The paradox of haemodialysis: the lived experience of the clocked treatment of chronic illness

ABSTRACT Studies exploring the relationship between time and chronic illness have generally focused on measurable aspects of time, also known as linear time. Linear time follows a predictable, sequential order of past, present and future; measured using a clock and predicated on normative assumptions. Sociological concepts addressing lifecourse disruption following diagnosis of chronic illness have served to enhance the understanding of lived experience. To understand the nuanced relationship between time and chronic illness, however, requires further exploration. Here, we show how the implicit assumptions of linear time meet in tension with the lived experience of chronic illness. We draw on interviews and photovoice work with people with end-stage kidney disease in receipt of in-centre-daytime haemodialysis to show how the clocked treatment of chronic illness disrupts experiences of time. Drawing on concepts of ‘crip’ and ‘chronic’ time we argue that clocked treatment and the lived experience of chronic illness converge at a paradox whereby clocked treatment allows for the continuation of linear time yet limits freedom. We use the concept of ‘crip time’ to challenge the normative assumptions implicit within linear concepts of time and argue that the understanding of chronic illness and its treatment would benefit from a ‘cripped’ starting point.


Introduction
The arguments made in this paper are located at the intersection between theories of time and the sociological exploration of the lived experience of chronic illness.Semantically and practically the term 'chronic illness' highlights a relationship between time and illness.To define an illness as 'chronic' begins with reference to the illness time frame.Indeed, definitions of chronic illness, sociological and medical alike, are peppered with language pertaining to time, regarding it as: long lasting (WHO, 2022); lasting for a year or longer (NICE, 2015); ongoing and requiring management and treatment over a long period (NHS, 2023); long term and a potentially permanent event in a person's life (Bury, 1991); or involving plateaus and progression (Charmaz, 2000).
The number of people experiencing chronic illness/long-term conditions is increasing globally (Vos et al., 2020).This upward trend is often positioned negatively; evidence shows chronic illness 'increases the likelihood of hospital admission, length of stay and readmission, raises healthcare costs, reduces quality of life, and increases dependency, polypharmacy and mortality' (Kingston et al., 2018, p. 374).Consequently, understanding how chronic illness affects lives is essential to the improvement of healthcare provision and the treatment, care and support offered by health and social care providers.
With this in mind, much clinical research has focused on the burden of treatment, self-management and patient activation (Lightfoot et al., 2022;Magadi et al., 2022).Sociological research, however, reveals tensions between the biomedical discourse underpinning such strategies and the lived experience of chronic illness (Green & Lynch, 2022).Sociologists have explored how chronic illness 'disrupts' patients' personal and social identity in relation with time in various ways (e.g.Blows et al., 2012;Bury, 1982;Cluley et al., 2021a;2023a;Lubi, 2019;Roberti et al., 2021;Trusson et al., 2016); however, there has been far less explicit attention paid to the relationship between time and chronic illness.
In this paper we offer a sociological exploration of time and chronic illness, focusing on the experience of End-stage Kidney Disease (ESKD) and its treatment through the regular receipt of haemodialysis.Rather than taking the relationship between time and chronic illness as common sense, abstract, or even metaphorical, the case of ESKD centres time as a problem that must be actively attended to in the management of chronic illness.Drawing on findings from qualitative work within the NightLife study, we discuss the 'clocked' nature of haemodialysis and how this impacts the temporal aspects of everyday lives.To explicate this relationship further and to move away from the normative assumptions associated with linear time, we draw on the concepts of 'crip' and 'chronic' time.In doing so, we highlight a clock/temporal paradox whereby treatment for chronic illness can give, take away, elongate and shorten the lived experience of time.To provide necessary context, we first provide a description of ESKD and haemodialysis, followed by an overview of the literature addressing time and chronic illness.

