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International Journal of Mental Health Nursing (2014) 23, 553–560
doi: 10.1111/inm.12084
Feature Article
Things you can learn from books: Exploring the therapeutic potential of eating disorder memoirs Margaret McAllister,1 Donna Lee Brien,2 Trudi Flynn1 and June Alexander1 1
Centre for Mental Health Nursing Innovation, and School of Nursing and Midwifery, and 2School of Education and the Arts, CQ University, Noosa, Queensland, Australia
ABSTRACT: This paper explores the potential benefits that books, and specifically memoirs, might offer mental health students, positing that first-person testimonials might make the complex experiences of a mental health challenge, in this case, eating disorders, accessible to learners. The paper presents a pedagogical approach, based on transformative learning, to assist in encouraging the development of a recovery approach in students. Transformative learning is a pedagogy that is interested in problematic practices that keep afflicting an area, such as the imbalanced focus on learning illness, rather than well-being, and in pondering and revising the educational solutions. The paper proposes that forward movement in this area will be based on considering and developing such innovative curricula, and researching its impact. By virtue of their accessibility, memoirs could offer to a large audience the benefits of universality, empathy, hope, and guidance. Teachers and learners could be making use of these books in face-to-face or online activities. This paper explores the groundwork that is needed before eating disorder memoirs can be confidently recommended as a therapeutic tool. KEY WORDS: bibliotherapy, eating disorder, education, learning, memoir.
INTRODUCTION Byrne et al. (2013) recently reported that the subjective experience of recovery has a unique power to move people into a more authentic understanding of what it means to be a person with a lived experience of significant mental health challenges, offering learners insights that they simply cannot get from books. Learning from the lived experience of others led to positive attitudinal change in students towards the concept of recovery (that being, a unique journey involving the re-emergence of hope, well-being, adaptation, and fulfilment). Similarly, studies of peer-led recovery groups have shown that the sharing of lived experiences can improve self-esteem, selfCorrespondence: Margaret McAllister, School of Nursing and Midwifery, Central Queensland University, 90 Goodchap Street, Noosaville, QLD 4566, Australia. Email: [email protected] Margaret McAllister, CMHN, Ed D. Donna Lee Brien, PhD. Trudi Flynn, PhD. June Alexander, BA. Accepted May 2014.
© 2014 Australian College of Mental Health Nurses Inc.
efficacy, social support, and spiritual well-being, and reduce psychiatric symptoms among group members (Fukui et al. 2010). In this paper, we aim to explore the idea that recovery can also be advanced through the subjective experience of recovery, as reported in memoirs, including book-length published works of personal experience, usually, but not always, written by the subject of these accounts (Brien 2004).
BACKGROUND Whether they are aware of it or not, all those working within mental health services are immersed within a paradigm shift requiring legitimate consumer engagement in care, and they have been since the consumer movement began in the 1960s (Frese & Davis 1997; Maddux 2009). Yet paradoxically, within Australia, it seems that the biomedical model, with its focus on clinician-controlled care, remains pervasive (Bennetts & Cross 2011). Ongoing tension continues to exist between the dominance of the
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hospital-centred illness care model, and the personcentred health-promotion model. Where illness care involves secondary and tertiary approaches to the prevention of disability, health promotion emphasizes preventative practices, consumer education, empowerment, and action (Sturgeon 2007). Often, these differences do not exist in balance. Mental health nurses are no longer exclusively illnesscare workers that the 20th century, with the rise of science, medicine, and institutions, prescribed (Herdman 2001). As their very name suggests, mental health nurses are, and need to be, located within the health-promotion, consumer-empowerment context. Nurses have an opportunity to lead the way with consumers in the development of recovery-based therapeutic interventions; however, such strategies rarely feature in the published literature (Meehan et al. 2008). Psychosocial interventions are no longer routinely offered by nurses, even though nurses appreciate the value and the need of these approaches to care (Fisher 2013; Mullen 2009). This paper takes the therapeutic approaches available for eating disorders as a starting point in this development. It explores the therapeutic potential of book-length memoirs. Books about the experience of having an eating disorder abound within the popular literature, and judging by the sheer number of sales for these books, readers must be learning and gaining something from them. Investigating just what makes these books successful, and how other people might benefit from reading them, could make a significant contribution to consumer engagement in their own prevention of mental illnesses, and in the facilitation of early recovery. It could also provide a means of assessing whether such texts contain triggers (Southgate et al. 2005), and therefore, should not be recommended reading for vulnerable consumers.
EATING DISORDERS IN AUSTRALIA Almost one million Australians suffer from an eating disorder (The Butterfly Foundation 2012). There are three defined categories of eating disorder: anorexia nervosa (with a 4% distribution), bulimia nervosa (12%), and binge-eating disorder (47%), and a fourth category, feeding and eating disorders otherwise specified (37%), which groups individuals who present with abnormal eating patterns, but who do not meet the other specific Diagnostic and Statistical Manual, 5th Edition, diagnostic criteria (American Psychiatric Association 2013; The Butterfly Foundation 2012). Eating disorders negatively impact the physical, social, and emotional functioning of the individual (The Butterfly Foundation 2012). All of the
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disorders are associated with medical complications and an increased risk of premature death (National Eating Disorder Collaboration 2013). The current approach to treatment is community based and multidisciplinary, incorporating medical, nutritional, individual, and family therapies, and peer-led recovery groups for consumers and carers (Academy for Eating Disorders 2011; Watson & Bulik 2012). The aims of this treatment are to prevent hospitalization, where possible (because this can be disruptive and traumatic), restore weight and normal eating behaviour, and resolve the psychosocial conditions that contributed to the disorder. The involvement of families, including siblings, in the treatment of children and adolescents with any of the eating disorders is recommended, where possible (National Institute for Health and Care Excellence 2004). Treatment during the first three years of an eating disorder is associated with a much greater likelihood of recovery (Academy for Eating Disorders 2011), and thus early intervention is vital. However, people with an eating disorder take many years to seek treatment after the onset of problems. In anorexia, the delay can be up to 15 years, and in bulimia, the delay is 10 years (Oakley Browne et al. 2006). These delays could be due to the fact that – while the person with an eating disorder might initially feel they gain something from having the disorder, such as feelings of control over psychosocial issues over which they might feel they lack agency (Orsillo & Batten 2002), weight control, anxiety mastery, or strength (Gordon 2000) – there might also be shame and secrecy, denial, stigma, and financial cost (Fairburn & Brownell 2002).
