Controlling the Diabetic Body? Managing Chronic Illness with Wearable Technology

ABSTRACT

I explore the experience of managing type 1 diabetes with wearable technology. Type 1 diabetes is a chronic illness which requires continuous maintenance to keep the blood glucose levels within range. Using autoethnography, I investigate both the practices of translating information from technology and from senses, and also from health authorities, into practices. I conclude that the management of type 1 diabetes is informed by an urge to control the body, but this situation can be understood otherwise from a logic of care.

KEYWORDS:

• Bodily control
• diabetes
• insulin pump therapy
• logics of care
• Sweden, autoethnography
• wearable technology

Fifteen years ago, a stressed doctor at the local health care unit told me the shocking news while staring at his computer screen: “You probably have diabetes.” Unfortunately, he was right. I was 25 years at the time. The diagnosis of type 1 diabetes (T1D) has informed almost every aspect of my life ever since. T1D is a serious autoimmune disease in which the pancreas stops producing the essential hormone insulin. This means that I and other affected individuals require treatment with synthetic insulin to stay alive, and we need to monitor our glucose levels to be able to properly adjust the amount of insulin and thereby control our bodily functions.

To accomplish this, medical wearable technology is part of my everyday life. A sensor is attached to my upper arm continuously measuring my blood glucose level. The data from the sensor are transmitted to an insulin pump I recently attached to my body. The pump inserts insulin in small doses via a tube that penetrates the skin. The utilization of continuous glucose monitoring (CGM) and insulin pump therapy (IPT) makes me a rather ordinary person with diabetes. Most patients with type 1 diabetes in Sweden use CGM, and approximately half use IPT (Eeg-Olofsson et al. 2020). The treatment aims at keeping the level of blood glucose within a certain interval – neither too low nor too high. Thus, to manage my illness is to control my body by constantly micromanaging it, accounting for food intake, exercise, stress, and insertion of insulin. Wearable devices thereby visualize the fact that the treatment of diabetes to a large extent is practiced via self-management with medical technologies (Øversveen 2020:864).

In this article, I explore how managing chronic illness in everyday life with wearable medical technology is experienced as bodily control, which I am entangled with, but also how this experience can be understood from an alternative perspective of a logic of care. The diagnosis of type 1 diabetes and the wearable technologies used to manage it – CGM and IPT – are utilized as cases. When managing the illness, I rely on different sorts of information, including information about the body (in medical texts, consultations with health professionals, etc.), information of the body (data from the body processed through technology), and information from the body (sensations and emotions) (cf. Charmaz and Rosenfeld 2016 [2006]:38). Wearable technologies such as CGM and IPT are vital to produce and disseminate this information, which is translated into practices aimed at controlling the body by managing the disease. Thus, the utilization of medical wearable technology is not only a question of learning to handle the devices properly but also to interpret different forms of information and act upon it in meaningful ways and at the same time deal with emotions related to selfhood and to the conjoining of body and technology (Haraway 1991; Lupton 2016b). The research takes its departure in my own living body by practicing autoethnography, but it reaches into existential relations of body and technology, illness and health, and individual and society. As such, it contributes to the field of science and technology, particularly that concerning medical wearable devices (see Forlano 2016, 2017), by exploring how advanced liberal governing techniques intersect with everyday life. I examine underexplored aspects of control, including experiences of, and emotional responses to, the intricate complexities of controlling a chronically ill body. Additionally, by utilizing the concept of “logic of care” I illuminate the nuanced layers of meanings associated with body control and its consequences.

Background and literature review

Type 1 diabetes – it is chronic

Type 1 diabetes is one of the most common chronic conditions for young people and one of the most common endocrine disorders in the world (Balfe and Jackson 2007; Jendle et al. 2021). Sometimes T1D is confused with type 2 diabetes, T2D, and both diseases result in hyperglycemia (Gebremedhin et al. 2020; Krause and De Vito 2023). However, while T1D is an incurable autoimmune disease promoted by foremost genetic but also environmental factors resulting in inadequate insulin production, T2D is caused by insulin resistance promoted by genetic and lifestyle factors (Gebremedhin et al. 2020; Krause and De Vito 2023).

I, like other persons with T1D, rely on insulin to sustain my life. Insulin, a crucial hormone, facilitates the uptake of glucose (sugar) from the blood to the cells and transform glucose into energy (Arduser 2017:2). If the cells cannot absorb the glucose, it will stay in the blood causing hyperglycemia; that is, high blood sugar. The intake of food, especially carbohydrates, adds glucose to the blood and if this is not matched by insulin, blood sugar rises. Therefore, I must calculate how many grams of carbohydrates I eat to insert the correct amount of synthetic insulin. In cases where glucose cannot be converted into energy, cells resort to burning fat. Excessive fat metabolism produces ketones, which can trigger a dangerous condition known as ketoacidosis (Willner et al. 2020). If I do not infuse insulin into the body, I will die of hyperglycemia within days or weeks (Willner et al. 2020). Conversely, an excess of insulin relative to glucose can cause low blood sugar levels, a condition called hypoglycemia. Hypoglycemia is equally life-threatening, and fear of hypoglycemia highly impacts everyday life when managing diabetes (Martyn-Nemeth et al. 2017). Thus, the difficulty is to keep the blood sugar level within range.

Even though insulin therapy can prevent death, T1D is a severe disease with both short- and long-term complications, including heart and kidney disease, blindness, and substantial morbidity (Willner et al. 2020:1). What is considered satisfying “glycemic control within target ranges” is strongly associated with a lower risk of long-term complications (Jendle et al. 2021). Theoretically, medical devices such as CGM and IPT enable us to reach the target ranges, but far from all succeed. The reasons for this are multifaceted, but factors such as gender, socioeconomic status and age influence the use of medical technologies (see, e.g., Balfe and Jackson 2007; Øversveen 2020).