End-stage kidney disease and haemodialysis
ESKD is a chronic illness where the kidneys no longer function adequately enough to remove toxins from the blood, resulting in high burden of symptoms and shortened life-expectancy.Kidney function is not recoverable and kidney replacement therapy is often needed to sustain life (Bello et al., 2022).This can include either transplantation or dialysis.Dialysis is a long-term and intensive treatment that requires daily or alternate day provision and takes place either at home or in a healthcare setting.There are two types of dialysis -peritoneal and haemodialysis.This paper focuses on haemodialysis.
Haemodialysis at a specific dialysis facility (hospital based or stand alone at a 'satellite' unit) is the most frequently used kidney replacement therapy around the world (Bello et al., 2022).At the end of 2020, around 24,000 adults were receiving in-centre haemodialysis in the UK (UK Renal Registry 2022) and 109,107 people in the US, representing 83.9% of individuals with ESKD (USRDS 2022).
During haemodialysis, blood is passed through an artificial kidney to remove solutes, excess water, and toxins.Typically, an individual receiving haemodialysis will have around 400-500 mL of blood removed and returned to their body every minute over 3.5-5 h.The standard prescription of in-centre haemodialysis is thrice weekly (Kuhlmann et al., 2019).Adherence is required for the rest of the individual's life or until a successful kidney transplant.However, many individuals are not eligible for kidney transplantation and so will require some form of dialysis for the rest of their lives.

Time and chronic illness
In the West, time is predominantly considered in terms of linear time whereby the progress of time is orientated to the future.One way this is conceptualised is through 'clocked time', which can be defined as linear time measured using a clock (through seconds, minutes, hours, days, months, years etc.) (Jowsey, 2016).Conceptualised in this way, events follow a predictable order, interpreted as past, present and future (Morris, 2008).Clocked time is often considered in studies addressing burden of treatment and self-management; for example, to calculate time spent on health related activities (Islam et al., 2015;Jowsey et al., 2014;Russell et al., 2005;Yen et al., 2013), to explore waiting time for treatment and procedures (Carta et al., 2012;Kelley et al., 2020), and to identify time spent delivering care (Barbarin et al., 2015Jowsey et al., 2013;Tooth et al., 2005;).
'Process time' (Davies, 1994) and 'event time' (Adkins, 2009) have been suggested as alternative conceptualisations of linear time whereby actions and events are ordered in relation to each other.'Process' or 'event' time is therefore as long as needed to complete all associated activities; 'several processes may intertwine simultaneously, and the fabric of life is patterned by the multiple criss-crossing chains of these processes' (Davies, 1994, p. 280).While process/event time is not obviously ordered according to the clock, it is premised on a linear conceptualisation of time where one or multiple things interact as a series of events leading towards something.
Sociological approaches to exploring the relationship between chronic illness and time in a biographical sense tend to focus on the linear ordering of time in terms of past, present and future with respect to anticipated lifecourse.For example, work by Corbin and Strauss (1991) and Bury (1982) focus on changes to identity, relationships and social interactions and the disruption this causes to anticipated life trajectories.Similarly, the sociological concept of liminality (Turner, 1967) refers to changed social expectations regarding major lifecourse events and the state of being inbetween that this can create.Trusson et al. (2016) for example, found that breast cancer survivors experienced liminality following recovery; while no longer being 'ill', fear of recurrence prevented return to 'normal'.Lubi (2019) highlights the tension between life lived prior to chronic illness and life lived with chronic illness.Drawing on social practice theory, Lubi (2019) shows how people experiencing Parkinson's disease strive for continuity throughout their illness trajectory.While this work significantly furthers the sociological understanding of the lived experience of chronic illness, the normative ordering of time that the experience of chronic illness so frequently conflicts with is rarely challenged.Both crip and chronic time question the linear ordering of time and provide a basis for critique.

