Anna Derksen, Göttingen Academy of Sciences and Humanities in Lower Saxony
https://doi.org/10.58077/wqdm-3033
Historical research on medicine has long navigated between narratives of scientific progress and critiques of medical authority. To understand how medicine shapes lives – both historically and in the present – it is essential to conceptualize medical practice not merely as a set of treatments, but as a historical practice that both organizes and is transformed by experience: the processes through which illness, care, and wellbeing acquire meaning for historical actors. Medical experience is never solely personal; it is profoundly shaped by social norms, institutions, and political structures that constrain and enable ways of being ill, providing care, and resisting medical paradigms.[1]
This approach aligns with the critical medical humanities, which foreground lived experience alongside, and at times in tension with, the limits of biomedical knowledge.[2] Phenomenologists such as Maurice Merleau-Ponty have similarly argued that the body is not a mere biological object but a lived body, whose sensations and capacities attain meaning only through interaction with the surrounding world.[3] However, to fully historicize this insight, we must bridge the gap between phenomenological embodiment and the social structures of medicine. Rob Boddice and Bettina Hitzer propose a ‘biocultural’ model that shifts attention away from reconstructing lived experiences of dis-ease toward the historical reconstruction of the contexts that make medical experience possible. Experience, in their account, emerges through encounters between ‘body-minds,’ diagnostic frameworks, institutional authority, and cultural scripts.[4] Pain is measured and interpreted; symptoms are named and rendered intelligible; diagnoses reshape not only self-understanding but also relations with family, caregivers, and practitioners. By adopting such perspectives, the history of medical experience offers insights into the ways diagnostic categories, therapeutic techniques, and professional hierarchies do not just label illness, but fundamentally shape the sensory and affective reality of being ill.
To grasp how medicine and experience shape each other, I examine three overlapping dimensions – immediate, institutional, and interpretive experiences – each revealing a distinct yet interconnected facet of how illness and care are lived, structured, and understood.
Immediate Experience
I understand immediate experience to encompass sensory and affective aspects of illness – the lived, moment-to-moment realities of feeling, suffering, and healing. While earlier histories privileged institutions and authority, recent work foregrounds how medicine as a system shapes and interprets bodily experience by showing how sensations, emotions, and perceptions acquire meaning within particular medical and cultural frameworks.
An example is the nineteenth-century medicalization of childbirth. What had once been a communal, mainly female-governed event became a procedure dominated by male physicians. The transformation was not only institutional but experiential: As obstetrics reframed birth as a pathological process requiring expert supervision, women’s sensations of labour – pain, fear, anticipation – were reinterpreted as symptoms to be measured and controlled. Agency shifted from birthing women and midwives to medical professionals, which altered both practice and perception. But this process was not unilateral. Women continued to narrate, adapt, and contest medical authority, thereby shaping obstetric knowledge through their embodied accounts.
Similarly, chronic pain and other long-term conditions derive meaning within regimes that define what counts as normal or pathological. Illness diaries, patient letters, and clinical narratives reveal how individuals negotiate medical categories, sometimes aligning with them, sometimes reframing them. As Cheryl Mattingly observes, patients often craft narrative ‘plots’ that make sense of suffering and in turn influence how clinicians respond.[5]
Institutional Experience
Medical experience also unfolds within institutions, hierarchies, and systems of power that define the boundaries of care and healing. Drawing on Foucault and Butler, historians have shown how case notes and statistics do not simply record bodily states but actively produce categories of wellbeing, normality, and pathology.[6]
Twentieth-century eugenics policies make these dynamics especially clear. As Paul Lombardo and Gunnar Broberg among others have shown, sterilization programmes across North America and Europe imposed not only surgical violence but also a moral classification: certain bodies were rendered ‘unfit,’ ‘deviant,’ or ‘burdensome’.[7] These interventions reshaped how people experienced themselves and their communities, inscribing stigma and exclusion into the fabric of bodily life. Achille Mbembe’s notion of necropolitics further exacerbates this fusion of medicine and state power, in which institutions determine whose lives are sustained and whose are denied a future.[8]
Colonial medicine offers another lens on institutional mediation. In settings such as the Philippines (Anderson) or Nigeria (Sadowsky), biomedical practice displaced indigenous healing systems and redefined bodies in racialized and hierarchical terms.[9] Yet colonial encounters were never wholly one-directional. Patients and healers adapted biomedical forms to local needs, hybridizing knowledge and practice. The result was a contested medical space in which both domination and negotiation coexisted.
Institutional shaping also occurs at the scale of everyday care. As Annemarie Mol has shown, care is enacted through complex, interdependent networks that work through improvisation and negotiation rather than strict protocols.[10] Chronic illness often redistributes labour and emotion across families and communities, producing what Sara Wasson calls a ‘moral economy of care’.[11] These intimate forms of institutional mediation reveal how structural and affective inequalities intertwine: care can both alleviate suffering and reproduce dependency, and thereby reinforce the asymmetries that shape medical experience.
