Patient patients: middle-aged British Pakistani women and the intuition of limits to care

Abstract

This paper examines the affective inequalities underpinning the extensive responsibilities of care that are shouldered by chronically ill ­middle-aged British Pakistani women. In the context of ethnic health inequalities, chronic illness and premature ageing are ubiquitous. Further, mid-life generates gendered pinchpoints in the dynamics of care. The paper draws on extended conversations with women over seven/eight years and tracks their unsettled perspectives on sabar (patient endurance). Middle-aged women described how, over the long haul of living alongside chronic illness, they intuited that they must place some limits on caring for others, and that care required self-care – not in a biomedical sense, but in the sense of attention to their own bodily and relational needs. The paper extends anthropological critiques of Levinas’s philosophy of infinite responsibilities to care, tracking how changes at several temporal scales – the life course, intergenerational re-negotiations – affect care. While social transformations of gender, and the proliferation of neoliberal discourses on self-care do affect the traction of normative notions of selfless care for others, the paper locates women’s changing perspectives on sabar primarily in the provocations of everyday life.

Keywords:

• Mid-life
• chronic illness
• care
• self-care
• kinship
• British Pakistani

Introduction

Returning to East London in 2013, I contacted the middle-aged women I had spent time with during my earlier fieldwork during 2005–7, and caught up with them about how their situations had evolved. At a khatam at one of the women’s homes, a religious gathering of some 12-15 middle-aged women – mostly former marriage migrants from Pakistan, but also some UK-born/raised counterparts of the same age – I met a charismatic woman called Farhat who had earlier taken it upon herself to instruct me about the ‘secret stuff of us ladies’ (Qureshi 2013, 128) that she and her friends deployed to endure ill health and difficult marriages or family lives: sabar (patience), yaqeen (belief) and takleef (hardship). Enduring hardship with constancy of belief was a sign of strength, and in turn, gave them strength. Farhat’s husband now had a heart condition, visual impairment, and depression, but she said she personally did not ‘believe in’ depression. Rather, she said she trusted to God and tried to stay strong, so as not to end up depressed herself too; and so as to be there for her family.

I leave it to Allah Ta’ala. I think, ‘my job is to look after my family. If I do my job then Allah will definitely give me his rehmat (mercy)’. I think, ‘I’ll do my job, now you do yours’. I think to myself, if I don’t stay strong and wise, I’ll end up ill and depressed as well. I think of my children, I’m always there for them.

This claim about how caring for others requires caring for oneself sheds new light upon sabar, the ethic of patience and endurance which Farhat and others had impressed upon me before. Doing sabar, they told me, meant not complaining about one’s suffering, not talking about it to other people, not letting others realize what you were going through, being strong and carrying on. Sabar was given by God, but it was also something that brought you closer to God. Alongside this religious exegesis, my ethnography among these women suggested that sabar was also directed towards significant others in their immediate local worlds. To be recognised as a saabira or sabarwali (a woman who exercises patience) was affirming: ‘it means that your suffering is appreciated if you’re called sabarwali’ (Qureshi 2013, 129).

The performance of sabar is normative; it is the way that one should behave, as a woman. Even amid the criticism middle-aged women sometimes voiced towards sabar, amid the resentments of neglect – often shored up by the contrast with their daughters’ more assertive, resistive model – I identified a work of performative reinforcement of these norms (Qureshi 2013, 133). However, reflecting further on this material, I have realised that understanding sabar as a kind of performative idiom risks stabilising it to an unwarranted extent. Following Farhat’s circle over a period of seven/eight years led me to appreciate the extent to which women work sabar out differently than in the normative regime. In this paper, I show how sabar is dynamic, and how its traction can shift over the course of time, as women advance in their life courses and domestic cycles – although not unidirectionally. As women navigate the space between being valued and neglected, acknowledge the impacts of their self-­effacement as well as the changes that occur in their daughters as they grow up and shoulder the burdens of kinship, the call to sabar acquires more layers even if it does not entirely diminish. Sabar can expand to encompass care for the self as well as care for others, which may not be antithetical but amplify one another. As Cooper (2018, 1) observes, ‘patience is not tantamount to waiting; it departs from waiting precisely at the crossroads of doubt and certainty. Waits require objects: you wait for something. But patience… indexes the unknowability of the horizon’. These women are patients of chronic illness, but my focus is not upon the unknown horizon of self-care in the medicalised management of their health, but rather forms of self-care that encompass everyday life and domestic relations. They describe patience and endurance as the prevailing ethic through which they face the horizon of gendered and life course frustrations that form the context to their chronic living.

