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Inflammatory bowel disease as a cultural artifact : an ethnography of the politics of suffering

University of British Columbia

This thesis is an analytical ethnography of the experience of chronic illness in the contemporary setting of a modern Western society. The substantive data is presented in the form of more or less extended narrative accounts from a number of unrelated individuals recounting and reflecting upon their situation. This is data collected from volunteer informants, in response to a publicised interest in contacting informants from within a particular local area who had been diagnosed as suffering from inflammatory bowel disease (IBD). The initial focus was limited to trying to determine how individuals reconciled themselves to the biomedical interpretation of their condition, which was known to be described as a chronic and sometimes fatal syndrome, of uncertain etiology, and for which there was no established cure. The ethnographic material, however, reveals that for some of the informants the full character of their conditions is not adequately subsumed by their received medical knowledge. In fact, it suggests that an appreciation of what is (or was) wrong with them lies much more in the domain of their handling of the symbolism of selfhood and in their response to the constraint of social authority. For, importantly contained in many of these accounts is evidence that a route to self-healing can be found in the active repudiation of medical knowledge and treatment, and in the development of a more autonomous mode of self-understanding. This possibility stands as the most dramatic implication of the ethnography, and one moreover that has continued to elude many of the informants who go on struggling with their pathology. The thesis then endeavours to show how and why cultural knowledge is deployed so differentially among a small collection of individuals having a particular physiopathological distress, as they construct meaningful interpretations of what is wrong with them. At this level, they construct that meaning from information gleaned from experience as a patient at the hands of medical and surgical practitioners; from other often long-standing relationships in which they frequently tend to view themselves simply as objects of wider social conventions and beliefs; and in some cases from an insistent discord between those contructs and the knowlege that appears to emanate from the self-destructive happenings within their own bodies. The focus here is on the dominant ideas brought to bear in reflecting on the meaning of illness and the nature of selfhood, especially those ideas that concern the symbolism and rhetoric of biomedical versus psychosocial interpretations of illness. The systematic elucidation of the points of linkage between disease progression, and its attendant surgical interventions, with concurrent events in the daily lives of the informants, stresses, at another level, the importance of acts of individuation and actions that promote self-knowledge. Here the thesis is concerned primarily with the critically different ways in which actions reflect the relation between a sense of identity and the projections of their selfhood made by significant others in their lives, not excluding medical practitioners themselves. The intertwining of these two levels of experience, illustrated by reference to the narratives, allows for the development of a theory that offers reasons why and how some individuals continue to be sick, or else recover. It is argued that there is a history embodied in the illness careers of these informants, representing a form of learning. This can be summarily described as one of the generation, maintenance and ideally eventual release from emotional restraint and from informal and formal social controls. It is argued that the same pattern of authoritative control is at work which generates the sickness and allows for the acceptance of impersonal diagnosis. It is also suggested that it is the physiological consequences of this pattern which produces the symptoms for which the remedy is sought. Finally, an argument is made that provides an ethnomedical acounting for the existence of the syndrome as a cultural 'product’, a rationalization of a particular way of treating symptoms. And for the individual sufferer, this biomedical logic which categorizes and explains the syndrome, once accepted and acted upon, reinforces already maladaptive behaviour in other settings and inhibits the learning process, thus further reducing the possibility of regaining health.

Text

2010-05-31

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http://hdl.handle.net/2429/25292

Anthropology

University of British Columbia

Graduate