Patienthood in the digital age: an ethnographic study of online adult attention deficit hyperactivity disorder (ADHD) patient communities in Korea

Abstract

Ever since its rapid popularization in past few decades, the Internet was attributed to one of the forces behind medicalization, with its power to endorse patient consumerism. However, less spotlight was given to what is actually said and how it is said inside online patient communities. By drawing on concepts such as illness narrative and knowledge system, this paper shows the formulation of collective illness narrative as a strategy to mitigate disbelief about their illness and questions regarding drug-taking behavior. This paper argues that digital ethnography is an effective research method to understand the patient cultures of ADHD adults in Korea, and engages in the discussion on methodological and ethical considerations of conducting ethnography in cyberspace. Based on these considerations, 6-months period digital ethnography was designed and carried out on 4 different communities for ADHD adults in the Korean web, including participant observation and in-depth interviews of 20 subjects. Findings suggest that user-patients put materiality of brains, genes, bodies, and pills at the center of their narrative to champion the state of being objectively different. Such narrative is highly dependent on the imaginary of high-resolution biotechnology that grants psychiatry epistemic authority. Finally, the concept of ‘digital patienthood’ is suggested, to highlight how digital representation of adult ADHD in patient communities is distinguished from our general, offline knowledge about the illness. This paper aims to provide a different scenario of medicalization process that is more complex than patient consumerist explanation.