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Illness narratives invite practitioners to understand how biomedical and traditional health information is incorporated, integrated, or otherwise internalized into a patient's own sense of self and social identity. Such narratives also reveal cultural values, underlying patterns in society, and the overall life context of the narrator. Most illness narratives have been examined from the perspective of European-derived genres and literary theory, even though theorists from other parts of the globe have developed locally relevant literary theories. Further, illness narratives typically examine only the experience of illness through acute or chronic suffering (and potential recovery). The advent of biomedical disease prevention methods like post- and pre-exposure prophylaxis (PEP and PrEP) for HIV, which require daily pill consumption or regular injections, complicates the notion of an illness narrative by including illness prevention in narrative accounts. This paper has two aims. First, we aim to rectify the Eurocentrism of existing illness narrative theory by incorporating insights from African literary theorists; second, we complicate the category by examining prevention narratives as a subset of illness narratives. We do this by investigating several narratives of HIV prevention from informants enrolled in an HIV prevention trial in Kenya and Uganda in 2022.

The promise of genomic medicine lies in the opportunity to improve health outcomes via a personalized approach to management, grounded in genetic and genomic variation unique to an individual. However, disparities and inequities mar this remarkable landscape of genomic innovation. Prior efforts to understand these inequities have focused on populations for which genetic testing is relatively protocolized or where test utility varies greatly by ancestry groups, where equitable outcomes are more clearly defined. We therefore consider the current landscape of rare disease genomics, in which diagnostic approaches vary widely and utility remains to be fully understood, and suggest a path forward: how ecosocial theory may be used to guide novel equity‐focused initiatives that incorporate illness narratives to improve population health. We present examples of narrative medicine in rare disease and reimagine the role this discipline may play in genomic sequencing studies, toward incorporation of the unique illness narrative into clinical genetics and genomics practice. Approaches that broaden the definitions of disease and of outcomes of interest will force the field to grapple with its racist history and begin to advance health equity and promote justice so that genomic medicine may truly deliver on its promise. [ABSTRACT FROM AUTHOR]

Introduction; to the best of the authors knowledge, no past research has established how illness narrative master plots are expressed initially and then if and how they change longitudinally following musculoskeletal trauma. The aim of the present research was to consider how specific master plots were expressed, interact, and change across time following musculoskeletal trauma. Methods: A narrative analysis was undertaken that included individuals who had experienced a musculoskeletal traumatic injury. Individuals were included if they were an inpatient within 4 weeks of the first interview, had mental capacity to participate, and were able to communicate in English. Three interviews were undertaken (within 4 weeks of injury, then at 6- and 12-months post-injury). A 5-stage categorical form—type narrative analysis was performed. Results: Twelve individuals (49.9 ± 17.5 years; 7 male, 5 female) completed interviews at three time points following the trauma event (<4 weeks, 6 months, and 12 months). Three main narrative master plots appeared to work together to facilitate a positive accommodation of the trauma event into the individual's life. These included the resumption narrative, the activity narrative, and the quest narrative. Finally, less often regressive narratives were identified, although these narratives were, at times, actively avoided. Discussion: The current results provide important consideration for how narratives are used within clinical practice, in particular the value of how these three narratives could be accessed and promoted. [ABSTRACT FROM AUTHOR]

Abstract Background It has been advocated that the development of medical school curricula must be informed by students, doctors in training, educators, employers, other health and social care professionals and patients, families and carers. Patients are widely employed to teach clinical and interpersonal skills, and while recognised as crucial in health education, they have mostly been offered a passive role. We assessed the impact of patients contributing personal illness narratives in the master curriculum of allied health care professionals on students’ learning experiences. Methods We designed a module (Patient and Society) for a master’s degree programme in Health Sciences at the University of Southern Denmark in collaboration with six patients. The patients contributed to the teaching by sharing and discussing their personal illness narrative. At the end of the module, as part of the exam, we asked the students to reflect on the patients’ contribution to the module and how this affected their learning experiences. The 500-word exam responses of 29 students were analysed, in collaboration with six patients, using thematic analysis. Results Including patients’ illness narratives lifted students’ academic learning, and their personal and professional development. The stories brought theoretical concepts to life; it helped the students to obtain, retain, and apply academic knowledge. Actively and uninterrupted listening to patients’ illness experiences promoted empathy and critical reflection on clinical practice. Faced with the impact of a disease on a person’s life, seeing the healthcare system through a patient’s lens made students reflect critically on the medical positivist model ruling the health care system focused on just fixing the medical problem with very little room for the illness experience. Conclusion Our analyses support previous findings indicating that patient narratives are a powerful tool to achieve academic and professional development. Working with patients in health education has the potential to work towards a more inclusive epistemological stance in the health care system and health research.

