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«Tactics of Diabetes Control Turkish immigrant experiences with chronic illness in Berlin, Germany. Cornelia Guell PhD by Research The University of ...»

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Yılmaz began the session with writing on the blackboard: 3.8 – 6.1, 6.1 – 7.0. People were confused, asking “O ne?” [“What’s this?”] and “Anlamıdım!” [“I don’t understand.”], so Yılmaz launched into a detailed explanation. HbA1c was a measure of three monthly blood glucose levels; that it was the doctor who has to do these check-ups as the necessary machine would cost EUR 2000. Hb stood for “Hemoglobin Alyurvaıok” [lit. haemoglobin blood], as he scribbled on the board, and A1c were a “kot” [code]. I struggled to understand his explanations – as I was sure the others did, too. But we got his emphasis on the importance of keeping these levels down and that high HbA1c levels indicated risk for co-morbidities in eyes, kidneys, or erection problems. (Field notes 10.03.2007) Although HbA1c remained an elusive term to many that was produced in laboratories and revealed some information which your blood somehow stores, selfhelp group members knew of its importance within the clinical realm. Knowing that it is the long-term measure, knowing which figures are “good” or “bad”, last but not least being able to swiftly say “H B A 1 C” was understood as the indicator of a “good” diabetes patient (as already mentioned in 4.1). HbA1c were considered valuable to communicate with health professionals, health insurance companies or social workers. Even more so, being able to share each other’s HbA1c levels among patients would inform about current illness status, create and reinforce commonality, but also entail a certain moral connotation of success (or failure) of diabetes control.

All clinical numbers on blood levels regarding glucose, cholesterol or hypertension mentioned in this chapter are taken from information given by research participants or material they shared. As the next paragraph shows, these numbers were not always consistent. I checked the numbers with medical text books and some differ, although not substantially. Figures also differ between different text books (and internationally). Also see Mol (2008: 44ff) on the arbitrariness of clinical cut-off points in diabetes care. “Clinical standards” are in fact quite arbitrary and show a certain leeway (e.g. see Bowker and Star 2000).

During self-help group meetings, good levels were announced proudly in public and people would include their current HbA1c in the long formalities of Turkish greetings. Bad levels, on the other hand, were more commonly shared with concern among friends, often during the group meeting’s break. Having said this, worse HbA1c levels were also starting points for discussions about concerns. Gizem, for example, had just received her latest HbA1c results after her holiday in Turkey.

While she perceived her holiday to have had a positive effect on her health, her much worse HbA1c levels worried her. Yılmaz explained about the rapid effects that lax lifestyles during the holidays could have and how worse HbA1c readings after the months in Turkey were common in the people he advised (from field notes 16.06.2007). This social, political and moral economy of HbA1c also applies to other numbers such as the short-term blood glucose levels as well as blood pressure and hypertension, as not only diabetics but probably most people from a certain age experience in our time of preventative medicine.

The clinical language of numbers In sum, even though biochemical and biomedical function and workings were often not clearly understood by self-help group members, they embraced the fact that they were able to read test results, relate them to their own bodies and health and knew that they could detect risky bodily states that might require attention. The self-help group’s appreciation of numbers surely does not mean that all patients would adopt such clinical number games with the same enthusiasm. Given that most Turkishlanguage patient education sessions were very restricted in time and resources and focused much more on basics rather than elaborate clinical knowledge, their attendees would not even get in contact with numeric expressions of glucose, cholesterol or hypertension. On the other hand, the diabetes consultant that had a large middle-class German clientele replied to my queries about “my” self-help group’s near obsession with numbers, for example expressing daily well-being in terms of glucose levels, with amused recognition. “It’s a horrible term”, she apologised, but you would call them “professional diabetics” (Berufsdiabetiker). She went on explaining that some patients “really overdo it” but that it would hardly be their fault because they were encouraged to perceive, express and present themselves in this way (from interview transcripts 26.06.2007, p.9).

Indeed these patients were taught and took on board that numbers represent clinical “objective” knowledge on illness status (Porter 1995). Diabetes is a chronic illness that can present itself in many different statuses and complications, and is lived, experienced and managed in private homes and disorderly individual and communal social lives. From a clinical perspective numbers are an escape from the messiness of personal illness experience, idiosyncratic self-management and patientled therapy. Numbers represent abstraction away from the particular and personal but create “objective”, “universal” reference points (Porter 1995; Zaloom 2004). In the same way as medical students are initiated in the language of modern medicine to separate them from the lay everyday (Sinclair 1997: 141ff), “expert patients” of chronic illness enter the same apprenticeship of expressing their illness in such “scientific” terms (Nettleton 1995: 96, on self-help groups). Medical scientific language – mostly in form of Latin and Ancient Greek – replaces emotional, lived experience of illness by dispassionate clinical representation (Sinclair 1997: 141).

Bowker and Star (2000: 170) explain the medical objective insofar as the “body is constantly in motion and varies by individual, so the ideal measurement is always a projection from a moving picture onto a timeless chart”. Here, they speak of turning bodies into static images – x-rays. Yet clinical numbers are the quintessential measure, recording moving bodies and illness in chronological graphs. Numbers aim to generalise, objectify and quantify individual experiences and make these experiences comparable, assessable and (e)valuable. In doing so, one could argue, it separates the diabetic blood and the person through which this blood is running, according to modern medicine’s convention of the Cartesian body-mind division (see e.g. Csordas 1990, 1994; Illich 1976: 156; Lupton 1994: 30ff; Turner 1992: 32).