Chronic time
Chronic time draws on the phenomenological conceptualisation of time to highlight the tensions experienced at the intersection of chronic illness and its clocked treatment.
Phenomenology offers a theoretical perspective from which time can be considered beyond normative, linear boundaries.Phenomenology focuses on how the world is perceived through the lived body.Positioned phenomenologically, individual bodies are located spatially and temporally (Merleau-Ponty & Smith, 1962).It is this relationship between bodies, space and time that shapes how we come to know the world (Cluley et al. 2021a).The phenomenological conceptualisation of time, moreover, is that of lived time, or temporality.
Drawing on the phenomenological theory of both Heidegger and Merleau-Ponty, Morris (2008) uses the example of diabetes to highlight disruption to the capacity for improvisation afforded to the 'healthy' due to associated illness related activities such as the need for regular medication.Morris (2008) frames this disruption as 'chronic time' and contrasts this with what he refers to as 'provisional time'.For those of us who do not experience chronic illness or impairment, provisional (or clocked) time can be flexible, meaning we can (generally) make improvised decisions -ranging from small scale, everyday actions to life changing decisions.From a phenomenological perspective, this relative freedom is an example of temporality or lived time (Morris, 2008).Morris highlights how chronic illness reduces the privilege and freedom implicit within lived time.In his example of diabetes and the self-management this requires, Morris (2008, p. 414) outlines: One becomes hostage to the time of sugar dissolving, of insulin releasing […] the diabetic's living of an improvisational temporality is upset by the need to explicitly clock provisional time.
In chronic time, acknowledgement of and responsibility for provisional or 'clocked' time in order to manage illness becomes essential.In this way, chronic illness/time repositions the body as something that requires clocked management and removes or limits the capacity for spontaneity.

Crip time
Crip time provides another alternative to linear time.In disability studies the concept of crip time is used to highlight how impairment challenges lifecourse expectations premised on heterosexual, able, and re/productive bodies.As Ljuslinder et al. (2020, p. 37) outline, a linear conceptualisation of time 'suggests one should transition from child to adult, find a partner, get married, reproduce, work, eventually transition from adulthood to old age, retire and die'.Crip time, by contrast, flows differently.Samuels (2017) refers to crip time as broken time and as time travel, in that crip time displaces normative time and replaces it with a new form of time that breaks from the linear and is played out in an unpredictable pattern dictated by social barriers and bodily capacity.As such, crip time highlights the ableist foundations of linear time whereby the very conceptualisation of time is first predicated on an able and rational body.As Samuels's (2017) states, 'disability and illness have the power to extract us from linear, progressive time with its normative life stages and cast us into a wormhole of backward and forward acceleration, jerky stops and starts, tedious intervals and abrupt endings'.Crip time also involves what Kafer (2013, p. 27) refers to as 'flex time', where linear time meets in tension with the lived reality of disability.
Crip time differs from other reordering's of time such as 'process time' by reimagining the flow of time to account for a diversity of bodies and individual capacities in order to acknowledge associated differing expectations in relation to productivity.Where process time continues to reflect the linear organisation of time from the beginning of a process to the end, crip time 'bends the clock to meet disabled bodies and minds' (Kafer, 2013, p. 27).The challenges posed by impairment and disability to the normative and linear ordering of the lifecourse, are similar to the challenges posed by chronic illness.
Our paper draws on the phenomenological conceptualisation of 'chronic time', and the concept of 'crip time' in relation to the lived experience of haemodialysis.In applying the concept of chronic time to the case of people experiencing ESKD, we explore the wider disruptive impact of clocked treatment on lived experience.Crip time further enables us to investigate the challenges our participants faced when trying to bend their bodies to their clocked treatment, and consider how we might attend to the broader temporal effects of ESKD treatment.

