Lectures

Chronic living: ethnographic explorations of daily lives swayed by (multiple) medical conditions

This article is part of the series:

On the 12th of January 2020, the World Health Organization confirmed that the “mystery virus” which, according to reports from China, had infected some 50 people in the city of Wuhan, was not SARS following the genetic sequencing of a “novel coronavirus”. Within two weeks, Wuhan’s hospitals were overwhelmed, and the city was sent into lockdown as health authorities scrambled to build an entirely new hospital in a record ten days. One year later, the COVID-19 pandemic continues to strain healthcare systems around the world, with hospitals in Los Angeles, Stockholm, London, Manaus and Lisbon on the brink of being overwhelmed. While vaccines (developed, mass manufactured and hoarded by governments at record speed) have generated hopes of pandemic control, it is nevertheless more than likely that COVID-19 is here to stay. The pandemic may well become chronic as COVID-19 endemically settles alongside (and in syndemic interaction with) an already long list of communicable and non-communicable diseases that are lived and contended with by patients, families, healthcare workers and governments alike on a daily basis.

It is in some ways ironic that a communicable disease such as COVID-19 led to the last-minute cancellation of an international conference on Chronic Living, which was planned to take place in Copenhagen in April 2020. Epidemiological transition theory had long informed narratives of a gradual shift away from communicable and towards non-communicable diseases as a sign (or side effect) of societal development and progress. In Herring and Swedlund’s words, there was a “belief that epidemics were controllable, at least in a Western biomedical context, and less important than chronic, degenerative diseases” (2010: 15). Such transition theory has certainly been subject to substantial critique, not least by scholars who have highlighted the fact that non-communicable medical conditions are not solely ‘a problem of the global North’, rather they are equally urgent challenges whether in Africa, Australasia, the Americas or Europe (see Manderson & Smith-Morris 2010; Reubi et al. 2016; Vaughan et al. 2021). Indeed, close to 500 researchers from all continents had responded to the call for papers that we sent out for the Chronic Living conference, which will now take place online from 4 to 6 March 2021.

COVID-19 and the lockdowns that are being used to (try to) contain it for obvious reasons dominate healthcare policies, media headlines and social media globally, for a time, relegating other diseases into the “underlying medical conditions” that place some individuals at greater risk of serious complications and death from COVID-19. However, the fact remains that millions of people worldwide continue to live with chronic conditions like type 1 diabetes, cancer, HIV, pulmonary disease, congenital heart defects, coronary artery disease, dementia or kidney disease. These are not “just” underlying conditions. They are medical conditions that profoundly shape the everyday lives of those who have them, as well as the family members and healthcare workers who help people live with these medical conditions, not least in times of pandemic.

In this Somatosphere series – through a chain of ethnographic accounts – contributors explore exactly how various forms of chronic living take shape in a world where genes mutate, kidneys fail, congenitally defect hearts come into the world, cognition declines, immune systems weaken or run awry, affects unmoor, metabolisms unravel and cells divide uncontrollably under starkly different living conditions. For if there is one thing that the COVID-19 pandemic has laid bare, as a kind of ‘contrast agent’ injected into the social veins of the world, it is the stratified livability (Manderson, Burke & Wahlberg 2021) that has sedimented following centuries of gross socio-economic inequality, global injustice and racial discrimination. For many, there are multiple medical conditions to contend with, each complicating and often aggravating the others. What we have come to think of as “chronic living” through our collaborative research project on “The Vitality of Disease” takes many forms and shapes, depending on the specificities of medical conditions, socio-economic circumstances, care networks and (lack of) access to healthcare.

It is with this “living with” that each contributor to this series is concerned, as their condition(s)-near ethnographic fieldwork (Svensson 2020: 37) especially attunes to the actual – often creative and experimental – ways in which people go about daily lives swayed by medical conditions, whether as persons living with medical conditions or as their carers and loved ones. This is what chronic living is – the manifold ways in which people attend to, experience and take care of themselves and their medical conditions often with the indispensable help of loved ones, in differing life conditions and with stratified access to (life-saving) medical treatment and care (see Manderson & Wahlberg 2020: 431).

In 1977, E. Mansell Pattison had argued in The Experience of Dying that once received by a patient, a serious diagnosis resulted in “a crisis knowledge of death” which involved a “chronic living-dying phase” as the patient moved towards eventual death. Likewise, in her recent study of end-of-life encounters in Chinese eldercare institutions, Rose Kay Keiming argues that “for those cut off from both curative and palliative care, life itself turns pathological, and they find themselves suspended in a state of… ‘chronic living’” (Keiming 2020). At the same time, this Somatosphere series shows how chronic living often extends into the many months, years or decades of living with medical conditions that can and increasingly do precede end-of-life. While epidemiologists and health economists have designated and measured these as “disability adjusted” or “quality adjusted life years” (for critical analyses of these measures see Dokumaci 2019; Wahlberg & Rose 2015; Kenny 2015), anthropologists and other qualitative health researchers have instead sought to ethnographically document the different ways in which chronic living comes to be shaped and formed under varying life conditions and within varying political economies of healthcare.