Background: It has been advocated that the development of medical school curricula must be informed by students, doctors in training, educators, employers, other health and social care professionals and patients, families and carers. Patients are widely employed to teach clinical and interpersonal skills, and while recognised as crucial in health education, they have mostly been offered a passive role. We assessed the impact of patients contributing personal illness narratives in the master curriculum of allied health care professionals on students' learning experiences. Methods: We designed a module (Patient and Society) for a master's degree programme in Health Sciences at the University of Southern Denmark in collaboration with six patients. The patients contributed to the teaching by sharing and discussing their personal illness narrative. At the end of the module, as part of the exam, we asked the students to reflect on the patients' contribution to the module and how this affected their learning experiences. The 500-word exam responses of 29 students were analysed, in collaboration with six patients, using thematic analysis. Results: Including patients' illness narratives lifted students' academic learning, and their personal and professional development. The stories brought theoretical concepts to life; it helped the students to obtain, retain, and apply academic knowledge. Actively and uninterrupted listening to patients' illness experiences promoted empathy and critical reflection on clinical practice. Faced with the impact of a disease on a person's life, seeing the healthcare system through a patient's lens made students reflect critically on the medical positivist model ruling the health care system focused on just fixing the medical problem with very little room for the illness experience. Conclusion: Our analyses support previous findings indicating that patient narratives are a powerful tool to achieve academic and professional development. Working with patients in health education has the potential to work towards a more inclusive epistemological stance in the health care system and health research. [ABSTRACT FROM AUTHOR]

This study examines the recovery experiences of students at a university college in the Netherlands during an outbreak of COVID-19 in the spring of 2022. University policy was based on the conception of COVID-19 as short-term, with a defined recovery timeline. Despite perceptions that young people face lower risks for prolonged recovery, our study reveals a different reality.Among 36 students with COVID-19, twelve experienced symptoms for over one month. Ten semi-structured interviews revealed heterogenous recovery experiences: good, mild, moderate, and difficult. We also explored how diverse recoveries interacted with academic work. Lingering symptoms ranged from smell loss to brain fog and prolonged fatigue.The unpredictability of recovery made it difficult to attribute symptoms to COVID-19 or academic work pressure. In the context of expectations to resume academic work, some students failed to recognise their ongoing struggles. An absence of conversation regarding recovery in a demanding academic environment renders diverse recovery experiences invisible. Our findings emphasise the need for a broader conceptualisation of COVID-19 recovery amongst young people and call for further research exploring the interaction between students’ illness experiences and the fast-paced academic environment.

The portrayal of ailing characters in literature demonstrates that as these characters articulate their experiences of the disease, they employ cognitive mechanisms facilitated by paradoxical metaphors. This paper aims to examine the existence of paradoxical metaphors in the selected illness novel, Maryam Awaisu's Burning Bright. Furthermore, it investigates how the ailing character in the illness novel, employs these paradoxical metaphors as a form of religiotherapy to support and bolster her mental wellbeing. Jacques Derrida's Deconstruction and Sigmund Freud's Psychoanalytic theories are used for the critical analysis of the selected illness novel. Recognising and valuing the expressions of ailing individuals holds the potential of enhancing effective communication within medical situations. [ABSTRACT FROM AUTHOR]

The term diagnostic odyssey refers to patients' difficult journeys to obtain a diagnosis, particular in the case of rare or contested illnesses. This paper describes the diagnostic odyssey of patients with New Daily Persistent Headache (NDPH), a rare headache disorder notable for its persistence, resistance to treatment, and impact on quality of life. Studies conducted to date have taken a medical perspective focusing on characterizing NDPH as opposed to patient construction of the illness experience. This study fills that gap by analyzing 17 semi-structured interviews with participants with NDPH, using the McGill Illness Narrative Interview (MINI). Their narratives detail significant moments of headache onset and when they realized that their condition was called NDPH. Thematic analysis identified themes including relief and devastation upon receiving a diagnosis, the importance of headache as singular, negative and positive experiences with providers, the impact of online support group, choosing friends with complex medical conditions, the cyclical nature of treatment, and maintaining hope. Participants utilized social media and social networks to navigate their illness experiences. Numerous participants also reported negative experiences with providers, which created opportunities for reinforcing identity through social networks, and cyclical interactions when medicalization of their condition was necessary for access to treatments and services. This paper advances narrative bioethics scholarship on diagnostic odysseys by arguing that social networks and cyclical engagement with medical systems support patient autonomy in terms of decision-making around uncertain treatments. It concludes with implications for physician-patient relationships that create epistemic justice for all patients, including patients with NDPH. [ABSTRACT FROM AUTHOR]

