Abstract

The importance and power of the biomedical approach to health and illness cannot be under-estimated. It has underpinned Western understandings of medical science and technology; it has informed health systems and the training of medical personnel; and arguably it has become articulated in patients' experience of illness and treatment. The roots of this model are traced to the valorization of rational thought in the Enlightenment which, according to Lupton, was accompanied by the increasing professionalisation of medicine through university training of doctors and control over their licences to practice. Further, she argues the discovery of bacterial causes of scourges like tuberculosis, cholera and typhoid in the nineteenth century further increased the power and status of the profession to the extent that excellence in medicine became more closely associated with rigorous scientific knowledge than empathic bedside manner (84). The emerging doctrine of specific aetiology that evolved into biomedicine had replaced the older philosophical understanding of health as a state of equilibrium and disease as a lack of harmony between people and their environment (Dubos, 5-6; Morgan, Calnan and Manning 15). The patient's interpretation of illness and symptoms became reconfigured by the doctor as an identifiable disease state that can be investigated and (usually) treated, pharmacologically or surgically. Engel acknowledged the power of the biomedical model but labelled it reductionistic and dualistic. He said that it reduced illness to chemistry and physics and separated bodies from minds while conceptualising bodies as machines (131). Biochemical or biophysical abnormality becomes the criterion for diagnosis of the disease and the treatment of illness. The authoritative, objective, and scientific approach to medicine that constructs illness as not more than, but also no less than, a biochemical/physical effect of disease, in turn, constructs medical care as interventionist, scientific and empirical, but above all as the privileged domain of the physician. The same approach that defines the role of the physician ascribes a complementary but dependent role for the patient. The ill, after all, are expected to seek and then undergo treatment. Within such a paradigm, Parsons proposed an influential and much quoted set of institutionalised social expectations associated with the "sick role" to distinguish people who are ill from those who are well. Briefly, according to his theory, the sick person has some social privileges but also some social obligations: exemption from other normal social roles depending on the nature and seriousness of the illness; not responsible for the illness; should be motivated to get well; and should seek and co-operate with the treatment offered (436-37). Parsons' functionalism with its assumption of a homogeneous social structure and value system has attracted considerable criticism. At the very least, he did not differentiate between different medical conditions and their social and cultural implications. But, that said, his "sick role" or modified versions of it remains tied up with the biomedical framework of its context. Meanings of Illness or Minds, Emotions and Social Processes Ideas about illness (and wellness for that matter) are culturally dependent. Illness as the opposite of wellness, as non-health, is an impaired sense of well-being and in that sense at least, requires some self-diagnosis before treatment is sought. Individuals make judgements about their health against prevailing implicit standards of what it is to feel well (Eisenberg and Kleinman 13). As the cultural norms of illness change over time, what it means to be sick and what the "sick role" entails changes too (Christopoulos 93). The discursive label of illness, especially if the disease has specific moral connotations surrounding it, can have considerable consequences for the patient and their social identity to the extent that the "clinical label becomes a master status, one that swamps all other identities and compresses the identity of the person into a narrow and constricting mould" (George and Davis, 266) and circumscribes their sick role. Morris sees biomedicine as cultural discourse, specifically as a modernist narrative which is being challenged increasingly by "powerful alternative narratives that view human illness not as the malfunction of a biophysical mechanism but as the unique experience of a meaning-making and embodied cultural being" (7). Arthur Frank, Thomas Couser, Anne Hawkins and others have demonstrated how control of current understandings of illness is indeed moving away from medical practitioners and towards the patients themselves as they challenge the restriction and passivity of their sick role. The work of these researchers charts changing representations of illness as patients who choose to publish their narratives attempt to find meaning in their experience of illness. The narratives these people tell are often at odds with the biomedical accounts of their illness, or at least they are telling a different type of story - one that involves their reaction to and their experience of serious illness rather than