VALUE OF PEER SUPPORT AND A RECOVERY ORIENTATION Non-government groups, such as Families Empowered and Supporting Treatment of Eating Disorders (FEAST) and the Australian Butterfly Foundation, offer viable service options for people affected by or at risk of mental illnesses. Recovery groups providing peer support are operative in these organizations, which might take place in an online environment or in conventional face-to-face group meetings (Binford Hopf et al. 2013). It is well known that peer support or recovery groups have therapeutic value (Fukui et al. 2010; Yalom 1995), not least because the power differential between members is less marked than between a health expert and client, and because people are drawing on their lived and practical experiences, not just theoretical principles. The identified therapeutic factors of groups is outlined in Table 1. © 2014 Australian College of Mental Health Nurses Inc.
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TABLE 1: Theories about the structure of illness narratives Authors Frank (1995) illness narrative types
Gergen and Gergen (1987), time Brockmeier (2000), time
Tomkins (1987) personal affect
McAdams (2006) narrative sequencing Polkinghorne (1996), authorship
Narrative structure Restitution: An important event is overcome and the protagonist becomes the same again Chaos: Illness destroys the life Quest: the protagonist searches for meaning or what can be learned or gained from the experience Progressive and regressive time lines in the plot; that is, happily-ever-after stories or tragedies Six models: Linear, growth over time; circular, on reflection there has been growth; cyclical, the recurrence of themes; spiral, theme recurrence with growth; static, story is frozen in time around a dramatic experience; fragmentary, multiple possibilities not tied together Commitment scripts: Positive personal affect related to a clear and rewarding life goal. Bad things can be overcome Nuclear scripts: Negative personal effect on ambivalent life goals. Good things gone bad Redemption sequence: Negative experience leads to a positive outcome Contamination: An emotionally-positive experience becomes negative, as it is ruined or spoiled Victimic plots: Protagonist has lost power to change their life Agentic plots: Protagonist actively helps to shape their life
Support can be made available to both the person with the eating disorder and their family and/or friends, because living with, and caring for, an individual with eating disorder can be challenging. Face-to-face (and, as discussed later) online support groups facilitate coping, reduce isolation, and provide validation, inspiration, skill sharing, guidance, and a safe place to express emotion (Pasold et al. 2010). FEAST provides a comprehensive listing of support groups for families. The rise of the Internet has greatly widened access to these recovery groups. Online groups have been shown to offer similar benefits to face-to-face support groups, and moreover, they also have the added benefit of anonymity (Darcy & Dooley 2007). The online community can be a place to speak freely about food, eating behaviour, thoughts, and feelings, without being identified, within a group that is empathic due to their own experiences (Walstrom 2000). It might also inhibit the ‘self–other’ weight comparison, which negatively impacts on mood and self-worth (McCormack 2010). Darcy and Dooley (2007) found that nearly two-thirds of those online participants surveyed demonstrated severe symptoms, yet were not receiving treatment for their disorder (Darcy & Dooley 2007). Because people with eating disorders are likely to be living at home (rather than in hospital), self-help resources, such as guides and videos, are an accessible way to engage consumers in healing, although the voice of the consumer is not widely incorporated into these materials (Treasure et al. 2012).
MEMOIRS AS A CREATIVE TOOL FOR RECOVERY A specific example of the narrative arts, printed booklength memoirs, which give voice to an individual’s lived © 2014 Australian College of Mental Health Nurses Inc.
experience, provide a largely untapped resource in eating disorder therapies. Well before clinicians developed an interest in using creative pursuits to occupy mental health patients, and before occupational therapy emerged as a discipline, the arts have been known to give meaning to illness (Sandblom 1992). As the painter Edvard Munch once reportedly stated: ‘Without illness and anxiety I would have been a rudderless ship’ (cited in Potter 2011, p. 573). For Munch, the illness experience enriched his art and gave his life a purpose. At the same time, art gave him an outlet for expression, transcendence, and hope (Sandblom 1992). There are now several theories that further support the value of meaning making through the arts. The positive psychology movement contends that the process of finding meaning is integral to recovery, as an illness can be assimilated and given a rightful place in one’s life, without it being overwhelming (Seligman 2011); narrative therapists suggest that creative expression can develop a stronger identity (White & Epston 1990); and resilience theory asserts that having meaning in life is a resiliency skill (McAllister & Lowe 2013). Victor Frankl (1984) goes further, believing that finding meaning in life’s challenges is life enhancing. He states that helping a person realize what they are capable of becoming through meaning making is the proper purpose of psychotherapy. There are many different kinds of creative therapies: play, art, laughter, reminiscence, music, cinema, and creative writing therapies (Blasco et al. 2011; King et al. 2013, Schweitzer 2006). While drawing on different arts and media, they share a focus on developing meaning, identity, strength, and resilience. Thus, their incorporation into recovery-informed practice seems viable. Unfortunately, these creative therapies have also tended to be delivered and ‘prescribed’ by a clinical expert (Hesley &
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Hesley 2001; Solomon 1995). If they are to become a useful recovery tool, the elements of collaboration and user empowerment need to be incorporated in this approach.
