Medical Narratives of Ill Health

A special issue of Humanities (ISSN 2076-0787).

Deadline for manuscript submissions: closed (28 February 2019) | Viewed by 50808

Special Issue Editor


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Guest Editor
Department of English, Misericordia University, 301 Lake Street Dallas, PA 18612, USA
Interests: medical humanities; narrative medicine; science, medicine, and literature; fin de siècle fiction
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Special Issue Information

Dear Colleagues,

The field of literature and medicine has been steadily growing over the past four decades, solidifying itself as a vital component of the medical and health humanities. The intersection of literature and medicine enriches how we view issues of health, disease, and care, particularly in how we value the individual’s narrative of health and ill health to help with diagnosis, treatment, and the relationship between the practitioner and the patient. In an attempt to wade through the difficult terrain of defining disease and health, Kenneth Boyd provides the following medical definitions (adapted from Marshall Marinker’s earlier work): “Disease […] is the pathological process, deviation from a biological norm. Illness is the patient's experience of ill health, sometimes when no disease can be found. Sickness is the role negotiated with society” (Boyd, 1997). What Boyd reveals about these definitions is that one allows for the individual’s experience of ill health (illness), while the other two rely on others’ perceptions of ill health. Thus, he concludes, a clear definition of disease (and even sickness) is elusive: “to call something a disease is a value judgement, relatively unproblematic in cases when it is widely shared, but more contentious when people disagree about it” (Boyd, 1997). This contentious space has widened during the modern medical era (early nineteenth century to the present day), as medical reliance on technology favors an objective identification of disease. However, literary works, through both personal accounts and fictional scenarios, challenge this singular narrative of disease and ill health provided by the medical community.

For this special issue of Humanities, we seek to explore how literature from the early nineteenth century to the present day engages with and challenges modern medical authority when it comes to understanding disease, illness, and sickness. Papers for this special issue of Humanities should focus on narratives—fictional and/or non-fictional (such as medical realism, science fiction, pathographies, medical reports, etc.)—that explore the contentious space of disagreement between medicine, society, and the individual. Authors might consider topics such as: disease as metaphor; social vs. medical definitions of disease; patient agency and individual experiences of illness; challenges to medical technology’s presumed objectivity; representations of contagion and/or public health—or any other topics that relate to better understanding literary representations of disease, illness, and/or sickness.

Articles should be no more than 8000 words, inclusive of notes. Please email articles directly to Amanda M. Caleb at [email protected].

Dr. Amanda Caleb
Guest Editor

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Keywords

  • disease, sickness, and illness
  • public health and contagion
  • patient agency
  • medical technology
  • medical humanities

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Published Papers (9 papers)