The paper contributes to discussions of patience and endurance in the anthropology of health and illness. Much of these discussions have focussed on striving as a hopeful, if faltering activity. Mattingly’s (2010, 2014) descriptions of African-American families’ striving for ‘the good’, in the face of devastating childhood illness and disability, depict people rallying to think positively and ‘see beyond their pain’ (Mattingly 2010, 129) as well as often failing to do so. The ‘experimentality’ of what Mattingly (2014, 126) calls the ‘moral laboratory’ is a practical space where medical routines are taken home from the clinic and people facing life-and-death matters work with and against the odds. Similarly, Banerjee (2020, 4–5) explores how families in North India endure cancer diagnoses through ‘experiments in relations’, through inventing strategies to work – continuously, and with strenuous effort – to maintain the brittle social ties around a patient. Most recently, Gammeltoft (2021) has also analysed endurance as striving, in relation to what she calls ‘spectral kinship’. For her Vietnamese interlocutors, endurance is meaningful and worthwhile because it sustains latent, invisible efforts to achieve imagined forms of relatedness, for instance living up to what a now-absent mother would tell you to do about your marriage. However, rather than reiterate the focus on striving, and understandings of endurance, in this paper I focus on a point at which striving is said to lessen.

To conceptualise women’s changing reflections on sabar, I take up some debates over Levinas (1981) philosophy of infinite responsibilities to care. For Levinas (1981), there is an infinite responsibility for the Other which makes ethics prior to subjectivity. Danely (2017, 416) has explored in Levinas’s writings a way of thinking about carers’ fatigue as ‘an embodied subjectivity of enduring that prefigures responsiveness’, and sketched out a continuous folding in of fatigue and care, the woundedness of fatigue allowing for a rejuvenation of carer subjectivity. This is a lyrical, elegiac vision, but others have proposed that in everyday life, the asymmetrical relations between self and Other, carer and cared-for may feel rather more chafing. For Veena Das (2015, 155), the problem of responsibility for the Other originates ‘not in the intuition of the infinite’ but ‘rather the recognition that my responsibility to the other can only be a finite one’. Similarly, Clara Han (2012) draws out the agonies of intimacy where realities of poverty do not allow people to fully sustain and uphold their obligations to their kin. In conversations with my interlocutors over time, women told me they had recognised that to care for others, they had to care for themselves; and that this recognition comes with time. I thus explore how ‘time works’, not only suffering and relationships (see Das 2007, 85–87), but also on women’s commitments to exercising sabar.

Thinking about how sabar may change over time, I engage with anthropological discussions apprehending temporality as a central component of the experience of care. This work has usefully probed how care forms and commitments may shift over time. In this vein, Coe (2016) examines how the need to provide for one’s elderly parents at middle age can reawaken migrant women’s sense of family responsibilities and relationships and provoke a shift in orientation back to Ghana. Over an inter-generational timescale, too, understandings of care may shift, as witnessed in Mody’s (2020) pertinent study of British South Asian ‘forced marriages’, which shows how acts of intended parental care – the choosing of an appropriate marriage for one’s child – can be reframed by the child as acts of force, and also, how such evaluations may be further reconsidered as that marriage develops, with the evaluation of care as normative, good, or bad not settled but emerging over time. Commenting on Mody’s work, Rapp (2020) writes of ‘care spans’ moving at different paces, practices of care containing within them ‘multiple chronologies’ that may not stably cohere. These observations contribute to an effort to ‘unsettle’ the anthropology of care by ‘disturbing and setting into motion sedimented arrangements of valuation and devaluation’ (Murphy 2015, 722). Developing Murphy’s argument, Cook and Trundle (2020, 180) observe how the anthropology of care must take into account how ‘care relationships transform over time in ways that are often unpredictable, complicated, or conflicted’. This paper speaks to this body of work, by teasing out how changes at several temporal scales – the personal life course, social and generational change – affect the traction of sabar.

A final area of engagement is with the ‘affective inequalities of intimate relationships’, the grids of gender and sexuality within which constitute the ‘complex and messy power dynamics through which people experience their relationships’ (Juvonen and Kolehmainen 2018, 1). In Juvonen and Kohelmainen’s volume, Malinen (2018) writes of the affective dynamics of care within heterosexual marriage in rural mid-twentieth century Finland. Women were bound to extend ‘boundless care’, requiring asymmetries between themselves and their husbands not only in reproductive and farm labour, but also in emotional labour. Furthermore however, as is widely remarked upon in work on care, care arrangements rely not only on gender socialization, but also on structures of race and class. Critical work on biomedical ‘care transitions’ (Taylor and Bury 2007) has identified the neoliberal logics of self-management and expert patient programmes, which individualise responsibility for the management of ill health by mobilising psychological concepts such as self-efficacy, serving goals of cost-cutting under the guise of empowerment and detracting from the structural determinants and contexts of chronic illness. In the clamour for self-care, it becomes increasingly difficult to discern between feminist ethics of self-care, where care of the self is valorized to sustain the costs of caregiving, and its cooption by the ‘neoliberal trap’ (Michaeli 2017). Indeed, crip-of-colour critiques rejoin with analyses of how the conscription of Black and Brown women to care limits the transformative potential of feminist self-care. Thus Piepzna-Samarasinha (2018, 35) asks ‘what stops us from being able to ask for care’ in the context of communities who have ‘always been the ones forced to care for others’. Joining with this work, this paper probes the ‘links between broad social transformation and intimate daily life’ (Buch 2015, 287), tracking how social transformations of gender, and the proliferation of discourses on self-care alter the traction of calls to sabar.