Methodology
This paper draws upon data from an integrated process evaluation of the NightLife study (an ongoing clinical trial to evaluate the efficacy of nocturnal haemodialysis); specifically interviews and photovoice work with 35 patients in receipt of in-centre, daytime haemodialysis (ICHD).
Eligibility criteria included adults receiving ICHD with capacity to provide written informed consent.Participants were recruited from UK hospitals participating in the NightLife study.VC liaised with dialysis unit staff to arrange times to attend; she approached patients during dialysis and explained the study verbally, as well as providing a participant information sheet.Written consent was provided by all.Four participants withdrew from the study due to ill health.Interviews and photovoice discussions ranged from 25 to 180 min (Tables 1 and 2).
The study received favourable ethical approval from West Midlands -Edgbaston Research Ethics Committee (REC reference: 20/WM/0275).

Methods
We offered the combination of photovoice and semi-structured interviews to improve authenticity and inclusivity, while adapting to COVID-19-related restrictions.
Photovoice is a flexible visual research method, initially developed as a participatory action research method (Wang and Burris, 1997), which typically involves participants taking photographs of a negotiated subject, sharing the photographs with the researcher and using them to guide a conversation (Cluley, 2017).Importantly, the images are not supplements to a semi-structured interview, rather they are a means to elicitation and deeper understanding (Cluley et al., 2021b).
Here, photovoice and semi-structured interviews were used to facilitate participants to show and tell their experience of haemodialysis both within and beyond the renal unit.Interviews and photovoice conversations took place at the participants' bedsides while they were receiving haemodialysis.This is a common approach in haemodialysis research, given that so much of a participant's time is taken receiving dialysis (Kaushal et al., 2022).All participants were asked about their health and their experiences of dialysis (including challenges and things that helped).
Photovoice participants were given an open brief to take photographs to show their experience of ICHD and how this impacted on their lives, over the course of a week.Participants used their own smartphones and an instant messaging service to share photographs with VC.Follow-up interviews were conducted the following week to discuss the photographs shared.An adapted version of the SHOWeD question framework (Wang & Burris, 1997) was used to facilitate talk; in addition, VC asked: 'how do you feel about this?' and 'was there anything else you would have liked to photograph?'

Analysis
Transcripts were analysed following Braun and Clarke's (2021) approach to reflexive thematic analysis involving a flexible six step approach: familiarisation with the data, coding, theme identification (from examining the codes and looking for patterns); theme review; theme refining; and writing up.NVivo 12 (qualitative analysis software) was used to support this iterative and reflexive process.At the stage of theme refinement, we drew upon literature addressing the sociology of chronic illness to further our interrogation of the data.Four overarching themes included: biographical disruption, relationality, temporality, and continuity and endurance.This paper draws on examples from the latter two, using the concepts of 'chronic' and 'crip' time to make sense of them.We have published elsewhere in relation to other themes (Cluley et al., 2023a(Cluley et al., , 2023b)).

Findings
We organise our findings into three sub-sections related to the themes of 'temporality' and 'continuity and endurance'.First, we explore how participants experienced the clocked nature of their treatment schedules and how this impinged on, affected and changed other aspects of their everyday lives and their lived experience of time.
Second, we highlight how the continuous need for haemodialysis, and the time this treatment gives back yet simultaneously takes away, removes freedom associated with lived time.Finally, we consider how the loss of freedom reveals a clock/temporal paradox.

