Matters of time in health and illness

Introduction

Time matters in the sociology of health and illness. Experiences of illness, disability, and health are marked by different temporal intervals and disjunctions, from intimate and mundane daily experiences to much longer temporal enactments wherein health in the present is constituted in relation with anticipated futures and (re)constructed pasts (Adams et al., 2009; Green & Lynch, 2022; Latimer, 2018). These experiences are pluralistic and often contradictory in nature, requiring ongoing negotiation between health subjects, care providers and institutions, and various other human and non-human actors (Berg & Bowker, 1997; Kirby et al., 2022; Twigg, 2000). Care also unfolds in prolonged and fleeting ways; caring relationships across formal and informal care settings are structured through time as resource, practice, and affect (Ihlebæk, 2021; Kenny et al., 2019; Wiles, 2003). Imaginaries of past, present, and future configure the disruptive potential of illness and disability for individual selfhood and care (Bury, 1982; Charmaz, 1983), yet can also constitute promise, reassurance, or ambition, such as when mobilised through health policies (Brown & Michael, 2003; Seear & Lenton, 2021).

The temporal dimensions of health matter for how illness and care are prioritised and valued, and understanding this relationship requires us to attend to time as a sociological concern (Adam, 2013; Giddens, 1987; Nowotny, 1994). Sociological approaches to thinking with health and time have been taken up to varying degrees across other recent special issues related to the social studies of health. In 2022, an issue of Critical Public Health collected papers exploring the problem of temporality and chronicity in relation with public health practice (Green & Lynch, 2022). Recent special issues in Sociology of Health & Illness have attended to the intersections of temporalities, materialities, and practices of care (Buse et al., 2018) and uncertainties and fluctuations in the time of disability and chronic illness (McLaughlin et al., 2023). A previous special issue in this journal focused on the sociopolitical issue of waiting in trans health and explored how transgender and gender diverse people experience long waitlists for affirmative and expert care, while also waiting to be recognised as experts in their own lives (Newman et al., 2021).

This special issue of Health Sociology Review sought to collect empirical and theoretical contributions to the study of time in health and illness. We invited submissions to consider how thinking with ‘time’ might offer a flexible and diversely constituted heuristic approach for studying the sociological dimensions of health and care. The potential interest in such a collection was confirmed by the overwhelming response we received to this initial call for papers – more than tenfold what has been possible to include in this issue – which covered scholarship from a wide range of health, country, and disciplinary contexts. These proposals suggested innumerable fascinating approaches to thinking with time as a conceptual tool in health sociology.

The contributions in this issue represent a small taste of this thinking, bringing critical sociological approaches to time to bear on cases situated across Australia, Czechia, Chile, Denmark, the Netherlands, and the United Kingdom. This editorial synthesises and elaborates on some of the key themes emerging across these articles. We organise this thinking in relation with two temporal concerns: horology (or, how time is measured) and chronology (or, how time is ordered). We conclude by reflecting on the implications of these approaches for future sociological research.

Horologies of health and care

The first concern identified by articles across this special issue relates to questions of horology: how do we measure time? At a day-to-day level, health and care practices are generally made measurable by the clock (Adam, 2013). We count heartrates in seconds, we book appointments at set times in the day, we spend minutes or hours undergoing procedures and treatments, exercising, waiting for care, and so on. The clock becomes a way of carving up the day into bounded activities; of keeping time and passing time.

In Western epistemologies, ‘clock(ed) time’ has become the dominant logic for dividing and measuring the unfolding of time in healthcare settings and beyond (Adam, 2006; Jowsey, 2016). Yet the multiple temporalities of illness and care practices, which operate at many interconnected scales and tempos, expose the insufficiencies of the clock as a singular organising device (Davies, 1994; Twigg, 2000). These insufficiencies have been rendered especially visible in the context of the COVID-19 pandemic, which has required a temporal reorganisation of care practices in the form of multitasking, peer collaboration, triaging, adapted routines, and more (Harrison et al., 2023; Kuijper et al., 2022). Such practices enable healthcare professionals to coordinate their work in relation with different scales and speeds of care time.

Sociologists attending to these alternate scales and speeds of care often employ a logic of ‘process time,’ in which the passing of time is understood as processual, unbounded, and pluralistic, and care activities ‘take the amount of time they need to take’ (Davies, 1994, p. 279). In this issue, van Pijkeren et al. (2024) examine the conflicting temporalities of care practice using the example of the ‘region nurse,’ a new, geographically mobile professional role in the Netherlands. The region nurse must negotiate many temporal orders of care work, including their own professional demands, the patients’ private rhythms and domestic routines, and the institutional time of care facilities. These temporal arrangements are further complicated when the time of care becomes imbued with a sense of value or quality; for example, while a patient might seek additional ‘bedside’ care and desire longer and slower care interactions, health institutions might employ protocols that prioritise systematisation and efficiency in order to maximise the intake of patients receiving care (Ihlebæk, 2021). Here, ‘good’ care holds an ambivalent relationship with the time of care.

