By Véronique Hamel
People with diabetes or other hypoglycaemia-inducing illneses, like glycogen storage disease (GSD), often ask other people who share their condition whether they feel “hypos” and “hypers” (Hamel 2018). After repetitive experiences of hyperglycaemia (high blood sugar) and hypoglycaemia (low blood sugar) episodes, patients with diabetes develop a repertoire of “body cues” they tend to feel during those episodes (Hernandez et al. 1999). By tuning into their own body and paying attention to those cues, they can in turn estimate their glycaemia with relative accuracy (ibid.). For example, at around 3.5 mmol/L (low blood glucose), many patients can feel their body shivering and sweating and experience spontaneous hunger, thirst, and agitation (Ryan and Kwon 2018). Conversely, at over 10 mmol/L (high blood glucose), their body becomes slow, heavy, numb, weak, sleepy, and sometimes painful (Hernandez et al 1999).
This sensory attunement is known as glycaemia awareness. As an interoceptive sense, glycaemia awareness is the ability to feel one’s own blood glucose level without the help of test strips or continuous glucose monitoring (hereafter CGM). Many different terms are used in the medical and anthropological literature to talk about glycaemia awareness and its opposite, glycaemia unawareness, depending on the focus of the study: interoceptive accuracy, hypoglycaemia unawareness, somatic awareness, blood glucose awareness, self-awareness, and so on. The term “glycaemia awareness” is preferred for this entry as it will limit confusion and allow for a broader discussion of the assessment of different blood glucose levels, not only hypoglycaemias.
Although most physicians insist that a correct glycaemic control should be obtained by objective and precise monitoring, namely regular testing through test strips or CGM, in reality, most patients with diabetes often “guess” their blood glucose, especially when testing is impossible or inconvenient (Kiken et al. 2018). Indeed, for most patients, “the management of diabetes is only secondary to engaging in an active occupational, social, family, and personal life” (Cox et al. 2006: 43). They do not act this way because they think their condition is not important or serious, but simply because it does not represent their entire life (ibid.). Hence, guessing one’s blood glucose with relative accuracy (i.e., glycaemia awareness) becomes important between moments of formal and precise testing – especially given that those moments represent the biggest share of a diabetic’s day. Indeed, a research study showed that “[p]eople with [type 2 diabetes] who are affected by hypoglycemia unawareness have a nine-fold greater incidence of hypoglycemia than those with intact awareness” (Grammes et al. 2018: 61). This is because sensing one’s hypoglycaemias at an early stage can serve as an alarm before entering severe hypoglycaemia and thus prompt one to take action to redress the situation.
Moreover, glycaemia awareness seems to be a learnt capacity: some specific awareness trainings have proven to ameliorate the accuracy of patients’ blood glucose estimates, and hypoglycaemia unawareness can be reversed if the frequency and the length of low blood glucose episodes is reduced (Ryan and Kwon 2018, Cox et al. 2006, Grammes et al. 2018, Hernandez et al. 1999, Kiken et al. 2018). However, as Hernandez et al. (1999) note, although some signals of low and high blood glucose are shared by most patients with diabetes, each person’s way of sensing their glycaemia and body cue repertoire is different. Hence, medical teams should not only teach common hypo- and hyperglycaemia symptoms to patients, but should also invite them to pay attention to their own peculiar perceptions of blood glucose levels and to build a more personalized, more efficient body cue repertoire (Hernandez et al. 1999).
More generally, as suggested by the medical literature, glycaemia awareness can be classified as an interoceptive sense. In the encyclopedia The Five Senses and Beyond, Riannon C. Atwater describes interoception as “the perception of sensation originating from within the body, especially the visceral organs” (200). According to Farb et al. (2015), interoceptive senses would be directly linked to homeostasis (i.e. the maintenance of a stable and optimal biological state, for body temperature, hydration, and blood glucose, among other things), and more especially to the lack thereof. Indeed, these authors argue that interoception “is thought to be intimately connected to self-regulation, having likely evolved to help organisms maintain homeostasis” (Farb et al. 2015: 2). Indeed, interoceptive sensations usually crop up to consciousness especially when homeostasis is perturbed.
