from the EDU and re-entry in society. Such difficulties are extensively explored in Goffman’s (1961) writing (see ‘Release’, pp.37 & 38).
My own analogy of the EDU as a “breeding ground” for AN (see The ‘Breeding Ground’, p.9) appears to be a relevant and accurate appraisal. Jade articulates the dangers of the EDU as a “breeding ground” for AN in her chilling comment –
“I met friends afterwards who’ve had depression and…been chucked in with like eating disorders people and then acquired eating disorders”
Eating disorders are not physiologically contagious. However, if individuals without eating disorders can develop them when hospitalised in the company of others with eating disorders, then the problematic nature of the EDU as a “breeding ground” for AN is illuminated. Is a stronger warning than this required to raise an awareness of the need to alter the current treatment modality of the in-patient EDU?
Despite these numerous destructive elements of the experience in the EDU, it must be acknowledged that the EDU plays a significant confrontational role – for most participants it effected a realisation of the severity of their disorder and their need to be helped. Furthermore, some described the EDU as beneficial in lessening feelings of isolation and reducing the burden of the illness. For others, communal dining seemed to prove useful in assisting recommencement of eating after periods of starvation. For still others, the EDU presented itself as a haven that allowed them respite from a chaotic lifestyle &endash; a sanctuary where appraisal of one’s life and the consideration of an alternative anorexia-free future was possible.
However, the present research was not only an exploration of the advantages and disadvantages of the EDU. Of equivalent importance to the outcomes of the study, is the process that enabled the participants to share their stories. Indeed, many of the women thanked me for providing them with such an opportunity, stating that they felt particularly comfortable disclosing personal information to someone who ‘knew what it was like’. Comments about the empowering and cathartic impact of participation are a sign of the success of this study, yet simultaneously suggest that the opportunity to voice opinions about treatment might not arise in the therapeutic interventions that these women receive.
LIMITATIONS OF THE STUDY AND FUTURE RESEARCH
This thesis fills a gap in the eating disorders literature about the personal experience of AN, more specifically, the experience of young anorexic women inside the EDU. Thus, it is of significance in its field. However, there are a number of limitations that could be remedied in future research.
As I have noted above (p.17), the small number of women who participated in this study prevents me from drawing broad conclusions that can be applied to the entire population of young women with AN. A larger, Australia-wide or international sample would allow for results to be more readily generalised across the population of young women with AN who have been hospitalised in EDUs.
This study was tailored to individuals who were prepared to talk about their admissions to EDUs. Some women with eating disorders find it very difficult speaking about their illness, and many who have recovered do not wish to remember or re-live their illness experiences. For others, AN is a very private experience, and sharing it with a ‘stranger’ can be daunting. This thesis did not reach out to those who had experienced life in the EDU, but who were unable to talk about it at this time. If participants were to be given the opportunity to write about their experiences rather than being interviewed by a researcher, this might enable more women to disclose their stories, thus contributing to a growing and varied bank of personal stories.
Six of the women interviewed had been hospitalised in private EDUs, thus there is a distinct under-representation of experiences in the public system. Whether or not hospitalisation in private or public EDUs impacts upon the individual’s hospital experience cannot be determined from the current study. Future research could ensure that the sample includes more comparable numbers of women from each sector.
I chose to focus on the qualitative experiences of participants at the expense of making any statistical correlations, several of which could have been calculated. For example, correlations could have been made between the experience in the EDU and (i) the specific unit in which the admission occurred, (ii) the length of the admission, (iii) the number of previous admissions and (iv) the duration of the illness. Any or all of these factors might have had an effect on the individual’s appraisal of her treatment as positive or negative, beneficial, futile or destructive. A larger study employing a mixed qualitative and quantitative research design could investigate the role and impact of variables such as those listed above.
Finally, a number of issues lie beyond the constraints of the present study, such as the impact of experiences that were external to the EDU, and a lengthier future project could more thoroughly explore those themes.
My narrative (The ‘Breeding Ground’, pp.9-14) is a very negative one filled with anger and despair. However, upon hearing the stories of the seven women who participated in this study, I have been able to detach myself from and re-reflect upon my own experiences inside the EDU. Whilst my perception of my in-patient hospitalisations at the conclusion of this thesis still remains profoundly bleak, a significant factor has been brought to my awareness. My initial six-month admission occurred in the context of a group of very negative in-patients, most of whom had chosen to remain ill and to let AN ‘win the battle’ over them. I now believe that when I was immersed in that particular ‘anorexia-world’, I was unable to individuate from the group, and as such, I experienced all of the destructive elements of the EDU that have been illuminated throughout this thesis. I am no longer certain that my experience would have been quite as negative had I been hospitalised with a group in which the mentality was different, had I been prepared to take the risk to recover at that point in my illness ‘career’ and had I had rapport with and adequate support from the treating professionals at that time.
