Chapter 7 What literature can do for health: a spotlight on eating disorders in men and boys

Narratives of lived experience

The connection between literature, health, illness and medicine has a long and rich history. In the introduction to a scholarly survey on Dionysus in Literature: Essays on Literary Madness (1994), the editor, Branimir M. Rieger, emphasises the role of literature by asking: ‘from what better source could one learn about madness, violence, murder, deceit, betrayal, lust, greed, loneliness and depression?’.⁴ Ranging from canonical classics to contemporary bestsellers, the choice of authors presented in this collection reminds us of the potential of literature to represent and communicate ways of understanding elementary male human experiences. Rieger’s approach of thirty years ago concentrates mainly on the well-known male authors of the Global North (with Virginia Woolf being the only female author given a chapter of her own).

The following contribution, by contrast, will focus on a type of literature that is not (yet) part of the canon, yet is of growing importance at the interface between literary scholarship and medical research and practice and ‘worthy of its own branch of study’:⁵ contemporary writing about the direct experience of illness. ‘Illness narrative’, ‘autopathography’ or ‘narrative of lived experience’ are terms used to systematise writings that typically combine ‘an auto/biographical narrative about living with an illness with reflections on the wider implications of a particular disease, treatment, recovery and interactions with medical professionals’.⁶ Since the 1960s, and spurred by an increased interest in personal narratives of illness and health as part of a broader, political, social and scientific interest in medicine and its organisation in healthcare systems, there has been a growth of scholarship advancing research into such writings. Feminist scholarship has played an important role here in amplifying marginalised (health) experiences. The genre is becoming richer, more prominent and increasingly important both as a field opening up new areas of literary research, for example in autobiographical and life-writing⁷ or in narratology.⁸ It is also a growing source of information, education and self-help for health issues. Evolving scholarship on this genre offers interdisciplinary approaches that connect, among others, the fields of literature and health.⁹

A girls’ illness?

There is a small, yet growing, number of illness narratives on eating disorders written by men, available in English and German, that have emerged since the 1990s.¹⁰ The texts differ in style and content but at the centre of all of them is a man or a boy with an eating disorder.

But what are eating disorders and why is this topic of interest with regards to men, illness narratives and a dialogue between literature, medicine and health? Eating disorders – anorexia nervosa, bulimia nervosa and binge-eating disorder to list the most commonly known – are complex psychiatric disorders believed to be caused by a combination of biological, psychological, genetic and socio-cultural factors. What causes eating disorders, who develops them, how and why is not fully understood. Yet, when compared with other psychiatric illnesses, research on eating disorders is underfunded and only slowly evolving.

Eating disorders can range from mild to severe, with anorexia nervosa having the highest mortality of all mental health conditions. They can affect anybody regardless of gender, age, background or body shape. Yet eating disorders are still widely perceived by the public and by many healthcare professionals as only affecting females, the group that has, according to available statistics, the highest prevalence. While the focus on females in research, treatment and general awareness is much needed, it has also caused a ‘glaring gender disparity’.¹¹ Medical researchers and cultural scholars, such as Susan Bordo, recognise that a growing number of boys and men are affected by ‘the eating and body image disorders that we once thought only girls had’¹² and that this comes at considerable personal and healthcare cost.¹³ In the UK, between ten and twenty-five per cent of the approximately 1.25 million people diagnosed with an eating disorder are male.¹⁴ Experts warn that these available figures are only the tip of the iceberg and that many more men and boys are affected. John F. Morgan warns of the ‘invisibility’ of these men and boys due to a widespread labelling of the disorder as a ‘women’s and girl’s illness’,¹⁵ and several of the illness narratives by men illustrate the personal effects of this invisibility. For example, when I-narrator Jim in Jim Kohl’s autobiographical text picks up the courage to talk to his doctor about his problems, he is met with the rebuff: ‘ “Well, first of all, you don’t have anorexia because men don’t get anorexia”’.¹⁶ That the term ‘girls’ illness’ – or the German Mädchenkrankheit – is used as a problematic label for eating disorders in several narratives raises related issues. The term marks linguistically the exclusion of men and boys from the very concept of eating disorder and increases stigma and shame. Researcher Russell Delderfield emphasises that constructing eating disorders as a ‘girls’ illness’ perpetuates the view of ‘feminine-as-flawed’ that leads men and boys to regard being affected by such illnesses as shameful and even ‘a threat’ to a particular concept of male identity. It appears to suggest that eating disorders ‘challenge the very essence of identity, of a man’s masculinity (including sexuality) itself’.¹⁷