The clocked nature of dialysis
As outlined, haemodialysis is a time intensive treatment option that requires adherence to an ongoing, time consuming clocked schedule.Regular non-adherence would literally end time for people with ESKD.The participants talked extensively about the 'clocked' aspect of haemodialysis; including the amount of time spent receiving dialysis, how they organise and plan their lives to accommodate this, and importantly, how this impacts on their lived experience.When talking about dialysis, participants typically mentioned the number of hours or days, demonstrating the salience of clocked time.The experience and awareness of linear time and its intersection/conflict with illness and treatment experiences was a central feature of many photographs; for example, images of daily routines adapted to accommodate the dialysis schedule and its physical impact and images of clocks used to structure routines.Much talk when explaining these photos focused on linear time.Silas (Male, age 66) showed a photograph he had put together to show how he orders his day (Image 1).
Silas had a morning dialysis slot at his renal unit, which involved very early wake up times on dialysis days to allow time for the taxi to arrive to take him to the renal unit.Silas shared that he arranged the objects for this image to show how he tried to manage everyday tasks around his 'clocked' dialysis schedule and the personal impact this had.When talking about this image, Silas said: What I do is shave at night, so that when I get up in the morning I don't have to.I mean 5.30 in the morning is no fun.And because … The big issue is not having an exact time the taxi turns up.So, if I get up and go right, OK, shave, shower.And somebody turns up, I'm stuffed.So, I've got to sort of make it very quick.
Participants talked in depth about the rhythmic pattern and the similarity of their days due to the need to follow a routine that allows for their 'clocked' dialysis schedule.Gita (male, age 67) who followed a Monday-Wednesday-Friday dialysis schedule said: Normally, like Monday morning, come here, by the time I get home it's about one o'clock.Have a cup of coffee or something like that, and just rest.For the whole day.Tuesday morning, probably do some pottering around.At the moment, the weather is bad, you can't go out, don't bother.But I potter around in the garden, and that's it.And then Wednesday's the same, the whole day, about one o'clock you get home, same old usual thing, and on Friday the same.
Sunil (male, age 30) described the pattern of his week as similarly repetitive, scheduled to accommodate his dialysis.
After dialysis I go to sleep, wake up, and then three o'clock I'll go pick the kids up from school, come home, give them a shower quickly, then I start, feed them, and then just play with them, and that's my day over.And then next day same thing, same routine.That's what I do, literally, Monday to Friday.Yeah, and then after dialysis, same routine.
When asked at the end of the interview if there was anything else he would have liked to have photographed, Sunil said: I don't know, because my life is still the same.Whatever I've sent it's probably the same, most likely the same.That's the life I'm living right now.
Following a clocked pattern of treatment heightened the participants' consciousness of time and resulted in them leading clocked, repetitive lives dictated by their dialysis schedule.

Dialysis as chronic time
Participants talked extensively about how the 'clocked' nature of haemodialysis affected their wider existence.The clocked receipt of dialysis had varying impacts experienced both in the dialysis unit and outside of it, all of which resonate with Moris's concept of 'chronic time'.
In the renal unit, the clocked length of time taken up by dialysis was often experienced as longer than the scheduled session.Time spent waiting and dialysing was, in the main, found to pass slowly.Sonny (Male, age 80) said: They are dragging days.You look at the clock, three o'clock, and then I don't get back home until half past ten at night.Participants found that the slowness of time spent on dialysis impacted on their experience of things they usually enjoy.When talking about watching television while dialysing, Marisol (female, age 52) said: It's different if you're watching TV at home, and you've finished the day and you've done something.Just sit back and relax, you're like 'ah'.But when you're sitting here watching it, even though it's something I enjoy, I don't get … I don't enjoy it as much.
Similarly, Amanee (female, age 58) who had been receiving haemodialysis for nearly 30 years talked about losing motivation to read.I used to like reading.I can't do that anymore; it's got boring being here.
Beyond this loss of enjoyment and capacity for choice experienced in the dialysis unit, the participants talked extensively about the impact of the clocked dialysis schedule and the consequent slowing down of their lived experience.Most participants experienced extreme tiredness following dialysis that consequently slowed their overall pace of life.When talking about this, Primrose (female, age 57) said: I was expecting to go back to how I was before.Now you don't have the energy.You need energy.And if you want to do anything you have to plan how much energy it's gonna take for you to do what you need to do.You can't just say oh, I'm gonna go shopping.You can't do that.After dialysis, I get home, and I just lie on the settee.
Many participants had left paid employment either thorough reluctant choice or through lack of support.Others had reduced their hours or had taken jobs that allowed more flexibility.These decisions were not taken lightly and always had a wider impact on the participant, including financial constraint, depression and an altered sense of self as we have written about elsewhere (Cluley et al., 2023a).
For example, Bianca (female, age 30) gave up working as a healthcare assistant to accommodate the time needed for her dialysis, the tiredness she felt afterwards and no longer having the energy or time to work demanding shifts.She found this incredibly frustrating.Bianca also expressed this loss and frustration through the images she shared which included photographs of her living room and television where she now spends most of her 'free' time.Bianca shared another photograph of a big wheel she had ridden recently and talked about how this experience had both happy and sad elements in a sense of happy she is alive, but sad for the future, where the freedom to explore the world was now vastly restricted (Image 2).
Dialysis schedules and associated tiredness during recovery time also impacted on participants' social lives.Many participants had given up much loved hobbies and sports.Capacity for travel was also affected.Many participants had not taken a holiday since starting dialysis due to the anxiety of breaking their schedule and the planning needed to organise safe and effective dialysis elsewhere.Aadhan (Male, age 76) said: If you want to go on holiday, you've got to think twice, you've got to think about needing dialysis, otherwise you can't do it.If you get an infection or things like that.You don't know how it's going to be, how clean.So, I haven't been on holiday since this.
Others were fearful that taking a holiday would risk losing their regular dialysis slot, and hence further disrupt their established routine: I've always wanted to go to New York but that's not an option now.I have found somewhere in Norfolk, ten minutes away from where they do dialysis.But something that worries me is that I am here now, and this is my slot and I don't want to lose it.(Alan, male, age 70) The disruption the 'clocked' schedule of haemodialysis caused was talked about with much sadness and frustration.Participants were keen yet unable to find a route back Image 2. Bianca's photograph of a big wheel.
to the freedom and 'normality' of the lives they once lived.In trying to do this, participants experienced a clash between their lived experience of time and their clocked dialysis schedules.We position this tension in terms of a dual paradox.