I first undertook fieldwork on chronic illness among people of Pakistani origin in East London in 2005-7 (Qureshi 2019). I became perturbed by the ‘common thread of troubled marriage’ among the chronically ill women and men with whom I worked (see also Pinto 2014, 8). In 2012-14 therefore, I returned to East London to undertake follow-up research on marital instability and divorce. I spoke again with 21 of the chronically ill persons I had spoken to during my doctoral fieldwork, and incorporated another 13 new informants to the study of chronic illness. Methodologically, this has allowed me to trace the temporal sensibilities of sabar. Rather than freezing women’s reflections on sabar at just one point in time, or providing stills of women’s travails, my examination of sabar as a changing response to suffering derives from interviews and observations across these two periods of fieldwork.

In what follows, I briefly sketch out some background to the changing bodies and families of my interlocutors, and suggest how discourse on sabar was a way of acting within the ‘affective inequalities’ (Juvonen and Kolehmainen 2018) that make up care within families in a context of marked social inequality. I then turn to extended conversations with two women, Nasreen and Shaheen, whom I spoke to in 2005–7 and then again in 2013, to track how their perspectives on facing chronic illness and care with sabar had changed over time.

Changing bodies, changing families, and inequalities of care

Among the British Pakistani people with whom I worked in East London, chronic illness, ageing and social inequality are tighly interlinked. My interlocutors were mareez (patients) of many different chronic illnesses. Diabetes, depression or anxiety, chronic musculoskeletal pain, hypertension and heart disease were the most common; multi-morbidity was the norm. For people of Pakistani heritage in the UK, there is a piqued compounding of chronic ill health with age. Rates of long-term ill-health among British Pakistanis outstrip those in other ethnic groups once people reach their mid-30s, and increasingly depart thereafter, associated with socio-economic disadvantage interacting with historic and ongoing forms of racism (Nazroo 2015). These health inequalities entail certain socialities around the ubiquity of chronic illness and the prematurity of ageing. Women described to me how ‘life ends at 40′ (Qureshi 2019, 21) and being told by their medical practitioners that ‘if you’re over the age of 40, you just have to accept being ill’ (Qureshi 2013, 123). The inequalities did not go unremarked: people observed how people in their community acted, or even became barhe (elders) at a younger age than the white people around them (Qureshi 2020, 356).

Equally, the ubiquity of chronic illness and prematurity of ageing are enfolded within domestic cycles, where gendered pinchpoints in the dynamics of care become apparent. British Pakistani households are more likely than others to contain multiple chronically ill adults (Harriss 2008, 63), and British Pakistani households containing chronically ill adults are more likely than others to also contain dependent children and elderly people (Harriss 2008, 64). The middle-aged women I spoke to were very often shouldering labours of care for generations above and below, as well as for others of their own generation. In contrast with readings of Pakistani families in the model of ‘classic patriarchy’ (Kandiyoti 1988), middle-aged women described how life in the UK had chipped away at the certainties of being able to recruit care from a daughter-in-law. Suraiya, in her late 50s, reflected that

I have got my son married but they live in Romford. My daughter-in-law is a solicitor, my son’s a pharmacist. They are busy people. They don’t have the time to come and see us, only sometimes at the weekend they come. In this country, they have this misconception that we have lots of support from our families. Probably it’s like that ‘back home’ [in Pakistan], the ­daughter-in-laws do everything there, but not over here… Hardly anyone lives with in-laws, they just help out a bit. The mother-in-law has to cook for the bahu (daughter-in-law) even. That’s how it is with Pakistani people. If the daughter-in-law goes to work, so the mother-in-laws have to do everything. Even sasoor log (fathers-in-law) are taking the grandchildren to school.