Illness narratives of eating disorders by men

Illness narratives authored by men with lived experience of an eating disorder can play an important role in raising awareness and knowledge of this ‘underdiagnosed, undertreated, and misunderstood’ health topic.¹⁸ The texts by men in the spotlight in this chapter share central themes beyond mere clinical diagnoses that literary scholarship in English and other languages can help to understand and convey. Themes include food, eating and health, the challenges of being ‘seen’ and helped by healthcare professionals, as well as struggles with recovery. Other themes emerging across this corpus paint an even richer and more complex tableau that includes representations of: food and family, culture, religion and communities; difficult family relations especially struggles with the father – some including violence; being bullied for weight; body image problems; wanting to be more ‘manly’ or muscular; pressure to be better at sports; problems around romantic relationships; alcohol and drug misuse; experiences of coming out as gay; crisis caused by a loved one’s death; the stress caused by major life changes; and a range of mental health issues such as depression, neurodivergent conditions and substance dependency. Autobiographical writings on the topic – such as the titles by Chawner, Laymon and Boks mentioned above, as well as Bernhard Wappis’s Darüber spricht man(n) nicht …! [Men Don’t Talk About This …!] (2005) or Frank Bruni’s Born Round: The Secret History of a Full-time Eater (2009) cited below – can function as a seismograph. This means that, given the lack of empirical data on the pressing issue of eating disorders in men and boys, these literary texts can chronicle existing and imminent problems that are not (yet) on the bigger radar of societies.¹⁹

A comparative approach across national and linguistic boundaries highlights the international significance of the topic and uncovers further nuances. One particular point of comparison is the function food, eating and feeding have for men from different backgrounds and how this is played out in eating disorders and concepts of masculinity. For example, a rural Austrian village in the 1980s is the specific cultural, historical and political setting of the unfolding anorexia of Wappis’s I-narrator. This context is reflected in a particular ‘order’ of food and eating that the protagonist disrupts through his eating disorder. He rejects the traditional ‘Essen für die Kärntner Männer’ [food for the men from the Austrian region of Carinthia], heavily meat-based, regional dishes of Knödel und Gulasch [dumplings and goulash], Schweinsbraten [roast pork] and Wiener Schnitzel.²⁰ This food is served up in large quantities and at strictly regular mealtimes by the housewife-mother. Mealtimes are portrayed as tense family scenarios dominated by the working-class father whose national pride and childhood experiences of food scarcity after the Second World War shape his attitude towards eating. By rejecting food, the I-narrator is confronting particular gender roles and concepts of masculinity and national identity. Writing about food and eating means – here and in many other narratives – also engaging in critical socio-cultural and historical commentary and with concepts of hegemonic masculinity.

Another example is the I-narrator in Bruni’s Born Round for whom the regional dishes cooked by his father and grandmother are closely connected to the struggle to assimilate into US society as Italian immigrants.²¹ The large family’s extensive feasts and cooking rituals are part of the desire to (re)create a lost cultural legacy and a sense of belonging. In the family’s new environment, food functions as what Maud Ellmann calls ‘currency’: the acts of feeding and eating read as the ‘prototype of all transactions with the other’.²² The overemphasis on food as part of the developing binge-eating disorder by Bruni’s I-narrator is set in the context of family and cultural legacy, migration and identity-formation. Bruni’s story mirrors the stories of several other men (and women) where eating disorders are connected with personal stories of migration and displacement.²³ A third example, Laymon’s Heavy: An American Memoir (2018), is one of the few texts that speaks to the experience of a Black male with an eating disorder.²⁴ Laymon interweaves his personal experiences of excessively bingeing and severely restricting food with American history and problems of social inequality, sexual violence, institutional racism and ‘the racial and gendered terror that controlled and contorted the bodies of our family’.²⁵ These three examples offer an impression of how narratives – and their mediation through literary analysis – can help ‘to understand the meaning of people’s experiences without reducing these to statistical values about aetiology, epidemiology, psychopathology or treatment’.²⁶ However, these texts also show that literature and literary analysis can bring much more into the discussion than merely adding to an inventory of illness profiles. Literary studies open other fields of enquiry such as history, cultural politics, gender studies, masculinity studies, migration and trauma studies, or critical race studies – to name but a few.