HEALING POWER OF BOOKS Bibliotherapy utilizes the art of other people’s storytelling in books to assist an individual to deepen insight and hope and to promote change (Lehr 1981). Bibliotherapy is not new, although it is no longer in wide use in mental health (Westerhof & Bohlmeijer 2012). According to Sullivan and Strang (2002), the ancient Greeks maintained that literature was psychologically and spiritually important. Libraries were considered a ‘healing place for the soul’. After World War II, reading books as a form of therapy became widespread, in part because soldiers had significant time to convalesce, and in part because books were being utilized in group therapy, a modality that flourished in the post-war period, because it was able to widen access to psychotherapy. The effect of bibliotherapy has not been widely researched; however, one study by Berns (2004), which used books with children to suggest coping skills, such as creativity and problem solving, found that it built confidence and self-esteem. Berns selected books that featured relatable characters with whom the children could identify. When selecting suitable eating disorder memoirs for bibliotherapy-type therapeutic usage, the relatable qualities of the characters will similarly be important. Westerhof and Bohlmeijer (2012) stated that narratives that contain experiences with which readers can closely identify might be integrated into the reader’s own life story. This might be positive or negative. It is possible, for example, that an individual with an eating disorder reading about another’s fear of food might have their own fear compounded. However, a writer’s journey of recovery and the re-emergence of hope might be transferred to the reader. This suggests that bibliotherapy developed collaboratively between expert consumer writers and mental health-intervention experts, and focused on consumer empowerment, could have utility within the eating disorder community.
EXPLORING THE EATING DISORDER MEMOIR With our research suggesting that approximately 200 eating disorder memoirs have been published in English from the 1970s, it is reasonable to expect that the therapeutic quality and potential utility of eating disorder
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memoirs will vary. Readers are also likely to be diverse; they could be experiencing an emerging eating disorder, be a concerned family member or friend, or have a longestablished eating disorder. They might also just be individuals with a real interest in others’ stories (Hampl 1999) or have voyeuristic motivations (Atlas 1996). Moreover, understanding who reads eating disorder memoirs and why may help to increase understanding of the eating disorder memoir itself. This understanding might, in turn, guide recovery groups interested in using these memoirs to facilitate positive change. Surprisingly, there is almost absolute silence in the published literature with regards to the influence of the eating disorder memoir on the reader with an eating disorder, or its potential therapeutic utility. A single paper published in 2006 (Thomas et al. 2006) reported the impacts of eating disorder memoirs on the attitudes and behaviours of 50 US undergraduate students. To date, there has been no published research involving individuals with eating disorders and their engagement with book-length published memoirs. In contrast, there is substantial discussion in online forums on the eating disorder memoir and its possible impact. In her recovery blog on the Cleveland Centre for Eating Disorders website, Sarah Emerman (2013) acknowledged the eating disorder memoirs’ potential benefits, as well as its harms. She provided a list categorizing memoirs into safe and recommended; triggering books to be read with caution and those to be avoided. Unfortunately, Emerman provided no rationales or criteria for her selection. Eating disorder memoirs might give people, who are otherwise suffering in isolation and fear, the chance to see that recovery is possible as this reader wrote (in a letter) after reading June Alexander’s (2013) memoir attest: I have spent the last 14 years trying to recover in various ways and means. From outpatient therapy to residential treatment, including various visits to the ER (emergency room), my journey has been defeating. . . . My family basically wants nothing to do with me because I’m so chronic (and they think selfish etc.) and I feel so alone. Thanks for writing your book and giving me hope. I am almost 25 and have been suffering from intermittent anorexia and bulimia for the past 11 years. Tomorrow, I start my graduate year as a registered nurse . . . I fear my career is on the line. Your story has given me much hope in having the ability to lead a normal life while battling my inner-self and one day conquering all I have lost and becoming whole again. . . . You have reignited my faith in recovery when I felt like I was drowning. Please keep sharing your story. © 2014 Australian College of Mental Health Nurses Inc.
THINGS YOU CAN LEARN FROM BOOKS I read your memoir overnight, unable to put it down. I actually had many tears as I read as it reminded me of the realness, heartache, loneliness and destruction my eating disorder has brought about in my life. . . . Since reading your book I am feeling even more inspired to get back on track. I want to help others and inspire as you have done for me. I admire your courage to speak the truth.
As alluded to above, however, not all memoirs have therapeutic potential. There have been suggestions that some memoirs, with their focus on food avoidance or strategies used to disguise weight loss, might give people tips for eating disorders (Mulveen & Hepworth 2006). Thus, it is important to investigate the nature of insights delivered and resonances between the available memoirs, so that clinicians and consumers can make discerning choices about which memoirs to read or recommend. According to Bulik (2011), there are numerous myths about eating disorders that are not helpful. These include mistaken beliefs that either families or society are wholly to blame; that an eating disorder is a lifestyle choice; and that anorexia is the only ‘real’ eating disorder, and that this is a teenage, middle-class, female disease. Whether or not these myths permeate through, and are perpetuated by, published memoirs is important to explore, because if they are accepted and not challenged, they run the risk of compounding stigma and inaccurate perceptions among readers. Further, not all memoirs are suitable for all people. Being at a different phase in the illness-recovery journey or at a particular life stage or age might be influencing factors, as well as sex or or geographic location. As bibliotherapy – the guided reading and analysis of narratives to create healing in readers – draws attention to any myths that appear within a particular memoir and invites readers to critique rather than simply accept them, it might be an effective strategy to empower people with eating disorder and promote recovery. Research is needed to differentiate potentially therapeutic from noxious eating disorder memoirs, and to understand what reader factors might intersect in this effect, including those listed earlier. This knowledge can, in turn, inform the development of exemplars, prompts, and guidelines for facilitating optimum engagement with memoirs.
NARRATIVE THEORY IN NURSING AND MENTAL HEALTH The analysis of illness narratives is a growing field within nursing and medicine. The approach emphasizes the importance of the first-person narrative in healing (Coles 1989; Gottschall 2012; Pennebaker 2000). It suggests that it is through storytelling that the individual comes to © 2014 Australian College of Mental Health Nurses Inc.
