The Project
Our research project: “Illness Narratives: Towards a Gendered Health(care) Awareness" (INGH) (led by Profs. Isabel Durán and Francisco Cortés) has obtained funding from the Spanish Ministry of Science and Innovation for three years (2025-2028).
Medical Humanities (MH) is an interdisciplinary area of knowledge that examines human health, physical and mental maladies, and the personal experience of being ill, as reflected in literature and other artistic expressions. After our project Gender and Pathography from a Transnational Perspective (202124), the research group Gender Studies in English-Speaking Countries from U. Complutense de Madrid (UCM) envisions to continue its consolidated expertise in the disciplines of MH, gender, and literary studies to further explore stories of illness, or (auto)pathographies, thanks to this new project proposed for 202427.
The members of the research team are professors of English Studies at UCM, U. Autónoma de Madrid (UAM), and U. de Valencia (UV). To strengthen the biomedical, literary, and international dimensions required for such a project, this group is supervised by renowned advisors from U. of Oklahoma, U. of Basel, and the Medical School at UCM, and by Dr. Siri Hustvedt, Princess of Asturias Award in Literature (2019). We plan to continue investigating how (auto)pathographies complement patients medical histories, reflect health(care) precarities, and denounce gender-related injustices by the medical profession and global health systems.
Yet, this projects overall hypothesis and the novelty of its approach lies in how illness stories, studied through the lens of MH, are not always confrontational in doctor-patient relationships but, instead, have the potential to enhance medical competence, ethics, and empathy, and serve to improve medical students education and healthcare professionals daily practice (the teaching art) while, simultaneously, becoming a curative scriptotherapy for their writer-patients (the healing art). Beyond the restorative function inherent in the act of life writing, (auto)pathographies also build a community of illness sufferersthe authors and their intended readerswhich facilitates physical/mental recovery from their conditions and effectively advocates for patient rights.
To enable the scrutiny of (auto)pathographies in conjunction with gender and its associated intersectional variables, such as race, ethnicity, and socioeconomic factors, research by the two main researchers (IPs) and the other members of the project is divided into three thematic clusters: stories of the body, of the mind and of the sexual in relation to illness. Ultimately, this projects formative mission intends to disseminate its research results among current and future health professionals to contribute to humanizing their theoretical-practical biomedical approach to illness, optimize their encounters with patients, and ensure quality clinical care and healthy lives.
Research objectives
The critical focus of this project remains the relationship between gender, illness narratives, and Medical Humanities (MH). In addition to literary texts—autobiographical narratives, poetry, drama, and fiction—we include works of graphic medicine, a breakthrough genre in the 21st century. The innovation of this project lies in demonstrating how literature and storytelling can influence society, raise awareness, challenge stereotypes surrounding specific illnesses, contribute to improvements in health systems, and enhance both the education of medical students and the daily practice of healthcare professionals. Through the project’s three thematic work packages (narratives of the body, mind, and sexuality) and its emphasis on bridging the gap between society and those affected by illness, we aim to explore the utility, formative potential, and activist dimensions of storytelling across disciplines. Ultimately, our objective is to foster attitudinal and behavioral changes related to health and healthcare. Specifically, we focus on how illness narratives expose and critique two interconnected issues: gender inequalities and the dynamics between private and public healthcare systems.
We position our research within the “second wave” of Medical Humanities (MH), often referred to as “critical MH,” and move beyond the traditional three “Es” associated with the first wave—ethics, education, and experience—by emphasizing a fourth “E”: entanglement. Following scholars who view MH as “deeply and irretrievably entangled in the vital, corporeal and physiological commitments of biomedicine” (Kristeva et al., 36), we challenge the conventional separation of the humanities and sciences. Both fields are rooted in the nature-culture divide that structures modern knowledge systems, and neither can independently claim to offer “wholeness.” Instead, we advocate for MH as a “cross-disciplinary and cross-cultural space for bidirectional critical interrogation of medicine and the humanities across the nature-culture divide” (Kristeva et al., 36–37). In alignment with this perspective, the project explores issues of “entanglement” through two specific cross-cultural lenses: gender and health awareness. By examining the intersections of literary narratives, gender, and healthcare systems, we aim to expand understanding of how these domains inform and challenge each other in ways that transcend traditional disciplinary boundaries.