A dual paradox
Our analysis of participants' images and accounts reveals a dual paradox involving clocked time and temporality (lived time), and life and death.While discussing the frustration of the dialysis schedule and its constraints and disruptions, participants expressed much gratitude for the life that haemodialysis provides; as summarised in Amy's statement: I kind of feel trapped, because I have to do it, else I'll obviously die.(age 34 34) Marisol's (female, age 46) photographs capture the contradiction between the literal provision of time/life and the loss of freedom that many participants experienced as a result of their ESKD and need for haemodialysis (Image 3).
Showing a prison, a barred gate and chains, Marisol took these photographs to illustrate how imprisoned she feels by her dialysis.She described her dialysis as a 'ramp' to everything in her life from everyday activities to high level achievements.Discussing photograph 4 Marisol explained that the purpose of the images was to focus on the words 'access' and 'ramp' (Image 4) So 'ramp' is just how difficult everything is … .every aspect of my life is, is difficult … .So, whether it's the eating.Or whether it's, you know, going to something, I have to always worry about my dialysis, I can't do this because I've got dialysis day … .being a dialysis patient, is not, is not a normal life.That's the ramp, you know.Obviously as a dialysis patient, dialysis is what keeps me alive.So that is the access.To my life.I wouldn't have, I wouldn't have any, anything.If I didn't have dialysis.
While receiving regular haemodialysis provided time for participants to 'be' in the world, it also simultaneously removed the implicit freedom of clock time they had previously experienced.Participants were grateful for the time haemodialysis gave them, but were frustrated with the lives they had to live in order to accommodate the treatment that offered this.

