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Open Access Publications from the University of California

Not Yet Cured: Taiwanese Hansen's Disease Patients Living with Sickness after Treatment

  • Author(s): Hung, Yi-ling
  • Advisor(s): Timmermans, Stefan
  • et al.

This dissertation offers an in-depth look into the paradoxical existence of patients who were cured but still sick. Modern treatment for Hansen's Disease (HD) redefined the disease as a curable one and successfully eradicated it from Taiwan. Despite these, some patients remained sick. Issues regarding the existence of these patients were often complicated by the symbolic meanings of the disease as well as the protracted institutionalization of patients. In the last ten years, the renovation of the HD hospital in Taiwan has attracted the public's attention, which in turn has raised the Taiwanese government's awareness of the human rights issue of patients. However, the actual relationship between patients' experiences and the medicine that treated them remain largely unstudied. The dissertation is based on historical data, interviews with patients and medical workers, and two years of ethnographic research in the HD hospital in Taiwan that has accommodated HD patients since 1930. I examine the processes through which a synthetic compound became a cure for HD and facilitated medical understandings and practices that emphasized HD's etiology. I also examine how patients continue to live with a stigma resulting from the interplay between the new medical understandings of HD and their body-biography trajectories already shaped by the disease. To live with bodies without sensations, patients have to constantly attend to the mechanics among the various objects involved when using their bodies for conducting daily activities. These efforts for managing stigma and disabilities were invisible in the current medical practices for HD, which were organized around mass treatment. The main argument is that the same change in medicine that led to a redefinition of disease and enhanced the overall efficacy of medical practices may also render individual patients' experiences irrelevant. Life after being "cured" is still pretty difficult to the patients I studied. Only to these individuals, in whose life time an effective treatment for HD became available, did the disease become something that could have been cured and yet continued to shape one's identity and daily lives. However, patients have come up with strategies to make sense of their sickness, cope with disabilities, and make serviceable a medicine that does not see what they have as an authentic disease--strategies sometimes including nothing else but to face and live with the sickness they still have.

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