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Research

14 pages, 216 KiB  
Article
A Mind Trying to Right/Write Itself: Metaphors in Madness Narratives
by Renana Stanger Elran
Humanities 2019, 8(2), 118; https://doi.org/10.3390/h8020118 - 25 Jun 2019
Cited by 2 | Viewed by 4923
Abstract
This article explores autobiographical madness narratives written by people with lived experience of psychosis, dated from the mid-19th century until the 1970s. The focus of the exploration is on the metaphors used in these narratives in order to communicate how the writers experienced [...] Read more.
This article explores autobiographical madness narratives written by people with lived experience of psychosis, dated from the mid-19th century until the 1970s. The focus of the exploration is on the metaphors used in these narratives in order to communicate how the writers experienced and understood madness from within. Different metaphors of madness, such as going out of one’s mind, madness as an inner beast, another world, or a transformative journey are presented based on several autobiographical books. It is argued that these metaphors often represent madness as the negative picture of what it is to be human, while the narrative writing itself helps to restore a sense of belonging and personhood. The value and function of metaphors in illness and madness narratives is further discussed. Full article
(This article belongs to the Special Issue Medical Narratives of Ill Health)
22 pages, 9688 KiB  
Article
Illness Narratives and Facebook: Living Illness Well
by Katrina Hinson and Ben Sword
Humanities 2019, 8(2), 106; https://doi.org/10.3390/h8020106 - 30 May 2019
Cited by 7 | Viewed by 5552
Abstract
Earlier scholarship provides important insights into the relationship of individual stories and narratives. Interactions with healthcare professionals and the healthcare system can often subsume the individual’s authority/agency. The patient’s narrative often gets lost in the elaborate web of doctor visits, referrals, medical records, [...] Read more.
Earlier scholarship provides important insights into the relationship of individual stories and narratives. Interactions with healthcare professionals and the healthcare system can often subsume the individual’s authority/agency. The patient’s narrative often gets lost in the elaborate web of doctor visits, referrals, medical records, case notes, etc. Online spaces such as Facebook, however, provide individuals with a platform through which they can understand, craft, and communicate their own personal illness narratives. Realizing this, this paper examines how the narratives of illness shared in illness-related Facebook groups help individuals make sense out of the disruption caused by their personal experience while residing in the ‘kingdom of the ill.’ To observe the construction and communication of these narratives, the researchers observed the activity of an online pulmonary embolism and deep-vein thrombosis survivor support group for one year. In this online space, individuals gained agency and authority in the construction of their own illness narratives. The findings of the research demonstrated both the importance of narrative in an individual’s health/illness journey as well as the need to further explore avenues that establish and bolster patient agency within the medical system. Full article
(This article belongs to the Special Issue Medical Narratives of Ill Health)
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9 pages, 207 KiB  
Article
Contested Spaces: The Heterotopias of the Victorian Sickroom
by Amanda Caleb
Humanities 2019, 8(2), 80; https://doi.org/10.3390/h8020080 - 19 Apr 2019
Cited by 4 | Viewed by 3845
Abstract
Both the invalid and the sickroom pervade the writings of the Victorian period, particularly in fiction, medical guidebooks, and autobiographies. The sickroom is a space that separates the invalid from the healthy space of the house and defines the invalid body as other. [...] Read more.
Both the invalid and the sickroom pervade the writings of the Victorian period, particularly in fiction, medical guidebooks, and autobiographies. The sickroom is a space that separates the invalid from the healthy space of the house and defines the invalid body as other. However, as a space that is both marginalized and central, the sickroom is molded by the medical and social views of sickness and the individualized experience of illness. This article contextualizes the Victorian sickroom by conceptualizing it through the lens of Foucault’s heterotopia of deviation, which represents the medicalized act of dividing practices to physically separate those deemed sick from healthy people and spaces. The sickroom functions as a heterotopia in three ways: physical space created by medical authority; textual space contested through invalid narratives; and bodily space, whereby the sickroom is mapped onto the invalid’s body. Thus, the sickroom as heterotopia reveals the contentiousness of invalidism and the limitations of medical authority and power. Full article
(This article belongs to the Special Issue Medical Narratives of Ill Health)
9 pages, 262 KiB  
Article
Women’s Ageing as Disease
by Sara Zadrozny
Humanities 2019, 8(2), 75; https://doi.org/10.3390/h8020075 - 15 Apr 2019
Cited by 2 | Viewed by 7493
Abstract
In the medical humanities, there has been a growing interest in diagnosing disease in fictional characters, particularly with the idea that characters in Charles Dickens’s novels may be suffering from diseases recognised today. However, an area that deserves greater attention is the representation [...] Read more.