The disciplines of literary studies are crucial contributors here to enable international research and to engage fully with the transculturality of the topic across linguistic, cultural and national boundaries. International research on autofiction, memory studies and life-writing is enhancing our understanding of how autobiographical narratives are always embedded in wider cultural and social texts and debates. The growing interest in life-writing within the humanities and beyond over the last two decades is one example of how academic disciplines not only respond to cultural debates and social phenomena but also help to establish new cultural spaces within which autobiographical texts can be produced and received. Literary accounts of illness, their analyses in literary scholarship and recognition as distinct genres have opened new trajectories to understand what it means to live with an illness or a chronic condition – not only for philologists but also for health professionals and the lay reader.

Furthermore, these narratives have the potential to expand and advance literary scholarship itself. In an article in the journal Literature and Medicine, the renowned literary theorist and narratologist Shlomith Rimmon-Kenan highlights the potential of illness narratives to expand notions of the narrative. She reads illness narratives as texts that can teach us to consider ‘the complex interaction between the collapse of the body and that of the narrative, the problem of narrating the unnarratable’. She encourages us to look at the contributions such texts can make to our literatures and our thinking ‘in terms of contingency, randomness, and chaos rather than order and regularity’.²⁷ It is against such contexts that so-far-unheard voices – both from the past and the present – become (re) publishable and gain new attention. And it should not be forgotten that such new perspectives are standing on the pioneering shoulders of critical feminist interventions in the literary canon.

Better health through literature?

When it comes to health, literature that links health issues and medical encounters with personal stories can provide access to topics otherwise inaccessible for many readers.²⁸ Done sensitively, this can contribute significantly to raising awareness and increasing knowledge. To maximise the power of literature for better health seems to be an important way forwards given strained public health systems nationally and internationally and the fact that waiting lists for treatment are becoming longer. Programmes such as the UK National Health Service’s (NHS) ‘Books on Prescription’ that build on the role of literature and reading for better health aim to bridge this gap to ‘help people who may be experiencing stress, anxiety, depression or other psychological problems’ including eating disorders.²⁹ Another project, ‘Reading Well’, reports its success in delivering starting points for further engagement with ‘things that are difficult to discuss’, especially within the ten minutes maximum that UK patients have with a doctor.³⁰ While there is a clear need to take a decisive stance where ‘traditional’ healthcare services need to step up to deliver care, there is a strong case to be made for the use of literature for better health. Literature-based projects provide anecdotal evidence for the success of such an approach for eating disorders in men (Hungry for Words, n.d.).³¹ Research on self-help and guided self-help (with the help of a therapist) speaks to the benefits of using select literature that allows individuals to work privately and at their own pace – reading online and offline.³²

However, there can also be problems with this ‘prescribing’ of literature. The topic raises questions regarding who reads, when, why and how, and who doesn’t in the light of education, language, diversity, age and gender, and particularly how to engage boys as (perceived) ‘reluctant readers’.³³ The closure of libraries is one practical concern. Moreover, research has identified the need to investigate how this kind of approach affects different reader cohorts.³⁴ Regarding eating disorders, Emily Troscianko makes a strong case for critical and empirical evaluation of how reading texts about eating disorders – self-help books, autobiographical illness narratives and fictional accounts – may affect readers with past or current experiences of the disorder. Based on an empirical study, she stresses the need to acknowledge that literature ‘is not a transparent vehicle for CBT [cognitive behavioural therapy]’ or other therapies but rather ‘a richly selective and associative medium capable of generating a variety of specific (wanted and unwanted) responses in readers’.³⁵ With regards to the reading behaviours of men and boys and other types of eating disorders than anorexia there is a need for more research, particularly regarding social media, but these findings raise important questions for our topic.³⁶

We are reminded that literary texts that explore the human experience can be a powerful tool in reading for better health that has a strong capacity to speak to its readers, to engage and create responses. Clinical studies in recovery narratives raise ‘connectedness, understanding, reduction in stigma, and validation’ as benefits of reading and writing sensibly used and carefully screened personal narratives.³⁷ There is clear scope for collaborative work between clinicians, scientists, people with lived experience and literary scholars to develop a more nuanced understanding of reading for better health, particularly when it comes to eating disorders. Clinical researchers looking for the ‘active ingredients’³⁸ in self-help using literary texts can benefit from the insights into such texts offered by literary scholars regarding stylistic dimensions, use of language and metaphor, linguistic characteristics, questions around fiction and authenticity, narrative strategies or the creation of ambiguities. Rather than restricting reading lists or censoring texts, such collaborations can lead to designing tools that ‘unpack’ texts and provide both reading in private and reading in groups in schools or healthcare settings with insights, information, questions and further material.