The project seeks to explore diverse representations of illness in literature that challenge the reductionist and fragmented perspectives often found in medicine—perspectives that neglect the individuality of a patient’s experience. Additionally, these representations frequently critique the social injustices inherent in a global health system marked by vast disparities and discriminatory policies and practices. This sal will focus on the three primary axes of the project: illness narratives, gender, and how illness narratives can foster societal change.
1. ILLNESS NARRATIVE: By illness narrative or pathography (a well-known term coined by Hunsaker Hawkins in 1993) we refer to autobiographical or fictional narratives that chronicle the experience of illness, disability, or trauma. These works often explore the personal, social, and cultural dimensions of health and suffering, bridging the gap between the medical and the humanistic perspectives. Pathographies explore how individuals understand, cope with, and communicate the physical, emotional, and social dimensions of illness. In our critical analysis of illness narratives or pathographies, we shall partly follow Hawkins’ taxonomy of these texts when she classifies them into four different groups, according to the author’s intention: didactic, angry, alternative, or eco-pathographies (128–29). In a more recent work, Charon (2006) convincingly indicates that, after all, the clinician’s task is essentially one of narrative interpretation: the doctor is required to listen attentively to a complex and multi-faceted narrative, told in the patient case history, in the symptoms of the body, and in medical images and laboratory test results, all of which need to cohere into the formulation of a diagnosis and treatment plan. Thus, narrative and medicine are inextricably bound.
2. GENDER: As said above, this sed project is grounded in gender studies, a primary area of research for all members of the UCM research group "Gender Studies in English-Speaking Countries." Since its inception in 2007, under the leadership of one of the project's PIs, Isabel Durán, the group has consistently advanced scholarship in this field, as evidenced by its extensive publication record and its previous project (2021–2024) (see https://www.ucm.es/medicalhumanities/past-research-projects). This rich foundation informs and supports the objectives of the current projectctsal. To continue with the research lines of this Group, our project will address how gender bias (often referred to as "medical sexism") manifests in certain studied pathographies, considering this complex phenomenon and its impact on the quality of care received by women. In this context, the inclusion of feminist perspectives in both research and dissemination is essential to achieving this objective. We will examine how gender bias can influence the dynamics of the doctor-patient relationship in various ways: inequality in care, as women are often perceived as "more emotional," which can lead doctors to downplay their symptoms; lack of empathy, when healthcare professionals fail to take women’s complaints seriously, causing them to feel misunderstood or invalidated; stigmatization, since women frequently face stigma related to mental health issues; reinforcement of the doctor-patient hierarchy through gender bias, which often reinforces the doctor-patient hierarchy, creating what Maya Dusenbery calls the "trust gap" (71), where doctors doubt female patients, perpetuating the belief that they exaggerate pain and labelling them as “chronic complainers” before proper diagnosis. Other key thematic concerns related to gender will include the intersection of gender and mental/reproductive health, and the extent to which caregiving is a gendered practice (drawing on insights from scholars such as Tronto).