Suraiya’s description encapsulates the social change in household organisation and gendered labour distribution. There has been a rise in labour market participation among UK-born/’second-generation’ women compared to a very overwhelming pattern of economic inactivity among ‘first-generation’ migrant women from Pakistan (Cheung 2014, 148–150). Combined with low uptake of formal childcare and early years provision (Bryson, Kazimirski, and Southwood 2006, 42), this has meant that not only are older women with working daughters-in-law unable to always lean on daughters-in-law for domestic work and care but further, they may also be involved in providing informal childcare for young grandchildren. Another social trend is that adult sons and daughters-in-law are increasingly likely not to be living in the same house as older parents. As Shaw (2004, 202) has observed, rather than living for many years with the husband’s parents, young married couples now quite promptly move out to a council flat or their own house in the same area. Shaw notes that this has altered the patrilocal norm and enabled bonds between women and their natal kin to be given given fuller expression. Relatedly, Werbner (1990, 128) claims the emergence of a ‘matrilateral bias developing among second generation female kin’. The women I worked with reflected at length on their preference for spending time with their daughters and on their close and spontaneous friendships with them. Contrast Suraiya’s laconic reflections on the relations between mothers-in-law and daughters-in-law with how she gushed when talking about her daughters:

I live with my one daughter. The other doesn’t live with me, she’s married in East Ham but if I want her she’ll come within two hours. Girls do a lot, they have time for their parents, they keep their mums happy as well as their husbands.

My interlocutors often spoke of their adult daughters as the people in their lives who cared for them most. Where Suraiya gushed, other women spoke of their relationships with their adult daughters as so precious that they were almost indescribable. For Safina,

My daughter, she is my first friend… she is my daughter, my sister… everything. I share everything with her. I talk to her about everything… everything, shopping, about her dad and brother; maybe that is why I have never needed someone to talk to.

Safina said this in the context of a long autobiography of care in which she dwelled for several hours upon the theme of sabar. Safina had provided decades of care for her chronically ill husband, who had been incapacitated from work by a combination of hypertension, skin, lung, kidney and musculoskeletal disease. There had been multiple occasions when he had been overlooked and unfairly treated by the health services, when she and her daughter had to fought doggedly for medical attention, in a context of racialised denial of appropriate healthcare (see Qureshi 2019, 75–77). At the end of all the stories about her trials and tribulations seeking and providing medical care for her husband, she began to speak of her own state of health. She wept, not only when thinking/talking about what she herself had been through – she, too, had long-standing musculoskeletal, gynaecological and digestive conditions, and latterly also low blood pressure and high cholesterol – but also to think of how much she had worried her daughter when she and her husband had both ended up in hospital. Her daughter was not only worried for Safina’s health, but also because her father, that’s to say Safina’s husband, had not known even the bare details of Safina’s hospitalisation. Das (2007, 2020) has written in the context of Partition violence about women survivors’ concealment of painful knowledge as small acts of care; here Safina intimates towards more ordinary forms of inordinate knowledge, which could harm or overwhelm others. Safina and her daughter did not tell her husband about their problems, she said. Rather, they held that knowledge in:

We do not tell him our problems. It has been long now that… we hide things from him as we worry that he might get stressed. Sometimes when he is wrong and we are right, then too we keep quiet as he might get stressed.

Her work of sabar, containing her own health problems, was also a source of resentment. She spoke of the inequality that whereas she did not speak of her illness to him, he summoned her for each and every very small problem. In a particularly dense set of reflections, she said:

I tolerate a lot. I do get angry sometimes. Everything is done according to his wishes! It does make me angry. But I tolerate a lot. Women do not speak, but the girls from this country do speak… But I tolerate a lot. Sometimes I wonder at my tolerating power. Then I think that most of my life – when I was young I have compromised, now why can’t I compromise? But I feel bad about it sometimes… very bad.

Safina’s emotional closeness with her daughter – her first friend – counterbalanced the inequalities wrought into her marriage and into caring for her husband:

It is not easy to be married, my daughter also says that. She says that she cannot be like me. When my husband is not right, then he is not! She disagrees with my husband then. But I tell her to keep quiet… and for this she argues with me…

Whereas Safina sought to exercise sabar, tolerate and compromise, her daughter spoke up to her father on Safina’s behalf. And yet Safina still told her to keep quiet; for which they argued among themselves. Safina presented her daughter as following a different model of marriage, saying her daughter cannot be like she herself. Yet she also describes her daughter appreciating, now that she herself was also a wife, that it is not easy to be married. Conversations with Safina bring out the ‘affective inequalities’ (Juvonen and Kolehmainen 2018) woven into the exercise of sabar, its fruastrations and ambivalences. Relationships between mothers and their adult daughters matter a great deal in offsetting the asymmetries of neglect from husbands, in-laws, and even adult sons. Daughters may acknowledge and care, and shore them up; encouraging them to prioritise themselves and be less selfless, echoing the notion of self-care even if, Safina suggests, it does not feel easy to be able to ask for care (Michaeli 2017; Piepzna-Samarasinha 2018). This account of changing bodies, families and inequalities of care provides a setting for the rest of this paper, where I now turn to my follow-up interviews with some of the women after an interval of seven/eight years.