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comprehend and integrate the layered experience of an illness, such as an eating disorder. There are numerous theories about the structure of illness narratives that could be relevant to eating disorder memoirs, including Yalom’s (1995) therapeutic factors of groups: (i) universality: Feeling of having problems similar to others, not alone; (ii) altruism: Helping and supporting others; (iii) instillation of hope: Encouragement that recovery is possible; (iv) guidance: Nurturing support and assistance; (v) imparting information: Teaching about problem and recovery; (vi) developing social skills: Learning new ways to talk about feelings, observations, and concerns; (vii) interpersonal learning: Finding out about themselves and others from the group; (viii) cohesion: Feeling of belonging to the group, valuing the group; (ix) catharsis: Release of emotional tension; (x) existential factors: Life and death are realities; (xi) imitative behaviour: Modelling another’s manners and recovery skills; and (xii) corrective recapitulation of family of origin issues: Identifying and changing the dysfunctional patterns or roles one played in primary family. Many memoir narratives share a common structure, the narrative arc, where life experiences and perceptions unfold and reach a crescendo, after which a turning point, denouement, or resolution is reached (Gutkind 1997). Within the eating disorder memoir, this narrative arc is likely to involve a lengthy description of the extent of the eating disorder, the impact this has on a person’s life, and finally how the person was able to change (McAllister Brien Alexander & Flynn 2014). Other theories of narrative suggest that there are only a limited number of storylines and plots that are reworked, recycled, and repurposed through the history of literature (e.g. Campbell 1949; Foster-Harris 1959; Tobias 1993). Further research into the structure of these memoirs could reveal a commonality in key elements of storytelling in certain texts, or unique aspects to the experience of recovery and resolution in these narratives. How the decisive moment when the person moves towards recovery is reached and described in these texts could be particularly powerful for readers who are struggling with an eating disorder, because although there are effective treatments available for eating disorders, many people struggle with the illness for years. People who have resolved their disorder do speak of experiencing a moment of clarity, an epiphany, that marks the beginning of recovery. This is frequently described by people as a ‘turning point’ moment when they understand that they cannot go on as they have done, and that change is not only necessary, but also possible (Yarham 2013). Following the principles of bibliotherapy, it is hypothesized that
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if readers with an eating disorder were to read about another person’s turning point and internalize that experience, they might also reach their own point of change sooner.
RECOMMENDATIONS AND CONCLUSION The potential value of using memoirs therapeutically, in this case, specifically, in the context of eating disorders is discussed in the present study. Memoirs provide a first-person account that offers a more direct entry into the experience of suffering and recovery, which could enhance identification, internalization and empowerment needed for adaptation and healing. For clinicians, these insights might enhance their capability for empathy and readiness for moving towards a recovery stance. If eating disorder memoirs are to become a recovery tool, utilized by diverse and discerning readers, two investigations are needed. First, the memoirs require close examination and classification, so that guidance can be developed on the likely relative therapeutic potential of individual memoirs. Second, guidelines need to be developed in collaboration with clinicians and consumers in order to facilitate their integration into recovery groups and as part of other intentional therapeutic interventions. The results of this research will also fill a gap in current knowledge, which is the potentially therapeutic and/or noxious impact of eating disorder memoirs. One strategy to deal with the range and diversity of the eating disorder memoir resources currently available is to produce subsets of therapeutically-useful excerpts for further consideration and study. Insights into these excerpts need to be reflected upon to see if they have wide relevance, and trigger questions and discussion points need to be generated about these excerpts to facilitate reflection and growth. As a result of exposure to such resources, clinicians might gain deeper access to lived experiences, and consumers might acquire wisdom, hope, universality, and the identity of being an expert in the experience of their own eating disorder via this engagement with memoirs. In each case, the reader will be left more able to fully appreciate the complexity and challenges facing those struggling with eating disorders. The production of guidelines might also enhance the ways in which consumers and clinicians can converse with one another about their recovery challenges and achievements. In the recovery paradigm, mental health workers are expected to work alongside consumers and carers, engaging in dialogue and mutual exchange of information, and not just the prescription of advice or information. In turn, the consumer is viewed as responsible for being an
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actively-involved and invested contributor within their therapeutic relationships with mental health professionals. It is possible that engagement with memoir can provide the consumer with a voice, a language, and an identity of expertise to bring to both this relationship and their recovery as a whole. Armed with this information, clinicians might be better able to use memoirs during individual therapy by recommending particular passages in certain volumes, offering points of discussion, and asking the consumer how ideas in the memoir can be linked to their personal experiences and journey of recovery. Consumers who are aware that the clinician has read the memoir and recalls particular passages might feel more confident that there is empathy for and an understanding of a particular issue, struggle, or complexity. Consumers can also use the memoirs to enlighten and educate their therapist, where they sense points of confusion or a lack of understanding. In summary, memoirs of eating disorders have the potential to provide illuminative understanding for both clinicians and consumers into both the eating disorder experience, and importantly, recovery from it. As a therapeutic tool, they provide a positive alternative to treatments that are directive and prescriptive. Used within group settings, such as eating disorder recovery groups that occur face-to-face or online, shared reading and analysis of memoirs might be empowering, as well as engaging. However, while these memoirs may offer the benefits of universality, catharsis, hope, and guidance to a large audience, there are also a number of factors that need to be further investigated. Work should be completed, for example, investigating which memoirs have most therapeutic potential, what elements within them can be highlighted and critiqued, and whether they might be a useful resource to inform the process of recovery groups.