In the field of eating disorders in men, the text Schlagmann [Strokeman] by Evi Simeoni (2012), based on the life story of Olympic rower Bahne Rabe, and the accompanying teachers’ handbook³⁹ are examples of such fruitful work across the disciplines. For instance, the handbook introduces Gottfried Benn’s 1953 poem Nur zwei Dinge [Just Two Things] to engage students in further discussion of the topic of addiction and identity raised in the text. Furthermore, it encourages an exploration of the genre of letters, its particular style and cultural significance regarding letters by gescheiterte Helden [failed male heroes] and across linguistic boundaries, adding to the letters from the text other German and English examples, including the suicide note of Nirvana lead singer Kurt Cobain (1967–94).⁴⁰

Better healthcare through literature?

Literature can not only give voice to but can also amplify the personal experiences of those affected by poor health and contribute to shaping healthcare, training of practitioners and planning clinical research. Driven since the 1970s by the emergence of patients’ rights activism, the disability movement and the emphasis of recent UK healthcare policies on PPE (Public & Patient Engagement), contributions by people with lived experience are starting to be acknowledged in healthcare and medical research. As stated, current medical classifications that underpin diagnoses of eating disorders are presently mostly geared towards females, and gender diversity is ‘not accommodated in current classification schemes’.⁴¹ This may directly affect the risk of under- or misdiagnoses. Illness narratives by men based on their personal experiences can contribute to change here.

While quantitative evidence-based research is the main driver of specialised scientific enquiry, qualitative research is becoming increasingly important to develop effective treatment for health problems. Some approaches in qualitative research consider accounts of individual experiences, including those delivered in literary form,⁴² and rely on interpretative tools and thematic analysis⁴³ to describe patterns of illness profiles. Here, the potential of interdisciplinary work lies not in assimilating literary scholarship into medicine but in recognising its distinct value and bringing the two disciplines into dialogue.

Individual projects and whole programmes have emerged that aim to drive such dialogue in various ways.⁴⁴ The American journal Literature and Medicine, founded in 1982, has played an important role in developing an interdisciplinary research agenda and is still driving strategies, methodologies and engagement. The teaching programme of ‘Narrative medicine’, pioneered at Columbia University by physician and literary scholar Rita Charon, emphasises the importance of literature for medical practitioners towards developing ‘narrative competence’ as a skill to improve their understanding of patients and increase their empathy and self-understanding. She describes it as the capacity ‘to recognize, absorb, interpret, and be moved by the stories of illness’⁴⁵ – those stories that physicians hear from their patients but also those that they read. Her programme aims to fortify the work of health professionals using narratives for clinical practice training. Reading together or alone for them to become ‘more attentive to patients, more attuned to patients’ experiences, more reflective in their own practice, and more accurate in interpreting the stories patients tell of illness’.⁴⁶ Charon cites from Virginia Woolf’s essay ‘How Should One Read a Book?’ as a guiding principle: ‘Open your mind as widely as possible, then signs and hints of almost imperceptible fineness … will bring you into the presence of a human being unlike any other’.⁴⁷ Other programmes have developed similar concepts further for the use of literature in the education of current and future healthcare staff, and examples include Teaching Literature and Medicine (Hawkins, 1999), The Chief Concern of Medicine (Schleifer and Vannatta, 2013) or Poems for Health Professionals (Bartel, n.d.). While urging the connection between the disciplines, Charon and others also warn against the danger of using literature merely to award medical professionals ‘a civilizing veneer’.⁴⁸ Just as literature is not a straightforward tool for better health, neither is it a magic tool that turns practitioners into more empathetic and humane healthcare professionals. However, engaging deeply and in the fullest sense with the struggles expressed in texts such as Weight Expectations (Chawner, 2018) or Luft nach unten [Room for Less] (Boks, 2019) can give those involved in healthcare insights into experiences of illness and recovery that reach beyond medical case studies. To open up narrative medicine towards more contemporary texts and to international contexts, to include more non-English titles (in translation if necessary) and texts at the margins of traditional literary genres, including those produced and self-published by former patients such as Wappis (2005), have been identified as ways to improve this programme.⁴⁹ Yet such connecting of literature, health and medicine is only possible if institutions are willing to invest time and resources and find in their curricula and training some opportunities for interdisciplinary engagement within the main specialist pathways.