3.HEALTH AWARENESS: A new factor in this project is the overcoming of philological frameworks in the analysis of texts, to the benefit of the social transcendence that they can generate. The integrative approach of MH promotes what we called above an “entanglement”; that is, a practical conception of literary studies that distances them from the usual theoretical cloister, which considers texts per se and strips them of any link with the real world. In broad terms, health awareness refers to the understanding of physical, mental, and emotional well-being, as well as the knowledge of health-related issues, preventive measures, and the broader impacts of illness on individuals and society. Literature, particularly illness narratives, can enhance health awareness by providing intimate, personal perspectives on the experience of illness. These stories highlight the emotional, social, and psychological dimensions of health, making complex medical issues more relatable and accessible. Through these narratives, readers can gain deeper empathy and critical insights into healthcare systems, societal attitudes toward illness, and the ways culture shapes health experiences. Furthermore, literature has the power to foster societal change by challenging existing norms, raising awareness about health disparities, and sparking public dialogue about the need for more inclusive, compassionate healthcare practices.
In summary, this project will examine a corpus of illness narratives, through the lens of gender and health awareness, focusing on specific physical illnesses (such as cancer and neurodegenerative diseases, including ALS and Alzheimer´s disease); mental diseases (such as PTSD, depression, and anxiety) and sexuality-related occurrences (such as abortion and violence-related health problems). The project will necessarily adopt a transnational perspective, enabling us to move beyond the national literatures of English-speaking countries—our primary area of expertise—while also incorporating, at times, comparative insights from narratives produced in Spain. As Spanish scholars specializing in the literatures and cultures of English-speaking countries, we are uniquely positioned to take a comparativist approach in analysing illness narratives under this double focus. Our approach will allow us to explore, in particular, the critiques of public healthcare systems (most European countries) versus private ones (the US), providing valuable insight into how cultural contexts shape experiences and representations of illness.
General Objective:
In our research project, as said, we aim to focus on two main themes through literary analysis. First, we will examine how authors critique and expose disparities between public healthcare systems (e.g., Spain) and private ones (e.g., the USA). Second, we will analyze these narratives from a gendered perspective, focusing on how certain pathographies reflect differing concerns and priorities for men and women in their experiences of illness. By "gendered health(care) awareness" we refer to the recognition that health and healthcare experiences are not gender-neutral but are instead influenced by gendered social norms, expectations, and roles. It involves understanding how different genders may face distinct challenges in accessing care, receiving diagnoses, or experiencing illness, due to cultural, societal, and medical factors. For instance, we aim to investigate how works by female authors often highlight issues such as caregiving responsibilities, bodily/aesthetic concerns, the medicalization of women’s bodies, and the emotional and psychological toll of navigating specific illnesses and healthcare systems. In contrast, narratives by male authors may focus more on themes of vulnerability, loss of autonomy, or the societal expectations tied to masculinity in the face of illness. These gendered perspectives enrich our understanding of how men and women articulate their experiences and critiques of healthcare and illness, offering valuable insights into the broader cultural and social implications of illness narratives.
As literary scholars, our focus lies in uncovering and amplifying how these themes are represented and critiqued within illness narratives. By bringing these perspectives to light, our analysis aims to deepen the understanding of the cultural/political/gender dimensions of healthcare and contribute to ongoing conversations about health policies and gender. Likewise, we hope to contribute to more equitable and inclusive healthcare practices, denouncing injustices, fostering empathy, reducing biases, and promoting better communication in patient-doctor relationships.
Specific Objectives:
This project’s aims are divided into three separate but interrelated work packages. This methodology allows us to set specific objectives within our main research goal:
- To examine gendered portrayals of illness in body-centered pathographies, with a focus on how these narratives highlight the differing concerns and priorities of men and women, entangling the biomedical with the biopsychosocial perspectives that address these distinct experiences (Work Package 1).
- To investigate narratives of mental illness as critiques of public and private healthcare systems, fostering collective responsibility and understanding of mental suffering for men and women in contemporary times (Work Package 2).
- To examine how illness narratives depict intersections of illness with sex, gender, and sexuality, underscoring disparities in health systems and praxes of health professionals, while identifying the violence found in certain situations of women’s sexual and reproductive lives (Work Package 3).
