6 - The narrative representation of illness

Summary

In 1988, I spent the summer in Turkey with my wife Mary-Jo and a group of Turkish colleagues interviewing persons who had been identified as suffering seizure disorders by members of an epidemiological research team. The researchers were conducting a four nation study of the community prevalence of epilepsy, types of treatment and social disability associated with the disease, and the response of the condition to various medications, with the support of the Pharma International Division of Ciba Geigy. Our goal in collaborating with this project was to develop a set of anthropologically oriented case studies, drawn from a community sample (in contrast to more common clinical studies). The community base for the sample, the availability of neurological data on all individuals, and the link to an epidemiological study made this a special opportunity. We invited persons identified as suffering seizure disorders, along with their families, to tell us stories about their illness and to describe their illness experiences – to tell us about their seizures, their efforts to find effective treatment, the responses to their condition by persons in their community, and the effects of the illness on their lives.

The larger project began with a public health concern. Figures indicate relatively low utilization of anti-convulsive medications in much of the Third World, although clinical evidence suggests that seizure disorders are prevalent. Anecdotal data and a few published reports indicate that epilepsy is not only prevalent but highly stigmatized in many societies, that it produces significant psychosocial disability and often leads to physical injuries suffered during seizures.