«Tactics of Diabetes Control Turkish immigrant experiences with chronic illness in Berlin, Germany. Cornelia Guell PhD by Research The University of ...»
Both cases demonstrate the conflicts that arise because diabetes management is done at home and patients are largely left alone to handle it. While the “clinical gaze” might be often perceived as intrusive, it might at other times be welcomed inasmuch it can offer “technical support” with a fairly lonely, often daunting and sometimes scary experience.
Michael Power (1997) explored our Audit Society’s affinity to practices of monitoring, checking and accountability. He traced how “methods of checking and “Hypo” is the colloquial term for hypoglycaemia when blood glucose levels drop too low (for what body cells require). With a hypo patients can feel dizzy, sleepy, faint, have blurred vision, headaches or sweat. If untreated, i.e. without a sugar boost, e.g. a glass of coke, hypos can lead to coma and death. In any case a hypo is a very unpleasant experience that takes a long time to recover from and was much feared by all my research participants.
verification” occur in situations of doubt and danger (Power 1997: 1). In his view, monitoring is a form of risk management and often perceived as a “risk reduction practice” (ibid. 5). Given that audits, practices of checking, however, are to a great extent formalised, they are often merely “cosmetic practices” which hide real risk (ibid. 123). Accordingly, risk management for my research participants might not necessarily mean avoiding risk but rather that the practice itself appeases anxieties over lurking risks. While the Foucauldian idea of surveillance is concerned with the clinical intention of accountability and discipline, the patients’ experience could be better understood in these terms of surveillance as risk management. Yet risk is, of course, an institutionalised concept with public health being a forerunner that enthusiastically embraces the notion of risk (Gabe 1995; Lupton 1994).
Epidemiology lists, predicts, estimates, factors in or controls for a whole range of risks to our health. One group of identified risks are inaccessible, environmental risks such as air pollution or biological risks such as family history and genetic susceptibility (Lupton 1994: 35). Public health interventions and biomedical prevention models often focus on those risks that can be known and avoided, “risks of self-destruction” such as lifestyle choices of smoking, unsafe sex and unhealthy diets that can be abstained from (Lane 1995: 54). However, risk is clearly not only an institutional, political concept but also an individual sentiment (Beck 1992; Gabe 1995), one that was at times very immediately experienced by my research
participants, for example when managing hyper or hypo blood sugar. Power (1997:
139) pointed out that while risk management is socially constructed, risks “are real and affect individuals in tangible ways”. Here it might help to distinguish risk and danger, with risk merely alluding to the possibility of danger. Carter (1995: 135) considered danger as a definite state of peril, whereas “the idea of risk is multifaceted, or Janus-faced, because it simultaneously points toward to the possibilities of security and insecurity”. This describes, in our case, also very well the ambivalence my research participants expressed towards their self-testing. Living with diabetes means to live with uncertainty, bodies that are out of control and cannot simply be fixed but need to be managed in some way. On the one hand, glucose self-monitoring is a tool to avoid and manage the danger these ill bodies can cause and calculate risk; on the other hand, self-testing can itself create anxieties and uncertain situations that were otherwise undetected.
Meters are therefore more than an artefact, more than the mere technology to check on diabetes and support the “number game”. Meters are sometimes trusted companions that provided such securities and sometimes loathed reminders of chronic, continuous illness. It could be argued that these objects of clinical testing are also subjects that possess agency to shape the experience with diabetes. The agency of objects is, for example, recognised in Latour’s (1987) Actor Network Theory approach to exploring complex networks by including objects (technologies, products) as actors for a more complete understanding of social relations and lives.
Meters define and negotiate the social spaces of danger and risk created by low or high blood sugar levels. They provide both security and insecurity. On another level they become incentives to attend information events or to become members of the self-help group. For many, being handed a glucose meter is the first tangible feature of diabetes self-management and the only remainder of “professional” support once home from patient education session, nutrition classes or self-help group meetings.
Summing up, my research participants were all encouraged by both health professionals and the self-help group to frequently measure their blood sugar levels.
Meters were handed to them by the group, their doctors or were purchased by themselves as one of their first active engagement with their illness. Although selftesting is only fully covered by health insurances and recommended to those who were taking insulin, it was common practice of all my patient informants. Glucose meters were often considered a painful nuisance and could be understood in Foucault’s (1986, 1991a ) ideas of the “clinical gaze” intruding people’s personal illness management practices as a form of “discipline” or “surveillance”.
However, I would argue that patients are actively engaging with this exercise, adopting their own clinical gaze in order to make diabetes visible. Here, Foucault’s “technologies of the self” (1990 , 1997) might serve better to understand such active engagement that serves a purpose independent of clinical (institutional) interests. “Docile bodies”, here are clearly replaced by engaged selves that try to challenge uncertainty. Yet I would propose that their motivation of self-care lied foremost in the lived experience of diabetes, emotional anxieties and embodied pains rather than a moral economy of diabetes control. Meters helped my research participants to make sense of their diabetes, and as poor diabetes control was only physically experiences at already very dangerous levels (close to hypo- or hyperglycaemia), meters could negotiate risk and reduce anxieties. They were daily companions who supported the often very illusive practice of controlling diabetes.
Making diabetes visible and tangible, however, was perceived as both comforting and distressing at times. Finally, insofar as patients assert their own agency on selftesting, one could equally presume agency to the technology itself. The simple testing gadget is an integral subject in the encounter with diabetes that transforms diabetes into a more concrete, visible experience. In any case, blood glucose selfmonitoring makes diabetes “manoeuvrable”.