Clusters
WORK PACKAGE 1: NARRATIVES OF BODY-CENTERED ILLNESSES
(Coordinators: I Durán/F Cortés; Participants: C Alonso, L Rodríguez, C Alea)
Approach and corpus: Physical pain, in its various forms, is a fundamental aspect of human existence. Irish author Edna O’Brien once remarked that “the body contains the life story just as much as the brain.” On a similar note, as González-Arias and Glosowitz note, pain can range from "an almost imperceptible discomfort at skin level to the prolonged states of unbearable bodily distress that characterize some chronic medical conditions" (13). In this work package, we will explore physical illnesses and bodily suffering/degeneration as represented in pathographies that not only describe illness but often unfold through the perspective of a body marked by illness and pain. Elaine Scarry, in The Body in Pain, argues that physical pain is inherently "unsharable" and resists articulation in language. This linguistic inaccessibility often isolates individuals in pain, creating a gap between them and their community, as others cannot fully connect to their suffering. Hence, if the ill body, as depicted in pathographies, becomes a central character influencing the overall tone, structure, and themes of the narrative, we must tackle key aspects of the ill body’s presence in these texts: the embodiment of the experience and its contingency (descriptions of pain, physical limitations, and altered bodily landscapes); transformation (how narratives reflect the author’s evolution through bodily degeneration); emotional, social, and cultural dimensions (stigma, societal expectations, and cultural attitudes toward illness); and ethical considerations (such as the patient’s autonomy, informed consent, and end-of-life decisions). Because the MH should fully acknowledge “the pathological and healing powers of culture, and approach the human body as a complex biocultural fact” (Kristeva et al. 34)
To restrict ourselves to the objectives presented, we will often conduct a comparative reading of men’s and women’s pathographies, with a specific focus on how gender influences the representation of illness and suffering. This gendered analysis aims to shed light on the ways in which these narratives address or perpetuate gendered experiences of pain, medical treatment, and social expectations, through the exploration of narratives related to various diseases (mainly cancer and neurodegenerative diseases, such as ALS and Alzheimer’s), examining how these accounts may either challenge or reinforce malpractices and gender-based stereotypes in the medical field. Despite the increasing feminization of the medical profession, medical research remains largely male-dominated, which may contribute to the perpetuation of gendered assumptions and stigmatization of health issues that disproportionately affect women’s bodies. This analysis will also compare public and private healthcare systems as represented in our corpus, focusing on their impact on patient experience—particularly in access to care, treatment decisions, and the emotional and social effects of different systems. We will also explore how these health systems, whether public or private, reinforce gender and socioeconomic disparities during the trajectory of illness and pain treatment.
WORK PACKAGE 2: NARRATIVES OF MENTAL ILLNESSES AND CARE
(Coordinators: L d l Parra / I Durán / F Cortés. Participants: C Méndez, R Gualberto, R Vega)
Approach and corpus: This work package will explore representations of psychic suffering from a gender perspective, particularly focusing on anxiety, depression, mental breakdown, and the psychological effects of living with chronic illness. Such ailments are often multifaceted and intersected by several forms of structural violence that especially affect women and minorities—what Lauren Berlant has referred to as “slow death” (2007)—who often receive little to no psychological care and whose pain is often delegitimized. Further, women are disproportionately responsible for informal caregiving, an unpaid, undervalued, and underrecognized asset in the US and capitalist society, which the WHO has estimated to amount to 0,8-4,9% of the gross domestic product worldwide (2024). Because of this lack of recognition and state support, caregiving often takes a heavy mental toll (Losada et. al. 2018), which is why we believe it is important to analyse representations of care and caregiving and its consequences. Additionally, women are overrepresented in the diagnosis of certain mental disorders, such as eating disorders, anxiety, or depression. This stark variation may be linked to biases in the diagnosis criteria, but it is inextricable from structural differences in gender socialization and even to the prevalence of gender-based violence (Riecher-Rössler 2017).
