Metagnosis (PDF)

Bridging memoir with key concepts in narratology, philosophy and history of medicine, and disability studies, this book identifies and names the phenomenon of metagnosis: the experience of learning in adulthood of a longstanding condition. It can occur when the condition has remained undetected (e.g. colorblindness) and/or when the diagnostic categories themselves have shifted (e.g. ADHD). More broadly, it can occur with unexpected revelations bearing upon selfhood, such as surprising genetic test results. Though this phenomenon has received relatively scant attention, learning of an unknown condition is often a significant and bewildering revelation, one that subverts narrative expectations and customary categories. How do we understand these revelations? In addressing this topic Danielle Spencer approaches narrative medicine as a robust research methodology comprising interdisciplinarity, narrative attentiveness, and the creation of writerly texts.

Beginning with Spencer's own experience, the book explores the issues raised by metagnosis, from communicability to narrative intelligibility to different ways of seeing. Next, it traces the distinctive metagnostic narrative arc through the stages of recognition, subversion, and renegotiation, discussing this trajectory in light of a range of metagnostic experiences-from Blade Runner to real-world mid-life diagnoses. Finally, it situates metagnosis in relation to genetic revelations and the broader discourses concerning identity. Spencer proposes that better understanding metagnosis will not simply aid those directly affected, but will serve as a bellwether for how we will all navigate advancing biomedical and genomic knowledge, and how we may fruitfully interrogate the very notion of identity.