Indeed, the contributions to this series show that if we are to understand chronic living in its complexities, we need to take into account the chronic care infrastructures (Langstrup 2013; Heinsen et al. 2021), the everyday experimenting and vital affordances of people who live with chronic conditions (Dokumaci 2017; Mol, Moser & Pols 2010; Pols 2013; Kingod 2020; Mann 2021; Dumit 2012) as well as intimate lived experiences throughout their life courses (Kleinman 1988; Bharadwaj 2016; Lee 2019), not as mutually exclusive domains of study, rather as constitutive of different kinds of chronic living. Many medical conditions are made chronic through access to life-saving and prolonging treatment, which are nevertheless often complicated by the cascading of multiple medical conditions (Manderson & Warren 2016). Sustained access to appropriate health care is crucial given the techno-medical underpinnings of many forms of chronicity (e.g., insulin injections, factor replacement therapy, regular dialysis, antiretroviral treatment, biologics, antidepressants, chemotherapy) yet we know such access is often at best patchy, leading to lengthy struggles for access to treatment, which sometimes succeed and often fail, ending in suffering and untimely death (Moran-Thomas 2019; Whyte 2015).

When chronic care infrastructures are in place and maintained with care, they can and often do contribute to the normalization of chronically conditions, as chronically ill patients are encouraged and directed to “live well” with their medical condition (Benton et al. 2017; Dumit 2012). Indeed, as it becomes possible for increasing numbers of people to live longer lives with serious chronic conditions, a host of new challenges and dilemmas can arise as pertains their chronic “at risk” (of complications or premature death) status as well as difficult decisions about when end of life care might become relevant. At the same time, we also know from numerous medical ethnographies that people living with chronic conditions are pragmatic, as they embark on pluralistic therapeutic itineraries and devise creative ways to adjust to the chronic homework they are tasked with (Mattingly, Grøn & Meinert 2011; Svensson 2020). And finally, phenomenological accounts have shown how people come to terms and cope with chronic conditions which sometimes “creep up” and often lead to “disrupted lives” whether biographically or socially (Bury 1982; Becker 1997; Bharadwaj 2016). These lived experiences are, likewise, profoundly affected by the socio-cultural understandings and/or stigmatizations of certain medical conditions within communities and families, leading to isolation and ostracization (Whyte 2015; Mogensen 2020).

In these ways, chronic living is a daily reality for an ever-growing number of people and their families and loved ones, and the COVID-19 pandemic has if anything only intensified many of the difficulties these families were already facing. Yet, the ways in which chronic living takes form is dependent not only on failing biologies (all those cascading molecular and cellular disturbances in the bodies of individuals that can and often do eventually lead to organ failures), but perhaps more importantly, on the political economies that determine life conditions and access to healthcare, as well as on the care networks of people living with chronic conditions (Manderson & Wahlberg 2020: 431). Through a chain of paired ethnographic snapshots, this Somatosphere series on Chronic Living zooms in on the temporalities, inequities and everyday forms of experimentation that shape chronic lives among people living with congenital heart defects in Honduras and Denmark, with HIV in Tanzania and Australia, with dementia in South Korea and Denmark, with kidney failure in Mexico and Austria, with (the risk of) cancer in Vietnam and Denmark, with rheumatism in Indonesia and Turkey, and with type 1 diabetes in Denmark an Belize. Such comparative ethnographic glimpses into the everyday lives of people living with similar medical conditions yet in very different socio-economic and cultural settings provides important insights into the very conditions of possibility of chronic living.

The series on Chronic Living has been timed to commence as 400 scholars from around the world meet to exchange ideas and experiences of researching forms of chronic living at the international conference “Chronic Living – quality, vitality and health in the 21stcentury” which marks the conclusion of the European Research Council funded project “The Vitality of Disease – Quality of Life in the Making”(grant no. ERC-2014-STG-639275). The idea for the grant was initially conceived in the Somatosphere piece “Knowledge of living” from November 2014.

Series contributors:

Kane Race (University of Sydney), Josein de Klerk (Leiden University), Eileen Moyer (University of Amsterdam), Le Hoang Ngoc Yen (Kyoto University), Le Hoang Anh Thu (Australian National University), Laura Heinsen (Aalborg University), Helle Vendel Petersen (Hvidovre Hospital), Ayo Wahlberg (University of Copenhagen), Jieun Lee (Yonsei University), Nete Schwennesen (University of Copenhagen), Simone Anna Felding (German Center for Neurodegenerative Diseases), Natasja Kingod (Steno Diabetes Center), Anna Mann (University of Copenhagen), Ciara Kierans (University of Liverpool), Marie Kofod Svensson (Danish Heart Foundation), Nancy Worthington (Independent Researcher), Peter van Eeuwijk (University of Basel and University of Zurich), Arseli Dokumaci (Concordia University), Amy Moran-Thomas (MIT Anthropology)

References

Becker, G. (1997). Disrupted lives: How people create meaning in a chaotic world. Berkley: University of California Press.