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M. MCALLISTER ET AL. The Butterfly Foundation (2012). Paying the price: The economic and social impact of eating disorders in Australia. [Cited 10 October 2013]. Available from: URL: http:// www.thebutterflyfoundation.org.au Thomas, J., Judge, A., Brownell, K. & Vartanian, L. (2006). Evaluating the effects of eating disorder memoirs on readers’ eating attitudes and behaviors. International Journal of Eating Disorders, 39, 418–425. Tobias, R. B. (1993). 20 Master Plots. Cincinnati: Writer’s Digest. Tomkins, S. (1987). Script theory. In: J. Aronoff, A. Rabin & R. Zucker (Eds). The Emergence of Personality. (pp. 147–216). New York: Springer. Treasure, J., Todd, G. & Macdonald, P. (2012). The New Maudsley Approach: A resource for professionals and carers of people with eating disorders. [Cited 24 June 2013]. Available from: URL: http://thenewmaudsleyapproach.co.uk/ About_Us.php Walstrom, M. K. (2000). ‘You know, who’s the thinnest?’ combating surveillance and creating safety in coping with eating disorders online. Cyberpsychology and Behaviour, 3, 761– 783. Watson, H. J. & Bulik, C. M. (2012). Update on the treatment of anorexia nervosa: Review of clinical trials, practice guidelines and emerging interventions. Psychological Medicine, 10, 1–24. Westerhof, G. & Bohlmeijer, E. (2012). Life stories and mental health: The role of identification processes in theory and interventions. Narrative Works: Issues, Investigations and Interventions, 2, 106–128. White, M. & Epston, D. (1990). Narrative Means to Therapeutic Ends. Adelaide: Dulwich Centre Publications. Yalom, I. (1995). The Theory and Practice of Group Psychotherapy. New York: Basic Books. Yarham, N. (2013). Testimonial. At the first Australian Eating Disorders Conference, At home with eating disorders; 24 May. Brisbane, QLD: Royal Brisbane and Womens Hospital.
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International Journal of Mental Health Nursing (2014) 23, 553–560
doi: 10.1111/inm.12084
Feature Article
Things you can learn from books: Exploring the therapeutic potential of eating disorder memoirs Margaret McAllister,1 Donna Lee Brien,2 Trudi Flynn1 and June Alexander1 1
Centre for Mental Health Nursing Innovation, and School of Nursing and Midwifery, and 2School of Education and the Arts, CQ University, Noosa, Queensland, Australia
ABSTRACT: This paper explores the potential benefits that books, and specifically memoirs, might offer mental health students, positing that first-person testimonials might make the complex experiences of a mental health challenge, in this case, eating disorders, accessible to learners. The paper presents a pedagogical approach, based on transformative learning, to assist in encouraging the development of a recovery approach in students. Transformative learning is a pedagogy that is interested in problematic practices that keep afflicting an area, such as the imbalanced focus on learning illness, rather than well-being, and in pondering and revising the educational solutions. The paper proposes that forward movement in this area will be based on considering and developing such innovative curricula, and researching its impact. By virtue of their accessibility, memoirs could offer to a large audience the benefits of universality, empathy, hope, and guidance. Teachers and learners could be making use of these books in face-to-face or online activities. This paper explores the groundwork that is needed before eating disorder memoirs can be confidently recommended as a therapeutic tool. KEY WORDS: bibliotherapy, eating disorder, education, learning, memoir.
INTRODUCTION Byrne et al. (2013) recently reported that the subjective experience of recovery has a unique power to move people into a more authentic understanding of what it means to be a person with a lived experience of significant mental health challenges, offering learners insights that they simply cannot get from books. Learning from the lived experience of others led to positive attitudinal change in students towards the concept of recovery (that being, a unique journey involving the re-emergence of hope, well-being, adaptation, and fulfilment). Similarly, studies of peer-led recovery groups have shown that the sharing of lived experiences can improve self-esteem, selfCorrespondence: Margaret McAllister, School of Nursing and Midwifery, Central Queensland University, 90 Goodchap Street, Noosaville, QLD 4566, Australia. Email: [email protected] Margaret McAllister, CMHN, Ed D. Donna Lee Brien, PhD. Trudi Flynn, PhD. June Alexander, BA. Accepted May 2014.
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efficacy, social support, and spiritual well-being, and reduce psychiatric symptoms among group members (Fukui et al. 2010). In this paper, we aim to explore the idea that recovery can also be advanced through the subjective experience of recovery, as reported in memoirs, including book-length published works of personal experience, usually, but not always, written by the subject of these accounts (Brien 2004).
BACKGROUND Whether they are aware of it or not, all those working within mental health services are immersed within a paradigm shift requiring legitimate consumer engagement in care, and they have been since the consumer movement began in the 1960s (Frese & Davis 1997; Maddux 2009). Yet paradoxically, within Australia, it seems that the biomedical model, with its focus on clinician-controlled care, remains pervasive (Bennetts & Cross 2011). Ongoing tension continues to exist between the dominance of the
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hospital-centred illness care model, and the personcentred health-promotion model. Where illness care involves secondary and tertiary approaches to the prevention of disability, health promotion emphasizes preventative practices, consumer education, empowerment, and action (Sturgeon 2007). Often, these differences do not exist in balance. Mental health nurses are no longer exclusively illnesscare workers that the 20th century, with the rise of science, medicine, and institutions, prescribed (Herdman 2001). As their very name suggests, mental health nurses are, and need to be, located within the health-promotion, consumer-empowerment context. Nurses have an opportunity to lead the way with consumers in the development of recovery-based therapeutic interventions; however, such strategies rarely feature in the published literature (Meehan et al. 2008). Psychosocial interventions are no longer routinely offered by nurses, even though nurses appreciate the value and the need of these approaches to care (Fisher 2013; Mullen 2009). This paper takes the therapeutic approaches available for eating disorders as a starting point in this development. It explores the therapeutic potential of book-length memoirs. Books about the experience of having an eating disorder abound within the popular literature, and judging by the sheer number of sales for these books, readers must be learning and gaining something from them. Investigating just what makes these books successful, and how other people might benefit from reading them, could make a significant contribution to consumer engagement in their own prevention of mental illnesses, and in the facilitation of early recovery. It could also provide a means of assessing whether such texts contain triggers (Southgate et al. 2005), and therefore, should not be recommended reading for vulnerable consumers.
