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Living with Lupus

Living with Lupus: Women and Chronic Illness in Ecuador

Ann Miles
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  • Book Info
    Living with Lupus
    Book Description:

    Once associated only with the wealthy and privileged in Latin America, lifelong illnesses are now emerging among a wider cross section of the population as an unfortunate consequence of growing urbanization and increased life expectancy. One of these diseases is the chronic autoimmune disorder lupus erythematosus. Difficult to diagnose and harder still to effectively manage, lupus challenges the very foundations of women's lives, their real and imagined futures, and their carefully constructed gendered identities. While the illness is validated by medical science, it is poorly understood by women, their families, and their communities, which creates multiple tensions as women attempt to make sense of an unpredictable, expensive, and culturally suspect medically managed illness.

    Living with Lupusvividly chronicles the struggles of Ecuadorian women as they come to terms with the experience of debilitating chronic illness. Drawing on years of ethnographic research, Ann Miles sensitively portrays the experiences and stories of Ecuadorian women who suffer with the intractable and stigmatizing disease. She uses in-depth case histories, rich in ethnographic detail, to explore not only how chronic illness can tear at the seams of women's precarious lives, but also how meanings are reconfigured when a biomedical illness category moves across a cultural landscape. One of the few books that deals with the meanings and experiences of chronic illness in the developing world,Living with Lupuscontributes to our understanding of a significant global health transition.

    eISBN: 978-0-292-74466-0
    Subjects: Anthropology, Sociology, History

Table of Contents

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  1. Front Matter
    (pp. i-iv)
  2. Table of Contents
    (pp. v-vi)
  3. Acknowledgments
    (pp. vii-xii)
  4. CHAPTER ONE Introduction
    (pp. 1-15)

    In 2000, rosa quitasaca, an ecuadorian woman of “humble” rural origins living in the third largest city in the country, fell seriously ill. Rosa, who was in her forties, was known to be emotionally sensitive and physically delicate, and she often complained about the sadness and exhaustion she felt because of the multiple trials and burdens in her difficult life. Given this, at first, no one in her family really paid too much attention to her complaints. Her symptoms came on rather slowly, starting with fatigue and the seemingly normal aches and pains of aging. But then, almost overnight, things...

  5. CHAPTER TWO Cuenca, Lupus, and Chronic Illness
    (pp. 16-37)

    It is unclear to me how much rosa really understands about lupus. She knows, of course, from personal experience, that it is debilitating, that it can run in families, and that it can sometimes be deadly. Moreover, although she does not always do it, she knows that she is supposed to take care of herself, which means taking her medications, seeing her doctor regularly, and not allowing herself to become overtired. However, her knowledge of the specifics of her condition, for example, that it is autoimmune, is vague and frankly uninformed. She counts on her daughters, especially the eldest, Alejandra,...

  6. CHAPTER THREE Health Care in Ecuador
    (pp. 38-56)

    By the time rosa was diagnosed with lupus, she had been very sick for several months. During her illness she was hospitalized a number of times, and her family had already mistakenly been told that she had a range of serious health problems. She would sometimes get a little better after some medical intervention, a blood transfusion, or a new medication but then fall desperately ill soon after. When she was finally diagnosed with lupus, there was no sense of relief for her or her family, as is sometimes the case, since she and her children had very little idea...

  7. CHAPTER FOUR Liminality
    (pp. 57-78)

    One of the unexpected outcomes of rosa’s lupus is that her husband Lucho and I have become much better friends. He and I met over twenty years ago when I was in Ecuador for the first time, and at the start we were somewhat wary of one another. I knew Rosa for several weeks before I met Lucho, since he was a long-distance bus driver and was oft en gone for days at a time. Before I met him, Rosa had told me that I would surely like him because, as she explained, he had a great sense of humor....

  8. [Illustrations]
    (pp. None)
    (pp. 79-99)

    By 2004 rosa’s health had stabilized, and she was feeling better physically and psychologically. She was no longer “afraid of everything” and “living inside her own head.” She was also relieved to be spending less money on doctor’s visits and medications. Finally, she could begin saving for other things. Her family life had returned to normal as well: Lucho was still in New York working; her son and two youngest daughters were back in school full time; and her eldest daughter, who was so crucial to navigating the medical system, had moved to Quito where she was completing a medical...

  10. CHAPTER SIX Suffering
    (pp. 100-120)

    When i visited with rosa eighteen months after she was diagnosed with lupus, I thought she looked terrible. Her face was swollen and distorted by the steroid use, and it had a distinctively ruddy color. She moved very slowly and cautiously, shuffling her feet as she walked, and she seemed to lack interest in, and have difficulty following, conversations. She now wore pants regularly to stay warm, something she told me once she could never do. She grew up in the countryside wearing thepolleraskirt, and while she had shifted to more modern skirts a few years earlier, pants...

  11. CHAPTER SEVEN Transformation
    (pp. 121-141)

    For those with few economic resources in Cuenca, the municipal cemetery is the only place to bury the dead. Although the Catholic Church now officially accepts cremation under some circumstances, the long church history of banning cremation, combined with its continued ambivalence towards the procedure, has made Ecuadorians, in general, loathe to cremate the recently deceased. Burial, though expensive, remains the preferred option. The cemetery in Cuenca is on the outer fringes of the central historical district and its gated landscape mirrors that of the rest of the city. There is a section with some very well-tended marble crypts surrounded...

  12. CHAPTER EIGHT Living with Lupus
    (pp. 142-154)

    When i last saw rosa, she was doing remarkably well. She had moved to the new two-story home that she was still in the process of building, and she enjoyed cooking in her well-equipped kitchen and gardening in the yard. She planted several fruits trees, has a small patch of herbs for cooking and making teas, and has seemingly commandeered every planter and tin can she could find to house a flowering plant. For the first time in her adult life she now lives in a place that is her own. Rosa lives with only two of her children now,...

  13. Notes
    (pp. 155-162)
  14. References
    (pp. 163-176)
  15. Index
    (pp. 177-184)