Since 1955, insulin is provided free of charge in Sweden, and nowadays diabetic equipment such as CGM and insulin pumps are also free (Lundberg 2021). My analysis is focused on the two already mentioned wearable technologies that are used in the treatment of diabetes: continuous glucose monitoring (CGM) and insulin pump therapy (IPT).¹ The wearable component of the CGM system is a sensor that I place on my upper arm. The sensor is attached to my body, a tube on the underside penetrates my skin and the CGM system automatically measures blood glucose at regular intervals (Øversveen 2020:866). These data are transmitted to the insulin pump via Bluetooth technology. The insulin pump consists of a device with a display, buttons, and an insulin reservoir. A thin tube connects the reservoir in the insulin pump to an infusion set attached to my stomach. The infusion set penetrates the skin, into the subcutaneous fat. The insulin pump continuously delivers small basal doses of insulin throughout the day, and by pushing the buttons I can add bolus doses, for example before meals.

Recent technological development has resulted in a so-called advanced hybrid closed loop, which is used as the case in this article. Insulin pumps with hybrid closed loops use an algorithm to interpret the data transmitted from CGM and continually adjust the basal doses of insulin accordingly (Jendle et al. 2021).² As long as the pump manages to keep the blood glucose stable and within range, I do not need to intervene. However, before consuming any type of nutrition, I must calculate the amount of carbohydrates in the meal and enter it into the pump. Thereafter, the algorithm in the pump calculates a bolus dose of insulin to deliver, based on aspects programmed by me, including my weight, the “insulin sensitivity factor” (which is individual and depends on, for example, point in time) and the amount of insulin already in my system (“insulin on board”). The aim is to match the number of grams of carbohydrates to the correct amount of insulin to keep my blood sugar within range.

The technologies described enable persons like myself to manage our own diabetes on a daily basis, and the push toward self-management in health care underscores the expectation to do so. However, self-management of T1D is “highly demanding” (Øversveen 2020:862). For example, the CGM sensor must be replaced every ten days, and the insulin reservoir should be replaced every third day. These procedures involve penetrating my skin with a needle that enables the thin plastic tube on respective device to be inserted into the subcutaneous fat. Sometimes the procedure runs relatively smoothly, other times a blood vein or a nerve gets hit, causing excessive bloodshed and pain. Even so, these seemingly dramatic events are not what is most tiresome with self-managing diabetes. Instead, it is the constant calculations and restrictions that negatively affect persons with T1D in our every-day life and contribute to what is known as diabetes distress (Balfe et al. 2013).

Wearable and self-tracking technologies

Objects in the form of medical technology play a crucial role in the self-management of various diseases and illnesses (Lupton 2018; Willems 2000). In Sweden, 30.1 percent of females and 21.4 percent of males with T1D used IPT, and approximately 80 percent used CGM in 2019 (Nationella diabetesregistret 2019). These numbers are continuously rising. The increased use of wearable technology within health care relates to a general development where self-tracking devices are widely used in nonmedical contexts – such as smart watches to count their number of steps or evaluate the quality of their sleep – and digital and connected devices increasingly inform peoples’ life worlds and their relation to their bodies (Lupton 2016a, 2016b; Schüll 2016). The technology we use changes our bodies and thereby us. Wearable devices are sociotechnical – neither merely technical nor social (Rivano Eckerdal 2015; Wajcman 2010:149).

The use of both medical and nonmedical technology results in an increased amount of data produced and new ways of displaying these data (Mathieu-Fritz and Guillot 2017). For example, the data from the CGM are translated into daily trends and average curves. As a patient, I am supposed to act on these visualizations, to stay in the “green zone” and avoid the “red zone.” Similarly, a person wearing a smartwatch could strive to reach a certain number of steps every day or track sleeping patterns (Fors et al. 2020). The increased amount of data produced by wearable technologies improves the possibility of controlling bodily functions since it enables micromanagement on a totally new level. One hundred years ago, someone with diabetes could visit the doctor weekly for a blood test to determine the level of blood glucose. During the 1980s, the personal blood glucose tester was invented, and it became possible to test the blood glucose several times a day by picking the fingertip. Today, persons using CGM automatically receive an update on their blood glucose level every fifth minute. Thereby, individuals using CGM can adjust their insulin dosage in real-time based on this information, enhancing the likelihood of maintaining blood sugar levels within the desired range (Lawton et al. 2018). However, this flexibility also raises expectations regarding blood sugar management.

Self-management in health care

The expectations of patients to self-manage using wearable technologies is linked to a broader socio-political context. According to Rose (2000:324), the state is no longer governing the population directly. Instead, advanced liberal governing techniques are structured around autonomous individuals who take on and confront risks (Foucault 2008:144), and there is an increased autonomization and responsibilization (Rose 2000). The individual is thereby expected to engage in a rational assessment of advantages and disadvantages before arriving at a decision for which they bear responsibility. At the same time, our individual choices are administered by interventions which govern our conduct (Foucault 2008; Rose 2000). Thus, the urge to control oneself is situated in a context in which we as individuals are free to act but governed to conduct prudently and control our bodies (cf. Rose 1999). For example, health care in Sweden is organized with an expectation that patients with T1D will employ wearable devices to manage their condition and achieve specific blood glucose targets even though they are free to act otherwise.

The autonomous and self-managing patient is bound to history. Historically, the patient was perceived as passive and dependent on the doctor, but the new discourse in health care highlights participating patients and “patient-centered care” (Brodin 2006; Harris et al. 2010). Clarke et al. (2003) describe the transformation since 1985 of western, and more specifically American, medicine as a change from medicalization to biomedicalization. This development aligns with the socio-political context of advanced liberal governing. Clarke et al. (2003:168–169) define five key processes of this transformation, including political formations with privatization, digitized infrastructures and information flows on internet and increased individualizations. These processes both enable the evolution of medical technology, including for example IPT, and promote individual responsibility for the management of chronic diseases by making use of medical devices (Clarke et al. 2003:162; Oudshoorn 2011).

