«Tactics of Diabetes Control Turkish immigrant experiences with chronic illness in Berlin, Germany. Cornelia Guell PhD by Research The University of ...»
Practical knowledge, then, meant that it explained both public clinical language and private illness experience and that it addressed social worlds that were not acknowledged in other formalised education. It also meant that knowledge had to be actively made practical and workable. General nutritional information in the form of food tables had to be amended to address Turkish meals, information had to accommodate religious practice and migrant lives partly lived abroad in different climate and environment. This shows that knowledge is not intrinsically abstract and its application translates into practice. My research participants also drew from a different body of knowledge that is not confined to clinical spaces and sciences.
Indeed this clinical, textbook knowledge is only gainful if combined with much more practical social knowledge. Patients, for example, tapped into rich knowledge, skills and experience on cooking when implementing diabetes dietary advice. Another set of knowledge is acquired through experiencing their illness, the embodied knowledge of diabetes, the body’s stress reaction to dangerously low blood-sugar levels, or the subtle and yet unsettling signs of too high levels that jeopardise eyesight or organ health. Bodies also “do diabetes”, as Mol and Law (2004) already stated, and practices of diabetes control are not confined to the enactment of clinical knowledge on bodies, but bodies also produce and contribute to diabetes knowledge practice.
In the practical engagement with knowledge and experiencing the instrumental property of knowledge, knowledge becomes more than something that is sought or rationed, or utilised to challenge power relations that hold knowledge.
Knowledge stemmed from social and embodied experience and was shaped and negotiated by such experience. In the following chapter, I will have a closer look at the most abstract element of diabetes knowledge and the most clinical side (and even site) of diabetes management, while Chapter 6 will explore the practical exercise of diabetes management. Chapter 5 will also take a closer look at the body. It should soon become clear, though, that one must move away from a dichotomy of abstract knowledge and practical lived experience. Abstract knowledge requires validation through practice, and abstraction gives meaning to experience.
Chapter 5: Monitoring diabetes
This chapter is about numbers and technology. As much as diabetes control is based in the “low-tech” everyday, this is not to say that it is not profoundly rooted in the clinical. In this chapter, I aim to explore the most clinical, medicalised facet of living with diabetes. In order to manage diabetes, patients learn about the necessity to monitor it. The clinical gaze on diabetes is extended from doctors and nurses who check on bodily functions and complications, to laboratory tests that assess long-term blood-sugar levels, to the everyday scrutiny of the patients themselves. Ideally, they should not only keep track of various check-up appointments, subsequent consultations and possible treatment changes, but also regularly measure their bloodsugar (and blood pressure) levels at home, keep detailed diaries that list these figures in neat categories of date, time and contributing social context, and finally observe their overall well-being, the subtle hints their bodies send out to communicate that something is not quite well.
I will particularly focus on the importance of numbers in the patients’ lives. I argue that numbers are important as diabetes control is arbitrary, based on selfobservation and experimentation, and numbers can help with this. Diabetes patients experience the importance of knowing about blood-glucose levels, blood pressure levels, cholesterol levels, and enter a routine of rehearsing and recognising clinical parameters of “too low”, “average for healthy people”, “average for diabetic”, “too high”. Illness status and the ill body are turned into a number – various numbers in fact – along metric scales that are often as arbitrary and complex as the symptoms and expression of the illness itself but appear linear and simple and, one could argue, agreeably impersonal. Far from being mere abstract entities, however, numbers have practical utility and meaning to those who juggle with them in the everyday.
Abstraction can not only support coping with often “too real” (sometimes painful, sometimes life-threatening, often irritating, always intrusive) illness experience but most crucially provides the necessary parameters to frame and organise this very elusive illness and steady their out-of-control bodies.