On a disciplinary level, the subjects of medical humanities and the subsequently established health humanities explore systematically the connections between arts and humanities and medicine and healthcare. The shift from ‘medical’ to ‘health’ marks the recognition of all fields and the sheer variety of people that are involved in healthcare – not purely medics. It also acknowledges that ‘medicine is only a minor determinant of health in populations alongside other factors such as class, education, occupation, environment, race, and stigma’,⁵⁰ let alone gender and sexuality. The disciplines have emerged through research that is available in English and German and are still driven by research in the US and the UK. Yet international academia is now employing this interdisciplinary framework to drive innovative research agendas around the globe. Stephanie Hilger, the editor of the first edited volume on health humanities in German studies (emphasis: HB) with contributions from scholars working in many different countries, invites readers to reflect on the ‘ensuing productive transformations that the Health Humanities undergoes when it […] takes on different terminologies and incarnations across geographical and linguistic boundaries’.⁵¹ Reflecting on such new international directions also shows the need to open up the discipline and our investigations into the connections between literature, health and medicine beyond North American, German and British contexts and beyond research that we can find in English translation.

Better health through writing?

In his research into illness narratology, medical anthropologist Arthur W. Frank has coined the term ‘quest narrative’. The reference is to one of the oldest models of storytelling about an individual’s often arduous journey in pursuit of a particular goal, usually with a focus on learning, self-reflection, questioning and overcoming obstacles. Quest narratives ultimately ‘accept illness and seek to use it’; illness becomes ‘quest’ and ‘journey’,⁵² and such stories ‘imply that the teller has been given something by the experience, usually some insight that must be passed on to others’.⁵³ Unsurprisingly, given their focus on recovery, ‘quest’ narratives are the ones predominantly used for teaching, self-help purposes and ‘prescribed books’ in the field of eating disorders and in other health fields. However, while such thinking highlights the pragmatic benefits of literature for better health, literature, of course, cannot be reduced to this. An interdisciplinary dialogue should not limit itself to one-sided ‘medically productive borrowings from the humanities’.⁵⁴ Instead, literary texts that disrupt and question reader expectations towards progress, healing or some kind of closure, and that therefore resist typecasting as quest narratives, also provide important contributions. These often challenge the boundaries of narrative typology through aesthetic complexity and ambiguity, through their ‘contingency, randomness, and chaos’.⁵⁵ For example, the 1996 autobiographical account of anorexia by American Michael Krasnow, My Life as a Male Anorexic, is marked by permanent resistance to and distrust of healthcare professionals and their institutions. The text challenges its readers by generating two conflicting discourses that ask to be navigated. For example, in one passage, the severely ill and undernourished I-narrator resists violently to being restrained and force-fed with feeding tubes. He aims to regain his autonomy and voices his anger about what he perceives as an abusive breach of trust. He is ‘ “talking back” to the authority of medical doctors’ and speaks out against what reads here as an account of ‘dehumanizing treatment accorded by institutions to vulnerable people’.⁵⁶ However, the medical documents inserted into Krasnow’s text that chronicle his illness from the perspective of various clinicians present a different perspective. They speak to the immediate threat to the patient’s life and to tube-feeding as a life-saving intervention. Rather than presenting a quest for better health, the narrative encourages critical engagement with a conflicted medical scenario and stimulates reflection as to which account to privilege. Furthermore, the ambiguity of diverging interpretations may also open the possibility of not arriving at one ‘truth’ – with all its ethical consequences.

Ambivalence and uncertainty are also integral to texts where loss of mental or language facility, having unusual sensory experiences, memory loss or other experiences present considerable challenges to narration. Boks’s Luft nach unten [Room for Less] (2019), Jim Kohl’s Skeletal Marriage (2009) and Gary Grahl’s Skinny Boy (2007) all engage with the experience of hearing and talking to an eating-disorder voice.⁵⁷ Krasnow’s 1996 text navigates memory loss as a result of electric shock treatment, and Benjamin von Stuckrad-Barre’s Panikherz [Panic Heart] (2016) deals with blackouts due to drugs and alcohol.⁵⁸

It is the strength of literary studies to train readers to do justice to the uncertainties and ambivalences resulting from such conditions as presented in narrative texts; they learn how to be open to a text’s loud silences and its use of language; to recognise and accept a text’s polyphony and heterogeneity, its conflicting voices, its dialogism and, what Mikhail Bakhtin called, heteroglossia: that is, to acknowledge that any word, any speech is already multi-vocal. Having such analytical devices in the healthcare toolkit may help in expanding and deepening interdisciplinary learning for a better understanding of illness

Conclusion

This chapter argues that literature, creative writing and literary research provide a path in the quest to find better health outcomes in treating eating disorders in men and boys. It advocates the therapeutic uses of reading and writing towards improving healthcare training and research, changing perceptions and even clinical classifications, and raising awareness of health issues in an international context. The exploration of literature in dialogue between literary scholars, healthcare practitioners and individuals with lived experience can contribute to real health outcomes through improving the visibility of, language for and treatment approaches to eating disorders in males. To achieve and maintain good health is one goal here. However, another goal is thinking about creative openness and resistance to narrative typecasting that both open up questions about the ‘other sides’ of literature.