Process time therefore does not simply describe how long a task takes; rather, process time articulates the relationality of time, in which practices intersect and overlap, speed up and slow down, stretch out and compress, and have indeterminate beginnings and ends (Davies, 1994). This approach is also useful for understanding how care time is organised beyond clinical contexts, such as through mundane domestic practices and personal care routines (Buse et al., 2018; Mol, 2008). In such cases, care becomes folded into the everyday, and the time of care cannot be quantified or demarcated from other material practices. For example, the work of managing a personal pill dosing schedule (Smith et al., 2023) or dressing a person with dementia (Buse & Twigg, 2018) can be located in particular times of day and tracked as repeating practices of care. However, the temporalities of these practices are made in relation with a much more complex care assemblage that is constituted with multiple (human and non-human) actors, everyday routines, domestic materials, and vibrant life stories. Approaching the time of care as processual and relational illuminates complexities in the temporal structuration of care work – care ‘takes time’ but the time of care cannot be measured by the clock nor neatly standardised (Harrison et al., 2023; Timmermans & Epstein, 2010).

The organising limits of the clock become even clearer when health, illness, and care are investigated at larger scales, shifting our focus from health practices to health events or biographies or histories. Sociological literature on chronic illness and disability has called attention to the ontological politics of ordering illness in relation with time. For example, terms such as ‘prognosis,’ ‘mortality,’ ‘lived (or living) experience,’ and ‘survival’ all enact long-term illness as prolonged illness, which can obscure experiences of acuity (Kirby et al., 2022). Conversely, hegemonic recovery narratives often frame the chronicity of illness as existing within a temporary/fatal binary, which becomes problematic when illness stretches out beyond its anticipated end point (Bailey, 2019; Cheshire et al., 2021).

Articles in this issue highlight that health interventions often re-organise how illness is experienced over long periods of time and have the capacity to open up or close down possibilities for how patients live their lives more broadly. Treatments that require adherence to strict schedules in clinical settings can structure not only the day-to-day of patients’ lives, but can influence where they live or whether they are able to travel away from home (Cluley et al. 2024). On the other hand, digital technologies such as online support forums or email consultations have the potential to enable a more flexible management of the time of healthcare, though as Grønning et al. (2024) point out, instant and remote communication technologies can also blur the boundaries of the time of care work and reveal new tensions between patients’ and care workers’ experiences of care time. Similarly, Tucker's (2024) article highlights that the promise of digital peer support environments offering ‘24/7 support’ may miss how support services on online platforms still frequently reproduce normative waking hours, with less peer support available during the late night or early morning periods.

These examples suggest that the re-organisation of (health/care) time is limited by particular social imaginaries. The lived experiences of health and illness cannot be easily divided into daytime/night-time or clinical hours/after-hours care. While health services and treatments often present a promise of ‘more’ time, the clocked nature of care simultaneously inhibits lived time by ordering patient and carer bodies, practices, and movements in relation with normative temporalities. The cases presented by Cluley et al. (2024) and Tucker (2024) highlight how clinical hours continue to constitute a temporal point of reference even when care is experienced as an ongoing (and sometimes lifelong) practice. Meanwhile, Grønning et al. (2024) and van Pijkeren et al. (2024) show that efforts to expand approaches to organising care are generally still oriented in relation with the same temporal frames as normative care schedules. In other words, it is not so much that time is freed by alternate approaches to structuring care, but rather redistributed in a way that ultimately upholds hegemonic temporal logics. Articles in this special issue attend to the effects of this redistributed time: how it shapes the social meaning of time and variably unfolds with/in the lives of patients and carers.

This draws our attention to another crucial consideration in horology: whose time are we measuring? Memories of past experiences shape how we come to know, perceive, and engage with social worlds in the present (Ricoeur, 1984). Yet health memories materialise with many reference points and scales: they can be measured as discrete and personal events, or might assemble across imagined communities and be delimited in relation with broader social concerns (Broom et al., 2018; Harrison et al., 2022; Kenny et al., 2019). Articles in this issue highlight that health memories not only influence what care we seek out or trust as patients, but also how patienthood is (re)constructed and attended to through institutions. Divíšek & Numerato (2024) explore the role of memory, experience, and emotion in relation with vaccines and vaccine hesitancy, arguing that personal experiences of vaccination and disease shape individual responses to vaccination, while the body’s ‘memory’ of a virus informs its biological immune response. Meanwhile, Rojas-Navarro et al. (2024) consider how diagnostic events are remembered at an institutional level and can shape the ongoing experiences of the diagnosed individual across various facets of their life.

