"I Cannot Be Worried": Living with Chagas Disease in Tropical Bolivia

Background: Chagas disease (CD) profoundly affects the social and emotional dimensions of patients’ lives, and disproportionately impacts poor, marginalized populations in Latin America. Biomedical treatment for CD fails to reach up to 99% of the people affected, and in any case seldom addresses the emotional health or socioeconomic conditions of patients. This study examines patient strategies for coping with CD in the department of Santa Cruz, Bolivia. Methodology: In this ethnographic study, semistructured interviews took place from March-June 2013 with 63 patients who had previously tested positive for CD. During the fieldwork period, participant observation was conducted and patient family members, providers, community members, and public health officials were consulted. Principal Findings: Patients often experienced emotional distress when diagnosed with CD, yet were generally unable to find biomedical treatment. Respondents stressed the need to avoid powerful emotions which would worsen the impact of CD symptoms. To manage CD, patients embraced a calm state of mind, described in Spanish as tranquilidad, which partially empowered them to return to a normal existence. Conclusions: In the perceived absence of biomedical treatment options, patients seek their own means of coping with CD diagnosis. Rather than fatalism or resignation, patients’ emphasis on maintaining calm and not worrying about CD represents a pragmatic strategy for restoring a sense of normalcy and control to their lives. Programs focused on treatment of CD should remain mindful of the emotional and social impact of the disease on patients. Author Summary: An estimated 99% of people with Chagas disease do not receive treatment. I interviewed 63 patients with a diagnosis of Chagas disease at a rural clinic in an endemic area of Bolivia. Only 4 had obtained biomedical treatment. Although the departmental government provided free medication for Chagas disease, this was not typically available for adults in patients’ communities, and additional costs such as consultations and cardiologic examinations were prohibitively expensive for this marginalized population. Travel distances and contradictory messages from providers also made it difficult for patients to access treatment. Furthermore, patients believed strong emotions would worsen the symptoms of their Chagas disease, yet often felt anguished or worried when diagnosed. To deal with the emotional impact of the disease and restore normalcy to their lives, patients adopted a strategy of remaining calm and minimizing worries about Chagas disease. This is not fatalism or resignation, but a pragmatic strategy patients utilize to feel more in control of the disease. Treatment programs need to consider the emotional and social implications of Chagas disease in addition to addressing structural barriers which impede treatment.