Introduction; to the best of the authors knowledge, no past research has established how illness narrative master plots are expressed initially and then if and how they change longitudinally following musculoskeletal trauma. The aim of the present research was to consider how specific master plots were expressed, interact, and change across time following musculoskeletal trauma. Methods: A narrative analysis was undertaken that included individuals who had experienced a musculoskeletal traumatic injury. Individuals were included if they were an inpatient within 4 weeks of the first interview, had mental capacity to participate, and were able to communicate in English. Three interviews were undertaken (within 4 weeks of injury, then at 6- and 12-months post-injury). A 5-stage categorical form—type narrative analysis was performed. Results: Twelve individuals (49.9 ± 17.5 years; 7 male, 5 female) completed interviews at three time points following the trauma event (

In this paper, we explore how existential aspects of being diagnosed and living with cancer are shared in stories that are publicly communicated online. Through a narrative analysis of online texts and blogs, we explore how people deal with their cancer experiences, how cultural norms about illness are expressed in their stories and why they write and publish their stories online. We found that the writers described cancer diagnosis as a defining moment in their lives. They portrayed it as a crisis that was followed by unpredictability, doubt, grief and loss, fitting with the term 'existential uncertainty'. Writing and sharing their stories online, connecting with others and staying positive were ways of dealing with this uncertainty. These naturally occurring data offer insights into phenomena that are not easily accessed in a clinical setting; moreover, they provide unique insights into the cultural norms in which online illness narratives are embedded. [ABSTRACT FROM AUTHOR]

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This study examines the recovery experiences of students at a university college in the Netherlands during an outbreak of COVID-19 in the spring of 2022. University policy was based on the conception of COVID-19 as short-term, with a defined recovery timeline. Despite perceptions that young people face lower risks for prolonged recovery, our study reveals a different reality. Among 36 students with COVID-19, twelve experienced symptoms for over one month. Ten semi-structured interviews revealed heterogenous recovery experiences: good, mild, moderate, and difficult. We also explored how diverse recoveries interacted with academic work. Lingering symptoms ranged from smell loss to brain fog and prolonged fatigue. The unpredictability of recovery made it difficult to attribute symptoms to COVID-19 or academic work pressure. In the context of expectations to resume academic work, some students failed to recognise their ongoing struggles. An absence of conversation regarding recovery in a demanding academic environment renders diverse recovery experiences invisible. Our findings emphasise the need for a broader conceptualisation of COVID-19 recovery amongst young people and call for further research exploring the interaction between students' illness experiences and the fast-paced academic environment. [ABSTRACT FROM AUTHOR]

International migration is a prioritized domain of European aging research. Using a qualitative approach, the author has gathered accounts among Iranian later-life females in the Swedish city of Malmö, suffering from social isolation. The women in this article found themselves in a situation like that of other later-life migrants in Sweden. Several studies have shown how these groups are at risk of ending up in a social isolation which can be hard to break. The situation of the later-life migrant women discussed in this study is characterized by the loss of numerous deep-seated and natural social bonds connected to ethnicity, family, language, and culture. To cope with their exposed situation, the local Iranian-Swedish association provided some self-arranged activities, offering opportunities to social integration. The aim of the study is to demonstrate how the women described their life situation where a local day center made up the key foundation of their social life in a Swedish city in 2000–2008. Typical of that period was that solutions of the alarming situation of some foreign-born elderly citizens were discussed by local authorities, as well as volunteer organizations. Thus, the aim is not to describe the present situation among later life migrants. On the contrary, the perspective is retrospective. The theoretical inspirations used in the article derive from a broader backdrop of social-constructive assumptions that define narratives or accounts as explanations of the reality of everyday life and experiences. In the article the women’s stories are defined as small, local, erratic narratives, nevertheless explaining the reality of everyday life and experiences which in their turn reflect the state of illness, locally specific attachment and social isolation. Three salient themes emerge in the material: place bound experiences, illness and unsuccessful integration. The narratives are defined as small irregular accounts, contrasting larger narratives of later-life migration. The article shows how the women depicted their situation as a borderline between an Iranian life in exile and a Swedish society, leaving them in a state of Limbo. The women expressed ambitions of integrate into a Swedish community of senior citizens, providing privileges and civil rights. Thus, the narratives challenge common generalizing images of later-life migrants and their life conditions. [ABSTRACT FROM AUTHOR]

Background: The condition known as chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) is poorly understood. Simplified medical models tend to neglect the complexity of illness, contributing to a terrain of uncertainty, dilemmas and predicaments. However, despite pessimistic pictures of no cure and poor prognosis, some patients recover. Purpose: This study's purpose is to provide insight into people's experiences of suffering and recovery from very severe CFS/ME and illuminate understanding of how and why changes became possible. Methods: Fourteen former patients were interviewed about their experiences of returning to health. A narrative analysis was undertaken to explore participants' experiences and understandings. We present the result through one participant's story. Results: The analysis yielded a common plotline with a distinct turning point. Participants went through a profound narrative shift, change in mindset and subsequent long-time work to actively pursue their own healing. Their narrative understandings of being helpless victims of disease were replaced by a more complex view of causality and illness and a new sense of self-agency developed. Discussion: We discuss the illness narratives in relation to the disease model and its shortcomings, the different voices dominating the stories at different times in a clinically, conceptually, and emotionally challenging area. [ABSTRACT FROM AUTHOR]

