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Chapter Two Cuenca, Lupus, and Chronic Illness 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, to explain why she needs a certain test or medication, and then she promptly forgets what she has been told. When she discusses lupus with someone unfamiliar with the disease, she usually tells them that it is a kind of blood disorder. While there may be elements of truth to that description, it is too vague to be at all meaningful, and that is her intention. Like so many others with lupus, Rosa finds it easier to gloss over the details of her condition, especially since she really does not understand them in the first place. With only a third-grade education, Rosa’s knowledge of biology is minimal, her abilities to comprehend the complicated dynamics of the immune system are limited, and her confidence to ask questions of her doctors is almost nonexistent. Typical of women of her poor, rural background, Rosa is extremely shy and quite compliant with her doctors, and she therefore asks them very few questions. She is painfully aware of the class differences between herself and these more educated elites, and she simply smiles politely with her eyes averted, rather than appear to be assertive or leave the impression that she questions their medical authority (see Darghouth et al. 2006). The few times I went with Rosa to her doctors I was taken aback at just how passive she was in their presence, and I worried that far too little information was being ex- 17 | Cuenca, Lupus, and Chronic Illness changed. She asked very few questions of her doctors, and she responded to their queries with only minimal detail. I could not help thinking that these were less than ideal doctor-patient encounters. For the most part, Rosa does some of what her doctors tell her to do with little real understanding, or perhaps even concern, for why, but worse than that, when she does not, usually for financial reasons, she generally keeps that information to herself. She does not want to disappoint her doctors, provoke them to order more expensive tests or medications, or appear to be ungrateful or ignorant for not following their advice. Outside their offices, however, Rosa reveals a profound suspicion of some of her doctors, and she questions if they are really buena gente (“good people”). The implication here is that buena gente are kind and patient people who practice medicine purely for humanitarian rather than financial reasons. Those doctors whom she would categorize as buena gente are sensitive to class differences and try whenever possible to make financial accommodations for their more “humble ” patients like her. Those accommodations might include reduced charges for office visits, free drug samples, and a willingness to help find laboratories and clinics with the best pricing. Over the years Rosa has seen several physicians and has yet to find one with whom she is completely comfortable. She was most happy with the physician who cared for her daughter Cecilia, but since her daughter’s death, she refuses to see him for fear that it would bring up too many sad memories. She does not blame him for Cecilia’s death, but she does not want to see him either. In contrast to chronic illness sufferers in Ecuador who are better educated and internet savvy, Rosa does not have much access to information about her illness. I saw no printed materials anywhere in Cuenca explaining lupus; there are no pamphlets or hand-outs that might help patients understand and communicate to others about their medical condition. Moreover, given Rosa’s low literacy levels, the internet, which she could access inexpensively in a local internet café, is not really an option for her. Her daughters have occasionally consulted websites for information about lupus, but one of them told me what she found there was frightening rather than comforting . In contrast to what one finds in the United States, there...

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