The turn toward biomedicalization and the responsibilization of individuals is integral to the neoliberalization of politics in society and health care. Even though this is more prominent in the US and in countries such as the UK compared to Sweden, the shift toward patients’ responsibilities and the delegation of care work from health professionals to patients is also noticeable in Sweden (cf. Oudshoorn 2011). Thus, the urge to control the body, both disseminated by the health care system and experienced by me as a person with diabetes, is situated in this neoliberal landscape of self-governing individuals.

In addition, technological advancements in the treatment of diabetes are situated within this socio-political development of health care. So-called telemedicine or telecare is an essential aspect of this development (Pols 2010; see also Oudshoorn 2011) and in Sweden became widely used in the 1990s to make health care more cost-effective (Petersson 2012:153). The implementation of these technological solutions thereby shaped the conduct of patients as self-directed individuals (cf. Rose 1999:52).

To frequently control the blood glucose levels and properly adjust treatment is to conduct practical, technical and emotional labor (Forlano 2016; Kaziunas et al. 2017). Health information communicated to the patients, not least through digital channels, is put forth as vital in this endeavor (Brodin 2006; Harris et al. 2010). Willems (2000:26) describes the self-management of chronic disease as consisting of three aspects: “supervising the disease and one-self (the element of self-monitoring), doing so judiciously (self-care)” and becoming a “management team” together with the physician “(collaborative control).” Thus, the patient becomes more independent of the physician but, at the same time, the responsibility to manage the disease is partly delegated to the patient. As a person with diabetes, you become an “expert patient,” interpreting bodily information from both senses and technological devices (Arduser 2017:2).

Conceptualizing information, control and care

Diabetes is a disease caused by malfunctioning parts of the body and affects the general function of the body. However, this does not imply a dualistic understanding of body and mind, and there are no sharp distinctions between humans and technology (Haraway 1991; Petersén 2018). Inspired by phenomenology, I consider myself as an embodied subject who experiences the world and everyday life through my body and senses (Lupton 2018:18; Mascia-Lees 2011:412). In addition, the body is not a single unity; “the body and its diseases are more than one” (Mol 2002:viii). Departing from dualistic understandings, Mol (2002) coined the concept of the body multiple, referring to how the body, as well as disease, is continually enacted.

Those practices of enactment involve a constant tinkering with the body utilizing wearable technologies, and this tinkering depends on information (Mol 2002). I use information from my wearable technologies and senses, as well as information disseminated to me by health professionals, and I evaluate the trustworthiness of the information in this process.

The activities performed to receive information and transform it into management of the disease is sometimes referred to as information work (see, e.g., Hogan and Palmer 2005; Mazanderani et al. 2019:397). The framing of these activities as work underscores the deliberate, time-consuming, and maintaining actions necessary in our efforts to control the body. At the same time, this points at the incongruent endeavors to continuously control something that is inherently uncontrollable. The concept of bodily control therefore brings contradictory associations; on one hand positive notes of control over one’s life and destiny – sometimes referred to as empowerment, on the other hand negative notes of restrictions and subjection. Both associations are entangled in the paradoxical liberal narrative of autonomous individuals acting freely – but prudently and responsibly.

I experience the daily routines involved in managing diabetes as a dual endeavor – one that unfolds both externally and internally, driven by a pursuit of control. This imperative to control the body is inherently subjective, yet simultaneously shaped by prevailing discourses within the realms of health care and the broader society. In this context, control is closely related to freedom as described above. When the autonomous individual acts civilized in desirable ways (Rose 1999), the doctor does not need to tell the patient to counteract instances of high blood sugar levels. Instead, the patient is expected to act on the information received from the display on the insulin pump by his or her own will. The conduct of controlling the body and the development of self-management in health care can thereby be understood as practices of governing freedom (cf. Rose 1999:67).

The exhortation to manage T1D by controlling the body implicitly builds on the perception that the patient can choose to control the body and keep the blood sugar level within range by acting in a certain way. However, from an analytical perspective this experience can be conceptualized otherwise. Mol (2008:xi, 8) illuminates how “choice” does not necessarily contrast to “no choice” and points to the fact that there are a lot of situations in which people are not able to choose. According to Mol (2008:xi), both “choice” and “no choice” are parts of a logic of choice. As an alternative, Mol (2008:xi) introduces a logic of care, in which care is contrasted with neglect. When utilizing the concept of care in the analysis, I take a step back from my own experience of everyday life of managing the disease to analyze my emotions and practices from a broader perspective. Thus, the concept of control encapsulates my experience of managing the disease, but I utilize the concept of care in parts of the analysis to open up for an alternative understanding of the situation.

The autoethnography method

When exploring and trying to understand the experience of urging to control the body in the context of chronic illness, I use a variety of sources. To get a rich picture informing my understanding of everyday life managing type 1 diabetes, I have actively during the last two years read posts in social media (in Facebook groups for persons with diabetes and on Instagram where persons with diabetes post stories and events) as well as information produced by both medical companies and Swedish health authorities. These texts enrichen my understanding and are used as back drop in my analysis, but for ethical reasons I will not quote specific posts.

Instead, autoethnography is used to construct the main empirical material. This begs the question of my own position. I am a cisgender, middle-aged, white academic female. This informs my management of diabetes, influencing interactions with health care professionals, my opportunities to acquire information, and my ability to take a few minutes break if my blood sugar levels are declining. However, my position is not determined by these mentioned facts. When I started this autoethnographic research, I experienced a transformation since I stopped being solely a patient and became a hybrid of patient and researcher in relation to health care. This new position opened new perspectives on the mundane activities of managing the illness. This position, involving a movement between being a patient and experience life with diabetes and being a researcher analyzing these experiences, is mirrored in the analysis of this text shifting from the urge to control the body to reflecting on the situation from a perspective of care.

