Narratives of Health and Illness: Care and Power Within, Against, and Beyond Medicine

By Burcu Alkan, Ezgi Sarıtaş, Şima İmşir

The encounters of health and illness begin with narrative. In the expression of our ailment to another person, for instance, a medical professional, we tell a story of our embodied experience of being unwell. Even during the process of deciding to see a professional, we tell a story to ourselves in order to make sense of our unwellness, and once in dialogue with the medical professional, the act of narrating transforms into an information exchange. Anamnesis, which is the medical professional’s directed process of making sense and recording of our state of being unwell, carries our illness narrative to the realm of medical epistemology. In its most basic form, then, the embodied experience of health and illness also belongs to the realm of narrativity both as a personal experience and as a part of the medical epistemology in the form of diagnosis and treatment, the science of which is also a narrative in its descriptive basis.

The series “Narratives of Health and Illness: Care and Power Within, Against, and Beyond Medicine” explores diverse perspectives on health and illness by fostering interdisciplinary discussions around the concept of narrative through a critical engagement with the fields of medical and health humanities. It places a particular emphasis on the importance of personal narratives of marginalised individuals within the medical establishment by examining agency, discourse, and power structures. The series illuminates the intricate connections between narrative, health, and illness in their profound implications for community and healing, unspoken histories of violence and forgotten memories of illness, and critical revision of dominant historiographies. By addressing contemporary and historical challenges to modern medicine, we hope to encourage a critical dialogue about the underlying assumptions of prevailing narratives of health and illness.

Theoretical Framework

As postcolonial, Marxist, feminist, and queer critiques contribute to the repositioning of modern medical discourses, the field of medical humanities explores the ethical, cultural, historical, and social aspects of medicine and healthcare through the encounters between medicine and various disciplines such as literature, anthropology, history, sociology, and art history. While the field of medical humanities investigates the relationship between the human condition in its diverse complexities and the medical profession with its epistemology and institutions, the paralleling scholarship on health humanities emphasises the importance of all the other agents in the experience of illness. From paramedics, pharmacists, and nurses to the professional or non-professional caretakers and the patients as the primary caretakers of themselves, illness and healing have a crowded set of active agents that are involved in a multilayered, entangled process, reminding us that the intersections of medicine and humanities are far beyond the relationship between the doctors and the patients. Health humanities invite us to pay attention to the significant positions of all the stakeholders in healthcare (Crawford et al, 2020)

There are many forms of narrating health and illness within, against, and beyond medicine. The interdisciplinary fields of medical and health humanities and their related counterparts (narrative medicine, disability studies and the like) thus seek to build a bridge between the embodied experience of health and illness and its experiential impact on the person’s selfhood. An interdisciplinary approach thus allows us to understand issues around health and illness as they are defined by ideological discourses, whereby embodiment and embodied selves become manifest in their cultural entanglements. As scholarship on medical and health humanities reminds us, the discursive nature of bodies affects and constructs the experience of lived bodies. Bodies are constantly aestheticized, formulated, and reformulated. Literary and artistic representations, along with mythologies of illnesses, contribute to the making of discursive bodies while being actively influenced by the underlying ideological dynamics.

As Arthur Kleinmann reminds us in The Illness Narratives (1988), the differentiation between “disease” and “illness” is crucial in understanding how health issues cannot be separated from what is personal and political. It underlines the ways in which narrating illness and well-being is culturally contingent and highly subjective. Exploring the entanglements of narrative and medicine thus opens up a space for personal accounts of marginalised and medicalised subjects. Interlocking systems of oppression of race, gender, class, sexuality, and disability continue to reveal the multi-layered dynamics of medicine. For example, stories like Berlin-based journalist Mely Kıyak’s account of the cancer treatment of her father, who is a first-generation migrant, shed light on how narratives about illness and care are shaped by class, race, and gender. Father Kıyak’s animated stories about his Kurdish Alevi family contrast the daunting narrative of illness with that of a migrant family trying to navigate the cold, dehumanising bureaucracy of the German healthcare system. The narrative weaves together the threads of memory, storytelling, and embodiment, as well as the immense obstacles faced in confronting the overwhelming reality of cancer.

