Tidsskrift for Forskning i Sygdom og Samfund

Text and Context

2020-06-02T07:10:57+02:00

Pain and Epiphany

2020-06-02T07:10:45+02:00

This article discusses the medieval English mystic Julian of Norwich’s autobiographical text Revelations of Divine Love and the significance of physical pain in Julian’s holy visions. Applying Anne H. Hawkins’ idea of the ‘myth of rebirth’, the article argues that although Julian’s work is not a narrative about illness as such, it may nevertheless be read as a medieval pathography or as a representative for a pre-stage genre of the modern pathography. Moreover, by applying theories on the phenomenology of pain, it discusses whether we may learn something today from the way in which medieval religious writers found a theological meaning in pain and whether painful experiences may help develop positive character traits.

Gothic Infections

2020-06-02T07:10:31+02:00

This article proposes, a reading of Jane Austen’s Northanger Abbey (1818) as a case study for discussing infectious literature, storytelling as therapy and the interconnectedness of Gothic methodologies and medical humanities. Northanger Abbey was written in a period when women’s reading habits was a contested topic, so I will provide a quick historical overview of the period and the problematic Gothic novel, which Northanger Abbey satirizes. Where previous research has focused on Catherine Morland, the protagonist and ‘misreader’ in this Gothic satire, this article will focus on Austen’s feminized hero, Henry Tilney, and read him in the role of a mesmeric healer. His goal is to cure Catherine of her obsession with Gothic novels, in order for her to fulfil the feminine ideal of the time. The mesmeric method is to produce a crisis in the patient, however, I will show how Henry’s plan fails and he inadvertently produces a crisis in himself, and forces him to realize the extent of his own ‘reading illness’. He is ‘infected’ by the masculine literary canon, which in his mind entails literary superiority over Catherine and his sister Eleanor.

Storytelling as therapy is a term that connects literature and trauma into a method of organizing experience. My analysis will focus on a selection of dialogue between the main characters and Henry’s monologues, to highlight where Austen’s hero is compelled to take narrative control as a way to control his own trauma; his troubled relationship with his father and the death of his mother.

Medicalized Literary Criticism in Fin de Siècle Norway

2020-06-02T07:07:46+02:00

Medicalized literary criticism was a widespread phenomenon across Europe in the decades surrounding the year 1900. The term describes varied practices of literary criticism founded on medical terminology and imagery. Critics with different professional backgrounds participated in this type of criticism, often by connecting medical analogies to established notions of fin de siècle decline and decadence. This article explores the proliferation and various uses of medicalized literary criticism in Norway in this period, including a case study of the literary criticism and discussion performed by two Norwegian psychiatrists and asylum doctors, Johan Scharffenberg and Henrik A. Th. Dedichen. I argue that these ‘medics-as-critics’ responded and contributed to the medicalized literary criticism and, by extension, to the establishment and prevalence of certain illness narratives in the public sphere.

The included outlaw

2020-06-02T07:10:19+02:00

This article presents an analysis of Amalie Skram’s 1895 novel Professor Hieronimus, with an emphasis on the seclusion aspect of this patient narrative. In the article, I give a close reading of the novel where I make use of insights from theorists from different disciplines, such as Shoshana Felman, Erving Goffman and Giorgio Agamben. The intent of the analysis, is to show how Skram manages to expose the rigid social categories that characterize the total institution in which the novel’s protagonist, Else Kant, claims to be wrongfully lodged. Through a critical assessment of the institutional hierarchy, both social and medical, Amalie Skram makes her novel well-suited for the type of interdisciplinary readings that in the last couples of decades have expanded and become more accessible, thanks in part to the emergence of the field of literature and medicine. This development grants us the opportunity to revisit the works of the Scandinavian literary canon with a fresh theoretical perspective, where fiction bears the potential to articulate aspects of the patient experience that has yet to be encapsulated by theory. This article shows how this phenomenon includes studies that are not limited to this interdisciplinary field alone, meaning that a complex patient narrative such as Skram’s Professor Hieronimus is accessible to a broader theoretical material as well.