A key tenet of critical health research is that individual symptoms must be considered in light of the social and political contexts that shape or, in some cases, produce them. Precisely how oppressive social forces give rise to individual symptoms, however, remains challenging to theorize. This article contributes to debates over the interpretation of symptoms through a close reading of the case of Leon, an African American man struggling with an addiction to crack cocaine. Leon presented a complex illness narrative in which his addiction was clearly a product of structural racism, but also the result of dynamics within his family. Drawing on critical reevaluations of Freud's concept of the dreamwork, I call attention to the surface elements of Leon's narrative—what I term the surface of the symptom—and to the formal mechanisms by which latent contents (such as the social, the political, and the personal) are transformed into the manifest form of his symptom. This formal mode of reading offers a productive way of approaching questions of demystification and interpretation, one that holds in tension the register of social causation with the singularities of individuals and their symptoms. [ABSTRACT FROM AUTHOR]

Illness narratives convey a person's feelings, thoughts, beliefs, and descriptions of suffering and healing as a result of physical or mental breakdown. Recognized genres include fiction, nonfiction, poetry, plays, and films. Like poets and playwrights, musicians also use their life experiences as fodder for their art. However, illness narratives as expressed through popular music are an understudied and underutilized source of insights into the experience of suffering, healing, and coping with illness, disease, and death. Greater attention to the value of music within medical education is needed to improve students' perspective-taking and communication. Like reading a good book, songs that resonate with listeners speak to shared experiences or invite them into a universe of possibilities that they had not yet imagined. In this article, we show how uncovering these themes in popular music might be integrated into medical education, thus creating a space for reflection on the nature and meaning of illness and the fragility of the human condition. We describe three kinds of illness narratives that may be found in popular music (autobiographical, biographical, and metaphorical) and show how developing skills of close listening through exposure to these narrative forms can improve patient-physician communication and expand students' moral imaginations. [ABSTRACT FROM AUTHOR]

How are the historically fraught contexts of alterity that define postcolonial settings generated and negotiated in the context of medical uncertainty? What role does narrative play in the lived experience of such uncertainty and alterity? Focusing on a single "diagnostic odyssey" of childhood illness, this article examines the relationship between chronic uncertainty, alterity, and narrative sensemaking in the highly dynamic and pluralistic healthcare setting of Vanuatu. It demonstrates how close examination of cultural metaphors relating to sickness can reveal deep insights into the lived experience of illness, health seeking, and caregiving. In doing so, it highlights the role of narrative in rendering otherwise unfathomable circumstances sensible on cultural and existential terms, including by engendering a sense of intersubjective stability in the face of trauma. [ABSTRACT FROM AUTHOR]

Background The condition known as chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) is poorly understood. Simplified medical models tend to neglect the complexity of illness, contributing to a terrain of uncertainty, dilemmas and predicaments. However, despite pessimistic pictures of no cure and poor prognosis, some patients recover. Purpose This study’s purpose is to provide insight into people’s experiences of suffering and recovery from very severe CFS/ME and illuminate understanding of how and why changes became possible. Methods Fourteen former patients were interviewed about their experiences of returning to health. A narrative analysis was undertaken to explore participants’ experiences and understandings. We present the result through one participant’s story. Results The analysis yielded a common plotline with a distinct turning point. Participants went through a profound narrative shift, change in mindset and subsequent long-time work to actively pursue their own healing. Their narrative understandings of being helpless victims of disease were replaced by a more complex view of causality and illness and a new sense of self-agency developed. Discussion We discuss the illness narratives in relation to the disease model and its shortcomings, the different voices dominating the stories at different times in a clinically, conceptually, and emotionally challenging area.

This article analyzes Maggie Nelson's Bluets (2009) as a prominent example of the fragmentary narration that can result from the experience of pain and loss. I demonstrate how Nelson's disparate ruminations on her obsession for the color blue, her heartbreak, and her quadriplegic friend's chronic pain defy the superimposition of a teleological plot over these experiences, in favor of episodic reading and sporadic not-knowing. Still, the autofictional nature of the text—with its alternatively overbearing and elusive authorial presence—challenges any naïve emotional investment in it. Focusing on Nelson's narration of her quadriplegic friend's experience of chronic pain, I conclude by highlighting how Bluets calls for a reconsideration of the reader's stance vis-à-vis the description of suffering, as well as of simplistic critical approaches to illness narratives as life-writing. [ABSTRACT FROM AUTHOR]