Interpretive Experience
Interpretive experience encompasses the cognitive and epistemic dimensions of medical life. Patients, practitioners, and communities alike participate in producing medical knowledge, a viewpoint that challenges the assumption that expertise flows only from science to society.
Feminist health movements exemplify this reciprocal process. As Imke Schmincke and others have shown, activists in the 1960s and 1970s confronted male-dominated medical authority through collectively reclaiming reproductive knowledge.[12] Self-help manuals and women’s health centres, to name just a few examples, reframed the body as a site of experiential expertise and expanded who could speak credibly about medicine, health, and wellbeing.
The AIDS crisis further demonstrated how lived experience could transform medical epistemology. Activists and people living with HIV/AIDS refused the passive role of ‘patients,’ insisting on active collaboration with researchers and demanding reforms in clinical trials and drug approval processes. As Steven Epstein has shown, they constructed and leveraged ‘lay expertise’ to gain credibility within biomedical institutions, participate in advisory and regulatory bodies, influence the conduct of research, and assert political claims based on their experiential knowledge.[13]
These examples show that knowledge and experience are intertwined: knowledge is always embodied, and experience is always interpretive. Medical authority depends on the credibility of certain kinds of experience – and, conversely, those who experience illness can generate new ways of knowing. Experience thus functions as both a site of compliance, of knowledge generation, and of epistemic resistance.
Conclusion
The interplay of immediate, institutional, and interpretive experiences shows that medicine and experience are mutually constitutive. Medicine shapes how bodies are felt, known, and valued, while experience continually feeds back into the making of medical knowledge and practice. For historians and scholars of experience, this reciprocity demands methodological balance: to emphasize resistance too strongly risks overstating agency, whereas to focus solely on discourse risks overlooking the material realities of pain and care. Yet it is precisely in this tension that the study of medicine and experience remains vital. By tracing how bodies, institutions, and epistemologies interact, we can see how experiences of illness, care, and healing are produced and shaped – and how, in turn, they reshape medicine.
Notes
[1] Deborah Lupton, Medicine as Culture: Illness, Disease and the Body (London: SAGE, 2012).
[2] Helen Viney, Felicity Callard, and Angela Woods, ‘Rethinking the “Critical” in Critical Medical Humanities’, Medical Humanities, 42 (2016): 3-8.
[3] Maurice Merleau-Ponty, Phenomenology of Perception, trans. Colin Smith (London: Routledge, 2012); Willemijn Ruberg, ‘Embodiment and Experience’, Digital Handbook of the History of Experience (2023).
[4] Rob Boddice and Bettina Hitzer, ‘Emotion and Experience in the History of Medicine: Elaborating a Theory and Seeking a Method’, Feeling Dis-Ease in Modern History: Experiencing Medicine and Illness, eds. Rob Boddice and Bettina Hitzer (London: Bloomsbury Academic, 2022), 3–19.
[5] Cheryl Mattingly, Healing Dramas and Clinical Plots: The Narrative Structure of Experience (Cambridge: Cambridge University Press, 1998).
[6] Michel Foucault, The History of Sexuality, vol. 1, trans. Robert Hurley (New York: Vintage, 1990); Judith Butler, Bodies That Matter (New York: Routledge, 1993).
[7] Paul A. Lombardo, Three Generations, No Imbeciles (Baltimore: Johns Hopkins University Press, 2008); Gunnar Broberg and Nils Roll-Hansen, eds., Eugenics and the Welfare State (East Lansing: Michigan State University Press, 1996).
[8] Achille Mbembe, Necropolitics, trans. Libby Meintjes (Durham, NC: Duke University Press, 2019).
[9] Warwick Anderson, Colonial Pathologies (Durham, NC: Duke University Press, 2006); Jonathan Sadowsky, Imperial Bedlam (Berkeley: University of California Press, 2012).
[10] Annemarie Mol, The Body Multiple (Durham, NC: Duke University Press, 2002).
[11] Sara Wasson, ‘Chronic Pain and the Moral Economy of Care’, Medical Anthropology Quarterly 33 (2019): 350–68; Alexandra Bacopoulos-Viau and Aude Fauvel, eds., ‘Tales from the Asylum’, special issue, Medical History, 60 (2016).
[12] Imke Schmincke, ‘Body Politic – Biopolitik – Körperpolitik’, Body Politics: Zeitschrift für Körpergeschichte 7 (2019): 15–40.
[13] Steven Epstein, Impure Science: AIDS, Activism, and the Politics of Knowledge (Berkeley: University of California Press, 1996).