Nasreen

In 2005–7 I would see Nasreen often. A patient of glaucoma since the age of 23, she had gone on to develop diabetes, high cholesterol and an underactive thyroid. In 2013, we had a tearful reunion at her home, and she allowed herself a rare occasion to cry and hold forth. She was now in her mid-50s and time had exacted a toll on her health. The fears she had spoken about earlier had become a reality, as she was losing her sight due to glaucoma. But after telling me about her routine of medications, she immediately spoke, as before, of the strength she drew from God, and of how she had strived never to let her children know of her suffering. Whereas Safina said that she and her daughter both concealed knowledge of their problems from their husband/father (cf. Das 2007, 2020 on poisonous knowledge), for Nasreen the act of care was to conceal the extent of her physical deterioration also from her children:

My left eye is now very bad, I’m nearly blind [sobs]… the side vision is gone, and from the front [sob]… I have to inject myself twice a day, and cholesterol tablets and for thyroid, I have that problem too. I also have sugar problem, so there’s that too… I have to manage all that. So my health is not good but Allah gave me a lot of himmat (strength). I think to myself himmat nahi harna (I mustn’t lose faith), whilst I’m still able, I should do what I’m able to do. I think to myself, if Allah intends for me to do this work, he will give me himmat, and he does. If anybody asks me too much how I am, I get annoyed with them. When it’s time for my children to visit I put lipstick on so that I seem fresh to them so that when they visit from outside they don’t feel that ‘my mother is ill’. I don’t want their lives to be affected because of me.

This act of visual covering-up, of putting on lipstick to contain her illness was a thread back to our earlier conversations, when she had again described putting on lipstick to look fresh for her children during the worst times, in the past, when her ailing father-in-law had been utterly indifferent to her needs. Das (2007, 2020) writes of how relational tensions from the past may ‘rotate’ and confront people in the present: so it was, seemingly, with Nasreen and memories of her father-in-law. His ill health had been the absolute priority in the family. He ignored her attempts to account for any limitations in her work of care and even, she recalled, cast aspersions about her health limitations being not genuine, the excuses of a young woman averse to domestic work. She faced these complaints with sabar and cared for him at the expense of suppressing her own needs, not letting anyone know the costs on herself:

Main se sab kuch saha (I bore everything), I was strong throughout that time but when I look back, I see it had a big effect on my health. It was stress, that gave me that glaucoma pressure. I got uveitis (inflammation of the eye) and diabetes in a very young age. Even when that happened to me, it was so bad, one time, I couldn’t even see my reflection in the mirror. I was terrified. My children were very small then. Then they gave me hard lens to put in my eye. It was such a complicated case, they couldn’t even give me a good lens and everything was blurry. My daughter was only six-seven years old and she helped me put the lens in. And then there was all the family pressure, because at that time I looked young, so everyone felt I was making it up, ‘is ko kuch hai hee nahi (there’s nothing wrong with you)’. At that time my susar (father-in-law) was there too, and he was barhe, buzurg (an elder, aged) and he used to say that ‘she’s making a fuss over nothing, how can she bother her family like that, she doesn’t have any problem, she’s so young, maybe she just don’t want to work’.

On this occasion, with me, Nasreen allowed herself to speak ill of her father-in-law. But she spoke of how, at the time, a sense of family honour had prevented her from doing so. She brought up, intimated towards a memory, of one particular, untold event, something that had passed between she and her father-in-law; but then stopped herself from saying any more, shuddering ‘my God, leave this topic’. She had determined never to share that event with anyone, but to leave it to God. She said God did reward her with solace, in the end.

That baat (thing, event), woh jaise aatish fishan ki tarah phat-ti (it exploded in me like a volcano). I just, I left it on Allah, that on the day of judgement… [silent] I told him, I’m leaving this baat on Allah, that on the day of judgement he will ask you about this. From this day on, I will never speak of this, and then, I left that baat. He knew it, and I knew it. And in front of his children, I said main yeh baat chor rahi hoon (after today I will never speak of it, I will never repeat it). I will never speak of it, I will never repeat it. If I were to speak of it then Allah would be upset, he would say ‘you have made the decision yourself’ [i.e. the decision that Allah will take on the day of judgement]. So I’m leaving this baat now. On the day of judgement, tumhari gerden ho gi aur mera haath hoga (it will be your throat and my hand). Then after saying that, I forgot this baat. And I really did close it, I never remember it now, that chapter is closed. And thanks to Allah Ta’ala, the fruit of that sabar was sweet, my children are happy now, settled, my husband is very caring and I’m able to care for others, and that will give me strength.