Discussion -'dialysis time'
To reflect on the paradox of haemodialysis as both giving and restricting time, we introduce the term 'dialysis time'.While dialysis schedules are fixed and are organised according to linear time, dialysis time took many guises, fundamentally changing the lived experience of time.In dialysis time, the 'clocked' delivery and receipt of treatment, while necessary for the improvement of physical health, had a wider temporal impact on daily lives, representing a paradox between the clocked dialysis schedule and the temporal nature of everyday life.For the participants in this study, life before dialysis had typically followed a linear pattern with normative assumptions playing a significant part.Participants had anticipated that their lives would follow a standard trajectory ordered in accordance with the sequential nature of linear time.Their need for dialysis and the clocked nature of this treatment had disrupted the linear ordering of their lives that previously provided grounding and orientation.The participants did a considerable amount of work to maintain some of the continuity they had previously experienced.Here, we argue that this change is experienced as chronic time, whereby the freedom and spontaneity implicit within lived time is disrupted.
Perhaps most readily expected and easily dealt with, the participants experienced dialysis time as a slowing down of time.Dialysis time was said to drag and to pass slowly.This experience has been discussed by others addressing waiting times (Carta et al., 2012) and time spent caring for chronically ill children (Davidson, 2020).The slowing down of time was also experienced outside of the dialysis unit, particularly on Image 4. Marisol's photographs to show dialysis as both a ramp to and access to life.
dialysis days when participants began the day waiting for dialysis to begin and returned home feeling tired and often unwell.Participants talked about spending the remainder of the day resting and recovering from dialysis, unable to do the tasks they could before their ESKD As illustrated by the extracts, dialysis days could both drag and be dominated entirely by the dialysis process.
The slowing down of time is discussed by disability scholars to demonstrate the lived experience of crip time (Samuels, 2017).The lengthening of time and the reduced speed at which participants could now complete tasks and live their everyday lives conflicts with the normative expectations embedded within clock time and life-course perspectives.
Relatedly, participants experienced a loss of freedom and spontaneity.This loss was experienced both within and outside of the renal unit.While four hours to oneself, three times a week might seem appealing to someone unfamiliar with dialysis, dialysis time altered the participants' experience of time.As seen in the examples and in the discussion of the slowing down of time, the four hours spent dialysing did not just drag, it also changed the experience of things that participants had previously enjoyed, such as watching television and reading.Associated with dialysis, these activities became boring and lost their appeal.
The clocked, linear nature of the dialysis schedule elevated participants' awareness of the provisionality of linear time.In good health, time is rarely considered (Morris, 2008).The effects of chronic illness and its treatment, however, bring time and its associated freedoms to the fore.The clocked provision of dialysis and participants' talk about this, revealed the heightened awareness of clock time and the body's relationship to this.As demonstrated, participants organised their lives around their dialysis schedule and its side effects.The examples of participants giving up work and much loved hobbies to accommodate their treatment are just a few examples of how lives were reorganised.
Due to the intertwinement of clock time and modernity, there is little room to live comfortably outside of clock time and associated normative biographical trajectories.As Ellingsen et al. (2013) outline, 'If you fail to comply with or adapt to this external temporal pattern, you will be left standing outside'.In the interviews and photovoice work, our participants highlighted their future orientated 'being' in the world that their past, present and future selves intertwined to create this.Because of their experience of linear time prior to illness (past), they were experiencing boredom, frustration and limitation (present) and so orientated themselves futurally -planning and hoping to experience the future differently in order to avoid the feeling of 'standing outside' (Ellingsen et al., 2013).The frustration seen in the participants' talk and their desire to return to 'normality' (Cluley et al., 2023b) is illustrative of the ableist nature of clock time and the pressure this exerts.
The important issue to highlight here is that in requiring dialysis, organised according to linear time that is premised on ableist assumptions, our participants experienced both heightened awareness of and responsibility for the timing of their bodies, and an ongoing frustration directed towards a desire to gain back the security the linearity their previous lives provided.As Morris (2008, p. 414) outlines, using the example of diabetes, 'linear sequencing can no longer be an invisible background, she or he needs to become the brains of the body's digestive process, or else very literally dissolve.In needing to become the provisional timer of the body, the diabetic precisely encounters a provisional time with an intensity of its own'.This same experience is illustrated here in the participants' talk about their ESKD and need for haemodialysis.Participants were no longer free to allow the provisionality of time to fade into the background.Strict, yet necessary, dialysis schedules removed this freedom; participants discussed feeling imprisoned by their need for dialysis.Their experiences of illness and healthcare prior to ESKD, as well as their experience of the now, where treatment and illness management is clocked, combined to create their experience of the future as limited, frustrating and conflicting with the normative assumptions of linear time.
With the slipping away of control over one's own lived time comes the obvious observation that normative time is predicated on ableist assumptions that are embedded in normative conceptualisations of the lifecourse.Chronic time, proposed by Morris (2008), captures this, but does not explicitly question or challenge the construction of normative time.Crip time, however, is predicated on this challenge; 'rather than bend the bodies and minds to meet the clock, crip time bends the clock to meet disabled bodies and minds' (Kafer, 2013, p. 27).Here we use crip time to highlight the normative and ableist premise of many approaches to the consideration of chronic illness.Embedded within crip time, moreover, is a rejection of the ableist norms that linear/ clock time is predicated on and a celebration of bodies that break from this norm.Crip time recognises that bodies with impairments do not fit within normative assumptions of expected lifecourse.Rather than viewing the experience of disability or chronic illness through the lens of normative time, crip time acknowledges and allows for difference in pace and rhythm.

