University of North Carolina at Chapel Hill Graduate School
Doi
Abstract
In the current age, patients and their healthcare providers must navigate the digital deluge of contradictory claims about sickness, health, and healing in print and online. Some would argue that access to more data is better, whether it is generated by clinical trials or online discussion boards. However, for those who deal with chronic and contested health conditions like Lyme Disease, the most common and rapidly spreading tick-borne infection in the United States, more data means more problems. My dissertation, The Empowerment Paradox: Rhetorics of Lyme Disease and the Future of Chronic Illness, argues that patient empowerment efforts do not merely help patients to access reliable health information nor find compassionate healthcare providers. Instead, corporations, clinicians, and other stakeholders use empowerment rhetoric unethically to persuade patients to share their health data, seek out specialists who charge astronomical fees, and perform extensive labor in a quest to find the “right” healthcare information. These underhanded persuasive efforts lead to a problem I call the empowerment paradox: widely accepted rhetorical moves often considered empowering—such as teaching patients to research their medical conditions online, prompting patients to share information about their illnesses on social media networks, and using digital platforms to advocate for patient-centered healthcare practices—may be disempowering and harmful. In the broadest sense, my dissertation reveals how patients are subjected to the empowerment paradox, which means that they must navigate the conflicting, unofficial, and unauthoritative data circulating in our digital information economy, in search of a cure. There is much at stake. Patients are desperate to help themselves, and they do gain significant rhetorical and health literacy, yet their expertise does not lead to better health outcomes. Worse yet, chronically ill people are being used and abused for their money and health data. Using Lyme Disease as a case study, each dissertation chapter illustrates how devastating the empowerment paradox can be for patients. To show how the empowerment paradox works, I rhetorically analyze online sites of patient empowerment and interviews with twenty-three Lyme Disease patients.Doctor of Philosoph
