Karen, who has lived with type 1 diabetes for three years, explains how she is only just starting to properly manage her daily self-care, and how it interrupts her various daily routines. “There are so many unpredictable issues surrounding self-management, and learning never stops”, she says, while she accentuates all her doubts about self-care: “What will happen, if I eat an apple instead of my usual cooked oatmeal when I bike to work? And, what if I take the car instead of the bike? What will happen to my blood sugar levels? And, if I have a flu or an infection, how will it then affect it? And then the carbohydrate counting, and the needles and all the stuff I have to carry around at all times!” Karen considers herself a new beginner with the disease, which is why she has become an active member of five Danish communities on Facebook targeting type 1 diabetes in relation to food, exercise and specific self-care technologies. Karen has never been a keen user of any social media platform. She loves the fact that she can turn off her smartphone when she does not want to be disturbed. Upon diagnosis, at the age of 53 years, she found out about various communities on Facebook where she could learn more about the disease. Now she scrolls through them several times a day at her own pace in an effort to learn all she can about the disease and especially how she might prevent too many low blood sugar levels during and after exercise. She has just started working out again having been advised to do so by peers within an online community covering type 1 diabetes and exercise. Through uploaded photos in the Facebook community, Karen received a kind of embodied patient knowledge on how to attach a glucose monitor in a different way than she was initially taught to do at the clinic. The continuous glucose monitor stays attached to her body with a special type of adhesive, connecting to her insulin pump through a Bluetooth signal. Thanks to this new technique of attachment, the monitor stays attached to her body without either falling off or losing its signal to her insulin pump machine, problems which had previously caused her a lot of frustration as she felt insecure about the pace of changes to her blood sugar level during exercise. This type of tinkering with the technology at hand has been attended to by scholars examining how patients and healthcare professionals’ piece together various logics of care, all the while building forms of experimental knowledge (Pols 2013, Kingod 2020).
In the last decade or so, we have seen the emergence of a critical mass of social science and humanities scholars who have researched the multiple and diverse ways in which especially chronically ill patients, healthcare practitioners and software developers engage with the internet, social media, smartphone technologies, apps and electronic health records (Kingod et al. 2017). Researchers have been concerned with questions related to patients’ practices, health itineraries, purposes, motivations, expectations and ways of mobilizing digitalized devices. Although new apps continually surface in a sea of social media providing patients with ever more opportunities to interact with and surf through concerns of chronic living, Facebook is still the preferred social media platform in Denmark for connecting in disease-specific groups and communities.
For my PhD dissertation, I carried out online-offline fieldwork among people living with type 1 diabetes in Denmark focusing on their use of social media for sharing of knowledge on how to live with the disease in daily life. Through online and offline ethnography, I explored the boundaries of digital engagement for today’s connected patients. Fieldwork took place in various parts of Denmark, where I peeked over the shoulders of my informants while they managed technologies such as smartphones, tablets and computers, while also handling complex digitalized self-care technologies that linked them into an online sea of embodied patient knowledge. I followed the people I met into various contexts of daily life to understand how social media has become a vital part of living with illness. The times where patients sat behind their computer screens as isolated individuals googling health information have been replaced by opportunities to engage and interact across space and time. Online support has become available worldwide at any time with smartphone technologies and downloaded social media apps, easily reachable by a grab in the pocket – just one click away.
In Denmark about 32,000 people are diagnosed with type 1 diabetes, which accounts for an estimated 10% of the overall diabetes population (both type 1 and type 2). Type 1 diabetes has long been recognized as a juvenile chronic illness; however, incidence has increased among adults. Type 1 diabetes mellitus is a chronic autoimmune illness diagnosed by high concentrations of glucose in the blood that result from autoimmune-mediated destruction of beta cells in the pancreas, which then fail to produce insulin. Daily insulin injections are necessary for people with type 1 diabetes to avoid the ketoacidosis produced when the body cannot metabolize sugar and must burn fat for energy. Without correct treatment it is a threat to health over time. At the same time, self-management is a 24/7 endeavor with many self-care practices resembling the work of a nurse, such as changing vials of insulin that go into the insulin pump, checking blood sugar levels by puncturing a fingertip with a small needle and interpreting the resulting number returned by a blood glucose measurement device, not to forget the counting of carbohydrates for every meal.
