Narrating Illness: Representation and Lived Experience

This presentation introduces an ongoing research project in the philosophy of medicine focused on the notion of “rare disease.” In the European Union, a disease is defined as rare when it affects fewer than one in two thousand individuals. The category carries an intrinsically ambivalent dimension: it is often associated with a lack of resources—financial, epistemic, human, institutional, social, and political—yet, paradoxically, some rare diseases benefit from strong patient associations, medical infrastructures, and research networks precisely because of their rarity. It thus reveals both strengths—its capacity to mobilize, federate, and generate political visibility—and limitations, including heterogeneity, resource constraints, and inequalities in access to expertise. This tension between strength and fragility makes rare disease philosophically fruitful. With the exception of recent work by Rosàs Tosas (2025), its philosophical potential remains largely underexplored. This presentation advances the hypothesis that rare diseases can serve as a privileged vantage point from which to examine medicine and its norms. Building on Rosàs Tosas’s identification of epistemic and meta-epistemic advantages given by rare diseases, I also identify additional thematic areas in which rare diseases provide a valuable lens for thinking more clearly about key issues in contemporary medicine: the management of limited medical resources in a context of environmental crisis; personalized medicine; patient expertise and the epistemic humility of clinicians; territorial inequalities in access to expertise; diagnostic odysseys; international cooperation; the politicization of health; the phenomenology of isolation; the articulation between individual and population levels; and tensions between singular cases and evidence-based medicine. The aim is to develop and foster interdisciplinary dialogue around this hypothesis.

Over the last decades, few psychiatric diagnoses have sparked as much debate, and resulted in as many fictional narratives, as post-traumatic stress disorder (PTSD). Parallel to the emerging understanding of trauma within psychology and psychiatry, humanities scholars, and especially literary scholars, have studied and theorized the concept of trauma since the 1990s. This presentation provides an overview of the overlaps and divergences between prominent views of trauma within literary studies, psychology and psychiatry. It argues for the value of a pluralistic understanding of trauma as containing several meanings at once, and demonstrates how this kind of understanding can be developed through contextualizing narrative analysis of trauma fiction. Four American and Swedish novels, told through the points of view of victims of sexual violence and femicide, will serve as case studies. Which implicit understandings of trauma are at play in the fictional texts? Can trauma fiction, by combining depictions that resemble conventional, psychological definitions with surprising, non-realist elements, inspire new, cross-disciplinary hypotheses about the forces that affect personal experiences of anguish in the aftermath of violence? The presentation draws on my recently published PhD thesis, Unquiet Afterlives: Ghosts Narrating Rape Trauma in Contemporary Swedish and American Fiction (1990–2018) (2026).

New directions beyond the instrumental role of literary texts have played a significant part in the ongoing evolution of the interdisciplinary field of medical humanities. Considering recent developments in critical medical humanities, a focus on the meaning and role of narrativity (Woods 2011) has importantly informed novel directions in the relationships among genre, metaphor, and narrative among literary scholars (Bolaki 2016; Jurecic 2012; Wohlmann 2022). While memoir has often been identified as the genre most aligned with recovery-oriented, coherent storytelling, the growing interest in essay collections on illness demonstrates that not all representations seek linearity, unity, or resolution (Allitt 2023). The illness essay can emphasise self-reflective inquiry, draw on interdisciplinary knowledge, and question how contemporary social and cultural forces influence experiences of illness (Jurecic 2016). While anorexia memoirs have attracted substantial scholarly attention (Kroll and Webb 2018; Meuret 2007; Seaber 2016), there has been little focus on the intersection of anorexia and essay. In this presentation, I analyse the essay collection Disquieting (2019) to demonstrate how previous feminist scholarship on anorexia has been contested, repurposed, and challenged in favour of new modes of self-representation. The collection draws on the history of sexual violence, working-class experiences, and theories of the body to scrutinise and unsettle the cultural meanings assigned to women with anorexia.

Illness reshapes how people inhabit their bodies, altering movement, posture, perception, and relational orientation in ways that often remain invisible within clinical discourse. Drawing on phenomenological accounts of embodiment, this presentation examines how graphic medicine—the intersection between comics and medicine—makes these disruptions visible. In particular, graphic pathographies, which are illness narratives in graphic form, depict what it feels like to live with illness and to receive medical care. Although medicine has a rich visual culture through anatomical diagrams, imaging technologies, and clinical charts, these forms primarily represent the clinical body, which is measurable, segmented, and objectified; they show structures and pathologies but rarely convey how illness is lived from the inside. Graphic pathographies fill this gap by contextualizing illness within everyday experience and the dynamics of clinical encounters. Through multimodality, comics externalize sensations and emotions that typically remain hidden in medical settings, showing how illness alters orientation, bodily intentionality, body image, and the relational dynamics of care. A shrinking figure, a heavy body, an opaque gaze, or a distorted sense of space communicate vulnerability, uncertainty, and temporal disruption in ways that exceed verbal description. Rather than illustrating symptoms, these drawings generate knowledge about the lived experience. This talk argues that graphic medicine expands how medical humanities can understand and respond to suffering, offering new ways to recognize what illness feels like from the inside.