That a dialogue between literature, healthcare and medicine can bring very real, positive changes in medical practice is also highly relevant to educational policy at a time when the arts and humanities must constantly defend their value for and impact on society. As noted earlier, literature opens up other fields of enquiry such as history, cultural politics, gender studies, masculinity studies, migration and trauma studies, or critical race studies and, importantly, access to other languages. Accordingly, the practical suggestions offered here in support of literary studies and their impact in the medical realm lead on to a multitude of other aspects of what literature can be and do towards gaining knowledge and stimulating analytical competence, critical intelligence and creative imagination.

Notes

1.   Dave Chawner, Weight Expectations: One Man’s Recovery from Anorexia (Jessica Kingsley, 2018), p. 97.

2.   The author is Professor of German Studies and Health Humanities. She works on the interdisciplinary projects Hungry for Words (University of Nottingham, n.d.) and EDIFY (EDIFY, n.d.). The author’s research in this field is supported by UK Research and Innovation as part of the interdisciplinary EDIFY programme (grant number: MR/W002418/1).

3.   See Bianca Sukrow, Der Fall des Falles: literarische Phänomene in psychiatrischen und autobiografischen Fallgeschichten (Olms, 2015), p. 15. There is considerable scholarship on the topic of eating disorders in women and girls. Three seminal examples from the extensive list of titles are: Susie Orbach’s Fat is a Feminist Issue: The Anti-Diet Guide to Permanent Weight Loss (1978), Susan Bordo’s Unbearable Weight: Feminism, Western Culture, and the Body (2003) and Isabelle Meuret’s Writing Size Zero: Figuring Anorexia in Contemporary World Literatures (2007).

4.   Branimir M. Rieger, Dionysus in Literature: Essays on Literary Madness (Popular Press, 1994), p. 3.

5.   Paul Crawford, and others, Health Humanities (Palgrave Macmillan, 2015), p. 59.

6.   Stella Bolaki, Illness as Many Narratives: Arts, Medicine and Culture (Edinburgh University Press, 2016), p. 4.

7.   See Alfred Hornung, ‘North America’, in Handbook of Autobiography/Autofiction, ed. by Martina Wagner-Egelhaaf, vol. II (de Gruyter, 2019), pp. 1205–61 (pp. 1250–3).

8.   See Shlomith Rimmon-Kenan, ‘What Can Narrative Theory Learn from Illness Narratives?’, Literature and Medicine, 25.2 (Fall 2006), pp. 241–54.

9.   Seminal studies that have advanced the field include, but are not limited to, Arthur Kleinman’s The Illness Narratives (1988); Arthur Frank’s The Wounded Storyteller: Body, Illness and Ethics (1995); Ann Hunsaker Hawkins’s Reconstructing Illness: Studies in Pathography (1993); Rita Charon’s Narrative Medicine: Honoring the Stories of Illness (2006); Stella Bolaki’s Illness as Many Narratives: Arts, Medicine and Culture (2016); G. Thomas Couser’s Signifying Bodies: Disability in Contemporary Life Writing (2009); and Ann Jurecic’s Illness as Narrative (2012).

10.   The author has explored this body of work in detail in a book-length study on autobiographical writing and in a co-authored volume. See Heike Bartel, Men Writing Eating Disorders: Autobiographical Writing and Illness Experience in English and German Narratives (Emerald, 2021); Heike Bartel, James Downs, and Georgios Paslakis, Masculinities and Mental Health: Eating Disorders in Men’s Lived Experience and Contemporary Discourse (Routledge, 2026).

11.   Russell Delderfield, Male Eating Disorders: Experiences of Food, Body and Self (Palgrave Macmillan, 2018), p. 2.

12.   Susan Bordo, Unbearable Weight: Feminism, Western Culture, and the Body (University of California Press, 2003), p. xxii.

13.   Leigh Colin and Raymond Lemberg, Current Findings on Males with Eating Disorders (Routledge, 2014), p. 195.

14.   https://www.beateatingdisorders.org.uk/media-centre/eating-disorder-statistics/ [accessed 19 August 2024].