At the same time as I decided to start with IPT, I began to take regular notes on my everyday management and experience of the disease. I took notes on mundane activities as well as events that stood out. The notes include descriptions and reflections of activities, experiences, and emotions, providing thick descriptions of complex courses of events. I started note taking before implementing IPT in August 2020, continued during the implementation process and during the first period of living with these wearable devices, and stopped in February 2022 when I started to analyze the material.

Autoethnographic research in general as well as the particular research underlaying this article uses the case of one’s own experience to analyze a problem (cf. Adams et al. 2015:103; Mascia-Lees 2011:46). The result is local and specific. Case studies do not aspire to result in generalizable conclusions or universal truths. Consequently, the notes informing this study construct one way of telling my story of living with and managing type 1 diabetes. However, the relevance of the research is not limited to the particular case I investigate. According to Mol (2002:10), “Good case studies inspire theory, shape ideas and shift conceptions.” I aim to examine how advanced liberal governing techniques of controlling the body with wearable devices is practiced and experienced in the everyday life of persons with chronic illness like myself.

There are ethical questions to account for when conducting autoethnography. Depending on the character of the specific research, these questions obviously differ. Since this article aims at understanding how and why I practice bodily control and how I experience the management of wearable technologies, persons surrounding me are put in brackets. This does not mean that I ignore the impact of others, but I exclude their explicit presence from the collected material even if they influence my practices. Not least does my interaction with health professionals inform my experience and enactment of IPT, and thereby they are part of the interpersonal bonds affecting the research (Ellis 2007). This is emphasized in situations to which I respond emotionally. However, I have chosen to limit the analysis to my reactions to these situations and interactions.

When the researcher is the same person as the one being researched, it is also important to reflect on the risk for self-harm (Riggare et al. 0000). The research resulting in this article is approved by the Swedish Ethical Review Authority (Dnr 2021-04659). In addition, the interventions used had been implemented regardless of the study conducted. Therefore, I consider the risk for self-harm to be low.

The strive for control

My analysis is structured around different aspects of bodily control, since striving for control haunts my experience of managing the disease. In the first section I discuss externally promoted control, involving information about the body. Thereafter I analyze technical breakdown; bodily breakdown, involving information from the body produced by wearable technologies. The last section concerns fear of losing control, and I discuss the negotiation between sensory information from the body and quantitative information from technology. The analysis moves from how health authorities and professionals advocate patients’ self-control of the body to the practices of managing the disease performed by the person with chronic illness.

Externally promoted control

The Swedish national guidelines for the treatment of diabetes promote patient education and improved control of blood glucose levels to prevent complications (Socialstyrelsen 2018). From the perspective of the authorities, the purpose of medical devices is to help the patient better manage the disease. Or, expressed differently, the purpose of medical devices is to enable the patient to act meticulously upon oneself and thereby improve the efficiency of health care (cf. Rose 1999). For example, the Swedish health authorities push for the need to self-monitor the levels of blood glucose (for example, using CGM) and for insulin pump therapy (or an increased amount of insulin injections) for persons who do not reach the set target numbers (Socialstyrelsen 2018:27). So called “optimal glycemic control” is related to lower risks for complications (Franklin 2016), and thereby reduced complication costs (Jendle et al. 2018). Thus, there is an external push toward the utilization of medical technologies, such as IPT, to control the body of the patient.

However, the utilization of these technologies is not effortless. As a patient, I need to engage in serious information work to start IPT. Øversveen (2020:865) notes that the replacement of the insulin pen with the insulin pump “requires the user to learn new skills and competencies through active experimentation and self-reflection.” To prepare the patient for this, diabetes care in Sweden often uses group-based education since group settings are perceived as more effective than individual education (Cairns and Stoltz Sjöström 2022; Socialstyrelsen 2018). Accordingly, I received an invitation from the hospital I usually visit to participate in two all-day group sessions to begin the implementation of IPT.

Before attending the first appointment, I was asked to choose which manufacturer and version of insulin pump I wanted to use. Colorful pamphlets from different commercial manufacturers advertising their products were distributed from the public hospital to guide me. I open a pamphlet: “A young woman in a sporty outfit smile at me. The writing says, ‘Focus on your life. Not your blood sugar levels’” (my translation, October 22, 2020). The other manufacturers have similar messages. Young persons and smiling parents with happy children are portrayed on the pages. Insulin pumps are described as easy to use and easy to hide. Innovation and future-oriented technology are emphasized. According to the manufacturers, I will improve my blood glucose control and experience more freedom by incorporating IPT. When looking through the glossy pamphlets I find it interesting to note what is not prevalent. There is no blood described in the picture or text in any of the pamphlets. There is no penetration of the skin. No pain. The needed maintenance work is neither described, such as information that you must shift infusion set every third day by inserting a new needle into your stomach. These maintenance practices soon enough tend to become part of everyday life. Some weeks after I implemented IPT I make the following note:

Changing the infusion set is no longer a procedure that makes me sweat with nervousness. I’m beginning to learn how it should feel when the reservoir is emptied of air by drawing the air into the syringe. There’s no longer any internal persuasion required before I press the plastic surrounding the infusion set, as the needle, propelled by a spring, pierces through the skin into the fat. These bodily practices are incredible tactile, sometimes making my body feel more like a physical function than part of me. (03.11.2021)

But when looking at the pamphlets, I am still unaware of how this maintenance work will play out.