This paper addresses the idea of patient consent in the Indian mental health care system. Mental hospitals tend to treat patients as machines. The personhood of the sufferer is treated as invalid. The paper argues that the conventional clinical practice dehumanizes patients, neglecting their autonomy and perpetuating the stigma associated with a psychiatric diagnosis. In contrast, through the narrative voice of Imelda's son, Jerry Pinto's novel Em and the Big Hoom (2012) intimately intertwines the experiences of mental illness within the broader context of familial struggles. Em refuses to become a mere statistic or a diagnostic label, embodying the agency to shape her narrative beyond the constraints of clinical definitions. The novel challenges the flawed clinical gaze and provides an alternative narrative that portrays an ambitious woman who does not succumb to the definitions of her illness. These alternative narratives resist reductionist perspectives, offering a more comprehensive understanding of mental illness that transcends clinical definitions. This paper critically examines the novel's portrayal of patient autonomy and consent, shedding light on the implications for mental health care practices in India. It explores how the text serves as a catalyst for reevaluating conventional clinical perspectives and fosters a more compassionate and patient-centric mental health care system. [ABSTRACT FROM AUTHOR]

Drawing on Afro-Caribbean and Black theories, this paper analyzes water as metaphor in Isabel Allende’s “Paula” and Gabriel García Márquez’s “Love in the Time of Cholera.” I read these texts as illness narratives to conceptualize water as a generative space where the authors negotiate death, grief, and loss. Although these texts are written by established, canonical Latin American writers, this paper attends to the overlapping iterations of water as currents, clouds, and rivers throughout the texts, emphasizing water’s potential to be a mode and method of transformation and memory. Water, as Márquez describes, can carry illness and even the threat of death. Yet water is also a necessary life-sustaining force and animates the relationships and connections that tie bodies together. Therefore, I consider bodies of water and water in bodies, exploring the linkages between mother and daughter through birth and the ways people visualize reflections of their past lives and selves. Charting water as a recurring symbol throughout the texts captures the ebbs and flows of emotion across the texts, and illustrates the blurred, rippling boundaries reverberating between grief, love, and loss. [ABSTRACT FROM AUTHOR]

The perceived social liberalisation of Irish culture over the past ten years has significantly impacted Irish writing, resulting in discussions of formerly tabooed topics like psychosis, menstruation, and infertility. This shift is particularly evident in the recent rise in public interest in creative non-fiction writing. This article examines the rise in popularity of illness narratives: tales of patients' and care-takers' embodied experiences of mental and physical ailments in light of Irish medical-historical developments. Focusing on chapters from recent Irish essay collections by Emilie Pine, Sinéad Gleeson, and Sophie White, this article considers how writing about the gendered experiences of women in Irish medical and mental institutions can shape political action and contribute to the formation of radical new cultures of care. [ABSTRACT FROM AUTHOR]

Anna Janko's latest novel Finalistka [The Finalist] (2021) contains a catalogue of illnesses that the main character, the poet Hanka M., has to struggle with. The book, which in many ways resembles a patient's diary, is a record of the battles Hanka, the author's alter ego, has to fight with the enemy which happens to be her own body. The article considers the strategies she employs to hold her body in check as it repeatedly lets her down and, in effect, becomes her enemy. Its disconcerting strangeness strikes her every time she slips into a search for the signs and symptoms of ageing (her reflections at this point are compared with those of Simone de Beauvoir and some other writers). In Finalistka suffering from illnesses is inscribed into life's transience which is not just human but universal, and at the same time particular, affecting both men and women. Nonetheless, it is the woman's perspective that this article finds more interesting. [ABSTRACT FROM AUTHOR]

This is an analysis of some selected poems by Halina Poświatowska using the approach and conceptual tools of somapoetics. The discussion focuses in turn on the manifestations of the (sick) body in Poświatowska's poems and poetic prose (especially when its connected with special sound effects), the verbalization of sensory experience (primarily with regard to the sense of touch) and the role of the sick woman's body in her poetic world (including direct references to the sick body in the act of writing). The critical strategy employed in this article is intended to complement the legacy readings of Poświatowska's work with a functional, somapoetic interpretation that would give full scope to her narrative of the ailing body. [ABSTRACT FROM AUTHOR]

This article attempts to create a multivariant story about a community of women in the Polish-Jewish contact zone based on the text of Rakhel Feygenberg's Di kinder-yorn [Polish title: A Girl's Years: Childhood in a Polesie Shtetl], an autobiography of a Jewish young woman who grew up in Eastern Europe at the turn of the 19th century. Using personal insights and documentary evidence she portrays a community of women readers who are engaged in never-ending rounds of watching and sounding each other. [ABSTRACT FROM AUTHOR]