Intimately tied to this “number game” is the technology of blood glucose meters. While recent reviews on the evidence base of self-testing conclude that it has no benefit for type 2 diabetics (IQWiG 2009), the German Diabetes Union guidelines that include self-testing in type 2 diabetes education programmes have not yet been revised (Herpertz et al. 2003). Two years prior to this IQWiG24 review, at the time of the fieldwork, both family doctors and the self-help group encouraged my research participants to measure their glucose levels on a regular basis. All patients I have met owned a meter and enthusiastically used it despite the fact that monitoring is quite a costly exercise (each test strip costs EUR 1) that is rarely covered by health insurance. I suggest that meters are more than technological artefacts introduced by health professionals to survey (or discipline) their patients – although that is, of course, a reason why they are handed out (and can today be connected to computers to read and document weekly and monthly results). I would argue that patients use such meters to their own ends. Diabetic bodies are out of control and unpredictable.
Blood glucose meters help patients to visualise such unpredictabilities as poor diabetes control is only physically experienced at already very dangerous levels (close to hypo- or hyperglycaemia which leads to coma). Meters can reduce anxieties, and are daily companions that support the often very illusive practice of controlling diabetes.
5.1 Quantifying diabetes
Any first time attendee of Berlin’s Turkish diabetes self-help group was confronted with – and admittedly often put off by – a certain focus on a rather abstract way of understanding diabetes. Every session contained the inevitable moment when the group’s leader Yılmaz drew a series of numbers on the blackboard. The most common table I copied time and again into my little field note book (e.g.
field notes 21.04.2007) was:
Açlik kan şeker: [lit. hungry, i.e. fasting blood sugar] 70 – 99 ml25 100 – 126 ml IQWiG, the Institute for Quality and Efficiency in Health Care, is the German equivalent of NICE, UK’s National Institute of Clinical Excellence.
In fact, “ml” is the wrong unit here. It should read “mg/dl” (milligram per decilitre) or “mg%”.
126 ml Tokluk kan şeker: [lit. full blood sugar, (two hours) after eating] 90 – 140 ml 140 – 199 ml 200 ml As abstract and inert as such tables appear to the newcomer, these numbers contain complex meaning. They are numeric explanations of the illness diabetes itself, the difference between healthy and diabetic, “good” and “bad” diabetes control, parameters of risk and danger and reference points of current illness status. These numbers appeared every week, sternly rehearsed by the sometimes eager, often anxious, crowd that was invited to correctly dictate each figure to Yılmaz. However, far from being a mere theoretical exercise, the self-help group members were dealing with these numbers on a daily basis in their very practical experiences of living with diabetes. They measured their blood sugar levels every day, comparing the results with the tables, adjusting medication dosage, food intake or exercise levels accordingly, recording the numbers in their diabetes diaries, understanding their current health in this way, sharing such information with the other self-help group members, health professionals and also family. “You were up to 300 once, Mama”, Sevim’s 10-year-old daughter announced when I visited them after their summer holiday in Turkey and inquired on how the diabetes management had been going there (field notes 17.07.2007). This subchapter is about numbers, figures, rates, levels, in short the numeric diabetes control.
Blood glucose, pressure and cholesterol in numbers There are various forms of numbers a diabetes patient is confronted with. The above case is the most important set of figures: the table of blood-sugar levels or rather of the cut off points that determine clinical standards of glucose concentration in your blood. The first set of numbers of fasting blood glucose represents the levels before
Açlik kan şeker [lit. hungry, i.e. fasting blood sugar] 70 – 99 mg/dl good (also average non-diabetic levels) 100 – 126 mg/dl average 126 mg/dl high Levels until 100 are considered very good (and also represent non-diabetic glucose levels), between 100 and 126 are average levels, whereas anything above 126 is too high. Many diabetics’ levels before eating, often in the morning, can be that elevated if their diabetes is not controlled very well and/or as the liver also produces glucose that a diabetic pancreas might not handle over night. The second set of numbers is measured two hours after eating (or two hours after having administered a sugary
drink in order to diagnose diabetes in a so-called oral glucose tolerance test):
Tokluk kan şeker [lit. full blood sugar, (two hours) after eating] 90 – 140 mg/dl good (also average non-diabetic levels) 140 – 199 mg/dl average 200 mg/dl high The table shows in a nutshell what diabetes is. While non-diabetic people’s blood sugar levels are quickly controlled with a boost of insulin discretion of their pancreas, diabetics’ blood levels shoot up and stay up after a meal unless adequate medication supports the insulin production to contain the high concentration.