just its onset, diagnosis, treatment and prognosis. These stories are sometimes triumphal accounts of overcoming illness, designed to inspire others in similar situations; sometimes dark, emotional accounts of overwhelming adversity and suffering. In providing such introspections of the meaning of illness for the patient's life (and even anticipations of death too), these texts re-negotiate the sick role. They are empowering accounts because they disrupt the sense of the sick role as a passive and silent state (Frank 3). The stories can be found in full length autobiographical accounts of encounters with serious illness like those discussed by Frank, Couser, and also Hawkins, but they are evident across a range of the mass media as well. Women's magazines are a particularly rich source where illness experiences of celebrities and ordinary folk are mixed in with other gossip, scandal, features and advice (Bonner and McKay 2000). Reality television shows (for example, those set in hospitals) also occasionally feature patients' experiences and their quest for meaning for their illness. While the internet offers unprecedented access to detailed medical information, dedicated sites also provide spaces for patients to tell their stories and chat rooms give the opportunity for patient-patient access and interaction in the absence of doctors. These electronic "virtual" communities provide new interactive forums for those with chronic conditions to discuss their fears, their needs and their activities (Patsos; Hardey). The texts produced by these media constitute a different version of the sick role and augment the meanings of illness by providing alternative or at least parallel resources to conventional medical interaction for those who are ill, their carers or those with vicarious interest. As Foucault demonstrated, medical knowledge, its associated "clinical gaze" and the representation of illness always need to be seen in its socio-historical context. The understanding of this "provides a perspective which is able to show, as does the cross-cultural perspective offered by anthropology, that the conventions of western biomedicine are no more 'scientific' or 'objective' than medical systems in other cultures or in other times" (Lupton 15). This type of approach does not necessarily call into question the medical definitions of disease, but points out the limitations of biomedicine without due attention to more cultural approaches. In that sense, the proliferation of patients' stories should be seen as a reaction to (rather than a rejection of) biomedicine and its modernist perspective that situates illness more in the professional domain of the doctor than in the experiential domain of the patient. Indeed, as Morris notes, "modernist biomedicine with its dualistic and reductive language of disease mechanisms now co-exists uneasily with a new concern (irreducible to mechanisms) for the role played in illness by minds, emotions, and social processes" (7). References Bonner, F., & S.McKay. "Challenges, Determination and Triumphs: Inspirational Discourse in Women's Magazine Health Stories." Continuum: Journal of Media and Cultural Studies 14.2 (2000): 133-144. Christopoulos, Katerina. "The Sick Role in Literature and Society." Journal of the American Medical Association 285.1 (3 January 2001): 93. Couser, G. Thomas. Recovering Bodies: Illness, Disability, and Life Writing. Madison: University of Wisconsin Press, 1997. Dubos, René. "Mirage of Health". Health and Disease. Ed. Nick Black. Milton Keynes: Open University Press, 1984. 4-9. Eisenberg, Leon, and Arthur Kleinman. "Clinical Social Science." The Relevance of Social Science for Medicine. Ed. Leon Eisenberg and Arthur Kleinman. Dordrecht: Reidel, 1981. 1-23. Engel, George. "The Need for a New Medical Model: A Challenge for Biomedicine." Science 196.4268 (8 April 1977): 129-36. Foucault, Michel. The Birth of the Clinic : An Archaeology of Medical Perception. Trans. A.M. Sheridan Smith. London: Tavistock, 1973. Frank, Arthur. "Reclaiming an Orphan Genre: The First-Person Narrative of Illness." Literature and Medicine 13.1 (Spring 1994): 1-21. George, Janet, and Alan David. States of Health: Health and Illness in Australia 3rd ed. South Melbourne: Addison Wesley Longman, 1998. Hardey, Michael. "Doctor in the House: The Internet as a Source of Lay Knowledge and the Challenge to Expertise." Sociology of Health and Illness 21.6 (1999): 820-835. Hawkins, Anne. Reconstructing Illness: Studies in Pathography. West Layfayette: Purdue University Press, 1993. Lupton, Deborah. Medicine as Culture: Illness, Disease and the Body in Western Societies. London: Sage, 1994. Morgan, Myfanwy, Michael Calnan, and Nick Manning. Sociological Approaches to Health and Medicine. London: Routledge, 1985. Morris, David. "How to Speak Postmodern: Medicine, Illness, and Cultural Change." The Hastings Center Report 30.6 (2000): 7-11. Parsons, Talcott. The Social System. Glencoe, Ill.: Free Press, 1951. Patsos, Mary. "The Internet and Medicine: Building a Community for Patients with Rare Diseases." Journal of the American Medical Association 285.6 (14 February 2001): 805.

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