EATING DISORDERS IN AUSTRALIA Almost one million Australians suffer from an eating disorder (The Butterfly Foundation 2012). There are three defined categories of eating disorder: anorexia nervosa (with a 4% distribution), bulimia nervosa (12%), and binge-eating disorder (47%), and a fourth category, feeding and eating disorders otherwise specified (37%), which groups individuals who present with abnormal eating patterns, but who do not meet the other specific Diagnostic and Statistical Manual, 5th Edition, diagnostic criteria (American Psychiatric Association 2013; The Butterfly Foundation 2012). Eating disorders negatively impact the physical, social, and emotional functioning of the individual (The Butterfly Foundation 2012). All of the
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disorders are associated with medical complications and an increased risk of premature death (National Eating Disorder Collaboration 2013). The current approach to treatment is community based and multidisciplinary, incorporating medical, nutritional, individual, and family therapies, and peer-led recovery groups for consumers and carers (Academy for Eating Disorders 2011; Watson & Bulik 2012). The aims of this treatment are to prevent hospitalization, where possible (because this can be disruptive and traumatic), restore weight and normal eating behaviour, and resolve the psychosocial conditions that contributed to the disorder. The involvement of families, including siblings, in the treatment of children and adolescents with any of the eating disorders is recommended, where possible (National Institute for Health and Care Excellence 2004). Treatment during the first three years of an eating disorder is associated with a much greater likelihood of recovery (Academy for Eating Disorders 2011), and thus early intervention is vital. However, people with an eating disorder take many years to seek treatment after the onset of problems. In anorexia, the delay can be up to 15 years, and in bulimia, the delay is 10 years (Oakley Browne et al. 2006). These delays could be due to the fact that – while the person with an eating disorder might initially feel they gain something from having the disorder, such as feelings of control over psychosocial issues over which they might feel they lack agency (Orsillo & Batten 2002), weight control, anxiety mastery, or strength (Gordon 2000) – there might also be shame and secrecy, denial, stigma, and financial cost (Fairburn & Brownell 2002).
VALUE OF PEER SUPPORT AND A RECOVERY ORIENTATION Non-government groups, such as Families Empowered and Supporting Treatment of Eating Disorders (FEAST) and the Australian Butterfly Foundation, offer viable service options for people affected by or at risk of mental illnesses. Recovery groups providing peer support are operative in these organizations, which might take place in an online environment or in conventional face-to-face group meetings (Binford Hopf et al. 2013). It is well known that peer support or recovery groups have therapeutic value (Fukui et al. 2010; Yalom 1995), not least because the power differential between members is less marked than between a health expert and client, and because people are drawing on their lived and practical experiences, not just theoretical principles. The identified therapeutic factors of groups is outlined in Table 1. © 2014 Australian College of Mental Health Nurses Inc.
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TABLE 1: Theories about the structure of illness narratives Authors Frank (1995) illness narrative types
Gergen and Gergen (1987), time Brockmeier (2000), time
Tomkins (1987) personal affect
McAdams (2006) narrative sequencing Polkinghorne (1996), authorship
Narrative structure Restitution: An important event is overcome and the protagonist becomes the same again Chaos: Illness destroys the life Quest: the protagonist searches for meaning or what can be learned or gained from the experience Progressive and regressive time lines in the plot; that is, happily-ever-after stories or tragedies Six models: Linear, growth over time; circular, on reflection there has been growth; cyclical, the recurrence of themes; spiral, theme recurrence with growth; static, story is frozen in time around a dramatic experience; fragmentary, multiple possibilities not tied together Commitment scripts: Positive personal affect related to a clear and rewarding life goal. Bad things can be overcome Nuclear scripts: Negative personal effect on ambivalent life goals. Good things gone bad Redemption sequence: Negative experience leads to a positive outcome Contamination: An emotionally-positive experience becomes negative, as it is ruined or spoiled Victimic plots: Protagonist has lost power to change their life Agentic plots: Protagonist actively helps to shape their life
Support can be made available to both the person with the eating disorder and their family and/or friends, because living with, and caring for, an individual with eating disorder can be challenging. Face-to-face (and, as discussed later) online support groups facilitate coping, reduce isolation, and provide validation, inspiration, skill sharing, guidance, and a safe place to express emotion (Pasold et al. 2010). FEAST provides a comprehensive listing of support groups for families. The rise of the Internet has greatly widened access to these recovery groups. Online groups have been shown to offer similar benefits to face-to-face support groups, and moreover, they also have the added benefit of anonymity (Darcy & Dooley 2007). The online community can be a place to speak freely about food, eating behaviour, thoughts, and feelings, without being identified, within a group that is empathic due to their own experiences (Walstrom 2000). It might also inhibit the ‘self–other’ weight comparison, which negatively impacts on mood and self-worth (McCormack 2010). Darcy and Dooley (2007) found that nearly two-thirds of those online participants surveyed demonstrated severe symptoms, yet were not receiving treatment for their disorder (Darcy & Dooley 2007). Because people with eating disorders are likely to be living at home (rather than in hospital), self-help resources, such as guides and videos, are an accessible way to engage consumers in healing, although the voice of the consumer is not widely incorporated into these materials (Treasure et al. 2012).
MEMOIRS AS A CREATIVE TOOL FOR RECOVERY A specific example of the narrative arts, printed booklength memoirs, which give voice to an individual’s lived © 2014 Australian College of Mental Health Nurses Inc.
experience, provide a largely untapped resource in eating disorder therapies. Well before clinicians developed an interest in using creative pursuits to occupy mental health patients, and before occupational therapy emerged as a discipline, the arts have been known to give meaning to illness (Sandblom 1992). As the painter Edvard Munch once reportedly stated: ‘Without illness and anxiety I would have been a rudderless ship’ (cited in Potter 2011, p. 573). For Munch, the illness experience enriched his art and gave his life a purpose. At the same time, art gave him an outlet for expression, transcendence, and hope (Sandblom 1992). There are now several theories that further support the value of meaning making through the arts. The positive psychology movement contends that the process of finding meaning is integral to recovery, as an illness can be assimilated and given a rightful place in one’s life, without it being overwhelming (Seligman 2011); narrative therapists suggest that creative expression can develop a stronger identity (White & Epston 1990); and resilience theory asserts that having meaning in life is a resiliency skill (McAllister & Lowe 2013). Victor Frankl (1984) goes further, believing that finding meaning in life’s challenges is life enhancing. He states that helping a person realize what they are capable of becoming through meaning making is the proper purpose of psychotherapy. There are many different kinds of creative therapies: play, art, laughter, reminiscence, music, cinema, and creative writing therapies (Blasco et al. 2011; King et al. 2013, Schweitzer 2006). While drawing on different arts and media, they share a focus on developing meaning, identity, strength, and resilience. Thus, their incorporation into recovery-informed practice seems viable. Unfortunately, these creative therapies have also tended to be delivered and ‘prescribed’ by a clinical expert (Hesley &
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Hesley 2001; Solomon 1995). If they are to become a useful recovery tool, the elements of collaboration and user empowerment need to be incorporated in this approach.
