Divided Bodies: Lyme Disease, Contested Illness, and Evidence‐based Medicine. Abigail A. Dumes, Durham: Duke University Press, 2020, 360 pp.
Divided Bodies: Lyme Disease, Contested Illness, and Evidence-based Medicine. Abigail A. Dumes, Durham: Duke University Press, 2020, 360 pp.
Prior to the shock of COVID-19’s intervention into public life across the globe, post-viral syndromes, PCR tests, and debilitating chronic symptoms were not on the tip of everyone’s tongues. As of this writing, though, an estimated 11.5 million people find themselves coping with a new set of long-term health issues after a coronavirus infection. Like sufferers of “long COVID,” people suffering with chronic Lyme disease have varying levels of visibility, mobility, and access to diagnostic and treatment practices. Advocates in chronic Lyme world are, in fact, hopeful that increased attention to long COVID will shine a brighter spotlight onto the needs of those navigating a medical landscape rife with disagreement about symptoms, signs, diagnosis, treatment, and even a basic lived reality of suffering for those who know they have chronic Lyme.
In Divided Bodies, Dumes documents her ethnographic engagement with mainstream and “Lyme literate” practitioners, patients, and advocates. She offers a deft examination of the epistemic, ecological, and economic conditions under which practitioners, patients, and policymakers come to know bodies and ailments in Lyme disease. This text can guide ethnographers and practitioners in understanding the stakes of the debate about what counts as real illness, whose suffering is legitimate, and under what conditions. As an ethnographic monograph respectfully attentive to patient experience, it also has the potential to support sufferers in making their suffering palpable. Through her focus on the dominance of evidence-based medicine Dumes argues that the figure of “medically unexplainable illness” serves as the “constitutive outside” of biomedical diagnosis and treatment. She outlines the ways that evidence-based medicine as a practice has created “a form of biolegitimacy that produces epistemic truths about the body” (p. 11) and that becomes “a platform for making claims to truth” for people across the Lyme practice spectrum. What counts as legible, true, and real ailments for mainstream medical practitioners are defined, she suggests, by what is not legible, true, and real—i.e., information that is deemed “weak evidence” or even not evidence at all. The key distinction she traces is that between symptoms reported by patients and signs observed through practitioner intervention (blood tests, neurological examinations, MRI scans, etc.). For Dumes, what counts as suffering is deeply related to what kind of evidence is made legible and legitimate, to whom.
Ethnographic practitioners are always called to be care-full when speaking with and about interlocutors, but Dumes goes beyond the usual attention. For instance, when speaking of a person who is suffering with symptoms that some practitioners define as “unexplainable,” she writes of “Madison’s … recognition of her symptoms as Lyme disease” (emphasis added). If she had instead written “what Madison now understood to be Lyme,” she would have highlighted the perception element of the patient’s reality in a debate where patientperception is frequently questioned. However, the term recognition allows for the patient’s truth-claim—that she is suffering—to emerge as more legitimate. To understand one’s symptoms is a frame that mainstream practitioners who doubt the existence of chronic Lyme might take. Dumes’s text wants to acknowledge the ways in which evidence-based medicine makes truth-claims possible from multiple positions. By saying “her recognition of her symptoms as Lyme disease,” Dumes indicates an internal realization, as the patient makes order from the chaos of suffering. She also gestures at the process by which the recognition was reached,including the patient’s long search for practitioners who “take them seriously,” and citizen science. Direct bodily experiencebecomes more trustworthy as an interlocutor’s form of knowledge, rather than the question of how the “real truth” might be known.
Dumes’s diction is guided by her ethnographic methods, as is the structure of the text itself. She focuses her ethnographic attention less on the “representation of the way things are” than on in “the way [things] are perceived to be” (p. 230). She frames attention to descriptions of truth claims, rather than the veracity of them, as part of a practice of “quantum ethnography”: occupying multiple perspectives at once, always. Attending to the minutia of situatedness in the production of knowledge and experience, she brings quantum ethnography into conversation with longstanding themes of situated, partial knowledge in feminist studies of science—one of two broader-scale interventions she makes in this text. The most potent way that this quantum metaphor works is in how it enables a different way of thinking about what engaging with one’s own situated knowledge feels like as an ethnographic observer. Quantum ethnography nods to the problem of objectivity, but instead of assuming the researcher attempts to achieve a thought-state free of all prejudice, it acknowledges the ways that the researcher is herself always filled with all the places that she has been and stories she has heard—and then builds from the simultaneity of thought that a researcher must be engaged in, when listening and observing in spaces of contested knowledge. Dumes’s granular level of attention to self-aware situatedness is instructive in terms of exploring the affect of ethnographic practice.
If the “quantum” as figure marks the simultaneity of knowing, not knowing, and knowing multiply in Divided Bodies, the figure of the rhizome structures the text and its narratives against encompassment and singularity; this is Dumes’s second major intervention in this book. Dumes highlights the nonlinear, nonbinary factors intrinsic to an understanding of controversy over chronic Lyme disease. Dwelling in nonlinearity allows Dumes to highlight the ways that biomedicine draws easy binaries (the right/wrong ways to be sick; medically explainable/unexplainable illness; to be worthy/unworthy of biomedical attention) as a key part of its diagnostic process, and that the production of binary oppositions is at the heart of epistemic differences among medical communities with regard to chronic Lyme. In particular, her discussion of what she calls an “epidemiology of affect” (p. 225) highlights the rhizomatic, nonbinary relations among humans, ticks, places, and ailments; it belies a lack of easy binaries “inside” and “outside” of body. The tension between affection and aversion to nature and its relation to who gets Lyme, and why, traces what she calls the epidemiology of affect. Most interesting is how the quantum/rhizome highlights the uncontainability not just of Lyme bacteria, ticks, and toxins, but also of ideas, knowledge practices, treatments, and responses to risk of exposure.
I come away from this book with a clearer understanding of how evidence-based medicine makes multiple kinds of truth claims accessible, and how the idea of evidence becomes an agent in all approaches to chronic Lyme/post-treatment Lyme disease syndrome. This degree of balance, reflected down to Dumes’s word choice, is masterful. Dumes potently elaborates the concepts of quantum ethnography and rhizomatic and nonlinear relation to evidence and truth, and Divided Bodies manages, unusually, to both position Dumes clearly, and also not give away her own convictions and leanings one way or another about which truths are true. In this, she has given a boon to her interlocutors and the field of contested illness studies: a field that may now burgeon with researchers and practitioners as we deal with the ongoing consequences of coronavirus and climate change. Pre-COVID, most abled people’s lives were cordoned off from those who suffer chronically. Dumes’s text offers insight into what it might mean to distinguish, in our research and writing practices as much as in the subjects of our research, what we mean by evidence, what we mean by knowledge, and how we hold multiple competing worldviews in the same frame, as we pay attention to the suffering of others.