This thesis required extensive cyberethnography.
Chemical Reactions is my master’s thesis for my MS in Community Development. It is a mixed-methods exploration of online illness communities, and how people learn to navigate internal uncertainties on social media. It draws on ethnographic + qualitative methods, feminist theory, and science and technology studies (as well as some armchair brain science).
Neuroendocrine conditions (illnesses impacting the relationship between the nervous system and hormone function) are complex, often manifesting as overlapping layers of physical, cognitive, and emotional symptoms. As such, these conditions are highly specialized and often difficult to diagnose, treat, and receive adequate social support for. This project is a mixed-methods investigation of neuroendocrine support groups on Facebook, wherein I examine the difficulty of identifying and finding help for these nebulous neuroendocrine experiences as they slip fluidly between chemical, emotional, cognitive, situational, and social planes. Drawing on autoethnographic accounts of my own patient experience, ethnographic observations of Facebook support communities, and in-depth interviews with patient advocates and Facebook group administrators, I ask how people make sense of the embodied hormonal experiences that biomedicine might not provide satisfying answers for, and how neuroendocrine patients utilize online communities to help parse mind-body experiences that are deeply felt but also invisible, mysterious, and easily misunderstood.
Part one focuses on evidence and medical legitimacy: how people use Facebook support communities to plug the informational gaps in their own diagnosis and treatment paths, and the effects of these informational exchanges on patients and their social networks.
Part two focuses on the slipperiness between cognitive, emotional, and interpersonal experiences of neuroendocrine illness, and how patients conceptualize or compartmentalize their experiences to suit their individual needs. I suggest that facts and feelings are equally malleable — bended toward a variety of strategic, emotional, and social ends.
Jesse Drew (chair —Cinema & Digital Media)
Laura Grindstaff (Sociology)
Kalindi Vora (Gender, Sexuality and Women's Studies)