HEALING POWER OF BOOKS Bibliotherapy utilizes the art of other people’s storytelling in books to assist an individual to deepen insight and hope and to promote change (Lehr 1981). Bibliotherapy is not new, although it is no longer in wide use in mental health (Westerhof & Bohlmeijer 2012). According to Sullivan and Strang (2002), the ancient Greeks maintained that literature was psychologically and spiritually important. Libraries were considered a ‘healing place for the soul’. After World War II, reading books as a form of therapy became widespread, in part because soldiers had significant time to convalesce, and in part because books were being utilized in group therapy, a modality that flourished in the post-war period, because it was able to widen access to psychotherapy. The effect of bibliotherapy has not been widely researched; however, one study by Berns (2004), which used books with children to suggest coping skills, such as creativity and problem solving, found that it built confidence and self-esteem. Berns selected books that featured relatable characters with whom the children could identify. When selecting suitable eating disorder memoirs for bibliotherapy-type therapeutic usage, the relatable qualities of the characters will similarly be important. Westerhof and Bohlmeijer (2012) stated that narratives that contain experiences with which readers can closely identify might be integrated into the reader’s own life story. This might be positive or negative. It is possible, for example, that an individual with an eating disorder reading about another’s fear of food might have their own fear compounded. However, a writer’s journey of recovery and the re-emergence of hope might be transferred to the reader. This suggests that bibliotherapy developed collaboratively between expert consumer writers and mental health-intervention experts, and focused on consumer empowerment, could have utility within the eating disorder community.
EXPLORING THE EATING DISORDER MEMOIR With our research suggesting that approximately 200 eating disorder memoirs have been published in English from the 1970s, it is reasonable to expect that the therapeutic quality and potential utility of eating disorder
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memoirs will vary. Readers are also likely to be diverse; they could be experiencing an emerging eating disorder, be a concerned family member or friend, or have a longestablished eating disorder. They might also just be individuals with a real interest in others’ stories (Hampl 1999) or have voyeuristic motivations (Atlas 1996). Moreover, understanding who reads eating disorder memoirs and why may help to increase understanding of the eating disorder memoir itself. This understanding might, in turn, guide recovery groups interested in using these memoirs to facilitate positive change. Surprisingly, there is almost absolute silence in the published literature with regards to the influence of the eating disorder memoir on the reader with an eating disorder, or its potential therapeutic utility. A single paper published in 2006 (Thomas et al. 2006) reported the impacts of eating disorder memoirs on the attitudes and behaviours of 50 US undergraduate students. To date, there has been no published research involving individuals with eating disorders and their engagement with book-length published memoirs. In contrast, there is substantial discussion in online forums on the eating disorder memoir and its possible impact. In her recovery blog on the Cleveland Centre for Eating Disorders website, Sarah Emerman (2013) acknowledged the eating disorder memoirs’ potential benefits, as well as its harms. She provided a list categorizing memoirs into safe and recommended; triggering books to be read with caution and those to be avoided. Unfortunately, Emerman provided no rationales or criteria for her selection. Eating disorder memoirs might give people, who are otherwise suffering in isolation and fear, the chance to see that recovery is possible as this reader wrote (in a letter) after reading June Alexander’s (2013) memoir attest: I have spent the last 14 years trying to recover in various ways and means. From outpatient therapy to residential treatment, including various visits to the ER (emergency room), my journey has been defeating. . . . My family basically wants nothing to do with me because I’m so chronic (and they think selfish etc.) and I feel so alone. Thanks for writing your book and giving me hope. I am almost 25 and have been suffering from intermittent anorexia and bulimia for the past 11 years. Tomorrow, I start my graduate year as a registered nurse . . . I fear my career is on the line. Your story has given me much hope in having the ability to lead a normal life while battling my inner-self and one day conquering all I have lost and becoming whole again. . . . You have reignited my faith in recovery when I felt like I was drowning. Please keep sharing your story. © 2014 Australian College of Mental Health Nurses Inc.
THINGS YOU CAN LEARN FROM BOOKS I read your memoir overnight, unable to put it down. I actually had many tears as I read as it reminded me of the realness, heartache, loneliness and destruction my eating disorder has brought about in my life. . . . Since reading your book I am feeling even more inspired to get back on track. I want to help others and inspire as you have done for me. I admire your courage to speak the truth.
As alluded to above, however, not all memoirs have therapeutic potential. There have been suggestions that some memoirs, with their focus on food avoidance or strategies used to disguise weight loss, might give people tips for eating disorders (Mulveen & Hepworth 2006). Thus, it is important to investigate the nature of insights delivered and resonances between the available memoirs, so that clinicians and consumers can make discerning choices about which memoirs to read or recommend. According to Bulik (2011), there are numerous myths about eating disorders that are not helpful. These include mistaken beliefs that either families or society are wholly to blame; that an eating disorder is a lifestyle choice; and that anorexia is the only ‘real’ eating disorder, and that this is a teenage, middle-class, female disease. Whether or not these myths permeate through, and are perpetuated by, published memoirs is important to explore, because if they are accepted and not challenged, they run the risk of compounding stigma and inaccurate perceptions among readers. Further, not all memoirs are suitable for all people. Being at a different phase in the illness-recovery journey or at a particular life stage or age might be influencing factors, as well as sex or or geographic location. As bibliotherapy – the guided reading and analysis of narratives to create healing in readers – draws attention to any myths that appear within a particular memoir and invites readers to critique rather than simply accept them, it might be an effective strategy to empower people with eating disorder and promote recovery. Research is needed to differentiate potentially therapeutic from noxious eating disorder memoirs, and to understand what reader factors might intersect in this effect, including those listed earlier. This knowledge can, in turn, inform the development of exemplars, prompts, and guidelines for facilitating optimum engagement with memoirs.