The phenomenology of the (ill) body proposed by S. Kay E. Toombs and Drew Leder helps explain why accurate glycaemia awareness is most difficult when one’s blood glucose level is in the perfect range (Hernandez et al. 1999). In normal circumstances, Toombs (1990) argues, when one’s body is functioning normally, without the impairment of illness, stress or emotional turmoil, its very presence goes unnoticed. In other words, “[i]nsofar as the body tends to disappear when functioning unproblematically, it often seizes our attention most strongly at times of dysfunction; we then experience the body as the very absence of a desired or ordinary state, and as a force that stands opposed to the self.” (Leder 1990: 4) Goldenberg (2010) beautifully summarizes this intermittent illness-related interoceptive capacity by stating that “[t]he converse of the problematically present body in illness is the absent body in health.” (55)
Historically, interoceptive senses have been mostly overlooked, at least in the Western tradition. Leder (1990) identifies two main reasons for this relative “absence of the body” when considering phenomenology (and sensory studies generally): the paradoxical nature of embodiment and the prevalence of Cartesianism. In the first case, the author explains that “the body, as a ground of experience, yet tends to recede from direct experience” (Leder 1990: 1). In other words, we tend to live and experience the world through our body while not being aware of our own materiality. Most of the time, we take our body for granted as the mere vessel and expression of our self and focus more on our interactions with the environment and other beings through our external senses than on how we experience and sense our own body. Goldenberg (2010) however reconceptualized this supposed universal propensity into a privileged male, white, upper-class and ableist perspective, as any deviation of a normative unmarked identity yields a heightened awareness of one’s own body.
As regards Cartesianism, the brainchild of the seventeenth century French philosopher René Descartes, the entry for Cartesianism in the Britannica encyclopedia states that “[Descartes’] conception of rationality informed modern Western ideas of what it means to be a human being until nearly the end of the 20th century; and his intense desire to control nature in the service of humanity has been the ultimate secular goal of modern science since the time of the Enlightenment.” (Watson 2020: online). Descartes based his approach to philosophy, physics, and metaphysics on only two premisses that he could be certain of: that the thinking self (or rational mind) exists, and that God exists.
According to Descartes, the self could only apprehend the material world through the ideas we have of it, which in turn are the result of the interaction between the body and the mind that God puts in place (Watson 2020). The body, alongside animals and the rest of the material world, was considered to be merely mechanical, soulless, thoughtless and feelingless (Watson 2020). In western intellectual tradition, Descartes’ division of the self between the body and the mind not only reinforced an illusionary dichotomy between rationality and corporeality, but also bestowed each half with a specific value and symbolic load (Leder 1990). Cartesianism results in a valorization of thought and rationality, understood as being noble and immaterial, and a dispisement of the body, reduced to a biological machine common to both humans and animals (ibid.).
Modern western medicine in turn bears a strong imprint from Cartesianism. The valorization of rationality over embodiment transposes into a distrust of the patient’s observations, feelings and experiences and an over-reliance on objective and external data collection (Goldenberg 2010). Jones (2011) emphasizes the objectification of the body in western biomedicine, stating that “[…] while the body is at the center of bioethics, it remains overlooked and unseen, considered either as the vessel of the decision-making self or the physical object that is the subject of medical interventions.” (73) Jones describes a metonymic effect of medical imagery in which the patient tends to be reduced to the data collected from their body, irrespective of the patient’s own experience (Jones 2011). This logic is probably one reason why many physicians are reticent to foster glycaemic awareness in their patients, even if it has been demonstrated that it lowers the risk of severe hypoglycaemia.
Until recently, glycaemia awareness was very rarely documented in scientific and anthropological literature. For this reason, few data are available on cross-cultural and historical examples of this specific interoceptive sense. However, some information can be derived from the symptomatology and treatment of diabetes in different medical traditions, since many symptoms can be correlated with glycaemic awareness from a patient’s perspective. For example, in traditional Chinese medicine, writings dating from 475 B.C. document a disease known as “wasting-thirst” (xiao-ke) that was characterized by constant thirst and hunger, abundant urine production and weight loss (Zhang et al. 2010). At this early date, Chinese traditional medicine already made a distinction between three stages of diabetes, namely pre-diabetes (Pi-dan), stage of attack (Zhong-xiao) and stage of complications (xiao-dan), and listed symptoms as well as remedies for each of them (ibid.). Thirst and hunger figured in the first two stages, in a mild and an extreme version, respectively. Thus, glycaemia awareness, or in this case the dis-ease of hyperglycaemia, seems to have played an important role in the identification and treatment of diabetes, or xiao-ke, in traditional Chinese culture.
