"What's wrong with me?": cervical cancer in Venezuela--living in the borderlands of health, disease, and illness

Social scientists concerned with studying the social and cultural meaning of illness problematize the relationship between disease and illness, noting that illness can exist without disease--abnormal physical changes in the body. What has received less attention is the existence of disease--made visible through technological advances--in the absence of illness. Cervical cancer (or the more ambiguous cervical abnormalities) is an example of a disease that is largely symptomless in its early stages and can occur in the absence of illness. In this paper I explore how women seek to understand and negotiate cervical cancer in the context of their everyday lives, as they are confronted with seemingly disparate and contradictory physical and psychological states of well-being, sickness, and disease. This experience is what I call living on the borderlands of health, disease, and illness, where all of these states are experienced concurrently and boundaries between them blur. Through observations of patient-doctor interactions, ethnographic interviews with doctors and women seeking treatment for cervical cancer and pre-cancerous abnormalities, I analyze how women try to understand their medical experience. And they do so with the added challenge of little information being shared with them by the doctors who treat them. While patients do not ask many questions of their doctors, this does not mean that women are disinterested in their health. In fact, they develop strategies for eliciting clinical information about their medical conditions and actively seek to make sense of their experiences. By problematizing the concepts of health, disease, and illness, and avoiding the tendency to see these as distinct and contradictory phenomenon, we can gain a better understanding of their interrelatedness, and how people negotiate this borderland.