Contesting Lyme Disease

In this chapter, the author examines his embodied experience with Lyme disease to chart how power and knowledge within the dominant biomedical framework were produced via engagement with medical providers. Analyzing the medical governance of Lyme disease through actors’ everyday decision-making practices, the author shows how, in failing to accurately diagnose and treat his sick body and depriving him of treatment, credentialed health care providers reproduced culturally dominant, institutionalized, yet inadequate formations of medical power-knowledge. The author’s experience of this disease illustrates how the manufacture of disease categories and their ascription regulates bodies that do not fit into established categories. Analyzing data from his own life in light of medical science research, the author advances an analytical autoethnography and dissenting embodied knowledge, legitimizing the diagnostic category of chronic Lyme disease, and introducing two concepts—contested disease and contested care—to theorize the complex phenomenon of Lyme disease.