This article presents a model of reinterpretation of illness narratives from the category of autopathography to that of autosalutography, i.e. restorative/therapeutic autobiography. The cases in point are Małgorzata Baranowska's To jest wasze życie. Być sobą w chorobie przewlekłej [This Is Your Life: How to Cope with a Chronic Illness] (1994) with their textual strategies of (re)negotiation of autonomy and agency. Drawing on the work of Elselijn Kingma, this analysis takes the constructivist approach to the opposition of health and illness. At the same time, the legacy notion of health with its punitive and oppressive implications, is substituted by the concept of wellbeing (as construed in Tanja Reiffenrath's Memoirs of Wellbeing). The latter covers a broad range of lived experiences and upgrades the patient's personal perspective, especially if it is applied within the socio-constructivist understanding of health and illness (disorder). [ABSTRACT FROM AUTHOR]

This article deals with chronic fatigue, one of the characteristic features of contemporary illness narratives written by women authors. First, it focuses on Małgorzata Baranowska's To jest wasze życie. Być sobą w chorobie przewlekłej [This Is Your Life: How to Cope with a Chronic Illness], a story of her own life impaired by SLE (systemic lupus erythematosus). The descriptions of her experiences (the disruption of her daily life caused by chronic pain and her attempts make sense of it) provides a frame for the reading of other narratives, Anne Boyer's The Undying and two journalistic texts on endometriosis, one by Dr Katarzyna Szopa and the other by Dr Karolina Wigura. The article defines chronic fatigue as a social condition which combines a resistance to regenerative therapies with the stress of having to act in demanding situations of real life. The precarious condition of exhausted bodies hovering between a life fully lived and a debilitating morbidity is compared with Byung-Chul Han's philosophy developed in The Burnout Society and The Palliative Society: Pain Today (originally published in German in 2010 and 2020 respectively). [ABSTRACT FROM AUTHOR]

As basic facts of life, illness and healing occur frequently and in a variety of patterns in Chinese non-medical literature, starting from the earliest sources inscribed on oracle bones and continuing throughout literary history up to the present day. This article looks at illness narratives in early medieval anecdotal literature (3rd to 6th century CE) to understand how the experience of being sick or of attending to the sick was reflected in these socio-literary environments and what rhetorical and ideological roles these narratives played in their larger narrative contexts. By focusing on the experiences of the sick and those around them, this article aims at "Honoring the Stories of Illness," in Rita Charon's words, that are hiding in plain sight in much of Chinese non-medical literature. [ABSTRACT FROM AUTHOR]

Examining former athletes' health‐related beliefs and behaviors on the long‐term effects of concussions and potentially developing chronic traumatic encephalopathy (CTE) offers a domain to understand how men renegotiate their masculinities. In this paper, we explore how the cultural production of the concussion crisis shapes the ways in which men athletes make sense of self and their masculinity in the face of declining health. Drawing on in‐depth interviews with 27 male, former athletes, this article examines the multiple ways in which gender shapes their experience and treatment of traumatic brain injuries or suspected CTE. We show how men are re‐negotiating their aging masculinities through illness narratives and how the cultural production of the concussion crisis in sports shapes these narratives. We break down our analysis into three sections: (1) reflections of chaos narratives and stories of never‐aging masculinities, (2) the ways the concussion crisis shapes their restitution narratives, and (3) quest narratives combining never‐aging and aging masculinities. Whether or not these athletes have or are treated for CTE, we argue that they reformulate their masculinity to regain control over their manhood and to feel a sense of relief. [ABSTRACT FROM AUTHOR]

Contrary to public health framings of self-care as individualized bodily regulation, people’s transnational COVID-19 narratives revealed self-care to be a means of crafting social relatedness. In their self-care practices, interviewees drew on their richly structured field of relations, exercised dexterity and discernment in attending to them, and forged new webs of relatedness. Moreover, some recounted moments of radical care when they disregarded bodily boundaries in co-isolating with and caring for infected friends or relatives. These narratives of caring with rather than in isolation from one’s social entanglements provide an alternative imaginary through which we can consider future pandemic responses. [ABSTRACT FROM AUTHOR]

The ability of doctors to empathise with patients is a crucial concern in establishing humanistic medicine. Therefore, the cultivation of this ability has been discussed extensively in medical education. One theory suggests that the experience of patienthood can increase empathy among doctors. This theory is supported by previous research that published doctors' illness narratives. However, the concept of empathy has been ambiguously defined in academic fields, including medicine; therefore, analysing how doctors experience 'empathy' in their interactions with patients is difficult. Our research question is how doctors who became patients describe the relationship between their illness experiences and the interactions with patients after their illness. To this end, this paper initially tracks the debates on 'empathy' in medicine and other disciplines, to develop a lens for analysing doctors' illness narratives. Next, we conduct a narrative analysis of illness stories from 18 Japanese medical doctors who became patients. Our analysis supports the traditional idea that an illness can enable a doctor to become more empathetic. However, this is overly simplistic; how doctors experience and subsequently process their illness is more complex. Moreover, this notion can disregard doctors' suffering in these circumstances, and fail to represent the often-lengthy process of mastering 'empathy' based on their experiences. Therefore, our analysis deconstructed the concept of 'empathy', showing that it can appear in various ways. Further research is required to elucidate how empathy is cultivated during the process of transformation of doctors' illnesses, focusing on their communities and practices. [ABSTRACT FROM AUTHOR]