While “narrative medicine” (Charon, 2006) seeks to integrate narrative into medical practice and calls for a more inclusive and less mechanical and less dehumanising conception of wellbeing, the critical conversation around the concept of narrative medicine grows as well. In her review of one of the largest texts on medical humanities currently available, The Edinburgh Companion to the Critical Medical Humanities, Burcu Alkan (2018) writes that despite its very detailed and inclusive approach, the collection is “heavily weighted on contents and perspectives from a ‘western’ orientation, even when that orientation itself is being critiqued.” Moreover, other critics point out that narrative medicine relies on the mostly Western, middle-class notion of an autonomous self with the capacity to construct a coherent narrative of one’s experience. Given the increasing popularity of narratives presented as the “transcultural, transhistorical truths of the human experience” (Woods, 2011: 74), our Series also invites perspectives that explore how narrative and narrativity can have a disciplining effect on embodied experience and forms of self-expression outside the “western” formulations.

Furthermore, the very preconception of the reliability of narrative as a starting point is suspect and its foundational position needs to be taken with a grain of salt. Criticizing Arthur Frank’s famous formulation of types of illness narratives, Angela Woods (2011) presents a warning against the expectation of an archetypal narrative of a unified self who is “agentic, authentic, autonomous storyteller; as someone with unique insight into an essentially private and emotionally rich inner world.” Instead, turning to Galen Strawson’s “Against Narrativity,” she argues for the potential pitfalls of taking the relationship between personhood and narration for granted as the norm. She suggests that “scholars in the medical humanities can do more to denaturalise narrative, to acknowledge not only that different cultures (including familial, institutional and professional cultures) will tell and find meaningful different kinds of stories, but also, more fundamentally, that the attachment to and valorisation of narrativity is not universally shared.” According to Woods, when it comes to the relationship between illness, medicine, and narrativity, Strawson’s critique “challenges us to explore non-narrative ways of understanding and articulating the experience of illness and its impact on the self.” Narrativity, in this sense, is not disregarded but decentralised in order to make space for non-narrative forms of self-experience and self-expression.

Some Current Concerns

Our recent experience of unreliable and anti-scientific narratives about the COVID-19 pandemic being accepted as equally valid as research-based medical knowledge urges us to also examine critically the dangers of narrativism. The persuasive power of conspiracy theories often lies in their ability to construct a compelling and engaging story. As storytelling and narratives have become almost a prerequisite for something to sound real, authentic, and relatable, misinformation and conspiracy theories have exploited this trend to gain a following. The proliferation of anti-scientific narratives about COVID-19 has had an impact on healthcare disparities and structural inequalities, particularly for marginalised communities. With multiple narratives circulating, people from these communities found it difficult to know what information to trust and struggled to access accurate and reliable medical knowledge, which exacerbated the existing inequalities. The interplay of structural inequalities, such as socio-economic disparities, systemic sexism and racism, and unequal access to resources, shapes the circulation and reception of narratives. Consequently, these communities, already facing challenges in being heard, found that their experiences and perspectives around COVID-19 went largely unnoticed or dismissed. The space in which alternative and contradictory narratives about the pandemic have expanded through neoliberal information and disinformation circuits that are informed by populist politics. As the distinctions between beliefs, experiences, opinions and facts, and information and knowledge become increasingly blurred, it is exigent to approach the truth claims of narrative critically.