The ‘auto-ethnographic’ (Van Maanen, 1988) gaze that I adopted led me to begin this study with my own experience and then to examine the experiences of others. I have concluded this study by re-examining my long-standing opinions about my ‘lived experience’ inside the EDU, which has been simultaneously confronting and inspiring. Thus, the above reflection completes a cycle of particular importance to the methodology.
IMPLICATIONS FOR TREATING ANOREXIA NERVOSA
The majority of the participants in this study were critical of their treatment in the EDU. However, whilst it is easy to illuminate problematic aspects of the EDU, developing a more appropriate treatment for people with AN is complex.
A number of the participants believe that the eating disorder “has to be sort of tackled earlier on, cos otherwise you get very set in your ways an[d] it’s very, very hard to get out of it” (Lauren). The literature suggests that early intervention is associated with improved prognosis (Ratnasuriya et al., 1991; as cited in Fisher et al., 1995), and I would argue that with early intervention, AN is not given the opportunity to become entrenched. Thus, the individual is more likely to take control over the AN rather than the AN assuming control over her.
Several of the women interviewed perceive day programs – modelled on in-patient hospitalisation, but a less restrictive form of treatment than the EDU – as a viable alternative to the EDU. Day programs appear to have less of a focus on food and weight and a stronger therapeutic emphasis than in-patient hospitalisation. Furthermore, when clients attend day programs there is only a minimal risk of institutionalisation because they remain a part of their familial and social systems.
Day programs provide an arena in which problems can be addressed, yet they enable clients “to keep maintaining a relatively normal lifestyle” (Libby). Inside the EDU, life takes on an entirely different meaning. The focus shifts to the routines of regular meal times, “weigh days” and attending individual and group therapy and various ward meetings. Indeed, life outside the EDU becomes largely irrelevant. This level of institutionalisation does not occur in the day program. However, day programs are far from an ideal treatment for AN. Those attending day programs are still exposed to the competition, game-play, ‘education’ and jealousy that is problematic inside the EDU, thus AN is still fostered and perpetuated, albeit to a lesser extent.
Another alternative to the EDU for those who are acutely medically unwell is hospitalisation in a general medical ward. Kate, who was hospitalised on three occasions (twice in EDUs and once in a general medical ward) recounts, “I had a fantastic experience in [Huxton] because it wasn’t an eating disorders unit!” General medical units avoid the problems of the EDU, yet enable individuals to remain in a hospital environment in case of medical emergency (which is of considerable importance in light of the prevalence of physical morbidity [Beumont et al., 1995]). According to Kate, the competition that is rife on the EDU is “not conducive to recovery”, thus, it is possible that AN might be easier to treat in a context where there is no competition, such as a general hospital ward.
Brief hospitalisations in general medical units, (with the purpose of stabilising critically ill patients prior to intensive out-patient treatment) provide an alternative to joining the anorexic family and becoming ‘anorexified’ inside the EDU. Without exposure to the culture on the EDU or to others who are artisans of their ‘trade’, I believe that AN is less likely to become entrenched, and that individuals have a better chance of recovering. Furthermore, without other anorexics to measure oneself against, there might be less compulsion for individuals to compete and to strive for excellence in their anorexic ‘careers’. However, hospitalisation in a general medical ward is not without flaws either. It usually precludes the intensive psychological therapy and psychosocial support that is vital for individuals to achieve recovery.
A common complaint emerging from the narratives of these women is that there is a tendency for professionals to generalise – “Oh well, you’re an anorexic, so this is the treatment you’re gonna get” (Kate). Thus, one of the major problems is the lack of individualised treatment. According to Claude-Pierre, “each patient will adapt to treatment differently” (Claude-Pierre, 1997: 145) and “take her own time for recovery” (Claude-Pierre, 1997: 146), thus it is essential to tailor treatment programs to suit individual needs and to ‘cater’ for individual differences. Ideal treatments differ for individuals and individualised treatment requires a ‘recipe’ of elements including nutritional rehabilitation, psychological therapy, increasing self-esteem, correcting body image distortion, learning how to eat in different contexts (eg. in restaurants), re-socialising etc.
Changes to current treatment need to be based on the opinions of those who have had the ‘lived experience’ inside the EDU. To ignore the narratives of these young women is both negligent and dangerous, for if AN is perceived to be ‘nourished’ and perpetuated inside the EDU by even some of the women who have had this experience, then action must be taken to prevent this from continuing.
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(Appendices available on request)
List of Appendices
Appendix 1 – Letter to Clinicians
Appendix 2 – Participant Information Sheets
Appendix 3 – Contact Details Consent Form
Appendix 4 – Participant Consent Form
Appendix 5 – Interview Schedule
Appendix 6 – Summary of findings for participants
Appendix 7 – Glossary of ‘Anorexia-speak’
* This thesis is submitted in partial fulfilment of the requirements for the degree of Bachelor of Social Work with Honours,
University of New South Wales, February 2002.