The end of a pandemic is as much a political act as biological reality. It is over not simply when case counts or deaths are reduced to some objectively determined acceptable level but also when, and if, the public accepts the stories that politicians and health officials tell about it. This paper has three aims. First, to develop the concept of a pandemic illness narrative – a public narrative that makes the experience of an outbreak meaningful to a community of people and explains when it will be finished. Using the case of the United States, the paper then examines how American state organisations and public health officials tried to disseminate a version of the 'restitution illness narrative' to make sense out of the COVID-19 pandemic and explain how it would ultimately end. Lastly, the paper describes the factors that made this narrative ultimately implausible to the American public. As most Americans are now seemingly indifferent about the pandemic, it has ended in the United States without ever actually being narratively concluded. [ABSTRACT FROM AUTHOR]

Within bioethics, Kant's conception of autonomy is often portrayed as excessively rationalistic, abstract, and individualistic, and, therefore, far removed from the reality of patients' needs. Drawing on recent contributions in Kantian philosophy, we argue that specific features of Kantian autonomy remain relevant for medical ethics and for patient experience. We use contemporary end-of-life illness narratives—a resource that has not been analyzed with respect to autonomy—and show how they illustrate important Kantian themes, namely, the duty to know oneself, the interest in elaborating universalizable principles, and the emphasis on ideals as points of orientation that guide behavior without ever being fully realized. As Kant does, the patient-authors discussed here perceive the end of life as a moment to reflect on the constitutive principles which have governed that life, thereby offering a privileged moment to pursue self-knowledge. We argue that bioethical conceptions of autonomy stand to gain if they revise their conception of Kantian moral philosophy as too formal, abstract, and detached from emotions and personal relationships to be helpfully applied. [ABSTRACT FROM AUTHOR]

Scientific literature since the 1980s examines the phenomenon of healthcare professionals interrupting patients: at which second patients opening expositions are interrupted and how long they take if unrestrained. Although the goal of this literature is strictly numerical—determining interventions' length—, it reveals a number of its authors' views and preferences. Our discourse analysis reveals, first, that, often in between the lines, this literature suggests reasons for letting patients speak freely and tries to dismantle the myth of the overly-loquacious patient. Second, by turning to some philosophical inquiries into the notion of "interruption," we explore how, within this literature, the ultimate reason for interrupting patients and silencing several of their concerns is often the fear of a certain medical logic being interrupted—a logic that dates back to Vesalius and Bichat, and that informs nowadays biomedicine: patients' speech is valuable as long as it contributes to a diagnosis in the form of the identification of an underlying tissue damage. That is, this literature presents the interruption of patients as a device of claiming power on the part of an eminently biomedical approach to illness. The paper provides further reasons for not interrupting patients proposed by the biopsychosocial model, "narrative medicine," and anthropologists who study the functions of illness narratives. [ABSTRACT FROM AUTHOR]

Covid-19 is the first pandemic to be broadcast and photographed as it happens worldwide. However, despite the plethora of images on countless aspects of the pandemic, few media images have covered its more sensitive issues, such as the collapse of the healthcare system, the process of dying alone, or the disruption to funeral rites and mourning. Consequently, the visual narratives of the pandemic are biased. They lack images that show its more dramatic aspects. This affects not only how the public perceives and reacts to Covid-19, but also the visual evidence that will remain for historical memory in the future. With one of the world's highest case rates and most stringent states of emergency, Spain offers an interesting case study to analyse the pandemic's photographic narratives and its missing images during lockdown. This paper focuses on the presence or absence of images dealing with illness, death, dying and grief, as well as their ways of representation. It delves into the framing of particular visual narratives through an analysis of the images that appeared in Spain's leading newspapers, together with semi-structured interviews conducted with renowned photojournalists who worked on the front line to document Covid-19 during lockdown. [ABSTRACT FROM AUTHOR]

Children's narrations of their experiences with cancer provide researchers/clinicians with an understanding of their lived experiences. Arthur Frank's illness narrative framework—restitution, quest, and chaos—was used to explore 11 children's experiences with cancer. Several participants identified with the restitution narrative of "overcoming" an illness, whereas others identified with the quest narrative of a changed identity after an illness. Two participants voiced emotional struggles with cancer, identifying with the chaos narrative. The Medical Agency theme encompassed children who appeared to be experts on their own illness experiences. These findings highlight the importance of centring children's voices and stories in clinical and research settings. [ABSTRACT FROM AUTHOR]