In the medical humanities, there has been a growing interest in diagnosing disease in fictional characters, particularly with the idea that characters in Charles Dickens’s novels may be suffering from diseases recognised today. However, an area that deserves greater attention is the representation of women’s ageing as disease in Victorian literature and medical narratives. Even as Victorian doctors were trying to cure age-related illnesses, they continued to employ classical notions of unhealthy female ageing. For all his interest in medical matters, the novelist Charles Dickens wrote about old women in a similar vein. Using close reading to analyse Victorian gerontology alongside Charles Dickens’s novels Dombey and Son (1848) and Great Expectations (1861), this article examines narratives of female ageing as disease. It concludes by pointing to the ways that Victorian gerontology impacts on how we view women’s ageing as ‘diseased’ today. Full article
(This article belongs to the Special Issue Medical Narratives of Ill Health)
15 pages, 290 KiB  
Article
Personal Narratives of Illness: Redressing Madness in the Singaporean Fiction of Amanda Lee Koe
by Hannah Ming-Yit Ho
Humanities 2019, 8(2), 70; https://doi.org/10.3390/h8020070 - 6 Apr 2019
Cited by 1 | Viewed by 4843
Abstract
Amanda Lee Koe’s short stories (2013) redress the limited tolerance for the mad citizen-subject, whose subjectivity is obscured, if not erased, by medical prescriptions. Official and often state-sanctioned conceptualizations of the peculiar mind are grievously justified in behavioral manifestations deemed socially unacceptable. Koe’s [...] Read more.
Amanda Lee Koe’s short stories (2013) redress the limited tolerance for the mad citizen-subject, whose subjectivity is obscured, if not erased, by medical prescriptions. Official and often state-sanctioned conceptualizations of the peculiar mind are grievously justified in behavioral manifestations deemed socially unacceptable. Koe’s stories about idiosyncratic Singaporeans illustrate the way personal experiences—of memory loss, homosexual tendencies, and emotional self-expressions—are informed by, and in turn inform, the biopolitical regulation of Singaporean citizens rendered objects of biopower. In this way, her stories invite a meditation on the state, people and power. Foregrounding fractured and unorthodox characters, these stories serve to intensify individual voices articulated in personal narratives addressing affective experiences, including sadness culminating in loneliness. Furthermore, the stories attest to socially constructed norms instigating the repudiation and criminalization of sexual deviants. Significantly, they add to the “cultural apparatus”—which C.W. Mills defines as “the source of Human Variety—of styles of living and of ways to die”—by questioning the nation’s ideological imperatives, including heterosexual norms, social insistence on mono-cultural marriages and state/family-endorsed medical intervention. Offering a critique of ideological state apparatus embedded within the power structures inherent to psychopathology, Koe’s Ministry of Moral Panic challenges the established ways of viewing “Others” who are ostensibly “mad”. Consequently, her stories mediate a broadening human experience, by calling for inclusivity amid the social rejection and insular treatment of afflicted subjects with alleged disorders. Full article
(This article belongs to the Special Issue Medical Narratives of Ill Health)
15 pages, 282 KiB  
Article
Spectral Sterility in Bucknill and Tuke’s A Manual of Psychological Medicine and Bulwer Lytton’s A Strange Story
by Natalie Mera Ford
Humanities 2019, 8(1), 59; https://doi.org/10.3390/h8010059 - 23 Mar 2019
Viewed by 2783
Abstract
This essay identifies and examines a narrative structure—here called the sterility plot—that is shown to recur in British mid-19th century psychiatric texts and imaginative literature engaging mental science. Treating physicians Bucknill and Tuke’s A Manual of Psychological Medicine and novelist Bulwer Lytton’s A [...] Read more.
This essay identifies and examines a narrative structure—here called the sterility plot—that is shown to recur in British mid-19th century psychiatric texts and imaginative literature engaging mental science. Treating physicians Bucknill and Tuke’s A Manual of Psychological Medicine and novelist Bulwer Lytton’s A Strange Story as influential case studies, it explores in particular the Gothic-styled spectralisation used by both Victorian medical and literary authors to characterize females whose mental disorders are depicted as bound with a short- or long-term inability to reproduce. The narratives thereby gender, pathologise, and suspensefully dramatise the plot trajectory of mentally ill patients’ clinical and fictional case histories, which, taken together, is argued to reveal mid-century medico-cultural anxieties about the health of Britain’s imperial future being threatened by potentially sterile Englishwomen. Full article
(This article belongs to the Special Issue Medical Narratives of Ill Health)
15 pages, 763 KiB  
Article
“Our Self-Undoing”: Christina Rossetti’s Literary and Somatic Expressions of Graves’ Disease
by Mary Arseneau and Emery Terrell
Humanities 2019, 8(1), 57; https://doi.org/10.3390/h8010057 - 21 Mar 2019
Cited by 1 | Viewed by 8871
Abstract
Victorian poet Christina Rossetti (1830–1894) was frequently troubled by poor health, and her mid-life episode of life-threatening illness (1870–1872) when she suffered from Graves’ disease provides an illuminating case study of the ways that illness can be reflected in poetry and prose. Rossetti, [...] Read more.
