«Tactics of Diabetes Control Turkish immigrant experiences with chronic illness in Berlin, Germany. Cornelia Guell PhD by Research The University of ...»
Abstract numbers in practice Therefore, “management by numbers” is more than the clinical strategy of diabetes care but can be part of individual day-to-day practices of diabetes control. Numbers are thus more than abstract entities but can be actually very practical. In fact, a dichotomy of the abstract and the practical, numbers and lived experience, would not serve us well to understand why the self-help group members use abstraction as an everyday practice. Numbers that refer to levels of blood glucose and diabetes control are not only ways of communicating or grasping their illness experience but numbers provide the necessary parameters against which they can measure their day-to-day practices of diabetes control. As much easier as it was to my research participants to communicate “how their diabetes was doing” in a simple number (“my HbA1c is 7.2”), they could also keep control over their progress of diabetes management, if a new diet reaped the desired outcome or if an indulgent weekend was a set-back.
The self-help group would recount a number of success stories of group members that transformed from ignorant to “expert diabetic”, a transformation that was expressed in HbA1c levels. I could witness one such story myself. I joined the group in January at about the same time when Ahmet, a forty-three year old mechanic, became a member together with his wife Banu. Ahmet had been living with diabetes for four years when Banu read a leaflet advertising the group at the local job centre and got in contact with Yılmaz. She was worried that Ahmet’s diabetes control was not going well – mostly as he was not taking his medication regularly. Yılmaz inquired about her husband’s blood glucose and cholesterol levels to get an idea of the “gravity” of his diabetes, gave initial advice on diet and exercise and insisted that they should come and attend his group seminars. It had taken months of persuasion by Banu but finally the two joined the group and quickly became regulars who also helped actively organising group events. I was first invited to their home in March when Ahmet was telling me about his strict vegetarian diet his wife had put him on. His glucose levels, however, were still on the higher end of the scale with an HbA1c of 13, as he told me with slight embarrassment. (From field notes 28.03.2007) What was striking to me was that both Ahmet and Banu had already understood and adopted the significance of (expressing themselves in terms of) HbA1c. Only four months later in early July, during the self-help group’s last session before their summer break, I shared the back row of the lecture hall with Ahmet. Like me he had become a regular attendee of the group meetings and that day he leaned over to tell me proudly: “Guess what, my HbA1c is 6.1!” (Field notes 07.07.2007) His astounding achievement (any diabetologist would agree, I am certain) was later discussed in the group, and also retold to me (“Have you heard about Ahmet’s latest HbA1c?”) during many visits of group members during the following months.
These tactical practices will be further explored in Chapter 6. Of interest here is the practical utility of clinical measures. Moreover, numbers may be abstract but they are far from being neutral but enable normative comparison. Numbers can thus have arbitrary and moral connotations and create conflict, as another incident during my fieldwork, which I will briefly describe, will demonstrate (from field notes 23.05.2007). I went to see my friend Rana before she was off to Turkey for the rest of the summer. She had not been attending the self-help group sessions for quite a while and I was wondering what was keeping her. Her grandson had been ill but she would usually try to make herself available for Saturday afternoons. To my surprise she told me that she decided not to attend the self-help group anymore. She was about to leave Berlin for a couple of months anyway for her yearly stay in Turkey and she would see after that. I was curious to find out what had happened and she admitted that it was about the group leader Yılmaz. She explained that she felt bullied by him – admitting that she was quite a vocal person who might have rubbed him the wrong way. She recalled several occasions when she had shared her experience with the group when such advice seemed to have been not quite as much appreciated by Yılmaz. The greatest dispute was about the pricy test strips for the blood glucose meters. She got hers prescribed and covered by her state health insurance after she had attended a patient education module with her diabetologist.
Yılmaz, however, insisted that she must be wrong and that only patients on insulin would get the test strips for free. (Incidentally, the self-help group sold test strips themselves – announcing the latest monthly bargain on the blackboard before the session began.) I must admit that I was also told by many doctors and diabetes assistants that test strips are only covered by health insurances if prescribed to insulin injectors, but there seemed to be a clear conflict of interests fuelling the row between Yılmaz and Rana. Rana went on telling me that he was bullying her by having repeatedly publicly announced her HbA1c as 8 rather than her actual 6.something.
These public announcements of HbA1c levels were usually an opportunity to praise somebody’s great achievement and poor levels were only mentioned in connection to their succeeding remarkable improvement. Rana was so hurt by Yılmaz’s constant misrepresentation that she was turning her back to the group – at least for now, as she was heading to her holiday home at the Aegean coast.
In conclusion, my research participants learned that diabetes patients need to know blood-glucose levels, blood pressure and cholesterol levels. Being able to read the clinical numeric expressions of their blood tests, they could identify how their diabetes “was doing” in comparison to standard tables. Far from being an impractical exercise, I would argue that my research participants embraced such number games for various reasons and intentions. Turning the – often bothersome – experience of illness into a number can be a form of coping and distancing. Rendering a deeply intimate and elusive experience into an impersonal abstraction, enables, furthermore, to communicate it safely in public without exposing too vulnerable sentiments.