Chaos Narrative and Experientiality in the Graphic Memoir

2020-06-02T07:10:07+02:00

This article contributes to research on illness narratives. It revisits Arthur Frank’s notion of the chaos narrative and argues in favour of supplementing it with the concept of tellability, and with Monika Fludernik and David Herman’s postclassical narratological approaches to the definition of narrative that foreground experientiality and what it’s like. Furthermore, it is argued that tellability is recuperated at the discourse level in literary representations of the chaos narrative. Frank argues, that the chaos narrative cannot be represented, but in this article, the case is made that literature can mimick the chaos. It is suggested, to label this particular chaos narrative: The mediated chaos narrative. This is demonstrated in a reading of Danish cartoonist Thomas H. Nøhr’s graphic memoir entitled Cirkus, which chronicles his encounter with the Danish health care system after suffering from stress, depression and severe burnout. The graphic memoir can experiment with the affordances of its multimodality to support the focus on narrative experientiality and to draw attention to issues of social justice. To render the chaos of the experience, Nøhr examines how the affordances of graphic memoir enables one to experiment with narratological building blocks such as the distinction between the narrating I and the experiencing I and with Gérard Genette’s three categories of time: order, duration, and frequency.

A typical patient with depression?

2020-06-02T07:09:54+02:00

In Denmark and internationally there is a push for enhanced collaboration between general practice and the psychiatric sector in the treatment of patients with depression. Linguistic and other qualitative studies into doctor-patient interaction have shown that general practitioners (GPs) and psychiatrists have different understandings of depression, which could hamper collaboration. The present study adds to linguistic research of the understanding of depression in the two sectors by examining healthcare communication in a context of representation: how doctors talk about their patients in interviews, rather than how they communicate with their patients in consultations. We demonstrate that the two groups of doctors have diverging representations of patients with depression. Most GPs present patients as individuals whose condition is explained by psychosocial circumstances; whereas psychiatrists predominantly present patients as categories. This difference is evidenced by how the two groups respond to the interviewer’s elicitation of patient stories. The GPs employ personal or specific narrative genres, whereas the psychiatrists use general narrative genres, indicating that the two groups occupy their own separate spaces within what is termed the narrative field. We also demonstrate that these different representations concur with variations in interactional patterns in the interview context, enhancing the gap between the professional identities of the two groups of doctors and, consequently, their conceptualizations of depression. The difference between the groups could be suggestive of cultural differences between the two sectors, caused by their different roles and working conditions in the health care system, which could pose a challenge to future cooperation.

Bridging Disciplines

2020-06-02T07:09:42+02:00

In 2016, the Norwegian government announced that public health and life mastery would be an overarching topic in all the subjects in high schools. Empathy may predict mental health issues, and fiction can encourage empathy. This article illustrates narrative empathy through the Norwegian novel Begynnelser (Beginnings) (2017) by Carl Frode Tiller. The aim is, to give a theoretical account of combined methods and insights from literary studies and narrative medicine in order to investigate how narrative empathy can emphasize mental health and life mastery in Norwegian literature when taught in high school. The article draws upon the thoughts of Bloom, Nussbaum, van Lissa et al. and Bryant on empathy and its meaning, Suzanne Keen’s theory of narrative empathy and pedagogical perspectives from the field of narrative medicine, represented by Rita Charon. Begynnelser connects to the concept of life mastery and through a close reading of the novel in a sociocultural context, students can learn to recognize important details in the text. Character identification and narrative situation are two main techniques in narrative empathy and in the novel by Tiller. This article reflects upon, how students can identify with the main character, in terms of both categorical and situational empathy, and how the narrative situation can show the reader why the character’s life unfolded as it did. The teacher must adjust the texts and the tasks to the particular group of students, and remember that teaching should not be a therapy session.

