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Strategic Suffering: Illness Narratives as Social Empowerment among Mexican Cancer Patients

Cheryl Mattingly and Linda C. Garro

in Narrative and the Cultural Construction of Illness and Healing

This chapter views illness narratives as guides to present and future actions, specifically through the refashioning of social roles in local cultural worlds. It draws on fieldwork with Mexican ... More

This chapter views illness narratives as guides to present and future actions, specifically through the refashioning of social roles in local cultural worlds. It draws on fieldwork with Mexican cancer patients and studies the illness narratives of two Mexican cancer patients who have had surgery where part of their reproductive systems were removed. This chapter connects the strategic construction of illness narratives with the reconstruction of gender roles, a process that effectively transformed suffering into a social asset, and role destruction into a chance for personal empowerment.Less

Illness as Many Narratives

Stella Bolaki

in Illness as Many Narratives: "Arts, Medicine and Culture"

The introduction provides an overview of illness narratives and illness narrative scholarship, focusing on the contested territory of narrative. Illness narratives, in the first wave of medical ... More

The introduction provides an overview of illness narratives and illness narrative scholarship, focusing on the contested territory of narrative. Illness narratives, in the first wave of medical humanities, are restricted to narratives of a certain type: the linear, progressive, story bound by the context of biomedicine and the doctor-patient encounter, which largely serve the needs of medicine. Building on the work of literary/cultural studies critics and medical humanities scholars who have challenged the instrumental direction of the medical humanities, the Introduction suggests that it is a timely moment to expand the field’s scope and existing approaches so as to make it more critical. Arguing for the inclusion of different arts and media and putting forward the idea of ‘critical interloping,’ it calls for more cross-fertilisation between contemporary arts and media practices/scholarship on the one hand and the fields of illness narratives and the medical humanities on the other. The final section of the Introduction describes the book’s chapter structure. It shows how the selected case studies open up the illness narrative category while also addressing some of its limits and conservative assumptions from within; that is, through the works’ own generic multiplicity and mixed-media nature.Less

With Life in One's Lap: The Story of an Eye/I (or Two)

Cheryl Mattingly and Linda C. Garro

in Narrative and the Cultural Construction of Illness and Healing

This chapter interweaves autobiography with material from the author's ethnographic research in order to examine the complicated relationship between illness narratives, illness experience, and ... More

This chapter interweaves autobiography with material from the author's ethnographic research in order to examine the complicated relationship between illness narratives, illness experience, and personal identity. The author uses the stories to comment about the surprises of illness and how it speaks to a person's sense of self and to raise a series of critical questions about narrative theory. It also critiques the predominance of the “I” in many autobiographical and life story accounts of illness.Less

Caring for Patients at the End of Life: Honoring the Patient's Story

Christina M. Puchalski

in A Time for Listening and Caring: Spirituality and the Care of the Chronically Ill and Dying

This chapter discusses the importance of storytelling and narratives in honoring the patient's story while providing end-of-life care. It explains that an illness narrative portrays signs, symptoms, ... More

This chapter discusses the importance of storytelling and narratives in honoring the patient's story while providing end-of-life care. It explains that an illness narrative portrays signs, symptoms, and treatment aspects as well as various ways of suffering, and that it helps the caregiver to interact effectively with a suffering patient. The chapter discusses the use of stories in the education of caregivers, the teaching of medical students to practice patient narrative, and the role of the caregiver in the narrative.Less

Cultural Knowledge as Resource in Illness Narratives: Remembering through Accounts of Illness

Cheryl Mattingly and Linda C. Garro

in Narrative and the Cultural Construction of Illness and Healing

This chapter explains how the interplay of personal experience and cultural knowledge shapes illness narratives. It examines how cultural knowledge can become a resource in guiding remembering about ... More

This chapter explains how the interplay of personal experience and cultural knowledge shapes illness narratives. It examines how cultural knowledge can become a resource in guiding remembering about the past and shows how individual accounts draw strength and supposed truth as they are found within accounts of a collective past. This chapter is grounded in cognitive theories of both memory and narrative.Less

How Can I Tell?: Professing Hypochondria

Catherine Belling

in A Condition of Doubt: The Meanings of Hypochondria

The final three chapter of the book consider the role of narrative in the patient's experience of hypochondria. Analysing a range of life-writing written by self-identified hypochondriacs, this ... More

The final three chapter of the book consider the role of narrative in the patient's experience of hypochondria. Analysing a range of life-writing written by self-identified hypochondriacs, this chapter suggests that while narrativity is inherent in hypochondria, the condition also challenges the conventions of pathography, both because no “real” disease is found and because the patient-narrator is considered to lack credibility. What, then, in hypochondria, constitutes a “good story”?Less

Introduction

Frederick H. White

in Degeneration, decadence and disease in the Russian fin de siècle: Neurasthenia in the life and work of Leonid Andreev

This chapter introduces the various scientific and popular lines of discourse that influenced and informed Leonid Andreev’s sense of self and his relationship with neurasthenia. Of equal importance ... More

