Chronic Illness and Matters of Care in Pandemic Times: The Experiences of Women in Aotearoa New Zealand.

Holly Thorpe: conceptualisation (lead), data curation (equal), formal analysis (equal), funding acquisition (lead), methodology (lead), project administration (lead), writing – original draft (lead), writing – review and editing (lead). Grace O'Leary: conceptualisation (supporting), data curation (equal), formal analysis (equal), methodology (supporting), writing – original draft (supporting), writing – review and editing (supporting).

This project received ethical approval from the University of Waikato Human Research Ethics Committee, HREC(Health)2022#05. All participants were fully informed and signed informed consent to participate, and for their data to be used as presented in this manuscript.

Our research approach is informed by a feminist ethic of care. Both authors live with chronic illness, the first author is Pākehā (New Zealander of European descent) and the second is Māori (Indigenous person of Aotearoa New Zealand), and our own experiences during the pandemic shaped this project in a range of ways (i.e., the research design, the questions asked, relationships with participants). With ethical approval from the University of Waikato (HREC/Health 2022#05), we invited women in our social networks to ensure we could provide a safe and caring space for their participation. We were not motivated to capture a large sample and thereby quantify breadth, but rather to engage in rich conversations about women's varied understandings and experiences of care. Those who expressed an interest were provided with an information sheet detailing their ethical rights as participants, and each participant completed an online or hard‐copy informed consent form. Between May and October 2022, we conducted interviews with 11 women living with one (or more) chronic illness during the pandemic. Upon the request of participants, two of these interviews also included their mothers who engaged in extensive care practices for their daughters, for a total of 13 participants. The women ranged in age between 28 and 64 years and live with a range of chronic illnesses, that is, long lasting conditions that usually can be controlled but not cured. Some had lived with their illness since childhood, whereas others were in the process of diagnosis during the pandemic. Many of the women were also experiencing compounding mental health issues (i.e., anxiety, depression, sleep disruptions) before and during the pandemic. The women varied in socioeconomic circumstances and cultural and social identity, with our sample including four Māori women, two immigrants, two mothers with young children, and four mothers of teenage or adult children. Pseudonym Age Condition Ethnicity/Culture Brianna and Amanda (mother) 28 and late 50s Bronchiectasis Pākehā Hahana and Gwenda (mother) 29 and late 50s EDT (Ehlers‐Danlos syndrome) and POTs (postural orthostatic tachycardia syndrome) Māori Aroha 34 Mental health condition/osteoarthritis Māori‐Pākehā Beth 36 Mental health conditions/Fibromyalgia English Clara 38 Chronic back pain Pākehā Shelley 39 Rare form of inflammatory arthritis/immunocompromised Pākehā Aisha 40 Bronchiectasis Pākehā Charlie 43 Adenomyosis Māori Powm 43 Cancer European Khawla 53 Neurological condition (unnamed) South East Asia & Middle Eastern Jean 64 Chronic osteoarthritis Pākehā Respecting the health concerns of participants, most of the interviews took place online via Zoom. The semi‐structured interviews followed the same guide with options for participant interpretation and researcher adaptation, and ranged in length (from 50 to 90 min). Each interview was digitally recorded, professionally transcribed and then presented back to participants for edits. Throughout the data collection and reflexive thematic analysis processes (Braun and Clarke  2019 ), our focus was on the complexities and nuances within the women's experiences. Care emerged as a key theme throughout the interviews, and we honed into the multiplicities within the ways care was articulated and practiced by the women. During the interviews the women often recalled their risk management strategies from the early stages of the pandemic, including when little was known about the virus and feelings of fear and uncertainty where particularly high. Although the following analysis does include some discussion of how women's different cultural ways of knowing care shaped their pandemic experiences, we do not consider generalizations to be a care‐full act within our research study. As Mol ( 2008 ) reminds us, ‘articulating “good care” … is an intervention’ rather than a moral judgement of practice or factual utterance (6; Puig de la Bellacasa  2017 , 6). Similarly, our efforts to create space for women living with chronic illness to articulate what care means to them, is an intervention into research and policy that has long overlooked their embodied, affective, multidimensional and intersectional experiences of care, and its felt absence. Guided by a feminist ethic of care and practices of reflexivity, our research process has been highly relational, moving between our own lived experiences and those of our participants, always in dialogue with Puig de la Bellacasa's ( 2017 ) theory of care. Furthermore, taking our cue from the epistemological dimensions of Puig de la Bellacasa's ( 2017 ) matters of care, we learnt to hone into the multiplicities and ambiguities of care, both through what is spoken (articulated) during interviews, as well as what is felt in and through the body. For example, reading transcripts and writing early drafts while we were recovering from COVID‐19, deepened connections with our participants’ articulated experiences. In such ways, our embodied and relational empathy with participants inevitably shaped, and arguably sharpened, our analysis. Although theory weaves throughout the subsequent analysis, we centre the voices of women living with chronic illness during the pandemic. In so doing, our analysis is full‐of‐care, not writing over our participants’ experiences, and always working to respectfully represent the complexities and nuances in their highly personalised articulations of care.