This numeric form of communication seemed to be also a way of entering clinical consultations on a much more equal basis. Rana, for example, did not only make negative experiences with number such as the above mentioned quarrel with Yılmaz. Her knowledge of clinical parameters fostered a very good relationship with her doctor. While I did not accompany her on consultation she would tell me afterwards how it had gone. One day she told me how they had assessed her recent diabetes control together – looking at her readings that she had documented in her diabetes pass – and decided to reduce her medication to one tablet a day (from field notes 12.03.2007). I did not doubt that Rana would embrace this challenge of getting her diet and exercise in line with this reduced drug therapy, but I was surprised by the collaborative consultations between the German doctor and Rana with her usually shy and reluctant German. In the case of the Turkish Berliners in the self-help group, their knowledge in clinical parameters seemed to help bypassing communication difficulties that might arise from language barriers.
This shows that seemingly abstract entities can have very “local”, concrete implications. Numbers, that might represent universality, objectivity and abstraction, can thus be local but also moral and create conflict. This is as making experience comparable allows for normative comparison. Numbers are certainly practical.
Diabetes is not only difficult to express but often difficult to experience as variations in blood glucose levels can go unnoticed to the patient. They can serve as points of reference to evaluate both practices of diabetes control and the diabetes itself. This “making visible” of diabetes will be further explored in the next subchapter. Here was discussed that the numbers in the lives of diabetes patients can be abstract, distancing, quantifying and communicative, as well as localised, moralising, individual and practical exercises.
5.2 Watching diabetes
The most frequent and personal involvement with numbers is the daily selfmonitoring of blood glucose levels with meters. Self-testing is taught in diabetes patient educations as it is encouraged in the German Diabetes Union’s evidencebased guidelines (Herpertz et al. 2003). All diabetes patients I spoke to owned meters, and all my research participants used them with great enthusiasm. Meters are usually handed out for free by doctors who are – as they told me – swamped by these gadgets by drug companies. Blood glucose meters are a big industry and money is made by selling the expensive test-strips (that are only covered by the health insurance for insulin users). The more people test, the more money is made.
While I am writing this chapter, news headlines report “Diabetes self-tests ‘no benefit’”, following the publication of a study that also suggested that selfmonitoring might even lead to more anxieties and depression in patients (BBC News 2008). That self-monitoring is not necessarily a reassuring exercise I witnessed at the following late lunch with Feyza (from field notes 27.08.2007). While we were waiting for a chicken to be done, which was slowly roasting in the oven, Feyza checked her blood glucose levels. She brought two small bags that held her glucose meter and her insulin pen. First she opened the kit with the glucose meter (the make they hand out for free at the self-help group), the little cylindrical box with test strips and the lancet to prick her finger. After inserting a test strip into the meter, she pricked her finger at the side of the fingertip. “The finger-pricking is the worst about it”, she commented while I was watching her. “That really hurts. The insulin injection itself is fine. Don’t feel a thing.” She squeezed her finger and held it to the test strip which sucked in the blood drop that had gathered at her fingertip. We waited a couple of seconds and both read the result at the same time. To our amazement, the reading was 178, a very high meter reading just before eating. Feyza had only eaten breakfast hours ago and had only eaten an apple for lunch, as she assured me. She should feel dizzy from low blood sugar levels. Marvelling why the reading would be so high, I tentatively suggested that her finger might not be clean.
Feyza went off to wash her hands again, then repeated the procedure, pricking the same finger again, using a new test strip, and waiting for the result. The new meter reading was even higher: 185. We both struggled to find an explanation for the miraculous increase in blood glucose over these couple of minutes of measuring and started wondering if the test strips might be faulty. Aside from the odd test variation, we could not explain why it would be that high in the first place, considering the quite modest diet Feyza had had that day. Feyza suggested that the explanation could be stress, as a friend had once told her that stress can cause and worsen high blood glucose levels. We both agreed that she certainly had a stressful day today but were not convinced or satisfied with our speculations. As the general advice is to stay to one’s usual dosage of insulin, Feyza simply got her insulin pen ready with the usual dosage. In the other black bag was her quite stylish looking red insulin pen and she twisted the middle of the pen to the right dose of insulin. Holding her T-shirt up she took a skin fold of her large belly and very slowly injected the pen.
In the above case, the test results were unsettling, and without professional advice at hand it can be a daunting decision as to what to do next. Feyza’s problem illustrates the tension between the out-of-control diabetic body and the attempt (with technological help) to conquer this unpredictability. Unfortunately, a test result, despite producing a static visual image, can sometimes merely visualise such unpredictability.
Blood glucose self-testing Blood glucose meters are small devices a little bigger than mobile phones. There are various brands and each (drug) company sports its own product range. The simplest devices provide only the basic function. A test strip is inserted at the bottom of the gadget, a drop of blood is produced with the finger pricking device and lancet and is applied on the strip. Seconds later the usually large and easy to read display shows the reading. Differences between makes or brands seem to be often a mere design choice; however, some store meter readings, others even can be connected to a computer to transfer these readings into medical files. Older meters need to be calibrated or coded to each batch of test strips.