The kind of peer-to-peer knowledge that is shared and re-circulated within communities on Facebook can be thought of as what Pols (2014) has called ‘patient knowledge’, a kind of embodied knowledge of how to live with the disease. It is a form of knowledge that Karen and her peers cannot receive when attending their quarterly outpatient check-ups at the diabetes clinic. “I learn about my numbers at the clinic”, Karen says, “but how to live with the disease in daily life, I learn from peers on Facebook”.
This is why she reaches out to peers via social media while also ‘lurking’ within several supplementary Facebook communities for adults with type 1 diabetes. She looks for advice and tips that could ease everyday life and make self-management more doable. Karen has no sense of how much she actually uses Facebook, and she laughs when I ask her about what time during the day, she usually presses the button on her app on the smartphone that would link her into Facebook. I even try to make her plot in the time spent on a very simple drawing of a timeline representing the 24 hours of a day. I feel a bit like having asked the stupidest question when Karen draws a large circle around the whole timeline. Karen reflects out loud: “This is not easy. I use it a lot. Like when I take the bus to work, when I have a break at work, definitely when I have lunch, sometimes before, during, after exercise, and many many times at night when I again wake up drenched in sweat and feeling really weak, dragging myself to the fridge to drink a liter of orange juice. Then I sit there on the floor, with too much juice on my shirt because my body is trembling, and I start reaching for the chocolate bar in the drawer. At those times where I feel terrible about the disease controlling me and totally lost in all my binge eating, I reach out to supportive fellows. Just a thumbs up, a smiley or a nice ‘I know how you feel’ message can make me feel good again.
Social media platforms became popular in the 2000s and Facebook is still the largest social media platform worldwide. Since Facebook launched its community pages function in 2010, disease-specific groups have turned into larger interactive communities. With smartphone technologies and a downloaded Facebook app, peer support has become reachable by one click on the smartphone screen. Facebook operates with fluid borders and Karen can both become a member of open larger communities, smaller closed groups as well as more intimate secret groups. In a very large American community, she reads a lot about how to avoid low blood sugar levels during exercise, while in the smaller Danish closed communities on type 1 diabetes she learns how to apply for assistive devices such as glucose sensors from the municipality. She recently became a member of a closed community for about 15 Danish women with type 1 diabetes where she learns about gender specific challenges such as how hormonal levels affect blood sugar levels. Social media platforms have not only become a popular space for social interaction, but also for learning more about how to live with a chronic disease and a valuable tool for gathering embodied knowledge between quarterly check-ups at the clinic. Facebook has become a facilitator of the many therapeutic itineraries that people with type 1 diabetes follow to live a better life with the disease. Many people are already on Facebook with personal profiles that easily links them into the various communities of support. Although several researchers have attended to the pitfalls and downsides of Facebook as a space filled with fake news, deep fakes and health misunderstandings, Karen is neither bothered by the big brother effect or that she has to sort through a huge amount of information to reach the right kinds of advice for her. She acknowledges that Facebook contains a lot of “noise”, but as she notes, she can always withdraw her membership status, close the app or even remove it if it becomes too much (Kingod & Cleal 2019).
Natasja Kingod is a Postdoctoral Research Scientist at Steno Diabetes Center Copenhagen. She received her PhD in Anthropology from the University of Copenhagen.
“Chronic living: ethnographic explorations of daily lives swayed by (multiple) medical conditions” is a series being published alongside the Chronic Living conference, as part of the VITAL project. The series is edited by Ayo Wahlberg, Jieun Lee, Anna Mann, Arseli Dokumaci, Natasja Kingod, Marie Kofod Svensson and Laura Heinsen.
Kingod, N., Cleal, B., Wahlberg, A., & Husted, G. R. (2017). Online peer-to-peer communities in the daily lives of people with chronic illness: a qualitative systematic review. Qualitative health research, 27(1), 89-99.
Kingod, N., & Cleal, B. (2019). Noise as dysappearance: attuning to a life with type 1 diabetes. Body & Society, 25(4), 55-75.
Kingod, N. (2020). The Tinkering M-Patient: co-constructing knowledge on how to live with type 1 diabetes through Facebook searching and sharing and offline tinkering with self-care. Health: (London. 24 (2).
Pols, J. (2013). The Patient 2. Many: About Diseases that Remain and the Different Forms of Knowledge to Live with Them. Science & Technology Studies, 26(2): 80-97.
Pols, J. (2014). Knowing patients: turning patient knowledge into science. Science, Technology, & Human Values, 39(1), 73-97.