Conclusion This chapter on monitoring diabetes tried to untangle some of the clinical aspects of living with diabetes. As diabetes self-management is confined to the idiosyncratic private spaces and practices of patients, clinical measures and their numeric expressions of blood glucose testing (as well as blood pressure testing and to some extend cholesterol measures and other check-ups) are means to extend the medical reach. This might be a complex story that has less to do with authority over clinical surveillance and more perhaps economic motives. My focus in this chapter, however, was not so much on the underlying mechanisms of encouraging self-testing but on the patients’ motivation and involvement. I regard this not as a matter of “black boxing” biomedicine, the efficacy of such procedures or the political agenda behind interventions. Rather, in my opinion it is not as interesting to investigate clinical intentions as it is to explore the individual, personal motivations of patients to adopt such practices and gadgets. After all such technologies could be resisted (as it is often done in the case of drugs that are unchallenged prescribed but dumped instead of taken)29. Also, I am not discarding Foucault’s notion of a discipline of surveying and monitoring diabetes status and progress, but using them to look at patients’ Several of my research participants admitted to have frequently not taken medication they got prescribed. Common concerns were unwanted side-effects that they read about or experienced (e.g.
Rana and hair loss with cholesterol medication, field notes 03.02.2007).
agency and objectives in such practices. I show that a clinical practice can be appropriated by those whose bodies are gazed at. I suggest that this follows two motivations. First, objectifying their diabetic bodies with abstract numbers is a tactic to make their illness experience more tangible or sharable. Second, watching and monitoring through blood sugar self-testing aims to make their diabetic bodies more predictable. On a final note, in this chapter, it is more fruitful to give up on trying separating the clinical from private, the professional from expert, or the abstract from the practical. Tests and numbers can be regarded as the link of knowledge and practice, as this chapter can link the previous one on the importance of “knowing diabetes” to the following chapter on “manoeuvring diabetes” with everyday practices of diabetes control.
Chapter 6: Manoeuvring diabetes
This chapter is about the day-to-day practices of diabetes control that are led and shaped by the knowledge and skills my research participants have acquired about diabetes, and that are assisted by and controlled for through regular monitoring. As in the case of “learning diabetes” and “monitoring diabetes”, the focus should be on the practical engagement with their diabetes control that is not merely an enactment of learnt and internalised biomedical “healthy living”-strategies but that follows individual motivations and experience. As I see such practices as ways of making experience and expectations (of managing one’s diabetes) habitable, I borrow de Certeau’s (1984) notion of everyday practices of ordinary people as “tactics”, as opposed to institutionally structured and dominating “strategies”.
In order to explore such tactics, this chapter will examine “fasting and feasting”, tracing how (mostly female) patients negotiate their diets, implement health recommendations into their and sometimes their families’ diets, elaborately amend recipes, and deal with the sociality of food and food practices. This chapter will also look more generally at how diabetes control is a decisive yet only partial aspect in their social lives, but how these complex social lives can be negotiated through diabetes control. Finally, this chapter should discuss my research participants’ motivation for handling their diabetes the way they do and their perception of a “good life”. I suggest that not only are their views on what constitutes a “good life” challenged by their experience of living with diabetes, but that our preconceptions of what could be considered a “good life” might require a different perspective. (Quite uncritical) assumptions in critical medical anthropology that public health’s “healthy living” stands in automatic opposition to what we might regard as “good life” has only little relevance to my research participants’ lives.
“Good” might in fact be the same as “healthy”, or rather “indulgence” might take a back seat in handling major complications of a serious illness (cf. Mol 2008).
6.1 Fasting and feasting While numbers and their prevalence in the everyday speech of my research participants were surely a peculiarity for me, another much more ordinary practice of diabetes control dominated my ethnographic exploration. Central to the social lives of diabetes is food.
Diabetes and diet Diabetes is a metabolic illness that is intrinsically linked to food consumption and digestion. Eating is the reason for digressing health, and it is the most effective way of controlling diabetes. Insulin and oral medication have never replaced nutrition as the main therapy of diabetes, while a strict diet can sometimes substitute any form of clinical intervention. Although type 2 diabetes is strongly linked to genetic causation, it is nutrition that can trigger, delay or altogether prevent the onset of diabetes. For many patients diet represented the epiphany of “suffering” from diabetes (with the diagnosis expressed as a life sentence of no more puddings). Both in German and Turkish, diabetes is colloquially known as “sugar” (German: Zucker, Turkish: şeker).
A diabetes consultant explained to me that along with the notion that people “have sugar” come “lay beliefs” that diabetes is caused by eating too much sugar and that the diagnosis of diabetes means the end to all sweets and puddings. Therefore any new patient must learn about the glucose cycle, pancreas and insulin and how its malfunction causes diabetes. Key is that people learn about the benefits of sugar in their blood, that it is about the balance of glucose in their blood stream not the absence and that the body needs to adequately process sugar in order to aid rather than harm their organs.
Dietary advice thus occupies centre stage in patient education sessions, selfhelp group meetings, TV health programmes and community events. The importance of diet is even more significant as for many people – and this certainly applies to my research participants – food has always been a very important part of their daily lives. Food can be comfort, connect to a distant home or bring families together at one table that might lead otherwise separate lives. Food is also the social glue and vehicle between friends, neighbours, a “community” or group. Social events are marked with certain foods and food practices. Food and diet means cooking, offering and eating, as much as creating, sharing and sensing.