Conclusion
It is important to recognise (both for haemodialysis patients and also the treatment of other chronic illnesses requiring 'clocked' delivery) that the linear organisation of treatment has a wider effect on lived experience.Treatment for ESKD is not just a case of attending dialysis, taking scheduled medication, filtering the blood and feeling grateful.It profoundly changes patients' relationship with time.The freedom of lived time is removed through the heightened awareness of provisional time and the need to manage the body according to linear time.Chronic illness and linear time meet at a paradox whereby clocked treatment extends the linear time of life/existence but removes the privilege of time-associated freedom.This paradox is experienced as frustration that in turn is born out of the normative and ableist basis of linear time.Our participants' lived experiences highlight the essential need to understand the impact of clocked treatment beyond a linear conceptualisation of time.
As outlined, daytime in-centre haemodialysis is the most commonly utilised dialysis modality.Our findings demonstrate that for chronic illnesses that require clocked treatment, it is essential to patient wellbeing that alternative treatment schedules are pursued.A perfect system would allow dialysis to be delivered in such a way as to entirely accommodate individual circumstances but in reality, this has to be balanced with the need to provide treatment at scale within the constraints of local health care systems.Nevertheless, there are opportunities to deliver individualised dialysis in more innovative ways without necessarily requiring more resources; home therapies and overnight schedules are both examples that may have different impacts on temporality.
In thinking with crip time in the case of ESKD, we emphasise that normative biographical assumptions are not true for all bodies.We call for practitioners to recognise and respond to this when tailoring treatment options and supporting people who live with chronic illness.At present, the delivery of haemodialysis is premised on a normative assumption of medicalised health, wherein chronically ill and disabled people are expected to mould their lives around a normative enactment of clinical time.While our findings focus on the specific chronic illness of ESKD and its treatment using haemodialysis, the observations presented are intended to be transferable to the experience of other chronic illnesses requiring clocked treatment.It is through the application of these concepts to our empirical data that we contribute to the progression of the sociological literature addressing chronic illness and time.

Disclosure statement
No potential conflict of interest was reported by the author(s).

I
want to go to work, not stay at home … I am tired all the time.And when I'm going to shopping, I'm so tired.I feel like 100 years!I don't like it, because I'm young and I have all the life.

Table 1 .
Demographic detail for interview participants.
Four hours, four hours, oh my god, it's a lot.It's hard to be stuck on a machine, because you're completely stuck here, you can't move.Even if you're tired, you have to complete your session.(Mitesh, male age 30) I couldn't sleep last night, woke up at quarter to one, couldn't get back, and I was thinking [of] 365 days a year, 121 I shall be coming here … It's a bit depressing when you think you've always got to come.(Margaret, female age 78)