Met•ag•no•sis, n. [/ˌmɛtəˈnəʊsɪs/]. Etymology: from μετα- across, changed, different, after + γιγνώσκειν to learn to know, perceive.
1. The revelation of a longstanding undetected condition effecting a change in the terms of knowledge.
a. Medicine. Diagnosis of a previously unobserved pathology, such as becoming aware that one is colorblind. May also occur when the diagnostic classification has shifted, as with the emergent and changeable category of autism spectrum disorders.
b. Identity etc. Revelation of knowledge bearing upon selfhood, such as genetic testing indicating genealogy differing from one’s prior awareness.
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 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.
"Danielle Spencer has the gift of seeing that there is always more: another layer of meaning, another instability of claim or category, another connection in which two elucidate something about each other. When colleagues outside health humanities ask what the field can accomplish, this book is now my answer."
"[Metagnosis] is a landmark and deeply imaginative contribution to work at the interfaces of biomedicine, psychiatry, humanities, literature, popular culture, cultural studies, disability studies, memoir, and personal narrative.…[It is] not only a lively and enjoyable read; it is an education and masterclass in the uses of literature and humanities for understanding and navigating health, health care, and embodied identity more broadly."
"This intimate narrative approach democratizes theory.…By generating for us a language from which to engage in conversations that were previously unavailable to us, [Spencer] not only vindicates the experiences many have had with these sorts of retrospective revelations, she also provides for us a call to action or at least a call to conversation. With this newfound language, we can be invited to communalize what may seem like deeply personal and isolated events."
"Metagnosis constitutes an important contribution to many different areas of scholarship across the humanities (medical and nonmedical alike) and the health sciences. Narrative theory may have its origins in literary theory, but Spencer convincingly argues for its usefulness as an epistemic tool in medicine, and her decision to enact interdisciplinarity in her writing is a strong statement in favor of revising the epistemic assumptions behind academic formatting conventions (and therefore academic communication). This book would appeal to philosophers, medical practitioners, sociologists of medicine, health science educators, scholars of interdisciplinarity, disability scholars, disabled activists, and patients who want to learn more about the diagnostic process."
— Élaina Gauthier-Mamaril, “Metagnosis: Revelatory Narratives of Health and Identity by Danielle Spencer (review).” International Journal of Feminist Approaches to Bioethics 15, no. 1 (2022): 198–202. PDF
"I really love this book. It incorporates elements of memoir but also scholarly work, referencing so many different thinkers and authors and writers across time and space, and is a wonderful resource for anybody who is interested in thinking about the interaction between patients, illness, disease, sickness, narrative and storytelling and how it all fits together. […] Thank you so much, Danielle, for bringing your brilliance and your genius onto the page and here onto the Nocturnists podcast."
— Emily Silverman
"You've written an incredibly dense and lucid book… a book about not knowing, and about knowing better. […] What strikes me is the movement of this extraordinary study that you’ve written—the arc of the book, as I see it, goes from David Byrne to Roland Barthes."
— Paul Holdengräber, The Quarantine Tapes
“I think that [Metagnosis] is an extraordinary book. […] It's really rare in the broad general field that encompasses us both to encounter something that is genuinely original. And this book is full of insights that I had never had before. Indeed, it describes an entire category of experience—diagnostic in large part—and how it's played out in our society. And I think like, for example, Susan Sontag's Illnesses as Metaphor, it really changes the way that we think about things that we thought we knew all about. And so I don't have enough words of praise for what has been accomplished here, and accomplished, it should be added, in thrilling and readable prose, so that it remains deeply, deeply engaging. I mentioned Susan Sontag; it also has some of the kind of riveting charm of an Oliver Sacks book. It really captures the experiences of individual people and then draws profound conclusions from them."
— Andrew Solomon
“This book is remarkable in three entirely different ways: A remarkably researched piece of scholarship; a quite remarkable personal narrative; and it is just a truly, truly original piece of thinking. […] Metagnosis will, I think, become part of the standard of care for clinical ethicists. This will be a framing that we have a responsibility to share with patients and families and clinicians so that they can better understand both the gravity and the significance of a revelation in diagnosis, and what positive impact that can have on how they understand the remainder of what for them will be their complete life."
— David Hoffman
Deckard’s unicorn dream/reverie occurs about a third of the way into the Director’s Cut. In the final scene of the film, Deckard gazes upon the origami unicorn, and the shot reverse shot sequence moves the spectator into Deckard’s point of view, prompting one to imagine experiencing this type of revelation. Ridley Scott, dir., Blade Runner (Director’s Cut) (Burbank: Warner Bros., 1991).
“Unlike any other book I’ve read, Metagnosis is hard to describe but easy to praise. Radiant with originality, deeply researched, ever absorbing, this thrillingly ambitious hybrid of medical, cultural, and personal history is also a work of passionate imagination.”
— Sigrid Nunez, author of The Friend, winner of the 2018 National Book Award
“In this important and compelling volume, Danielle Spencer charts complex questions of self and identity, of normality and exceptionalism, exploring with elegance and skill the links between theory and personal experience. Her work is brave, lucid, and insightful.”
— Andrew Solomon, winner of the National Book Award; author of National Book Critics Circle Award-winning Far from the Tree: Parents, Children and the Search for Identity
“Effortlessly moving from theory to practice, from lived experience to philosophy, this book is both an astute analysis of the history of medicine and a stunning prediction of its future. In Spencer’s wonderfully insightful and highly analytical prose, diagnosis is not the end of a search for knowledge but only its beginning. Metagnosis is an invaluable resource for medical practitioners and patients alike. A stunning book and a rare achievement.”
— Mita Banerjee, author of Medical Humanities in American Studies: Life Writing, Narrative Medicine, and the Power of Autobiography
“Metagnosis is a brilliant, nuanced, and exciting exploration of the multiple ways people come to understand a medical 'condition.' Moving deftly from one discipline to another as she examines their various epistemologies, Spencer pries open her own story and the stories of others. She interrogates the grand cultural narratives and reductionist models that have shaped medicine and exposes their limits, their meanings, and their politics. This is a book that blasts apart conventional categories and pushes its reader to think again. I loved it.”
— Siri Hustvedt, author of The Blazing World, long-listed for the Man Booker Prize and winner of The Los Angeles Book Prize for fiction
“Metagnosis is masterful, original, filled with electric thinking, sparking, glinting, illuminating corners so dark we didn’t know they were there. In today’s storytelling fever, all who tell and listen to stories need deeply perceptive guides who provide conceptual and practical frameworks for interpreting narratives’ complexities. Danielle Spencer has emerged as a rare intellectual quester and pioneer who provides theoretical and methodological clarity to narrative medicine and all such efforts to comprehend the lives lived around illness, health, and care.”
Praise for Metagnosis