Playing the number game: embracing the abstract The above explorations of the clinical objective seem important to understand the purpose of clinical tests and numbers. And yet these accounts fail to consider that patients might be more than mere inert occupiers of “docile bodies” that are quantified, recorded, assessed and disciplined (1991a [1975]), in that they can be entrepreneurs of such activities. I would argue that my research participants had a similar interest in numbers and using them to their own ends. Instead of being objectified, their bodies and/or their experience, by clinical terminology, they seem to embrace such “tactics” themselves. When sharing experiences with each other and me numbers were used as an introduction, summary and/or assessment of certain events. In order to tell me how Rana was getting on with her new medication, all she had to do was to say: “Last night I was 240” (field notes 13.03.2007). This was a quick way for Rana to explain that her diabetes was as controlled as she had wished for. Uttered among “experts” one could also empathise with her anxiety or frustration without Rana having to mention it specifically, while outsiders would have missed the significance of “being 240”. With the help of numbers, in accordance to the clinical intention, they render their experience of illness into something impersonal and abstract.

Just as the clinical realm is challenged by the messiness of patient-led illness management, the patients struggle with the messiness of experiencing such a fluent, inconsistent and often intangible illness. Bowker and Star (2000: 170) add to their account on “moving bodies” that patients’ experiences are equally in motion. They refer, though, merely to patients’ relation with health professionals, changes in social surroundings and the effect this has on the illness progress. I would argue that patients have the same motivation as clinicians to capture moving experience.

Invoking “neat numbers” and “hard facts” can be a welcome coping strategy; in Foucault’s terms, it can be a “technology of the self” rather than a “technology of power” (Foucault 1997). By doing so, some “professional diabetics” might reify numbers to replace their illness experience altogether. Experiences emotions, health, well-being and suffering become abstract numbers, but these numbers gain concrete social lives themselves, with the agency of rendering a day “good” or “bad” both on the paper (or display) of a test result and in lived experience.

That in mind, the “number game” is no oppositional project. As much as patients are not necessarily unwillingly objectified as a number that can be compared with parameters of clinical tables, health professionals are not categorically encouraging such faith in numbers, such a reification of numbers. The above mentioned diabetes consultant encouraged those patients she would call “professional diabetics” who overly expressed their well-being in terms of glucose levels to explore what lied behind the numbers and to understand the social context and events that might influence diabetes control. She was worried that her patients could get defeated by the “failure” of numbers if those were disconnected from plausible – and in a way “excusable”– circumstances. Her patients were encouraged to acknowledge that “having had a really nice day” could explain, and should never be denigrated by, a “bad” blood-sugar count. Her advice took into account that even though numbers could be perceived as objective, definite facts that could “confine” illness and therefore reassure, they can also very much create anxiety. Numbers can be ambiguous entities that are ascribed different meanings and interpreted in flexible ways, as for example Zaloom’s (2004: 259) ethnographic study on trade technologies of financial markets explored.

I believe that my research participants at the self-help group, however, perceived numbers as eminently generalised forms of expressing their illness, appreciating the impersonal nature of numbers. These experts – “professional diabetics” – shared an understanding of what these numbers meant, including an understanding of the emotions that came with various degrees of diabetes control.

The self-help group meetings were never very intimate conversation and some elderly group members interacted very formally with each other. Nonetheless, their habit of sharing each other’s current blood glucose levels during greetings or telling the group recent episodes of defeat or success in terms of blood levels, as Gizem and Rana did, made it possible to exchange very personal experiences without having to disclose too much detail.

In Trust in Numbers (1995), the historian Ted Porter explored the appeal of objectivity and quantification in sciences and public life. He described numbers as seemingly formal, impersonal and public means of communication that correspond “beyond boundaries of locality and community” (ibid. viii). Porter mainly envisioned researchers, statisticians, journalists enchanted by (and ultimately shaping) numbers, yet can my research participants’ (lay) intentions be understood accordingly.

Adopting a language of clinical numbers rendered their personal experiences into a “universal” form of expression. In other words, private suffering becomes “fit for the public”, be it the clinical practice and consultations with health professionals, or financial negotiations with social workers or health insurances, or exchange in the self-help group.

Having said this, Porter saw numbers intrinsically linked to their local and social identity. So far, this chapter has not mentioned the specific situation or perspective of Turkish Berliners with diabetes. Indeed “monitoring diabetes” is a practice that I would suggest is close to many diabetes patients’ experience.

Following Porter’s observation, however, my research participants’ striving for a means of communication becomes even more significant – or at least more obvious – in its local and social significance, as they struggled with the language of their healthcare system irrespective of the discrepancies between lay and expert jargon. In any Turkish-German communication that might be lost in translation, numbers can alleviate such barriers. Numbers do not require language proficiency or rather a different kind of language proficiency that is at least less complex than the elaborate words that exist in each language in order to express well-being, illness or suffering.

An abstraction of illness experience can therefore also be seen as a simplification of complex lived experience. Inasmuch as diabetes is an elusive illness of blurred states of health and sickness, experiencing it would be hard to put in words (in any language), and reducing them to a numeric concept is an easy way around this communication problem. Communication here can of course also mean towards themselves, giving meaning to their experience in clear, unemotional and manageable terms.

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