This chapter introduces the various scientific and popular lines of discourse that influenced and informed Leonid Andreev’s sense of self and his relationship with neurasthenia. Of equal importance is the impact that Andreev had as a major contributor to the popular discourse of pathology in the Russian fin de siècle. His illness experience as an acute neurasthenic was informed by numerous medical and popular factors that were ultimately distilled into his literary works, leading to his unprecedented success and popularity. By re-examining Andreev and a nation’s anxiety over its own perceived moral corruption and physical devolution, Andreev once again comes into focus as one of the leading literary voices of his age.Less

Be Informed: Medical Knowledge

Catherine Belling

in A Condition of Doubt: The Meanings of Hypochondria

The first chapter of the section on hypochondria as a cultural condition examines the effects of increasing popular access to medical information, especially through the medium of the internet. It ... More

The first chapter of the section on hypochondria as a cultural condition examines the effects of increasing popular access to medical information, especially through the medium of the internet. It considers the accumulation of medical information (in the formal medical literature, in popular reference sites, in advertising, in patient narratives) by hypochondriacal readers and their application of it to themselves as their own quasi-patients, and the implications of this complex kind of health literacy on the doctor-patient relationship.Less

Loss and rebellion

Frederick H. White

in Degeneration, decadence and disease in the Russian fin de siècle: Neurasthenia in the life and work of Leonid Andreev

In June 1904, newspaper Courier ceased to exist after a prolonged period of financial difficulties. This meant that Andreev now had to earn his livelihood solely as a creative writer. The heady times ... More

In June 1904, newspaper Courier ceased to exist after a prolonged period of financial difficulties. This meant that Andreev now had to earn his livelihood solely as a creative writer. The heady times of his initial success gave way to a period of significant political upheaval and personal loss. Andreev’s life was turned upside down by the deaths of both his youngest sister and his wife, while his works began to reflect his own political ruminations, if not vacillations. This chapter concentrates on the ways in which madness interacts with Andreev’s personal and fictional narratives of loss and rebellion. The central focus is the period 1904–08, although many of the sections in this chapter are organized thematically rather than in strict chronological order.Less

Illness narratives, meaning making, and epistemic injustice in research at the end of life

Yasmin Gunaratnam

in The Patient's Wish to Die: Research, Ethics, and Palliative Care

This chapter is about narrative approaches to end-of-life wishes. Following an initial discussion of last wishes and plans as affected by cultural differences, pain, and the biochemistry of advanced ... More

This chapter is about narrative approaches to end-of-life wishes. Following an initial discussion of last wishes and plans as affected by cultural differences, pain, and the biochemistry of advanced disease, the chapter covers three main areas. First, it provides a general flavour of the narrative dimensions of illness and care through key themes from the literature on illness narratives. Second, it turns to definitions and distinctions that have been drawn between the terms ‘narrative’ and ‘story’, focusing upon speech act theory as one approach to understanding the complex relationships between what is said, its meaning, and effects. Finally, the chapter draw upon ideas from the palliative care concept of ‘total pain’ to highlight the limits of empathic understanding in situations of suffering and the importance of recognizing how narrative research with dying people can affect the researcher.Less

Mothers as Pupils in Health Care Settings

Robert A. Levine, Sarah E. Levine, Beatrice Schnell-Anzola, Meredith L. Rowe, and Emily Dexter

in Literacy and Mothering: How Women’s Schooling Changes the Lives of the World's Children

In this chapter the literacy-mediation hypothesis – that the acquisition of academic literacy influences health literacy and health navigation skills – is tested in the four-country data and the ... More

In this chapter the literacy-mediation hypothesis – that the acquisition of academic literacy influences health literacy and health navigation skills – is tested in the four-country data and the UNICEF Nepal survey. The hypothesis is supported by multivariate analyses, not only in regard to the comprehension of printed health messages but also in the comprehension of radio messages and in producing an intelligible illness narrative – though both of the latter are oral communication tasks. These findings suggest that literacy instruction in school promotes a woman’s health literacy and navigation skills beyond those that involve reading and writing, and point to a more general ability to communicate in bureaucratic settings like schools and clinics and to a tendency to accept the authority of health professionals. The UNICEF Nepal survey shows health knowledge and media exposure to be involved in the causal sequence.Less

Memoir

in The Power of the Between: An Anthropological Odyssey

This chapter presents the author's thoughts about memoirs. Writing a memoir is something that many anthropologists may want to pursue at some point in their careers. Memoir is important because as a ... More

This chapter presents the author's thoughts about memoirs. Writing a memoir is something that many anthropologists may want to pursue at some point in their careers. Memoir is important because as a genre, it can extend substantially the readership for things ethnographic. However, the memoir is also a very tricky enterprise. In far too many cases, the author is so focused on recounting, sometimes in excruciating detail, the intricacies of her or his life that the text can become a tedious exercise in solipsism. Illness narratives are among the most popular memoirs. Many of these works have merit, for they connect the experience of the author to thousands of people in relatively similar circumstances. The greatest strength of these memoirs is their penchant for storytelling. Their great weakness is a paucity of insight.Less