15.   John F. Morgan, The Invisible Man: A Self-help Guide for Men with Eating Disorders, Compulsive Exercise and Bigorexia (Routledge, 2008), pp. 6–7 and p. x.

16.   Jim Kohl, Skeletal Marriage (Lightning Source, 2009), p. 128.

17.   Delderfield, Male Eating Disorders, p. 13 and p. 6.

18.   Eric Strother, and others, ‘Undertreated, Underdiagnosed and Misunderstood’, Eating Disorders, 20.5 (2012), pp. 346–55 (p. 346).

19.   The metaphor of literature as a seismographic instrument to indicate, measure and warn against socio-cultural and political shifts and ‘earthquakes’ was first introduced by cultural sociologist Siegfried Kracauer (1889–1966) and has been introduced in the context of health problems in societies by von Jagow and Steger; see Bettina von Jagow and Florian Steger, Was treibt die Literatur zur Medizin? Ein kulturwissenschaftlicher Dialog (Vandenhoek & Ruprecht, 2009), p. 35.

20.   Bernhard Wappis, Darüber spricht man(n) nicht …! Magersucht und Bulimie bei Männern. Ein autobiographischer Erfahrungsbericht und Ratgeber (Books on Demand, 2005), p. 19.

21.   See Frank Bruni, Born Round: The Secret History of a Full-time Eater (Thorndike Press, 2009).

22.   Maud Ellmann, The Hunger Artists: Starving, Writing and Imprisonment (Virago, 1993), p. 53.

23.   See, for example, Dennis Henning with P. Woods, Hiding Under the Table (Americana Publishing, 2004); and Heike Bartel, ‘Rewriting Illness from the Turkish-German Margins’, in The Health Humanities in German Studies, ed. by Stephanie M. Hilger (Bloomsbury, 2024), pp. 173–88.

24.   Medical researchers stress that more insight into experiences of eating disorders by Black men – and other ‘minority ethnic patients’ – are needed (Chukwuemeka Nwuba and Bailey Spinn, eds, Eating Disorders Don’t Discriminate: Stories of Illness, Hope and Recovery from Diverse Voices (Jessica Kingsley, 2024), p. 81). In 2019–20, hospital admissions in England saw a sharp rise ‘for people from a black African background …, increased by a staggering 216%’. This is particularly relevant given research findings indicating that clinicians may be less likely to recognize eating disorders in Black patients compared to white patients (see Kathryn H. Gordon, Marisol Perez and Thomas E. Joiner Jr, ‘The Impact of Racial Stereotypes on Eating Disorder Recognition’, International Journal of Eating Disorders, 32.2 (September 2002), pp. 219–24).

25.   Kiese Laymon, Heavy: An American Memoir (Simon and Schuster, 2018), p. 198.

26.   Delderfield, Male Eating Disorders, p. 2.

27.   Rimmon-Kenan, ‘What Can Narrative Theory Learn’, pp. 241 and 243.

28.   Von Jagow and Steger, Was treibt die Literatur, p. 11.

29.   NHS, ‘Books on Prescription’, https://www.nhsborders.scot.nhs.uk/patients-and-visitors/our-services/general-services/wellbeing-service/books-on-prescription/ [accessed 20 August 2024].

30.   National Academy for Social Prescribing, ‘Books Can Help Get Us Through Tough Times’, https://socialprescribingacademy.org.uk/resources/books-on-prescription/ [accessed 20 August 2024].

31.   See University of Nottingham, ‘Hungry for Words: Creative Approaches to Shape Healthcare and Address Health Inequalities’, https://www.nottingham.ac.uk/research/groups/hungry-for-words/ [accessed 19 August 2024].

32.   See Chris Williams, ‘New Technologies in Self-help: Another Effective Way to Get Better?’, European Eating Disorders Review, 11.3 (May/June 2003), pp. 170–82; and Sarah J. Perkins, and others, ‘Self-help and Guided Self-help for Eating Disorders’, Cochrane Database of Systematic Reviews, 3 (2006), pp. 1–60 (p. 10).

33.   International Literacy Association, ‘Effective Approaches to Motivate and Engage Reluctant Boys in Literacy’, https://ila.onlinelibrary.wiley.com/doi/abs/10.1002/TRTR.01107 [accessed 19 August 2024].

34.   See Kerryn Husk, and others, ‘What Approaches to Social Prescribing Work, for Whom, and in What Circumstances? A Realist Review’, Health & Social Care in the Community, 28.2 (2020), pp. 309–24.