I would have liked to understand better what Nasreen meant, when she related whatever had passed between she and her father-in-law to infractions of family honour. In her analysis of one interlocutor who refuses to take the name of the relative who had sexually abused her as a child, Das (2020) thinks of the abuser’s name as poisonous knowledge embedded within the woman’s body. But whereas for Das’s interlocutor the problem was of ‘to whom one could make oneself known’ (p.87) – her mother had wilfully ignored the abuse and stifled her voice on the one occasion where she could have spoken at all – Nasreen made herself known to Allah and, she told me, gave herself over to sabar: patient endurance, waiting for the day of judgement, when God will hold us all to account for our deeds, when she would be asked whether she forgave her father-in-law – and at that moment she could be a witness for him, and do good for his eternal soul, or she could reap vengeance, and it would be her hand, and his throat. Containing this harmful knowledge, the fruit of her sabar was sweet, in that she succeeded in her wish for her children to grow up unaffected by her suffering, accomplished in education, and happily married and settled. But at the same time she now recognised the toll it took on herself. I asked Nasreen whether she hid her suffering from her children, as she had said she did before. She professed that she had changed, on the children’s own insistence, and also in recognition that while the fruit of sabar could be sweet, it demanded a price:

When they got a bit older they started to feel that ‘ma remains silent, she doesn’t confront’ [said in English]. Then they told me to speak out for myself [cries]… they said, ‘you stay silent. Say something back’. So then sometimes I did say something, but then I used to fear there’ll be arguments in the house and I didn’t want that… Thank goodness, what I wanted in life – that my children be settled- Alhamdulillah (praise God) Allah gave that. [Falls silent] But everything… demands a price.

With time, in dialogue with her children and in recognition of the risks of being taken for granted, even abused or exploited by others, her stance towards sabar had changed, she said:

I do share, with my daughter, and with my sons. Now my susar (father-in-law) died 12 years ago, now that time has passed and thanks goodness I don’t have any difficulty. My children are happily married and things have developed with my children, I share with hem. Now even my husband, mujh mein woh bardasht nahi rehti hai (that tolerance within me has gone) [laughter enters voice] and I share everything with my children – just like, as in any family there are normal problems. So, I talk with them. I learnt from my experience, that insaan ko ittna chup nahi rehna chahie (one should not remain silent). Sometimes in life, as I see with my children, my daughters, my daughter-in-law, the children of my neighbours, the young generation, I give them this message, that ‘bear every thing (har baat bardasht karo) but there should be a limit. Look after yourself as well because if you’re ok, then you can help others. But if you’re not ok, you’re useless to others’. Now, I didn’t do this before, but now, I look to myself as well, thinking this, that I should look after myself too because only then will I be able to look after others, look after myself and others.

The laughter that came into Nasreen’s voice signalled that letting go of sabar was something of a relief. Thus Nasreen warned the next generation to protect themselves and their health. As she put it here, in these very words, it was impossible to care for others without caring for oneself. Nowadays, although her daily routine continued to be physically intense – Nasreen’s live-in daughter-in-law was working full-time at a bank, and Nasreen did the preschool pick-and-drop for her grandson, the shopping, and all cooking herself, as she had done for her own children. Yet it seemed she was trying to revise her lifetime of habit and allow herself some space to sit down on the settee and not budge for a few hours, as she she said:

My body is tired, I work all day but in the evening when I sit down, I can’t move for a few hours. I catch up then with my friends and family, I keep contact with them all.

My return to Shaheen, an interaction to which I now turn, reflected a similar intuition about how caring for others required caring for the self and elaborated on this notion of now ‘taking time’ for oneself, suggesting other ways of being in time rather than the strivings of sabar.

Shaheen

Shaheen was 45 when I first met her in 2005. She had developed a cascade of chronic health conditions since the cusp of her fourth decade, first migraines and musculoskeletal pains attributed to a gap in a disc of her spine, followed by hypertension, depression and anxiety, a severely underactive thyroid, and most recently also diabetes, which she blamed on her GP’ mismanagement of the pills she was prescribed for the thyroid; there were signs of incipient rheumatoid arthritis. Returning to Shaheen in late 2013, now aged 53, I found her still expounding upon the exercise of sabar. Although she said that things in the family had in some ways improved in the last few years, she felt engulfed by her sense of responsibility for others, her mind still racing from one person and their problems to another.

You might laugh at this, but I feel like I’ve got the weight of the world on me all the time. I feel like I have to be there for everyone all the time. I can’t even sleep at night.

Shaheen continued to be the meta-carer for her natal family, doing more than her ‘fair share’ on her siblings’ behalf, in attending to her mother. This was partly because she was the only one of them who was not working: her three sisters, and one sister-in-law, were all employed full-time. But it was partly also because caring for others was fundamental to who she was:

All my life I’ve had that, I think, cause from when I was 10-11 I had the responsibility of all my brothers and sisters, although my brother’s two years older than me he treated me like I was the big sister, like I’m keeping everyone together. My parents expected a lot from me cause I was the older one, I was the responsible one.