Health memories, then, are not only located in relation with individual bodies. In this issue, Divíšek & Numerato (2024), drawing on the work of Shildrick (1997), argue that health memories and their temporal effects leak, and in doing so trouble the boundaries of the body and the individual. They note that just as an individual person can remember a personal illness or care experience, and a body can become immunised against a previously encountered disease, these memories can also assemble through the relations between bodies. Looking once again to the context of the COVID-19 pandemic, we can see this leakiness at play across various social spheres. Collective memories of past mass-illness events such as the 1918–1920 influenza pandemic (Vinitzky-Seroussi & Jalfim Maraschin, 2021), shared public narratives about what ‘normal’ scientific progress looks like (Harrison et al., 2022), and the synthesis of community surveillance data over time in adaptive epidemic modelling strategies (Adams et al., 2023), are just some examples of how practices that situate health events in time shape ongoing health interventions and their uptake in communities and societies more broadly.

Health chronologies and the linearity of time

In the above, we show how attending to questions of horology invites us to think critically about the speeds and scales at which we investigate lived experiences and health/care practices. This exploration has thus far assumed a fairly linear and sequential temporal progression, in which time is experienced through the delineated segments of past, present, and future (Adam, 2013; Bergson, 1988; Ricoeur, 1984). This brings us to consider a second temporal concern identified by articles in this special issue: the chronology, or temporal arrangement, of illness, health, and care.

Several of the contributions in this special issue break with assumptions of linear time. Building on work by Seear and Lenton (2021), Rance and colleagues challenge the binary of pre- and post-treatment life that characterises public health framings of hepatitis C treatment and elimination (Rance et al., 2024). Their analysis of the accounts of people who have received treatment for hepatitis C with direct-acting antiviral therapies instead suggests an ‘indivisible flow between the three temporalities’ of past, present, and future, in which histories and potentialities of infection, cure, and reinfection infuse ‘lived time’ (Rance et al., 2024). The futures of hepatitis C treatment are thus not detached and waiting as an inevitable post-cure endpoint, but instead unfold as a ‘perpetual present’ that does not settle or naturalise (Cuevas-Hewitt, 2011; Seear & Lenton, 2021).

The present, then, is not a moment in time that can be passed through; rather, the past and future both make the present. Rance et al.'s (2024) analysis illustrates how an imagined post-cure future can appear as a part of the experience of cure and of the ‘social-material relations intrinsic to cure’s ongoing realisation.’ Other authors in this issue further engage with the present as in-the-making by attending to its phenomenological (Bergson, 1988; Deleuze, 1994) and hauntological (Barad, 2010; Derrida, 1994) dimensions. Tucker (2024) uses Deleuze’s (1994) notion of the ‘living present’ to explore how digital mental health peer support platforms mediate experience of the present as a contraction of the actualised past and a generalised future, which is accentuated by the immediacy of such platforms. Experiences of mental distress and support in the past may be actualised in the present, always available on the digital platform to be recalled – or, indeed, edited – at any time; at the same time, anticipation of future support offers a reassurance that inflects the living present of platform users (Tucker, 2024).

Meanwhile, Rojas-Navarro et al.’s (2024) article contributes to scholarship in the sociology of diagnosis (Jutel & Conrad, 2011; Jutel & Nettleton, 2011) by exploring how the present and future are organised through hauntological relations. Focusing on ADHD diagnosis in children, Rojas-Navarro et al. (2024) argue that diagnosis may enable access to services and support but it also mediates relations with others (e.g., teachers) and shapes the futures imagined to be possible. The diagnosis thus ‘perpetuates a recurring version of the child, haunting their existence with echoes of past and potential selves’ (Rojas-Navarro et al., 2024). When not appropriately cared for, the diagnosis can then have a limiting effect as the horizon of possibility for the child to become different is potentially curtailed by the haunting presence of the diagnosis.