Examples such as these show the importance of the fields of medical and health humanities as both inter- and cross-disciplinary fields. Initiatives such as the German Network for Narrative Medicine, Asystole Essay Prize or the journal Re: Visit. Humanities & Medicine in Dialogue situate themselves in the tradition of narrative medicine and aim to enlarge the space for dialogue between medicine and humanities. A spatial approach additionally allows us to enhance dialogue between the local and the global, challenging the Anglo-American and continental European understandings. For instance, with a regional focus, International Conference on the Medical Humanities in the Middle East explores the increasing importance of humanities in medical research and practice beyond the Global North. Moreover, digital examples such as the British Medical Journals – Medical Humanities blog and podcast provide a space for scholarly, journalistic, and artistic discussion at the intersection of medicine and humanities.

In our Series on narratives of health and illness examined from the perspective of medical humanities, we seek to further these efforts by bringing together the discussions and expressive models of health and illness to explore the interdisciplinary encounters and entanglements in regard to agency, subjecthood, and the self both as personal and collective experience. We particularly welcome dialogues for and about the Global South, in dealing with the epistemic injustices underlying the narrative privilege which include health care systems, the medical profession, and related avenues of knowledge production. We would also like to invite contributions that challenge modern medicine’s own narrative from postcolonial, feminist, and queer historiography through questioning its imperial, racial, and gendered underpinnings.

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References

Alkan, Burcu. (2018). “Book Review: The Edinburgh Companion to the Critical Medical Humanities, edited by Anne Whitehead, et. al.” Dósis: medical humanities + social justice. 20 February 2018.

Charon, Rita. (2008). Narrative Medicine: Honoring the Stories of Illness. Oxford: Oxford University Press.

Crawford, P. et. al (2020). Introduction: Global health humanities and the rise of creative public health. Ed. P. Crawford, B. Brown ve A. Charise. The Routledge companion to health humanities, (1-7). Routledge.

Kıyak, Mely. (2013). Herr Kiyak dachte, jetzt fängt der schöne Teil des Lebens an. Frankfurt am Main: S. Fischer.

Kleinman, Arthur. (1988). The illness narratives: Suffering, healing and the human condition. Basic.

Whitehead, Anne, et. al. (eds). (2016). The Edinburgh Companion to the Critical Medical Humanities. Edinburgh: Edinburgh University Press.

Woods, Angela. (2011). “The limits of narrative: provocations for the medical humanities.” Medical Humanities. (37): 73-78. Doi:10.1136/medhum-2011-010045

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About the Authors

Burcu Alkan received her PhD at the University of Manchester. She is a fellow at the Forum Transregionale Studien, Berlin and an honorary research fellow at the University of Manchester. She is also an affiliated fellow of the Friedrich Schlegel Graduate School of Literary Studies at Freie University, Berlin. She is a literary scholar whose research interests are within the field of medical humanities with a particular focus on psychiatry. Her earlier work at EUME, “‘Freudism’ and modernity: transcultural impact of psychoanalysis in the modern Turkish novel,” has recently been published in the British Medical Journals – Medical Humanities.

Ezgi Sarıtaş holds a PhD in Gender Studies from Ankara University where she is currently working as a research assistant.  In the academic year 2021/2022 she was a EUME fellow at the Forum Transregionale Studien through a stipend from the Gerda Henkel Foundation and a visiting scholar at the Center for Transdisciplinary Gender Studies at Humboldt-Universität zu Berlin. Her research focuses on sexual modernities of the Ottoman Empire and the Early Turkish Republic, and the women’s rights and feminist movements in modern Turkey.

Şima İmşir holds a PhD from the University of Manchester. She is an assistant professor in Comparative Literature at Koç University in Istanbul.  Her monograph, Health, Literature and Women in Twentieth-Century Turkey: Bodies of Exception is published in 2023 as part of the Routledge Studies in Literature and Health Humanities series. Her teaching and research ranges from medical and health humanities, illness and literature to comparative modernisms, gender and postcolonial studies.

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Citation: Burcu Alkan; Ezgi Sarıtaş; Şima İmşir, Narratives of Health and Illness: Care and Power Within, Against, and Beyond Medicine, in: TRAFO – Blog for Transregional Research, 26.09.2023, https://trafo.hypotheses.org/48861

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