Shaheen presented her shouldering of the care for her widowed mother as a continuation of her lifetime role as the responsible one. But she did feel ongoing frustrations with her siblings for not attending to their mother enough – especially with one particular younger sister:

Lately I think, my sister, she’s started to really pull away from my mum a bit and this is what’s making me angry, that ‘you promised my dad [when he died] and you’re not fulfilling your duties to mum’ and my mum’s finding it hard now cos she knows I’ve got a lot of running around, and she says, ‘you’re the only one doing it for me’ – she knows she’s making me ill, cause I’m running around cause my eldest Nazia, she had this eye infection, this scratch in her eye, for a year it went on, and she couldn’t see, she looks after her kids so for the last year I’ve been looking after her and running after my mum. And then my other sister went through a bad time, my middle sister. She said to me, ‘if it wasn’t for you where would I go, what would I have done’. I’m not saying this in a proud way, but I’ve been there for my brothers and sisters, in every way possible, and then it makes me angry. Mum’s about 80 now Alhamdulillah (praise God), and I think to myself, ‘mum’s always been there for you’ but now materialistic things are getting in the way. My mum feels for me, that I’m running around too much. Cause I burn out, and when I burn out it takes me two-three weeks to get back to anything. I’m on that settee for a week, I can’t get off that settee cause I’m running around physically and mentally worrying about every single person.

As this extract suggests, Shaheen’s mother was telling her that she was doing too much. Her children were also critical of the extent to which she bent over backwards for her brothers and sisters. Shaheen said she agreed with them, acknowledging that she had become ill because of worrying after others, over-extending herself on behalf of others. Like Nasreen, she talked a lot about taking time for herself nowadays, ‘taking time for myself’, ‘spending time out’ – even ‘time out’ from her efforts to stay spiritually strong, if her health did not permit it:

Since I’ve been praying I’ve found I’ve got a inner strength in that way. But the tiredness is there, so what I do is, I take time out now from my prayers and if I can’t do anything I don’t do it. I don’t do it at all I just leave it. If the house is a mess, it’s a mess. If there’s dishes to wash and they’re left in the sink for two days I don’t do it. Because I think to myself, I’ve got to look after myself, and my children, for my husband, and my brothers and sisters. And for my mum, especially.

Like Nasreen, then, Shaheen said she had learnt the lesson, too late, that you have to look out for yourself in order to look out for others. Like Nasreen, Shaheen had come to be critical of her own sabar as it had led her to over-extend herself and make herself ill. She was, she said, starting to try to lay down the line with others and no longer be taken for granted. Yet at the same time she valued the effect her sabar had made on her children, and how responsible it had made them turn out. She clearly cherished all signs of her daughters’ caring nature:

I say to them [to her sisters], on the weekend, that ‘you have to look out for mum, like my girls, Nazia and Shanila, they’re looking out for me’. Like last year, when I went away on holiday, my girls looked after my mum, and mum said they were so good, ‘they didn’t make me feel like I was on my own, I was with them every day’.

Shaheen observed, proudly, that her daughters were fitting into her mould, just as she was fitting in with her mother’s mould – a connection across three generations. In this way, Shaheen’s reflections in 2013 preclude any easy conclusions about a straightforward shift away from sabar, for alongside her seeming embrace of notions of self-care remains a valorization of selfless caring for others. The concluding discussion develops these insights from Shaheen, concerning the non-unidirectional changes that occur in sabar over time.

Conclusion: sabar as an unstable ethics of care

As we can see from the stories discussed above, sabar is a form of ethics of care, but it is unstable. Doing sabar entails thinking about one’s present in terms of waiting: waiting for something difficult to pass; waiting for something to come back in return, perhaps the feeling of becoming closer to God, or waiting for God’s judgement on others, waiting for the children to grow up, marry and settle well. Das (2007, 85) has written of sabar as an activity of letting time do it’s work, ‘shadow[ing] time… in a manner more like a stalker than a rebel’ (see also Han 2012 on ‘active waiting’). But, as I learnt when I returned to East London in 2013, time could work not only on suffering and on relationships, but also on the ethics of exercising sabar. Moving away from seeing endurance in terms of striving for ‘the good’ (Mattingly 2010, 2014), efforts to maintain frayed social relations (Banerjee 2020) or achieve imagined forms of relatedness (Gammeltoft 2021), women told me that with time – with the evolution of chronic conditions, life courses and domestic cycles – came frustration with waiting, and the realisation that they have to take care of themselves. Time interacts with sabar: after a time of giving enough of yourself to others, can come a time for yourself.