The logic of choice saturates the text (Mol 2008). I am supposed to be, or become, well-informed and thereby able to make the right decision of insulin pump for me. “To choose how to insert insulin into my body becomes a way of shopping” (October 22, 2020), I note with both amusement and a hint of unease since I find it hard to trust the information (cf. Wilson 1983). Also, the pamphlet illuminates the irrelevance of the logic of choice in this situation. If I truly could choose, I would go for the alternative of not having diabetes and refrain from implementing IPT. But that is clearly not an option. Also, as a patient I am not able to rationally choose between the insulin pumps knowing what is best for me, since there are so many uncertainties I do not know of before starting IPT.

Thus, to implement IPT is not a choice, it is something else, and to make this decision within a logic of choice does not improve my control. Consequently, I do not want to act as customer in relation to which insulin pump to use. Instead, I would have preferred to sit down with my nurse and together explore different options and find out which insulin pump suits me. That would be a logic of care. However, due to structural factors in Swedish health care, the logic of care clashes with the logic of choice (cf. Mol 2008). When the nurse in the group session I participate in presents the different insulin pumps to choose from, which are the result of a public procurement, she is not allowed to inform us that one of them will be excluded soon due to repeated problems and complaints from users. When one of the participants asks about that particular pump, the nurse reveals this information anyway.

Previous research on persons with chronic illnesses shows that many rely on personal relationships shared in social networks to receive the information they need (Veinot 2009). Currently, some of this networking is conducted online on social media platforms. In Facebook groups for persons with diabetes, the posts on which pump to choose and which to avoid are manifold. In the discussions, persons talk about their experiences, list pros and cons, give advice and answer questions. Thus, the information shared is first-hand information received from the senses, also referred to as experiential information (Neal and McKenzie 2011; Veinot 2009, 2010). The experiential information incorporates sensory information from lived events and cognitive-affective information, consisting of the analysis and interpretation of these events (Savolainen 2022b). In social media settings, the experiential information is valued and creates trustworthiness. Practices of sharing experiential information to peers are also manifestations of a logic of care.

The information work needed before starting insulin pump therapy also involves secondhand information on learning to count carbohydrates in food, since the pump determines how much insulin it will deliver from the number of grams of carbohydrates you enter into the pump before you eat. Therefore, a dietitian is present at the group session to give a lecture and to advise me and the other participants during our first meal with IPT. The practice of calculating carbohydrates is seen as a question of calculating plain numbers and the body is treated as an object consisting of chemicals. This relates to a current nutritionism paradigm in which foods are reduced to their biological functionality, disregarding their cultural and sensual qualities (Scrinis 2008). However, in real life, carbohydrates are not numbers but bread, cheese, pasta, vegetables, lentils and beans, that are boiled, fried, raw or maybe oven baked. Our food preferences depend not only on our taste buds but also on emotional, cultural, socioeconomic, psychological, and biological factors (Zwierczyk et al. 2022). This could explain my emotional response at the session to the interaction with the dietician who tried to convince me to digest food I dislike:

The dietitian looks at me authoritatively. She makes me feel like fourteen again. As a teenager, I did not want to do what the adults told me to. I refused their truths. She [the dietitian] wants me to drink milk to complement the meal to increase my intake of carbohydrates. I don’t drink milk. I don’t like milk. In addition, I most certainly don’t want to be told what to eat. It is a special sense of aggrievement when someone in a position of power touches your body. Not “touches” as a physical contact but touches as a way of attempting to affect the body. She wanted to force the milk into my mouth. She tried to do it with words. But I put my lips together. (19.10.2021)

As a person with diabetes, what I eat is central to the management of the disease. I am not supposed to simply enjoy the meal in front of me and relish its flavors. Instead, the meal is information I must properly encode to be able to control my bodily response to nutrition by utilizing wearable technologies. The role of the dietician, a presumed cognitive authority, is to govern my conduct and make me act rationally and not emotionally to the meal (Savolainen 2022a; Wilson 1983). However, the focus on nutrition and the neglect of other values undermines the dietician as a cognitive authority (cf. Savolainen 2022a:3).

The digestion of food and the procedures related to it illuminate the controlling elements of managing diabetes. This bears parallels to how persons with eating disorders control their selves and their bodies by controlling their intake of food. Previous research by Schwartz et al. (2002) on persons with T1D shows correlations between sense of control, including bodily control, and eating disorder symptoms. Schwartz et al. (2002:1991) therefore stress the need to recognize “the importance of personal control” to help clinicians identify patients at risk of developing an eating disorder. This also illuminates the complex and deceptive character of control; on the one hand, it is something that persons with diabetes are supposed to practice; on the other hand, too much control may result in, for example, diabetes distress, diabetes burn-out (Kiriella et al. 2021), or even eating disorders. Thus, the imperative to self-govern and control the disease may result in other illnesses.

Technical breakdown; bodily breakdown

In the analysis above, I discuss how control over the diabetic body – or the body of the person with diabetes³ – is externally promoted. At the same time, it is executed by the patient. Life with a chronic illness such as diabetes is a never-ending, micromanaging of organizing what to eat and when, taking into account a number of circumstances, such as if you plan to exercise, if you are stressed, if you have a cold or other infection, and adjusting the amount of insulin accordingly. If I, for example, fail to correctly calculate the number of carbohydrates or if I go for an unplanned walk directly after finishing a meal, it can result in serious hypo- or hyperglycemia. If the blood glucose is rising, I need to add an extra bolus dose of insulin to counteract it (at least if I don’t plan to exercise during the following hour). If the blood glucose level is dropping, I need to eat something sweet to avoid hypoglycemia. Thus, to exercise bodily control is to properly use the technologies to manage the blood glucose level and keep it in range – not too low and not too high.

