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Who Cares for the Caregivers?

Women in Romania face special challenges when they or a loved one becomes infected with tuberculosis (TB). I have watched countless patients crying into cell phones over problems at home; these same patients often slip out of the hospitals in the night to return to their families, only to arrive back at the hospital at death’s door. The process repeats itself, and many young women die. TB is an ancient, airborne, bacterial disease. Romania has been the site of one of the worst outbreaks in Europe since the late 1990s. In 2003, Romania had the second highest TB incidence rate in all of Europe and Central Asia. The rate has dropped somewhat, but 90.5 cases per 100,000 people means that each year about 20,000 Romanians get the disease. This rate is twentyfive times higher than that of the United States, more than five times greater than the European Union average, three times greater than Bulgaria, and seven times higher than Hungary. In fact, the only one of Romania’s neighbors with a worse TB situation is the Republic of Moldova. I have spent a total of more than two years living in Romania between 2006 and 2011, researching TB. During this time, I surveyed hundreds of patients and interviewed more than 100. I also interviewed dozens of doctors and NGO representatives, visited numerous hospitals and clinics, and even lived at one large mountaintop sanatorium for several months. I am fluent in Romanian, and all interviews and patient interactions were in Romanian. This eliminated the need for an intermediary and let me interact with the patients as naturally and informally as possible. My long stays at the sanatorium, relationships, and ultimately, friendships with some patients encouraged them to open up about their lives in a way that surveys or interviews alone would not encourage. Over the years, I became a part of the patients’ worlds, met their families, shared their joy when they were cured, and more often than I wish, held their hands as they died. They told me of their worst fears such as infecting their own children with the disease or sustaining permanent lung damage and becoming a burden on their family. I understand the real impacts of TB, especially the economic and emotional damage the disease causes, which are sometimes invisible to outsiders. Doing ethnography in a medical environ-