Benton, A., Sangaramoorthy, T., & Kalofonos, I. (2017). Temporality and Positive Living in the Age of HIV/AIDS–A Multi-Sited Ethnography. Current Anthropology, 58(4), 454-476.

Bharadwaj, A. (2016). Conceptions: Infertility and Procreative Technologies in India. Oxford: Berghahn Books

Bury, M. (1982). Chronic illness as biographical disruption. Sociology of health & illness, 4(2), 167-182.

Dokumaci, A. (2017). Vital affordances, occupying niches: an ecological approach to disability and performanceResearch in Drama Education: The Journal of Applied Theatre and Performance. 22(3): 393-412. DOI: 10.1080/13569783.2017.1326808

Dokumaci, A. (2019). The ‘disabilitization’ of medicine: The emergence of Quality of Life as a space to interrogate the concept of the medical model. History of the Human Sciences, 32(5), 164-190.

Dumit, J. (2012). Drugs for life: how pharmaceutical companies define our health. Durham: Duke University Press.

Heinsen, L., Wahlberg, A. & Petersen, V. (2021) Surveillance life and the shaping of genetically at risk chronicities. Anthropology & Medicine 27, https://doi.org/10.1080/13648470.2021.1893654

Keiming, R. K. (2020). Chronic Living and Delayed Death in Chinese Eldercare Institutions. Anthropology & Aging, 41(1), 17-30.

Kenny, K. E. (2015). The biopolitics of global health: Life and death in neoliberal time. Journal of Sociology, 51(1), 9-27.

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, 24(2), 152-168.

Kleinman, A. (1980). Patients and healers in the context of culture: An exploration of the borderland between anthropology, medicine, and psychiatry, Berkley: University of California Press.

Kleinman, A. (1988). The illness narratives: Suffering, healing, and the human condition. New York: Basic books.

Langstrup, H. (2013). Chronic care infrastructures and the home. Sociology of health & illness35(7), 1008-1022.

Lee, J. (2019). Living with/out dementia in contemporary South Korea. Medical anthropology quarterly, 33(4), 501-516.

Manderson, L. & Smith-Morris, C (eds). (2010). Chronic Conditions, Fluid States: Chronicity and the Anthropology of Illness. New Brunswick, NJ: Rutgers University Press.

Manderson, L., & Wahlberg, A. (2020). Chronic living in a communicable world. Medical anthropology, 39(5), 428-439.

Manderson, L., & Warren, N. (2016). “Just one thing after another”: recursive cascades and chronic conditions. Medical Anthropology Quarterly, 30(4), 479-497.

Mann, A. (2021). Abandoning questionnaires – Improving quality of life in daily nephrology practice. Nordic Journal of Science and Technology Studies (NJSTS). 8, forthcoming

Mattingly, C., Grøn, L., & Meinert, L. (2011). Chronic homework in emerging borderlands of healthcare. Culture, Medicine, and Psychiatry, 35(3), 347-375.

Mogensen, H. O. (2020). Secrecy and Responsibility in the Era of an Epidemic: Letters from Uganda. London: Palgrave MacMillan.

Mol, A., Moser, I., & Pols, J. (Eds.). (2010). Care in practice: On tinkering in clinics, homes and farms. Bielefeld: transcript Verlag.

Moran-Thomas, A. (2019). Traveling with sugar: chronicles of a global epidemic. Berkley: University of California Press.

Pattison, E. M. (1977). The experience of dying. New Jersey: Prentice Hall

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

Reubi, D., Herrick, C., & Brown, T. (2016). The politics of non-communicable diseases in the global South. Health & place, 39, 179-187.

Svensson, M.K. (2020). At the Heart of Living in-Between: Paradoxes, (In)visibility and Blurred Futures in Families Living with Congenital Heart Defects, PhD Dissertation, Department of Anthropology, University of Copenhagen

Vaughan, M. Adjaye-Gbewonyo, K. & Mika, M. (2021) Epidemiological Change and Chronic Disease in Sub-Saharan Africa – Social and historical perspectives. London: UCL Press

Wahlberg, A. (2014). Knowledge of Living. Somatosphere. 10 November 2014. http://somatosphere.net/2014/knowledge-of-living.html/

Wahlberg, A., Burke, N. & Manderson, L. (2021) Stratified Livability and Pandemic Effects. In Manderson, L., Burke, N. & Wahlberg, A. Viral Loads – Anthropologies of Urgency in the Time of COVID-19. London: UCL Press

Wahlberg, A., & Rose, N. (2015). The governmentalization of living: calculating global health. Economy and Society, 44(1), 60-90.

Whyte, S. R. (Ed.). (2015). Second chances: surviving AIDS in Uganda. Duke University Press.


Leave a Reply

Your email address will not be published. Required fields are marked *