The balance is delicate and sometimes not even desirable. For example, if I plan to go for a long-distance run, a blood glucose level on the higher end could be more appropriate than a value in the target area to avoid hypoglycemia (Montt-Blanchard et al. 2022), and experiential knowledge is crucial to determine which numbers are appropriate in which situation. Even so, wearable technologies are fundamental to these practices of control by making the information accessible to me. CGM enables me to constantly follow the levels of blood glucose by transmitting the data to the pump. The pump visualizes the blood glucose data in curves and numbers and shows if the level tends to go up or down. Before I used these technologies, I could be unaware of a high blood glucose value, simply because I did not measure it. Today, the alarm on the pump both draws my attention to values out of range and pushes me to act on it. Therefore, the information received from the wearable technologies informs my management of the disease and changes my experience of the disease. It enables me to control my body and manage my disease to a new degree, but it also raises the expectations on me to do so. The logic of care in this context allows me to consider the degree of control that contributes to my overall well-being, rather than fixating solely on achieving optimal outcomes.

As described, a blood sugar level on the higher end could be planned for, but this is far from always the case. During instances of loss of control, for example, when the blood glucose level is rising and I cannot understand why, the relationship between body, self, and technology is rattled:

Yesterday evening was chaotic since my blood sugar was rising and rising, even though I increased the amounts of insulin. Should it be like this? I continued to insert more insulin during the first half of the night, and the alarm on the insulin pump repeatedly beeped. [due to the high level of blood glucose] (19.10.2021)

A situation like this, when I cannot make sense of what happens in my body (why is the blood sugar raising even though I insert more insulin?), is alienating and underlines my dependence on technology in the form of the insulin itself and the devices used to incorporate it into my metabolism (cf. Mol 2002:37). When I cannot understand my bodily response, the body does not feel as an integral part of self. In this situation, I cannot lean on any experiential information; I am in alliance with the technology and make use of the technical devices to try to control the seemingly irrationally responding body.

In other situations, it is the technology that comes forth as irrational or alien. For example, I know from experience that my blood glucose will drop acutely if the amount of active insulin in my body exceeds one unit when I go for a run. Endurance physical activity, such as long-distance running, is related to a high risk of hypoglycemia (Montt-Blanchard et al. 2022:2). Therefore, I have learned from experiential knowledge that I need to change the pump settings to “sleep profile” and activate a certain personal profile at least an hour before I exercise to prohibit the pump from inserting insulin even if the blood glucose level is expected to raise above the target area.⁴ These practices manifest the pump as something exterior to my body and self. It is detached from my intentions and responds the same regardless of the situation I am in. I must manipulate the device to make it work in my favor; otherwise, it disrupts my plans and threatens my being. This evokes emotions of alienation toward the technological devices. At the same time, the tinkering with technology in these situations can be seen as practices consistent with a logic of care toward myself, as the tinkering enable me to fulfill the exercise I have planned, even though this involves circumventing the algorithms of the insulin pump and to disregard blood sugar targets (cf. Vogel and Mol 2014:314). Even though these practices also control the body, the conduct does not aim at something beyond my own well-being.

Feelings of alienation – of not living or being my body – can also be related to diabetes as an autoimmune disease. It is my own body that has started to attack me, which is both disturbing and paradoxical since immunology is built on the discrimination of self and not-self (Cohen 2004; Price and Walker 2015). According to Cohen (2004:8):

Western medical practice asserts that the crisis known as autoimmune disease arises when a biological organism compromises its own integrity by misrecognizing parts of itself as other than itself and then seeks to eliminate these unrecognized and hence antagonistic aspects of itself.

The taken-for-granted boundary of self and other is thereby dissolved. In the case of T1D, the autoimmune system destroys insulin-producing cells in the pancreas, causing an insulin deficit. The attack thereby marks the start of the illness, but when the insulin-producing cells are destroyed, this internal war is over. Instead, the battlefield extends into the medical technologies that I attach to my body to replace the malfunctioning biological parts. The wearable technologies are both self and not self, since they are incorporated into my bodily functions, and I am dependent on them to stay alive. A malfunctioning insulin pump can rapidly result in severe conditions and ultimately death. The urge to control the body using (wearable) technologies is therefore also biological.

Price and Walker (2015:11) describe how persons with autoimmune diseases may perceive the world as a “dangerous and risky place” due to the internal threat of their body to their body. Since my body lost that war when my insulin-producing cells gave up, my biological body is not what causes me to worry. Instead, I constantly dwell on the risk of not being able to manage the disease – and control my body – due to malfunctioning technologies such as a bent needle hindering insulin from reaching the body. This is something most users of IPT have experienced, and it happened to me for the first time a few months after implementing the treatment: “The alarm on the pump beeped and beeped and when several bolus doses of insulin didn’t do any difference, I realized that something must have gone wrong” (January 28, 2022). This time, I discovered the malfunctioning infusion set early on and prevented severe symptoms. The next time it happened, I was not as lucky, and I experienced ketoacidosis for the first time. The technology keeping me alive had suddenly turned on me.

The failing body as well as failing technology draws attention to the diffuse boundaries of body, self and technology (Price and Walker 2015:15). Forlano (2017:3) describes this “disabled cyborg” as a body that is “networked and dependent on a system of technologies that is fragile, vulnerable and prone to breaking down.” This description resonates with my experience of how technologies keep me alive, but when they malfunction, they threaten my life. This underlying potential of breakdown threatens my sense of wholeness and disrupts my integration of body, technology, and self (Charmaz 1995:657). In these situations, the logic of choice is out of place. The term “choice” implies that I can stand outside the situation and rationally decide to act in different ways (Mol 2002). But in reality, I am involved in the situation and try to manage it to the best of my ability to sustain my body and self.

Fear of losing control

As described above, loss of control of type 1 diabetes can result in severe symptoms. When addressing diabetes complications, both short-term and long-term complications are prominent risks. They illuminate not only how temporality affects the management and experience of chronic illness but also the temporal aspects of emotions of hope, despair, and abidance.