35.   Emily T. Troscianko, ‘Literary Reading and Eating Disorders: Survey Evidence of Therapeutic Help and Harm’, Journal of Eating Disorders, 6.8 (April 2018), pp. 1–17 (p. 2).

36.   See also Heike Bartel and James Downs, ‘Opening a New Space for Health Communication: Twitter and the Discourse of Eating Disorders in Men’, in Masculinities and Discourses of Men’s Health, ed. by Gavin Brookes and Małgorzata Chałupnik (Palgrave Macmillan, 2023), pp. 77–100.

37.   Stefan Rennick-Egglestone, and others, ‘Mental Health Recovery Narratives and Their Impact on Recipients: Systematic Review and Narrative Synthesis’, The Canadian Journal of Psychiatry, 64.10 (2019), pp. 669–79 (p. 671).

38.   Perkins, and others, ‘Self-help and Guided Self-help’, p. 10.

39.   See Christoph Kunz, Evi Simeoni, Schlagmann. Lehrerhandbuch (Klett, 2013).

40.   Kunz, Evi Simeoni, p. 22 and pp. 31–3.

41.   Stuart B. Murray, Scott Griffiths, and Jonathan M. Mond, ‘Evolving Eating Disorder Psychopathology: Conceptualising Muscularity-oriented Disordered Eating’, The British Journal of Psychiatry, 208.5 (2016), pp. 414–15.

42.   See, for example, Priyanka Thapliyal, Deborah Mitchison, and Phillipa Hay, ‘Insights into the Experiences of Treatment for an Eating Disorder in Men: A Qualitative Study of Autobiographies’, in Advances in the Prevention and Management of Obesity and Eating Disorders. Special Issues Edition of Behavioural Sciences, ed. by Amanda Sainsbury and Felipe Q. da Luz (MDPI, 2018), pp. 107–23.

43.   See, for example, Virginia Braun and Victoria Clarke, ‘Using Thematic Analysis in Psychology’, Qualitative Research in Psychology, 3.2 (2016), pp. 77–101.

44.   For an overview see Hilger, ‘Introduction’, pp. 1–22.

45.   Rita Charon, Narrative Medicine: Honoring the Stories of Illness (Oxford University Press, 2006), p. vii.

46.   Charon, Narrative Medicine, p. 107.

47.   Charon, Narrative Medicine, p. 109.

48.   Charon, Narrative Medicine, p. 226.

49.   See von Jagow and Steger, Was treibt die Literatur, pp. 11–12; also, Heike Bartel, Men Writing Eating Disorders: Autobiographical Writing and Illness Experience in English and German Narratives (Emerald, 2021), pp. 125–6.

50.   Therese Jones, and others, ‘The Almost Right Word: The Move from Medical to Health Humanities’, Academic Medicine, 92.7 (July 2017), pp. 932–5.

51.   Hilger, ‘Introduction’, p. 10.

52.   Frank, The Wounded Storyteller, p. 115.

53.   Frank, The Wounded Storyteller, p. 118. Frank’s approach has been taken up, extended and also critiqued by many subsequent scholars in ways that raise important questions for the connection of literary narratives and medicine (see, for example, Angela Woods, ‘The Limits of Narrative: Provocations for the Medical Humanities’, BMJ Medical Humanities, 37.2 (2011), pp. 73–8.

54.   Stefani Engelstein, ‘Foreword: Boundaries and Interdisciplines: Where Health Humanities Meets Literature & Science in German Studies’, in The Health Humanities in German Studies, ed. by Stephanie M. Hilger (Bloomsbury, 2024), pp. x–xv (p. xxiii).

55.   Rimmon-Kenan, ‘What Can Narrative Theory Learn’, p. 243.

56.   Sidonie Smith and Julia Watson, Reading Autobiography: A Guide for Interpreting Life Narratives (University of Minnesota Press, 2010), pp. 146–7.

57.   Aaron Boks, Luft nach unten. Wie ich mit meiner Magersucht zusammenkam und mit ihr lebte (Schwarzkopf & Schwarzkopf, 2019); Jim Kohl, Skeletal Marriage (2009); Gary Grahl, Skinny Boy: A Young Man’s Battle and Triumph Over Anorexia (American Legacy Media, 2007).

58.   Michael Krasnow, My Life as a Male Anorexic (Harrington Park Press, 1996); Benjamin von Stuckrad-Barre, Panikherz (Kiepenheuer & Witsch, 2016).

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