Normative progressions of lived time have also been critiqued by sociologists studying disability and chronic illness, who argue that linear conceptions of time assume particular (limited) experiences of being ‘ill’ or ‘recovering,’ and privilege modes of productivity typically afforded by able-bodied individuals (Green & Lynch, 2022; Kirby et al., 2022; Ljuslinder et al., 2020). Sociological accounts illustrate how prolonged experiences of illness and disability often fail to adhere to these neat timelines and can ‘disrupt’ an individual’s sense of self, requiring the chronically ill or disabled person to rethink their own biography and confront the limits of the resources that are mobilised to support them (Bury, 1982; Charmaz, 1983). The temporality of chronic illness and disability thus becomes liminal and bounded, defying the ‘smooth’ and linear unfolding of time assumed in normative constructions of health and illness (Little et al., 2022; Murphy et al., 1988).

In contrast, the notion of ‘crip time’ emphasises that experiences of disability and illness (including via the forms of care and support for people experiencing them) cannot be contained by a linear health chronology; instead, crip time frequently loops, progresses backwards, and is punctuated by unexpected interruptions and extended periods of waiting (Ljuslinder et al., 2020; Samuels, 2017). The concept of crip time is explored in this issue by Cluley and colleagues, who investigate how haemodialysis is experienced by people living with end-stage kidney disease (Cluley et al. 2024). This treatment requires adherence to a demanding schedule, which involves hours of haemodialysis in a clinical setting, repeated several times a week. This significantly alters the rhythms of patients’ daily lives, and the possibilities open to them, generating what Cluley et al. (2024) describe as a ‘paradoxical’ sense that freedom in the present must be traded for extension of life into the future. Here, the concept of crip time highlights that the alternate temporalities of long-term illness and disability extend far beyond any specific moments of acute illness or treatment, and instead often shape individuals’ lives and futures in more profound and unbounded ways.

Why time matters

Across this issue, time emerges as a valuable heuristic for understanding power relations in health and illness. At stake are questions of whose time is recognised, valued, and resourced in services and systems, and how different temporal orientations configure what it means to be healthy or ill.

As observed by several articles in this issue, new sociotechnical arrangements in the organisation of healthcare reconfigure time for patients and health workers, producing new opportunities but also challenges for healthcare (Grønning et al., 2024; van Pijkeren et al., 2024). For example, digital technologies can offer asynchronous arrangements of care, disrupting the limitations of physical clinic spaces and opening hours, and enabling care to be accessed with greater convenience. However, these affordances produce new expectations and burdens for clinician labour and patient work, or change how the immediacy of health crises are experienced (Tucker, 2024). Social sciences scholarship on technoscientific innovations in health/care have observed that efficiency, cost-saving, and patient (or ‘consumer’) preferences are frequently touted as justifications for these new sociotechnical arrangements in health, impelling (bio)medicalisation and intensified data sourcing with the promise of greater care (Clarke et al., 2003; Hoeyer, 2023; Lupton, 2017). Sociological work centred on time has a key role in revealing whose time is centred in new sociotechnical arrangements, how time is (re)configured to produce normative ideas about what it means to be healthy or ill, and how these intersect with quality or ‘good’ care (Mol, 2008; Nowotny, 1994).

Conceptions of past, present, and future (individually or collectively) also emerge across articles in this issue as a key question of politics and power (Adams et al., 2009; Nowotny, 1994). Contributions by Rojas-Navarro et al. (2024) and Divíšek & Numerato (2024) emphasise the agentic potential of health histories and memory, configuring past health experiences (such as vaccination or diagnosis) as cyclical events that recast and reshape individuals’ present and future lives. These approaches reveal not only how people live with diagnosis or illness, but also how different scales of time are implicated at the level of health policy. Other articles explore ideas of hope and anticipation in health, which materialise through the imagined relations between present practices and imagined futures. Rance et al. (2024) show that the idealisation of curative futures (which forecasts a world without disease) governs how a present is lived and valued. Meanwhile, Cluley et al. (2024) trouble the chronicity of illness by exploring what it means to trade time in the present for an extension of future life. The governance of health futures thus shapes how investments in health and society are made in the present, and how the social, economic, and political aspects shaping health are ‘cared’ for (Green & Lynch, 2022; Kenny, 2015).

Whether time is conceptualised as a static resource or as something livelier and more agentic, different theoretical orientations to time and temporality offer valuable contributions to the sociology of health and illness. The configuration of boundaries between different horologies of health and care (institutional, clock, lived time, or otherwise), and different health and illness chronologies (including multiple and nonlinear enactments of past, present, and future) operate as key sites at which questions of power in health and illness can be examined. This issue invites us to consider how health actors are trained and resourced to care for time, and how the different temporal needs of patients and communities are recognised and afforded attention and resources in health systems and services. The articles in this issue accentuate the vitality of attending to matters of time in health and illness in working towards more equitable health presents and futures.