These stories about letting go of sabar connect with debates about the infinity of care for others. Levinas (1981) argues our responsibilities for others do not diminish even when the Other threatens to annihilate us. But this then raises the prospect of being wholly consumed in one’s responsibilities for care, as Nasreen and Shaheen intimated. Danely (2017, 422) characterises care and fatigue as continuously folding in on one another. His interlocutors sometimes considered killing themselves or the person they cared for, and he says there is ‘no assurance that devils will stay put’, but he insists that people ‘somehow hold on to a kind of hope’. Han (2020, 53) provides a darker vision, of the ‘lethality of care’, the murderous rage that can consume people locked into binding ties. It is in this context that Das (2015) and Han’s (2012) reflections on Levinas become so important, as they temper Levinas’s insight by seeing how the problem of responsibility lies not in the intuition of the infinite but in recognizing one’s own finite capacities to respond. As Das (2015, 115) writes, ‘limiting the desire for infinite responsibility to the other is paradoxically what might attach one to life itself’. There may be a difference in the problem of responsibility as lived through struggles to care for kin in the context of material scarcity, and in the context of finite bodily and emotional resources. With material resources, money spent on kin is money lost to the self, as with Das’s (2015, 119) informant who suffered ‘not only the separateness from the other but also an implicit indictment of himself’. With a person’s bodily and emotional reserves, perhaps it is not the same as with money. The women whose stories I have presented here spoke of the realisation that caring for themselves was ultimately a way of caring for others. They had to look after themselves, for their children, their husbands, parents and siblings, because if they themselves were not well, they would not be able to care for others. In this formulation, we do not perceive an antithesis between other-interest and self-interest, because ‘thinking of others and thinking of oneself run together’ (Strathern 2016, 168). There is an amplification between caring for an other person, and caring for oneself.

With time, then, sabar did not lessen – it implied care for oneself while still caring for others. However, forms and commitments to care alter over several temporal scales. Anthropological work has charted how the development of the life course variably diminishes and reawakens the sense of the urgency of responsibilities for caring for others (Coe 2016). This insight may be developed by considering the interaction of life course time with sabar. The timing of appropriate self-care comes after a time of giving oneself to sabar; it would be meaningless, in this context, to privilege self-care without having achieved sabar. This delay, with women only becoming able to claim care for themselves after having first overextended themselves for others, is crucial to women’s intuition of and response to the problem of responsibility for others. Beyond the temporal scale of the personal life course is how care commitments may alter over inter-generational timescales. Understandings of care may shift between between generations (Mody 2020), and the evaluation of care as normative, good or bad ‘emerges over the time of kinship and domestic cycle’ (Rapp 2020, 256). This insight may be extended, as the stories discussed above suggest considerable complexity in how moral expectations surrounding sabar may move between, or loop between generations. The women quoted above attributed their own questioning of sabar, their frustration with self-sublimation, over-extension and neglect, to being in this country, amid the young women here who do speak out. The exercise of sabar is open to inter-­generational critique. However, as witnessed with Shaheen’s parting words, any turn away from sabar was not unidirectional, and valuing the selfless caregiving for others retained strong traction. Whilst these women expressed some understanding of their daughters’ more vocal and resistive model, they also encouraged their daughters to give more of themselves, and enter their mould.

Approaching care as ‘unsettled’, changing over time in unstraightforward ways enables an anthropological account of ‘the range of hopeful, doubtful or ambivalent attitudes to and experiences of care, even in contexts of structural disenfranchisement’ (Cook and Trundle 2020, 180). These contexts of disenfranchisement rely on grids of gender socialization, inter-generational and kinship norms, and structural forces of racialization and economic inequality, necessitating attention to ‘sociopolitical and economic change even in studies focused on intimate care practices and relations’ (Buch 2015, 285). The conscription of middle-aged British Pakistani women to care may be in the process of being reworked through broader cultural dynamics such as the happiness industries that have made self-care now a central part of everyday life (Michaeli 2017): notions that came to the middle-aged women I spoke to very concretely through their adult daughters. This is the broadest sense in which sabar needs to be seen as dynamic, by taking in and moulding new perspectives from diffuse sources. At the same time, though sabar may alter, there are moral expectations that remain, deeply embedded in ‘forms of life’ (Das 2020, 257). Rather than attributable only to wider social change, women’s changing perspectives on sabar arise out of the provocations of everyday life, where inequalities in care are ‘shaped in everyday affective encounters, as well as in their interpretation and judgement’ (Juvonen and Kolehmainen 2018, 2).

Acknowledgements

I am very grateful to Emilija Zabiliūtė, Hannah McNeilly and the other authors contributing to this special issue, and to Janet Carsten and Lotte Buch Segal, for their support and criticism regarding this paper, as well as to the two anonymous reviewers.

Ethical approval

Ethical approval was granted by the London School of Hygiene and Tropical Medicine and University of Oxford’s institutional review boards.

Disclosure statement

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

Additional information

Funding

This work was supported by the Economic and Social Research Council (grant numbers ES/J003514/1 and PTA-030-2002-01210).