Treatment of a child diagnosed with an inherited metabolic disease is a demanding task both for the clinicians and for the parents. The metabolic pediatricians and dietitians have to deal with scarce and dispersed clinical knowledge, while the parents must actively participate in its treatment, the bulk of which consists of a stringent diet and managing the risk of metabolic decompensation or intoxication. In this article, I characterize the medical epistemologies of a particular kind of "metabolic living," discussing differences and similarities between the clinical/expert knowledge of metabolic specialists, and the lay knowledge of parents of affected children. [ABSTRACT FROM AUTHOR]

Narratives reinstate meaning to the body and mind, especially after major life events like migration and illness. To better understand the interplay between migration status and narrative practices, I examine the functions and meanings of illness narratives among three Ethiopian immigrant women living with chronic illnesses. I investigate how these accounts impact the ways in which my interviewees identify and understand themselves in relation to their illnesses. The core of this article is divided into three sections—Stigma, Frustration, and Faith—each conveying my interlocutors’ migration and chronic illness experiences as well as the liberating and constraining effects of storytelling. Collectively, these themes highlight the agentive aspects of illness narratives that help chronically ill Ethiopian immigrant women assert control over their bodies and identities as they strive toward bettering their health.

The end of a pandemic is as much a political act as biological reality. It is over not simply when case counts or deaths are reduced to some objectively determined acceptable level but also when, and if, the public accepts the stories that politicians and health officials tell about it. This paper has three aims. First, to develop the concept of a pandemic illness narrative – a public narrative that makes the experience of an outbreak meaningful to a community of people and explains when it will be finished. Using the case of the United States, the paper then examines how American state organisations and public health officials tried to disseminate a version of the ‘restitution illness narrative’ to make sense out of the COVID-19 pandemic and explain how it would ultimately end. Lastly, the paper describes the factors that made this narrative ultimately implausible to the American public. As most Americans are now seemingly indifferent about the pandemic, it has ended in the United States without ever actually being narratively concluded.

This article presents autopathography as a genre in which patients can reclaim their voices to articulate their experiences of the medical system, drawing on Arthur Frank’s theory in The Wounded Storyteller. Illness narratives can be understood not only as means of expressing a largely negative experience by way of monologue, but also as platforms for dialogue between patients and their caregivers. Such encounters, albeit seemingly impossible under the conditions of contemporary medical system, have been postulated, among others, by Rita Charon, the founder of narrative medicine. In the text, autobiographical works of Anatole Broyard and Aneta Żukowska are given as examples of patients expressing the need for a sustained, mutual relationship between doctors and their patients. As such, autopathographies can play their part in bringing to life the ideals of narrative medicine, as well as of what S. L. Jain called “elegiaic politics”.

Biobanks have been established from the beginning of the millennium as relevant infrastructures to support biomedical research. These repositories have also transformed the paradigm of collecting and storing samples and associated clinical data, moving these practices from the healthcare services and research laboratories to dedicated services. In Portugal, the establishment of biobanks is happening in the absence of a specific legal framework, turning it difficult to fully understand the scope of their action. This ethnographic research explored how establishing a biobank challenges the dynamics between healthcare and biomedical research. The ethnography intended to follow the path of biological samples from the hospital, where they were collected, to the biobank in a research institute, where they were stored. Findings suggest that although the nature of the biobank's technical work seemed to inscribe it as a research-oriented setting, the biobank's daily work was performed through symbolic action in the logic of care. Biobank staff constantly recalled the human nature of the samples, and they built complex illness narratives of each sample, promoting a connection with the absent donor. These practices were crucial to constructing the biobank as a health place, one that was designed to be life-saving in the near future. [ABSTRACT FROM AUTHOR]

Through decades of scholarly analysis and application, the practice of illness narratives has been established as an effective therapeutic intervention for dealing with illness-related emotional well-being (Couser; Frank; Irvine and Charon). Scholars of illness narratives argue that the medium works to bring agency back to the body following the neoliberal relinquishing of one's life story in the patient-physician encounter. Contemporary scholarly work is mapping the growth of illness narrative forms from the traditional book to emerging digital-born narratives; however, there is limited research on the medium's intersection with virtual reality (VR) technologies. Working with Marie-Laure Ryan's theoretical framework of possible worlds theory, this paper explores the transformative potential of VR illness narratives for pathologized identities found when VR resists the call to fall into one of two categories: pure transhumanism where VR reality is emancipated from actual reality or an artificial experience that has no lasting effect on the self. [ABSTRACT FROM AUTHOR]