The Body as Biography

Emily Heavey

in Life and Narrative: The Risks and Responsibilities of Storying Experience

The idea that lives and selves are constructed in narrative has become almost universally accepted among narrative analysts. Particular attention has been paid to how narratives construct the self in ... More

The idea that lives and selves are constructed in narrative has become almost universally accepted among narrative analysts. Particular attention has been paid to how narratives construct the self in response to disruptive life events, such as illness. However, the body is often neglected or treated as incidental in such studies, even studies that analyze the narratives of life events that are as thoroughly embodied as illness. This chapter argues that the body itself can be understood as a narrative construction, as well as a physical reality. Indeed, the narrative construction of the body can be an important element of narrative identity construction, and vice versa. Understanding how body biographies are told, and how they construct individuals’ bodies, therefore, has important implications for our understanding of bodies, our understanding of identities and identity construction, and the scope of narrative inquiry.Less

Dynamic Embodiment and the Graphic Illness Narrative Genre

Elisabeth El Refaie

in Visual Metaphor and Embodiment in Graphic Illness Narratives

This chapter argues that some genres are more centrally concerned with the body than others, and that each genre exploits the affordances of its modes and media in unique ways. Thus, graphic illness ... More

This chapter argues that some genres are more centrally concerned with the body than others, and that each genre exploits the affordances of its modes and media in unique ways. Thus, graphic illness narratives are characterized not only by their focus on the physical, social, and emotional impacts of disease, but also by their innovative use of the tools and materials of the comics medium, including inherent tensions between words and images, and between sequence and layout. These features impose particular constraints and offer unique opportunities to artists, influencing their choice of metaphors and the shape these metaphors take. For example, in many such works the expected direction of metaphorical transfer from sensorimotor experience to more abstract concepts is reversed, as the diseased body and the nature of visual perception are foregrounded in the artist’s consciousness.Less

The daily drama of the body

Ann Oakley

in Fracture: Adventures of a broken body

‘Illness narratives’ are the stories people tell about the human experience of illness and suffering. Because the people inside sick bodies usually don't experience themselves as sick, a distancing ... More

‘Illness narratives’ are the stories people tell about the human experience of illness and suffering. Because the people inside sick bodies usually don't experience themselves as sick, a distancing occurs: they observe the behaviour of their bodies, and construct accounts of this behaviour. The body's entertainment is about creating reality. The chapter argues that people should be experts on their own bodies because such personal knowledge is especially necessary in chronic illness. Also, the profound iatrogenic effect of the perfect body project is a sickness of its own. This chapter concludes by suggesting that a way of putting illness in its place is to explore it in order to learn more about the human condition.Less

Artists’ Books in the Medical Community

Stella Bolaki

in Illness as Many Narratives: "Arts, Medicine and Culture"

This chapter focuses on a medium that is rarely discussed in relation to the medical humanities by examining the artists’ books of American artist and cancer patient Martha A. Hall. Hall created her ... More

This chapter focuses on a medium that is rarely discussed in relation to the medical humanities by examining the artists’ books of American artist and cancer patient Martha A. Hall. Hall created her books in response to her initial diagnosis of breast cancer in 1989 and the effects of later recurrences until her death in 2003. While art historians and book critics typically describe the handling of artists’ books in terms of a powerful aesthetic experience that emphasises the sensuous pleasures of the book, this chapter shows how the interactive form and content of Hall’s books place a more radical set of demands upon readers. The analysis particularly concentrates on the complex nature of touching and the ethics of responsibility that it generates. It also considers the challenges Hall’s work poses to mainstream breast cancer and the provocations of her artists’ books for medical communities, to whom she attached special importance. The chapter concludes by showing how her work, and artists’ books more broadly, can create spaces for unpredictable and unfinished encounters that can reinvigorate models of empathy in medical education.Less

Narrative Refashioning and Illness: Doctor–Patient Encounters in Siri Hustvedt’s The Shaking Woman

Jarmila Mildorf

in Life and Narrative: The Risks and Responsibilities of Storying Experience

This chapter offers a reading of parts of Siri Hustvedt’s autobiographical book, The Shaking Woman, an illness narrative that takes the shape of an intellectual quest for knowledge. It focuses on two ... More

This chapter offers a reading of parts of Siri Hustvedt’s autobiographical book, The Shaking Woman, an illness narrative that takes the shape of an intellectual quest for knowledge. It focuses on two episodes depicting medical consultations and demonstrates how the novelist creatively writes about moments when her self-narration was dismissed or undermined by the medical professionals she encountered. By using distancing strategies which involve the literary techniques of parody, irony, caricature, and metaphor, Hustvedt manages to subject medical discourse to her own (artistic) narrative and to refashion her ill self. On a more abstract level, the paper raises further questions concerning narrative and doctor-patient interaction, as well as narrative and the autobiographical act of verbalizing one’s life story, with emphasis on the literary quality such autobiographical writing may take.Less