Paper short abstract:

This paper explores the interplay between medical knowledge and illness experiences by focusing on a group of Hansen’s disease (HD) patients who became “orphaned patients”—patients whose illness experiences became irrelevant to the current HD medical knowledge and practices redefined by modern medication.

Paper long abstract:

Drawing on two years of fieldwork in the Losheng Hospital in Taiwan, this paper explores how a group of Hansen's disease (HD) patients develop an alternative sick role through reinforcing projects of re-embodiment and sociality around HD. HD became treatable and eradicated in Taiwan due to the introduction of diaminodiphenyl sulphone (DDS) treatment in the mid-20th century. As the medicine that existed when they first became sick became irrelevant, the HD patients I studied found themselves living with lingering symptoms that used to be seen as part of the disease but they had lost their sick role. I use the concept "orphaned patients" to highlight the patients' illness experiences that became irrelevant to the current HD medical knowledge and practices redefined by the modern medication. Through this analysis, I show that it was the same medicine that redefined HD as a curable disease that disassociated the definition of disease from patients' lived experiences. However, by developing a specific set of body techniques by collaborating with medical workers and fellow patients, patients are able both to legitimate each other's feelings of sickness and to use those feelings to manage their illness and, as such, to collectively acquire an alternative sick role. Adding to existing literature on bodies in practice, I reveal nuanced effects of the interplay between medical knowledge/practices and patients' lived experiences by demonstrating how medicine and the body with illness are constantly in transformation, along with the practices they become a part of.