‘Human First’: Teaching close reading and creative writing to medical students

2020-06-02T07:09:29+02:00

The University of Southern Denmark has introduced a mandatory course in Narrative Medicine into the curriculum of undergraduate medical students. It is part of a trajectory called ‘Human First’, which aims to improve the students’ empathic abilities by teaching them narrative competencies to draw on in their future clinical encounters as medical doctors. Although, theoretical accounts seem to make a strong case for the utility and value of educational interventions, such as courses in narrative medicine or medical humanities, there has been a lack of empirical studies providing evidence to support such accounts – especially those focusing on the long-term effects and impact on patient care. Our systematic literature search and review of empirical studies regarding the effects of teaching close reading of fictional texts and creative writing to medical and health care students, tentatively confirmed previous indications of positive effects. Larger, multi-site and more rigorous studies that assess the long-term impacts of these educational interventions and adjust for local variations are, however, still in short supply. Finally, we present critical reflections on whether empathy and similar phenomena are at all measurable and discuss the possibility of meaningfully evaluating the utility of curricular interventions such as narrative medicine courses.

“I’m sure that there is something healing in the writing process”

2020-06-02T07:09:16+02:00

Why do we read illness stories?

2020-06-02T07:09:02+02:00

Why do we read pathographies and why have they become so popular? These are the key questions in our paper. In answering these, we will introduce and discuss Rita Felski’s The Uses of Literature (2008) in connection to the American bestseller and Pulitzer prize finalist pathography When Breath Becomes Air (2016) by Paul Kalanithi.

We chose Kalanithi’s book because we consider it in many ways typical of the pathographical genre with its first-person narrator, the frequent expression of shock, its reflections on meaning of the illness and the focus on daily life. Rita Felski’s The uses of literature reflects by means of the four concepts knowledge, recognition, shock and enchantment upon what makes us want to read a certain book or genre. However, when working with Kalanithi´s novel we soon found that Felski´s four modes were not only meaning-making for enlightening the question on why we as readers turn to this book. We soon also found that recognition, enchantment, knowledge and shock were concepts that were relevant used in connection with Kalanithi´s own experience of becoming ill and being a patient. The concepts, therefore, seem most useful for reflections on both the reader’s response and the author drives of the pathography genre.

The Writer as a Patient with a Brain Tumour

2020-06-02T07:08:49+02:00

This article main concern is how professional authors and intellectuals develop illness narratives addressing the experience of having a brain tumour, and how this condition resorts to specific narratological features. Unlike pathographies written by laypersons, autobiographical accounts of illness developed by writers, and intellectuals create a narrative subjectivity that is specifically linked to their professional status rather than to their patient status which is simultaneous with the narrative time. In this article, we analyse two autobiographical novels, addressing the experiences of two European authors and intellectuals suffering from a brain tumour: A Journey Round My Skull (1939[1937]) by Frigyes Karinthy and Until Further Notice, I Am Alive (2012) by Tom Lubbock. These narratives on illness processes related to brain tumours are a place where writers resist the main symptoms and outcomes of this specific disease that, while affecting their cognitive capacities, seem to deprive them of their self-image as writers. Hence, these writings are based on the realignment of their past and present identities (Rimmon-Kenan, 2002: 15-18) always in connection with their images as authors. The comparative analysis presented here is intended as a contribution from the field of literary studies to the understanding of subjectivity in patients, whose narratives are not written to seek cure or to search for a cause or meaning for the disease, but to fight the loss of the writer-patient creative identity and ‘ipseity’ (Derrida, 2009).

The patient as reader

2020-06-02T07:08:36+02:00

Illness narratives can be said to reclaim the voice of the patient, and while they draw much of their strength from a position of experience and loss, they are also highly mediated and constructed narratives. This article studies, how these textual self-representations are formed in relation to intertexts, and how the authors explicitly use other literary texts and enter into a dialogue with them.

