ABSTRACT
When patients fall ill, they sometimes feel they lack the vocabulary to adequately communicate their subjective sense of suffering. The questions doctors ask in their efforts to get to the bottom of the problem may reveal a yawning gap between patients’ embodied experience and physicians’ conceptions of the meaning of a set of signs and symptoms. Doctors, too, say they are frequently frustrated by the complexities associated with communicating medical information to lay patients and the imprecise descriptions patients often give them as to the nature of their distress. Physician and medical anthropologist Arthur Kleinman reports that doctors often find patients’ accounts of what is troubling them characterized by “vagueness, multiplicity of meanings, frequent changes and lack of sharp boundaries between ideas and experiences” (Kleinman 1980:107). All of this can make it difficult for doctors to rely much on patients’ conceptualizations and explanations as they go about seeking to discover the causes, contexts, and precise manifestations of their patients’ suffering. Social analysts have therefore found it productive to analytically distinguish between “illness” – patients’ subjective experiences and personal interpretations, and “disease” – objectively identifiable clusters of abnormalities organized into discrete categories that provide the scientific basis for diagnosis, prognosis, and treatment (Hahn and Kleinman 1983; Helman 1985). But these neat distinctions easily lose meaning when applied to many of the neurodegenerative movement disorder patients in our study. As we will show throughout this monograph, patients sought to understand the cause of vague and variable symptoms of long duration that often not only failed to conform to a clear pattern for diagnosis, but also did not respond to any known treatment.