The short-term complications are mostly related to instances of high or low levels of blood glucose. Above, I mention a situation when the technology malfunctions, my blood sugar rises and eventually causes a ketoacidosis. For most persons with T1D, this is an extraordinary event. However, instances of low blood sugar, hypoglycemia, is by contrast rather usual. The sensory experience of low levels of blood glucose is tangible and unpleasant, as described in this excerpt:

I woke up during the night with the lowest level of blood glucose I have had for a long time/ … /After eating a half package of raisins I felt the familiar sensations of a rising level of blood glucose, which delusively resembles the sensation of a sinking blood glucose; sweating, twitching, and discomfort. (12.09.2021)

However, sometimes the sensory information is not as easy to decode. This can cause me to distrust my own reading of the bodily information, as in the following situation where I once again wake up in the middle of the night:

I get the idea that maybe the blood sugar is not low after all. Maybe I woke up for another reason. Certainly, the sensory experiences of my body are the same as when the blood sugar is low, but not very low: No perspiration. No numb lips. No dizzy thoughts. But a certain kind of alertness. A restlessness in the body. A kind of tingling feeling, which is annoying and not pleasant. It feels like the body does everything to stop me from ignoring the sensations. It needs sugar and that information is passed on via sensations. I decide to check my blood glucose. The numbers are red; 3,1. I feel relieved when my bodily sensations are confirmed by technology that displays my inner bodily values in concrete numbers. (11.11.2020)

In this instance, I use information from wearable technology to confirm the sensory information and to justify actions for increasing the level of blood sugar. The technology thereby plays the role of an objective control mechanism in the management of the disease. In communication with health professionals, this presumably objective character is put in play when data transmitted from the insulin pump, visualizing curves of average blood glucose levels and insertion of insulin, are often used as starting points for the consultation. In Facebook groups for persons with diabetes, many persons express their worries about what the health professional will say when looking at their curves, and others post comments on what health professionals have said when reviewing their data. However, there is not always harmony between the curves produced by the information retracted from wearable technology and the co-aligning sensory experiences. If, for example, I plan to go for a longer run, a perfect blood glucose is not preferable, as explained. In addition, seemingly perfect curves may hide severe problems of anxiety and controlling behavior to reach the target. If a consultation does not reach beyond the numerical data the health professional thereby run the risk of inadequately providing care, since the numbers alone does not capture how a certain episode was experienced. But if a logic of care is practiced, the doctor or nurse will be interested in how I am doing and ask questions that provide essential information that may explain deviating data.

Long-term complications are intertwined with temporality in other ways. When considering long-term complications, the fear of losing control of the body is a fear of not being able to predict how managing the disease today affects how the body will respond in the future (Balfe et al. 2013). In relation to short-term complications, I get sensory information when my blood glucose level is low, and the insulin pump starts to beep when the level is high. However, I cannot receive any concrete information on which long-term complications I as individual will suffer from. I can only get risk estimations. Severe long-term complications from diabetes include impaired vision (retinopathy), kidney failure, amputation, cardiovascular disease and even mortality. Knowledge about these symptoms causes many persons with diabetes, as well as parents of children with diabetes, to despair (Rifshana et al. 2017). I am not an exception:

Sometimes I am struck by thoughts that overthrow me and the person I believe myself to be. I just come to think of what a participant at the group session told me when I was about to implement insulin pump therapy. She told me about her eyes. She had undergone several laser treatments. Nowadays she had heavily impaired vision. She told me about the pain the laser treatments cause. To be set in a chair that is anchored in the floor to hinder the person in it from pushing it away from the laser when it hurts too much. About the tools that bends your eyes open. I see scenes of torture in my head. Unpleasant experiments. I don’t even dare to reflect on the fact that I can be the person in the chair in the future. That after all, I would have chosen to undergo this torture-resembling treatment to not go blind. That a choice like that hardly could be referred to as a choice at all. (25.10.2021)

The excerpt manifests the deep interconnection between my body and my sense of self. The disease and the fear of long-term complications disturb my previous relationship with my body; I was a long-distance runner who trusted my body to function in a predictable and rational manner. I perceived my body as an object to manage to improve its fitness, at the same time as the body mostly was oblivious to me. Nowadays, I am only able to be unaware of the body if the wearable technology manages it, and if the technology is already taken care of. And even so, the fear of losing control of the body is always prevalent and it profoundly affects my sense of self. In this situation, the logic of choice is of no help. As I write in my notes, the scenario I dread could hardly be described as a choice. To deal with my fear and anxiety I must care for myself. I must continue to tinker with technology and manage the disease, knowing that I never will be healthy and being aware of the unpredictability of the disease, but still aiming for a good life.

Concluding comments

The main research question concerns how I experience the managing of disease by utilizing wearable technologies, and this is operationalized in sub-questions on how and why control of the body is practised. In the analysis, I discuss how controlling my body is promoted from the health sector, encouraging me to properly manage the disease. I also show how continuously tinkering with my wearable technologies to keep my blood sugar level within range is an essential part of my everyday life. I analyze the imperative to self-manage diabetes and controlling the body as integral to how we are governed as prudent and active individuals who take responsibility for our health (Rose 1999), but also how control of the body is necessary for well-being, and ultimately, for staying alive.