Similarly, diabetes was also well documented in medieval Persian writings (Zarshenas et al. 2014). In this tradition, “the disorder was said that may be resulted [sic] from an imbalance in the kidney temperament as well as whole body. Hence, treatment was based on the modification of temperament and humors to reach an optimum or balanced state” (ibid.: 143). Although medieval Persian medicine made a difference between “hot” and “cold” ziabites (diabetes), both were described through excessive thirst and, interestingly, changes in libido (ibid.). Some traditional Persian remedies to diabetes were later scientifically tested and proved to have real, while certainly not perfect, hypoglycaemic effects (ibid.). One might guess that, in this case as well, glycaemia awareness must have been an important way to manage diabetes. In contrast, medieval western medicine, and western medicine in general until the 18th century, used the sweet taste of a patient’s urine to diagnose diabetes, putting emphasis on external observation rather than patient experience (Ahmed 2002). It should be noted however that observation of a patient’s urine was also important in Chinese and Persian traditional medicine, as its excessivity in diabetic individuals is hard to miss, but it was used in addition to patients’ feelings of thirst and hunger for diagnosis.
With the popularization of continuous glucose monitoring (CGM) devices, it is worth questioning whether glycaemia awareness will become a sense of the past. Indeed, the need to assess one’s blood glucose through interoception could vanish as devices such as Abbott’s Freestyle Libre or Dexcom’s G6 cancontinually monitor and store one’s glycaemia. These machines even warn the person who wears them of dropping or skyrocketing blood glucose levels, thus playing the same alarm role as glycaemia awareness. Although these fears seem justified, there are two main reasons why one might suppose that glycaemia awareness will remain relevant and practiced.
First, as was mentioned above, experiencing shorter and less frequent episodes of hypo- and hyperglycaemia makes one more sensitive to glycaemia awareness. One of the advantages of CGM is specially to reduce the occurrence of low and high blood glucose events by reducing the time periods between formal testing and by notifying patients of rising or lowering blood glucose, thus making it a precious tool in the sharpening of one’s glycaemia awareness. Second, studies of human interactions with self-monitoring devices show that, in fact, monitoring devices do not replace interoceptive senses, but are rather considered in addition to them, so that the wearer can have an enriched and more accurate sensory experience (Mopas and Huybregts 2020). This biological and technological combination is what Lupton and Maslen (2018) refer to as “the more-than-human-sensorium”, an integrated assemblage of human and technological senses interpreted as a coherent way of apprehending the world.
In the case of glycaemia awareness, CGM devices can serve as a handy and non-demanding journaling tool that allows users to link how they feel with an instantaneous testing of their blood glucose and with an image of how it haschanged over the last hours. Over time, a CGM-device user can make an association between a recurrent body cue (e.g. shaky hands) and the corresponding blood-glucose range (e.g. between 3.0 and 4.5 mmol/L) when it appears. Because of the graphic representation and the data storage provided by CGM devices, it is also possible for a diabetes patient to identify certain blood-sugar patterns with specific and personal body cues. For example, someone could notice that they experience acute hunger every time their glycaemia drops from normal range (5.0 to 6.0 mmol/L) to a slightly low range (4.0 to 5.0 mmol/L). This feeling thus becomes a very personalised and accurate body cue that in turn works towards increasing that person’s glycaemia awareness (Hernandez et al. 1999). CGM devices thus provide relatively cheap and abundant data about blood glucose in real time, making inferences between body cues and actual glycaemia easier and more reliable.
This can seem to be a hardly reconcilable paradox: how could tracking one’s blood glucose more closely, producing more numbers and accumulating more medical data improve interoceptive senses for blood glucose assessing; would it not rather further objectify the patient’s body and increase the reliance on medical images and measurements in medical practice? I argue that the answer to this paradox lies in the locus of control and monitoring: because the ill person themself get to track their own blood glucose level, make sense of it and, most importantly, relate it to the way they feel in real time as well as in retrospective, CGM devices can play an important role in diabetic patients’ empowerment, cultivation of glycaemic awareness and easier everyday coping with their illness. Chances are, CGM might well be a technology that will make glycaemia awareness an empowering and reliable tool for diabetes management again.
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