Victorian poet Christina Rossetti (1830–1894) was frequently troubled by poor health, and her mid-life episode of life-threatening illness (1870–1872) when she suffered from Graves’ disease provides an illuminating case study of the ways that illness can be reflected in poetry and prose. Rossetti, her family, and her doctors understood Graves’ disease as a heart condition; however, Rossetti’s writing reflects a different paradigm, presenting themes of self-attack and a divided self that uncannily parallel the modern understanding of Graves’ disease as autoimmune in nature. Interestingly, these creative representations reflect an understanding of this disease process that Rossetti family documents and the history of Victorian medicine demonstrate Rossetti could not have been aware of. When the crisis had passed, Rossetti’s writing began to include new rhetoric and imagery of self-acceptance and of suffering as a means of spiritual improvement. This essay explores the parallels between literary and somatic metaphors: Rossetti’s body and art are often simultaneously “saying” the same thing, the physical symptoms expressing somatically the same dynamic that is expressed in metaphor and narrative in Rossetti’s creative writing. Such a well-documented case history raises questions about how writing may be shaped by paradigms of illness that are not accessible to the conscious mind. Full article
(This article belongs to the Special Issue Medical Narratives of Ill Health)
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12 pages, 276 KiB  
Article
Body Fluids and Fluid Bodies: Trans-Corporeal Connections in Contemporary German Narratives of Illness
by Katja Herges
Humanities 2019, 8(1), 55; https://doi.org/10.3390/h8010055 - 12 Mar 2019
Cited by 2 | Viewed by 6250
Abstract
Medicine uses body fluids for the construction of medical knowledge in the laboratory and at the same time considers them as potentially infectious or dirty. In this model, bodies are in constant need of hygienic discipline if they are to adhere to the [...] Read more.
Medicine uses body fluids for the construction of medical knowledge in the laboratory and at the same time considers them as potentially infectious or dirty. In this model, bodies are in constant need of hygienic discipline if they are to adhere to the ideal of the closed and clean organism without leakage of fluids. In contrast, psychoanalytical feminist body theory by Julia Kristeva (1982), Elisabeth Grosz (1989) and Margrit Shildrick (1999) has deconstructed the abject body and its fluids in Western culture and medicine. While postmodern feminism has often focused on discourses about bodies and illness to the neglect of their materiality, more recently, material feminism has drawn particular attention to lived material bodies with fluid boundaries and evolving corporeal practices (Alaimo and Hekman 2007). Stacy Alaimo has developed a model of the trans-corporeal body that is connected with the environment through fluid boundaries and exchanges (2010, 2012). Influenced by these trends in feminist body theory, illness narratives, often based on autobiographical experiences of female patients or their caregivers, have increased in recent decades in the West (Lorde 1980; Mairs 1996; Stefan 2007; Schmidt 2009; Hustvedt 2010). Such narratives often describe explicitly the material and affective aspects of intimate bodily experiences. In this article, I analyze two German quest narratives of illness: Charlotte Roche’s pop novel Feuchtgebiete (2008) and Detlev Buck’s German-Cambodian film Same Same But Different (2010) that is based on the memoir Wohin Du auch gehst by German journalist Benjamin Prüfer (2007). In both narratives, the protagonists and their partners struggle in their search for love and identity with illness or injury in relation to body fluids, including hemorrhoids and HIV. I argue that Feuchtgebiete and Same Same But Different not only critique medical and cultural discourses on body (fluids) and sexuality but also foreground a feminist trans-corporeal concept of the body and of body fluids that is open to fluid identities and material connections with the (global) environment. At the same time, the conventional and sentimental ending of these quest narratives undermines the possibilities of the trans-corporeal body and its fluid exchanges. Full article
(This article belongs to the Special Issue Medical Narratives of Ill Health)
7 pages, 211 KiB  
Article
Prescribed Reading: Reflective Medical Narratives and the Rise of the Medimoir: An Interview with Adam Kay
by Katy Shaw
Humanities 2018, 7(4), 130; https://doi.org/10.3390/h7040130 - 7 Dec 2018
Cited by 1 | Viewed by 3578
Abstract
The 21st century has witnessed the rise of a genre of literature that has taken both the reading public and the publishing industry by storm. The ‘medimoir’—or medical memoir—is not in itself a new genre of writing, but has risen to prominence in [...] Read more.
The 21st century has witnessed the rise of a genre of literature that has taken both the reading public and the publishing industry by storm. The ‘medimoir’—or medical memoir—is not in itself a new genre of writing, but has risen to prominence in a contemporary British context of renewed focus on public health and wellbeing, a proliferation of professional confessionals in publishing, and debates about the future of the free-at-point-of-care British National Health Service (NHS). The most prolific medimoir published to date is Adam Kay’s This Is Going to Hurt (2017), a reflective diary that chronicles his time as a trainee gynaecologist in the NHS, and his subsequent exit from medical training in the face of growing personal and political pressures on his profession. This article contextualises and considers the rise of the medimoir, and examines why this genre of medical narrative has become such a critical, literary, and publishing success in the first two decades of the new millennium. Full article
(This article belongs to the Special Issue Medical Narratives of Ill Health)
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