Two pathographies are studied, Anders Paulrud’s Fjärilen i min hjärna (“The Butterfly in my Brain”, 2008) and Agneta Klingspor’s Stängt pga hälsosjäl (“Closed due to health reasons”, 2010, and their specific strategies in incorporating other literary texts: Paulrud through assemblage and community, and Klingspor through resistance and critique, especially of narratives the author feels she is supposed to appreciate. In the end, both authors seem to share a view about literature as potentially helpful and meaningful in conveying experiences and even point to a healing potential in narratives and literature.

Living with illness

2020-06-02T07:08:24+02:00

In this paper, I wish to discuss how people living with severe illness at home depict their lives either in a family setting or alone. Roland Barthes writes in Comment vivre ensemble (1977) about individual life lived in a variety of collective situations in different settings, and calls this idiorrhythmia. One of the settings Barthes studies is the sanatorium, where the figures of Autarky and Clôture, implying living together and living alone, are made relevant. I will use the concept of idiorrhythmia, to discuss ill people living at home either alone or together with relatives. The discussion is based on four contemporary Scandinavian novels: Lars Gustafsson’s The Death of a Beekeeper (1978), Ragnar Hovland’s A Winter’s Journey (2001), Gunnhild Corwin’s Ida’s Dance (2005) and Ellisiv Stifoss-Hanssen’s Let me sleep until this is just a dream (2014). These novels describe young and old adults suffering from cancer, staying at home and the challenges and strategies involved in living together or alone while experiencing severe illness.

Doing Illness

2020-06-02T07:08:11+02:00

Through three case studies, the article explores how digital media have been used in recent years to depict and comprehend experiences of cancer. It first investigates the illness blog, specifically Swedish journalist and musician Kristian Gidlund’s immensely popular blog In My Body, in which he, from 2011 to 2013, shared the narrative of his struggle with an aggressive, incurable, and ultimately deadly stomach cancer. It continues by discussing Italian engineer, artist, and hacker Salvatore Iaconesi’s digital open-source project La Cura – The Cure (2012), which has great relevance from both the digital and the medical humanities perspectives in the way Iaconesi uses his personal narrative of brain cancer to encourage people to join his struggle to find a cure. Finally, it analyzes the American couple Ryan and Amy Green’s videogame That Dragon, Cancer (2016). A game differing significantly from video and computer games in general and from other games taking cancer as their subject by letting the player enter the role of caregiver to a small child dying of cancer. Expanding on Lisa Diedrich’s theoretical concept of “doing illness”, the article emphasizes the performative dimension of narrating illness in digital media, considering how these authors and creators negotiate with narrative, cultural, and medial scripts when portraying their cancer experiences. It highlights the interactive and participatory dimension of doing illness in digital media, by exploring how the blog, open-source project, and videogame both invite and limit the audience’s opportunities to interact and participate with the illness narrative conveyed.

Cancer narratives on social media as ‘small stories’

2020-06-02T07:07:58+02:00

Cancer narratives shared on social media platforms have received increased academic interest over the last decade but often without sufficiently acknowledging the media specific narrative affordances of these platforms. The article will address this problem, by first presenting a ‘small stories’ approach to studying illness narrative on social media and then putting the approach to work in a case study of a Danish cancer patient’s Instagram profile (@jannelivsnyder66). The paper argues, that the storytelling practices on the profile can be analytically approached by focusing on the interplay between three co-constitutive levels of interaction: 1) a level of the desired illness narrative and position that the narrator, influenced by available cultural discourses and interaction with followers, hopes to be able to tell; 2) a level of sharing everyday posts, which can either support or disturb the desired narrative; 3) a level of follower responses, where relations between the desired narrative and singular posts are monitored through processes of liking and commenting. Followers of social media cancer narratives should in light of this not be understood as an audience witnessing an individual telling his/her “own” story, but rather as crucial contributors to the social interaction and co-creation of desired narratives, subject positions, narrative progress and tellability. In conclusion, the article thus stresses that cancer storytelling on social media, despite the strong biological connection of the disease to an individual body, emerges through inherently social processes of reading, liking, commenting, monitoring and co-deciding narrative practices.