Managing Diabetes. Jeffrey A. Bennett
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by questions of structure and agency, researchers have focused on the scene of the clinic and the interactivity between clinicians and patients to ascertain management’s benefits and deficiencies. These literatures, which draw provocative conclusions, tend to emphasize the operative force of the clinic in the lives of people with diabetes. Mary Specker Stone, for instance, scrutinized patient empowerment strategies by ruminating on the ways the body of a person with diabetes shifts from an active agent to a passive part of the medical scene, in the process actualizing directives that undermine patient agency.33 Echoing Foucault, she finds that those with diabetes “carry a bit of the clinic” wherever they go.34 Anthropologist Steve Ferzacca found that both physicians and patients embrace mutual commitments to abstract ideals such as discipline and health, but observed that patients articulated these shared notions to unconventional and idiosyncratic regimens that were rarely effective.35 Mol notes the contradictions that stem from clinical encounters, arguing that physicians must balance a delicate situation, providing spaces for sadness and reflection, but also encouraging patients by emphasizing the power of modern treatments to foster a healthy life.36 Still other scholars have found that ethnic differences have the effect of fortifying dominant medical models by isolating anything not intelligible to doctors as a matter of cultural, and not institutional, shortcomings.37 The focus on the clinic has produced much needed research, but it comes at the risk of cementing conceptions of health and well-being in institutional locations at the expense of enclaves where knowledge is produced and circulated in equal measure.38 Of course, there is good reason for this. The clinic provides a judicious and workable realm of study, where conclusions can be drawn with some degree of verifiable evidence and data that can be replicated.
Although medical advancements have enabled patients to assert more control over their conditions, providing them with strategies for maintaining wellness, the ways patient agency has been popularly imagined evokes its own anomalies. Lora Arduser has detailed the necessity to disarticulate patient agency from problematic frames such as “compliance” and move toward relationships that speak to the nuances of self-care.39 Patients can be enabled by agentic practices, but such strategies can produce as many limitations as they do possibilities for being healthy. For instance, the moving target of perfect control for people with diabetes, represented by the idealized glucose reading of 90, illustrates the recalcitrance of focusing exclusively on a narrowed goal for success. The injection of insulin is necessary for the stabilization of blood sugar levels. But, the substance also triggers experiences that are regarded as unmanageable. In their study of the semiotics of the term hypoglycemia, Mol and John Law captured the tensions that exist between methods of control with insulin and the ways people make sense of diabetes. Paradoxically, hypoglycemia is something that transpires because of control, not in spite of it.40 Rigorous regulation offers the prospects of longevity, but it comes at the cost of feeling ceaselessly out of sorts if hypoglycemia persists. It can also instigate neurological problems if sugar is regularly denied to the brain. Hypoglycemia incites harm, even as taking insulin is customarily regarded as promoting stability in blood sugar. Many insulin-dependent people can recall instances when they underdosed for the sake of not initiating hypoglycemia in a public setting, perhaps when giving a presentation or driving long distances on the highway. The contingent character of disease necessarily means that compromising and sometimes counterintuitive decisions need to be made. As David Morris reflects, disease and illness “always contain deeply practical imperatives: Something must be done, often quickly and with imperfect knowledge.”41 Translating medical ideals into lived praxis is not easily accomplished, and failures tend to be attributed to individuals and not the internal contradictions of management.
The moral imperative to conform to health strategies and remain robust is usually strong among those managing chronic conditions, even when life’s entanglements are unrecognized by people making judgments about such efforts. As a nurse practitioner who specializes in diabetes once told me, the hardest part of her job was convincing patients that having atypical blood sugars did not make them bad people. Management’s individuation can generate feelings of isolation and helplessness just as much as empowerment and control.42 When people with diabetes do not conform to numerical averages and social models of productivity, they are frequently left devastated by the results, particularly if blood sugar averages are persistently erratic. Control becomes closely aligned with positive values, “described as a marker of virtue, will, maturity, and autonomy; declining to control it indicated laziness, gluttony, or, simply, ignorance.”43 This resonates with the observations of disability scholars who find that any digression from the exalted norms of bodily productivity in a postindustrial society will lead to charges of dysfunction.44 The National Institute of Mental Health (NIMH) reports that people with diabetes are twice as likely to experience depression because of management fatigue and feelings of worthlessness.45 The NIMH conveys that stigma is strong for those who are perceived by themselves and others as not managing the body properly, evoking both physical and emotional turmoil. How individuals should care for themselves is well known among people with diabetes, but achieving health ideals can be more daunting than is sometimes imagined. Mol reminds us that what constitutes “improvement” in diabetes care is not always transparent. “Traditionally,” she argues, “health was the ultimate goal of health care. These days it rarely is. In chronic diseases health is beyond reach, and it has been replaced by the ideal of a ‘good life.’ But what counts as a ‘good life’ is neither clear nor fixed.”46 The individuation of disease and the moral implications engendered by management continually, if inadvertently, vacate the adverse aspects of disease in idiosyncratic instances.
Scrutinizing management heralds its own internal tension: We cannot confidently assert that management rhetorics deterministically structure life for people with diabetes, but neither can we assume that people with diabetes have complete agency over their disease at all times. On the one hand, those extolling the virtues of management habitually, if unintentionally, contend that people are granted “equal status as citizens,” overlooking structural disparities lurking in the laudable goals of healthy living.47 On the other hand, institutional directives do not perform a necessitarianism that guides every action of the patient. Despite stigma, shame, and the debilitating aspects of management, people find ways to make do and—consciously or not—evade overly prescriptive demands. This negotiation presents an important balance, especially when some studies have found that over-managing diabetes can be harmful. Diabetes requires a strong sense of prudence. It demands people to decipher the contours of disease by applying broad principles to specific situations. Such common sense is not easily developed and often requires years of arbitration between medical necessity and lived reality. As another health educator imparted to me when I was first diagnosed, people with diabetes must be cautious about the advice given by others—everyone thinks they know how to manage diabetes. A strong sense of what works for your body, and what does not, becomes imperative for survival. A prudential approach to care avoids generalizations that celebrate a machinist body or that reflect the worst impulses of the scientific method.
This attention to judgment, which demands that patients refine fundamental principles for situated action, is also instructive in that it suggests the varied nature of diabetes and allows us to resist easy conclusions about both etiology and management regimens. People with diabetes have discrepant experiences with the condition, and those lived realities foreground multiplicitous aspects of disease. Management always has the potential to slide into conceptual singularity. But a narrowed and ill-conceived conception of management, often adopted by people not in the medical sphere, can be deleterious when it is unreflectively applied across bodies and situations. Take something as simple as the stark classification system between types 1 and 2 diabetes. Commonsense renderings of the disease might tell us that people with type 1 developed the condition as children and type 2 later in life. And sometimes this is the case. Yet this assumption can be equally problematic. On at least one occasion I have had to convince a physician that I did not live with type 2 diabetes. The fact that I was diagnosed later in life led him to conclude that I had type 2 and that I might not need insulin. Age became a reductive marker for my disease, rather than the mysterious catalyst that actually triggered its onset. The meaning-making process underwriting management sometimes requires patients to revisit and rehearse the most basic aspects of living with a chronic disease. Those with diabetes must possess a surprising degree of social sagacity in order to stay well. Presumed understandings of diabetes can produce