Determining the “two-hour” glucose levels can therefore diagnose diabetes, check the efficacy of medication and, in general, monitor diabetes control. Conversely, people who inject insulin – commonly 30 minutes before having a meal – test the fasting glucose levels at that time and might adjust the insulin dose accordingly. The glucose table also shows the complexity of diabetes. Depending on the time of the day (or rather the time of the last meal), “normal” blood-sugar concentration varies greatly. What is normal at one time can at other times be high or low. “Too high” or “too low” should not be understood as a mere clinical disciplinary notion but can mean being dangerously close to diabetic coma, and death – or at least to organ damage.
Other numbers are not quite as urgent yet not necessarily much less complex.
The common table for hypertension scribbled every now and then on the self-help
group’s black board surely rivals the blood glucose one:
Tansiyon 120/ 80 ideal tansiyon 130 - 139/ 90 - 95 yüksek tansiyon [high blood pressure] 121 - 129/ 81 - 89 normal tansiyon 140/ 96 super yüksek tansiyon [very high blood pressure] Each set of numbers, e.g. 120/80, is read in the following way. The first number represents the ‘systolic’ pressure in the arteries when the heart contracts, whereas the second number behind the “/” is the ‘diastolic’ pressure of the heart at rest.
According to this table, normal blood pressure would be e.g. 120/85 mmHg (millimetres of mercury), 135/92 would be considered high blood pressure or “mild hypertension”, whereas 150/100 would be very high blood pressure or hypertension.
You can also just have a systolic hypertension, e.g. of 170/70, or just a diastolic hypertension e.g. of 120/100. Checking on hypertension, this added clinically gaze on the diabetes patient’s blood, is considered a vital secondary preventative measure.
Up to half of diabetics suffer from high blood pressure and as hypertension is an independent illness that can lead to organ damage of kidneys, eyes and cardiovascular complications, it aggravates the health danger posed by diabetes.
The same goes for cholesterol levels that can be affected by insulin resistance but also add a separate health risk to diabetes. Yet unlike blood glucose and blood pressure, cholesterol is a fairly straight-forward number game, once you understood that there is something like good cholesterol, of which you cannot seem to have enough, and bad cholesterol, of which you should have as little as possible in your
blood (as mentioned in chapter 4.2):
Kolestrol LDL kötü [bad] 100 HDL iyi [healthy or good] 45 In short, diabetes patients deal with a serious of numbers that “read” from their blood. They indicate blood pressure and cholesterol levels, fasting and non-fasting glucose levels. There is also the long-term blood-glucose HbA1c that has been mentioned before, which is the best indicator for diabetes control as it is robust against daily variation. HbA1c is not quite an immediate number as the short-term glucose measure as it needs to be determined in a laboratory (so is cholesterol, while blood glucose and blood pressure tests are now mainly done at home) and is recommended to be tested for every three months. Nonetheless it seems to be the most important reference point of communicating one’s diabetes status and progress (or setbacks) in diabetes control. Haemoglobin (Hb) is the molecule in red blood cells that carries oxygen. Glucose has the tendency to stick to this molecule and glycosylated (“sweetened”) haemoglobin is called HbA1c. As haemoglobin has a “lifecycle” of about twelve weeks, checking for this measure of stored glucose about every three months can give a good indication of how high the blood glucose concentration was on average within this time. Non-diabetics have an HbA1c of 3.5 the target value for good diabetes control is 6.5 %; over 7.5 % indicates bad diabetes control and elevated risk of secondary complications. These HbA1c levels are taken from patient education sessions where I first learned about them. 26 The cut-off points of HbA1c taught in the self-help group vary slightly.