NARRATIVE THEORY IN NURSING AND MENTAL HEALTH The analysis of illness narratives is a growing field within nursing and medicine. The approach emphasizes the importance of the first-person narrative in healing (Coles 1989; Gottschall 2012; Pennebaker 2000). It suggests that it is through storytelling that the individual comes to © 2014 Australian College of Mental Health Nurses Inc.
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comprehend and integrate the layered experience of an illness, such as an eating disorder. There are numerous theories about the structure of illness narratives that could be relevant to eating disorder memoirs, including Yalom’s (1995) therapeutic factors of groups: (i) universality: Feeling of having problems similar to others, not alone; (ii) altruism: Helping and supporting others; (iii) instillation of hope: Encouragement that recovery is possible; (iv) guidance: Nurturing support and assistance; (v) imparting information: Teaching about problem and recovery; (vi) developing social skills: Learning new ways to talk about feelings, observations, and concerns; (vii) interpersonal learning: Finding out about themselves and others from the group; (viii) cohesion: Feeling of belonging to the group, valuing the group; (ix) catharsis: Release of emotional tension; (x) existential factors: Life and death are realities; (xi) imitative behaviour: Modelling another’s manners and recovery skills; and (xii) corrective recapitulation of family of origin issues: Identifying and changing the dysfunctional patterns or roles one played in primary family. Many memoir narratives share a common structure, the narrative arc, where life experiences and perceptions unfold and reach a crescendo, after which a turning point, denouement, or resolution is reached (Gutkind 1997). Within the eating disorder memoir, this narrative arc is likely to involve a lengthy description of the extent of the eating disorder, the impact this has on a person’s life, and finally how the person was able to change (McAllister Brien Alexander & Flynn 2014). Other theories of narrative suggest that there are only a limited number of storylines and plots that are reworked, recycled, and repurposed through the history of literature (e.g. Campbell 1949; Foster-Harris 1959; Tobias 1993). Further research into the structure of these memoirs could reveal a commonality in key elements of storytelling in certain texts, or unique aspects to the experience of recovery and resolution in these narratives. How the decisive moment when the person moves towards recovery is reached and described in these texts could be particularly powerful for readers who are struggling with an eating disorder, because although there are effective treatments available for eating disorders, many people struggle with the illness for years. People who have resolved their disorder do speak of experiencing a moment of clarity, an epiphany, that marks the beginning of recovery. This is frequently described by people as a ‘turning point’ moment when they understand that they cannot go on as they have done, and that change is not only necessary, but also possible (Yarham 2013). Following the principles of bibliotherapy, it is hypothesized that
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if readers with an eating disorder were to read about another person’s turning point and internalize that experience, they might also reach their own point of change sooner.
RECOMMENDATIONS AND CONCLUSION The potential value of using memoirs therapeutically, in this case, specifically, in the context of eating disorders is discussed in the present study. Memoirs provide a first-person account that offers a more direct entry into the experience of suffering and recovery, which could enhance identification, internalization and empowerment needed for adaptation and healing. For clinicians, these insights might enhance their capability for empathy and readiness for moving towards a recovery stance. If eating disorder memoirs are to become a recovery tool, utilized by diverse and discerning readers, two investigations are needed. First, the memoirs require close examination and classification, so that guidance can be developed on the likely relative therapeutic potential of individual memoirs. Second, guidelines need to be developed in collaboration with clinicians and consumers in order to facilitate their integration into recovery groups and as part of other intentional therapeutic interventions. The results of this research will also fill a gap in current knowledge, which is the potentially therapeutic and/or noxious impact of eating disorder memoirs. One strategy to deal with the range and diversity of the eating disorder memoir resources currently available is to produce subsets of therapeutically-useful excerpts for further consideration and study. Insights into these excerpts need to be reflected upon to see if they have wide relevance, and trigger questions and discussion points need to be generated about these excerpts to facilitate reflection and growth. As a result of exposure to such resources, clinicians might gain deeper access to lived experiences, and consumers might acquire wisdom, hope, universality, and the identity of being an expert in the experience of their own eating disorder via this engagement with memoirs. In each case, the reader will be left more able to fully appreciate the complexity and challenges facing those struggling with eating disorders. The production of guidelines might also enhance the ways in which consumers and clinicians can converse with one another about their recovery challenges and achievements. In the recovery paradigm, mental health workers are expected to work alongside consumers and carers, engaging in dialogue and mutual exchange of information, and not just the prescription of advice or information. In turn, the consumer is viewed as responsible for being an
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actively-involved and invested contributor within their therapeutic relationships with mental health professionals. It is possible that engagement with memoir can provide the consumer with a voice, a language, and an identity of expertise to bring to both this relationship and their recovery as a whole. Armed with this information, clinicians might be better able to use memoirs during individual therapy by recommending particular passages in certain volumes, offering points of discussion, and asking the consumer how ideas in the memoir can be linked to their personal experiences and journey of recovery. Consumers who are aware that the clinician has read the memoir and recalls particular passages might feel more confident that there is empathy for and an understanding of a particular issue, struggle, or complexity. Consumers can also use the memoirs to enlighten and educate their therapist, where they sense points of confusion or a lack of understanding. In summary, memoirs of eating disorders have the potential to provide illuminative understanding for both clinicians and consumers into both the eating disorder experience, and importantly, recovery from it. As a therapeutic tool, they provide a positive alternative to treatments that are directive and prescriptive. Used within group settings, such as eating disorder recovery groups that occur face-to-face or online, shared reading and analysis of memoirs might be empowering, as well as engaging. However, while these memoirs may offer the benefits of universality, catharsis, hope, and guidance to a large audience, there are also a number of factors that need to be further investigated. Work should be completed, for example, investigating which memoirs have most therapeutic potential, what elements within them can be highlighted and critiqued, and whether they might be a useful resource to inform the process of recovery groups.
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