Putting a Name to it: Diagnosis in Contemporary Society

  • Annemarie Goldstein Jutel
The Johns Hopkins University Press, 2011 200 pp., hardcover, $45.00 1421400677 | ISBN: 1-421-40067-7

In Putting a Name to it, Annemarie Goldstein Jutel looks at the process that lies at the heart of the doctor-patient relationship: making a diagnosis. Her gaze, however, focuses outside the usual private relationship to, as she writes, “expose in general terms how diagnosis is framed by society and culture and how, in turn, it frames the experience of illness.”

As a physician myself, I first learned about diagnosis as a verb in my third year of medical school when I got to observe the Sherlockian process of detection and deduction that doctors use to track down the culprit diseases of their patients. For Jutel, her first experience with diagnosis came after a series of doctor visits to explain a number of unsettling symptoms. “Receiving a diagnosis,” Jutel tells us, “is like being handed a road map in the middle of a forest. It shows the way—but not necessarily the way out.” Indeed, as her own experience proved, getting a diagnosis is only the first step in what is often a long process.

In the introductory chapters, the writer primarily focuses on the act of labeling and categorizing that is at the heart of diagnosis. These classifications, writes Jutel, are a “social creation,” dependent on society to decide what sick is and to “provide a cultural expression of what a given society is prepared to accept as normal and what it feels should be treated.” In these chapters, Jutel is at her best when she describes the social influence on these diagnostic categories even in the setting of measurable, observable and seemingly objective data.

One powerful example she gives is the “diseasification” of being overweight in the current obsession with obesity. “Fatness,” she observes, can be “pinched, prodded and photographed. It is hard to refute that it is there.” And yet although there can be no dispute about its presence, its meaning has changed. Being overweight, Jutel argues, has become “a disease rather than the simple descriptive adjective it used to be.” As a dangerous health condition, it becomes worthy of medical attention. This transformation, Jutel notes, is not supported by current medical research. Indeed, she points to several studies that suggest that being overweight is associated with lower mortality than being either normal weight or obese, rather than being an undesirable and unhealthy state.

It is a state that is healthier and yet is considered a disease. Why? Because of the social context created by the marketplace and by commercial interests, Jutel answers. The medicalization of plumpness, the author contends, is driven by the ability of an individual to diagnose his or her own condition, without the assistance of doctors, which allows for the influence of commercial interests—the physical fitness, diet and pharmaceutical industries—that stand to profit by selling to those who fit into this medical category. That is social framing in action.

In a more controversial vein, Jutel then moves on to examine what she calls “the contested diagnosis”—conditions that “are accepted neither by doctors nor by government or insurance companies yet are fully experienced by the individual as illness.” She sites fibromyalgia and chronic fatigue syndrome as two such conditions; they are chronic, disabling diseases of uncertain etiology, with no agreed-upon treatment. The contested diagnosis, Jutel argues, is fundamentally a conflict between the patient's understanding of his or her symptoms as an illness with the doctor's dismissal of these symptoms as not signifying disease.

Although these contested diseases may have different forms and presentations, once the physician exhausts his diagnostic armamentarium and cannot offer the patient a proper diagnosis a patient may be said to have Medically Unexplained Symptoms (MUS). At that point, Jutel tells us, the doctor's focus may shift from figuring out the cause of the symptoms (because the doctor has determined them to be medically unexplainable) to limiting additional resource expenditure. Jutel's rejection of what she calls a “wastebasket diagnosis” is likely to elicit protests from physicians who sit across from patients like this on a daily basis and who must answer this question at the end of each encounter: what am I to do for this patient today?

Over the course of this subtle and thought-provoking chapter, Jutel offers a couple of interesting resolutions to the conflict between the patient's sense of being ill and the doctor's inability to find a diagnosis. First, she reminds the doctor that the patient might have a disease that either hasn't been considered or hasn't been identified. Indeed, the diagnosis of MUS assumes the patient has misinterpreted some feeling as a symptom of pathology, and yet all too often in practice, doctors assume the source is psychosocial. Second, Jutel reminds us that there are other dimensions of such problems of the body that may be best handled by a physical therapist, dietitian or other paramedical specialist rather than a doctor. By reframing this issue as she does, Jutel changed my own perspective on this difficult patient population.

Although a bit academic in tone, and clearly (and perhaps proudly) not from a physician's point of view, the book is well written and a surprisingly pleasurable read. It gives the physician a glimpse at how this fundamental element to medicine—making a diagnosis—appears to those most affected by it—the patients. The book also reveals the ways society shapes our understanding of wellness and disease. It's not that medicine isn't a science, the book argues, it's that even science is shaped by the society that created it.