However, the above-described conceptualization of the individual in advanced liberal society is questioned by Natasha Dow Schüll in the context of self-tracking technologies. Schüll (2016:14) argues that self-tracking technologies rather represent an individual who is “a passive, choosing self who will want to employ devices to actively help her.” Schüll (2016:13) argues that wearable technologies actively guide us to make certain choices and that tech-companies imagine customers who “wish to outsource the labor of self-regulation to personal sensor technology.” The hybrid closed loop-system I utilize indeed transfers autonomy from me to the technology, since the insulin pump can increase the amount of insulin it injects without me even knowing about it. Even so, I am not convinced that the utilization of personal sensor technology reduces the labor of self-regulation when it comes to wearable medical technologies. The argument’s validity is influenced, in part, by the perspective of the author. If I did not have diabetes my pancreas would have been able to increase the amount of insulin in my blood stream without me knowing. By outsourcing this adjustment to the insulin pump, I do reduce the labor for me as a person with diabetes, but this is a task that a healthy organ otherwise would handle.

I also question if wearable medical technologies actually reduce the total amount of labor. As shown in the analysis, the technological devices allow the outsourcing of certain labor, but at the same time it increases other tasks, such as to maintain the technology and to micromanage the body in ways that previously was unthinkable. In addition, the utilization of medical technologies to manage diabetes does not seem to reduce expectations on the individual to be calculating and responsible actors. To the contrary, the implementation of IPT statistically increases glycemic control (Jendle et al. 2021). When I, as patient, am provided with CGM and IPT, allowing me to track my blood sugar level in real time and act upon it, I no longer have any excuse for failing to manage the disease effectively. This expectation on bodily control aligns with a logic of choice in which I as patient am expected to make responsible choices and thereby keep the blood sugar within range. But it is not possible to control all the variables that effects the blood sugar (Mol 2008:36). Instead, to manage diabetes is to “[t]ry, adjust, try again” (Mol 2008:22). Such attentive practices resonate with a logic of care which is open-ended and constantly adapting to the situation at hand.

The analysis also illuminates the complex relation of body and technology. When the blood sugar stays within range the technology sometimes disappears into the background. I go on with my everyday life without noticing the CGM on my arm or the pump on my stomach. However, if I then decide to go for a run, I should have changed the settings in the pump an hour before. To always plan ahead, even if everything runs smooth, is crucial when managing chronic illness and once again underscores the work involved when utilizing wearable medical devices. In addition, if the blood sugar does not stay in range, the technology can be my friend combatting an unruly body, or the technology may be malfunctioning and come forth as the unruly actor combatting my body.

To sum up. Managing a chronic disease is a Sisyphean task. It is to continuously attend to and tinker with the body. To never be able to ignore the information that is thrown at you – from numbing lips, a beeping insulin pump or a health professional advising you to adjust the amount of insulin you insert a specific time of the day. I write in my autoethnographic notes:

To live with disease. What is a good life with disease? How much should the disease be allowed to govern? How much time and effort should it be allowed to take? It would have been simple if it was possible to spend slightly less attention on the disease in exchange for slightly worsening values. However, in reality it is not as simple. Slightly less attention can often result in catastrophic values, which require much more time and effort. (07.12.2021)

At the same time, the body is not ours to control. We are not autonomous subjects able to make choices that have certain well-defined effects. If I disconnect the insulin pump for an hour to take a bath in a swimming pool, it may either have no impact on my blood sugar level or cause a dramatic increase. If I choose not to go swimming to be able to regulate my blood sugar level, it may impact both my physical and mental well-being. I therefore experience life with T1D as a constant balance on the edge. Not only to keep the blood glucose within range but also to control the body to a proper degree – not too little, but neither too much. I must attend to the values displayed on the screen, but I shouldn’t monitor it too often since it then turns into hypervigilance (Montt-Blanchard et al. 2022). But this complicated endeavor to control the body and make the right choices can be conceptualized differently. By employing the logic of care, it become clear that managing the disease does not have to be related to controlling the body. Instead, the perspective of care enables me to perceive my everyday management of my disease as a constant tinkering to improve my life (cf. Mol 2008:102). According to this logic, the aim of managing the disease is not to control the body to achieve perfect blood sugar levels, but to understand that “nothing will ever be perfect” and to keep trying and live according to what constitutes a good life for me (cf. Mol 2008:102).

Acknowledgments

The author would like to express gratitude to the anonymous reviewers, editors and colleagues who generously have contributed to improving the text. The research is approved by the Swedish Ethical Review Authority (Dnr 2021-04659).

Disclosure statement

No potential conflict of interest was reported by the author.

Additional information

Funding

The author(s) reported there is no funding associated with the work featured in this article.

Notes on contributors

Lisa Engström

Lisa Engström is a senior lecturer in library and information studies. She is the contact person for the Medical Humanities Research Node at Lund University. Her research interests focuses on the entanglement of body, technology and self and experiences thereof.

Notes

1. There are many different manufacturers of both CGM systems and insulin pumps. There are minor differences between them, but this description is based on the devices used by me (Dexcom G6 and Tandem t:slim X2 with IQ technology), since the empirical material in this article is autoethnographic.

2. The technology that enables the pump to not only decrease but also increase the doses of insulin has only been approved for medical use a few years.

3. There is relevant critique to labeling persons with a sickness in a way that identifies that person with the sickness. However, in some situations I truly do identify with my disease: “I think about the fact that many persons with diabetes reacts with hostility when they are referred to as diabetics. They usually proclaim that they are not their diagnoses. They are persons with a diagnosis. However, I wonder if I also might be my illness. I practice diabetes. Every day I enact the illness multiple times. The illness inhabits and influence my experience of the world. I am a diabetic.” (22.11.2021).

4. It took weeks of failed attempts to run longer distances without more or less acute instances of hypoglycemia before I found a solution. In Facebook groups I learned that I was not the only one struggling with the same problem, but there was a solution. If the so called “sleep profile” is turned on, the pump does not provide any bolus doses of insulin, it only increases the basal dose. Thus, you can turn on the sleep profile and simultaneously change the general settings in a way that ensures a low basal dose of insulin, and thereby secure low levels of active insulin.