Following Phillip Thomas and Eleanor Longden (2013), psychiatric and psychological care should engage with other existing paradigms of care, such as an embodied practice or the use of narrative in recovery. In this work package, we intend to unravel the intricate ways in which overmedicalization, gender biases, and the institutionalization of care endorse an individualized, biological approach to madness and mental suffering that erases systemic inequalities. To counter said approach, we seek to look at the broader collective conditions that cause psychic suffering through the user/survivor’s lived experience, understanding literature as a way not only to express that experience but also to challenge hegemonic conceptions of it, as “Mad Studies” propose (Beresford, 2022). Thus, in work package 2, we will explore how these illnesses are experienced, perceived, and treated by both the patient and medical practitioners, as well as by informal (e.g., nonmedical) caregivers through the critical examination of both fiction and non-fiction accounts of mental suffering, from the 21st century. We will analyse how narrative reshapes the patient’s, caregiver’s, and/or physician’s outlook on mental illness. In line with McRuer’s “crip theory” (2006), we will also explore how narrative can shift the meaning of what it means to live with illness, rejecting fixed dichotomies of able/disabled, sane/insane, and health/illness, and how this may also dismantle gender roles and stereotypes.
WORK PACKAGE 3: NARRATIVES OF THE SEXUAL AND SEXUALIZED SUBJECTS
(Coordinators: F Cortés/I Durán; Participants: N Hernando, D Yagüe, future new FPI candidate)
Approach and corpus: Historically, female biology, particularly the reproductive cycle, was labeled pathological compared to the male body, which served as the standard for health (Van Mulken et al. 922). This led to perceptions of women’s health as inherently flawed or “other,” especially in relation to sexual reproduction. Societal forces and medical practices often suppressed women’s sexual autonomy, causing psychological suffering. Feminist movements have long challenged this medical dominance, advocating for sexual and reproductive rights, including contraception, abortion, assisted reproduction, and the demedicalization of pregnancy, as well as protections against violence and sexual crimes. “Health feminism” has fought against the “male” medical industry’s colonialization of the female body (Rich x), exposing the arrogance and indifference often faced by women, both as patients and underpaid workers in healthcare systems. Yet, in the 21st century, obstetrics, gynaecology, and other sexually related medical specializations, continue to claim authority over female sexuality and reproduction (Lesnik-Oberstein 217–18). While significant progress has been made in healthcare policies and the visibility of women’s health issues (Dubriwny 2), challenges persist, such as the rollback of abortion rights in the United States with the overturn of Roe v. Wade in 2022, alongside global violence against women. Movements like #MeToo have emerged as critical platforms for raising public awareness and empathy, with scholars like Fernández-Morales and Menéndez (2024) emphasizing survivor testimonies as feminist activism that promotes societal change. These movements also advocate for alliances with healthcare professionals to enhance doctor-patient relationships and advance women’s autonomy over their biological processes.
Work Package 3 explores the representations of the pathologized, ill, and diseased female bodies and minds in relation to the variables of sex, sexuality, gender, and sexual violence. Illness narratives reflect socially constructed ideas or ideals on gender identity, biological specificities on sex, and interactions with health professionals in medical clinics, notably how the notions of sexuality, birth control, and sexual reproduction become oppressive discourses and are medicalized as physical and mental illnesses, resulting in unequal power relations between doctors and patients, as an analogy for those between men and women. Package 3 complies with this project’s strengthened gendered approach by examining contemporary literary works written by women, which affect women’s reproductive lives and sexuality. This package will analyse how the selected plays, memoirs, graphic novels and fiction can help the medical profession and students to learn ethics and empathy and, thus, to improve their professional competence, while these literary works have a potential to generate debate and raise social awareness on pressing concerns affecting women’s lives. The texts from this package revolve around the patriarchal medicalization and stigmatization of women’s reproductive health (notably focusing on abortion) and around violence affecting women still during the 21st century: obstetric violence, rape and other sexual crimes.