In the remainder of this paper, we present our findings in three sections that highlight the multiple spaces across which care functioned for women living with chronic illness, including the body (a site of vulnerability and intersectionality), and places like those of perceived safety for some (i.e., home), or danger (i.e., community spaces) and consider the affects of governmental policy and shifting social discourse during the pandemic. The three sections—(i) self‐care, (ii) the roles of family, friends and strangers, and (iii) diminishing care—reveal care as relational, embodied, affective and ethico‐political encounters shifting across space, place and time. We also highlight how the women's understandings and experiences of care evolved alongside changing governmental policies and social discourses around risk and responsibility. For many living with chronic illness, everyday practices, routines and interactions are often cautiously considered in a context of managing their conditions. During the pandemic, new risk assessments took considerable time, energy and emotional investment: I was in a bit of denial about my condition, then with COVID, suddenly I’m labelled as a ‘high‐risk’ person. It was quite a confronting time for me having to confront my illness … and it was a very stressful time trying to figure out how to keep me and my family safe. (Aisha) I was in a bit of denial about my condition, then with COVID, suddenly I’m labelled as a ‘high‐risk’ person. It was quite a confronting time for me having to confront my illness … and it was a very stressful time trying to figure out how to keep me and my family safe. The women interpreted and navigated risk in a range of ways. Although to varying degrees, all our participants took firm measures to protect themselves from the risk of contamination, including strict isolation, limiting social contact long after isolation periods had ended and carefully considering conditions for entering social situations. The women described the constant risk calculations and everyday acts of self‐care (protecting themselves from un/known risks) to be exhausting, taking a toll on their mental and physical health and wellbeing: I crashed. I had panic attacks. Depression. … I just wanted to sit in my wardrobe. So, yeah, [my] wellbeing [was] definitely impacted by lockdowns, an accumulation of things like lack of sleep … a dip in hormones … COVID. Then also all my family over in the UK are getting COVID. (Beth) I crashed. I had panic attacks. Depression. … I just wanted to sit in my wardrobe. So, yeah, [my] wellbeing [was] definitely impacted by lockdowns, an accumulation of things like lack of sleep … a dip in hormones … COVID. Then also all my family over in the UK are getting COVID. Many of our participants (Hahana, Shelley, Aisha, Clara, Beth, and Aroha) noted that this heightened level of mental distress also exacerbated or triggered their underlying conditions: For me, when things get on top of me, stress goes to my weak point, and that is my arthritis. During the first lockdown … we don't know what's going to happen and it's all really new and unknown, and so that's stressful. You're at home with the kids … trying to school them and keep them at home and then all of a sudden, I start having all these [joint] blowouts you know, and so that just speaks to how that stress kind of impacts. (Shelley) For me, when things get on top of me, stress goes to my weak point, and that is my arthritis. During the first lockdown … we don't know what's going to happen and it's all really new and unknown, and so that's stressful. You're at home with the kids … trying to school them and keep them at home and then all of a sudden, I start having all these [joint] blowouts you know, and so that just speaks to how that stress kind of impacts. For the women in our study, living with a chronic health condition during the pandemic was a compounding health crisis. In some cases, their vulnerability to risk, uncertainty and changes in routine, and having to self‐manage symptoms, exacerbated their pre‐existing health conditions. Yet, some women (Aisha, Hahana, Clara) did not always seek help when they needed it because it provoked further health concerns: ‘There were actually times where I cancelled appointments, because I would get so anxious’ (Clara). International and Aotearoa‐specific research studies have revealed the heightened challenges for people with disabilities and pre‐existing medical conditions to receive adequate medical care (both COVID‐19 and non‐COVID‐19 related) during the pandemic (Orakani et al.  2024 ). The women in our study had similar experiences, with only one participant feeling well supported by the health system during the pandemic. Although Powm had ‘no complaints’, all the other women described an array of challenges within a severely stretched health system. In this way, our findings align with international research studies that have shown that the reallocation of resources towards urgent care for COVID‐19 patients resulted in inadequate ongoing care for chronic conditions (Kendzerska et al.  2021 ). This was particularly stressful for those needing appointments for treatment or diagnosis (i.e., Hahana, Shelley, Clara, Beth). For example, Beth describes the challenges of accessing medical care: I couldn’t get hold of my psychotherapist. I couldn’t see my GP. I needed someone to help me, I needed to see a GP because I was getting panic attacks. … And they turned me away. They said, “We’re only seeing urgent patients”, but I was getting to that point where I was having harmful thoughts. I couldn’t get hold of my psychotherapist. I couldn’t see my GP. I needed someone to help me, I needed to see a GP because I was getting panic attacks. … And they turned me away. They said, “We’re only seeing urgent patients”, but I was getting to that point where I was having harmful thoughts. Shelley, Beth and the other mothers living with chronic illness in our sample (Aisha, Clara, Powm), each spoke to the additional challenges of managing their own self‐care alongside their caring responsibilities for others (children, partners, elderly parents), highlighting the importance of intersectional approaches to understanding care. Some women's experiences highlighted inequities and injustices that living with chronic illness can bring for some more than others, during and beyond pandemic times. Such insights were particularly well articulated by Hahana. Reflecting on the long delays she experienced in receiving medical care, Hahana spoke to the intersections of marginality that impacted her experiences of the health system before and during the pandemic: If I got COVID and had to be put on a ventilator or whatever, I can’t guarantee that I would get one of those ventilators in [name of small city] because there’s not many and I’m sick. That’s already a mark against me. Unfortunately, I’m also Māori, which is also a mark against me, which people don’t talk about, but it is a thing. If I got COVID and had to be put on a ventilator or whatever, I can’t guarantee that I would get one of those ventilators in [name of small city] because there’s not many and I’m sick. That’s already a mark against me. Unfortunately, I’m also Māori, which is also a mark against me, which people don’t talk about, but it is a thing. Here Hahana highlights the inequities of medical care in the Aotearoa health system which are well supported in the literature (Brown and Bryder 2023 ; King et al.  2020 ), as well as her own personal experiences: I find that I’m not treated the same as someone who is Pākehā … I saw five different specialists until someone actually believed me. I find being female and Māori definitely shapes medical professionals' views of me, which is why I always opt for female doctors because then at least they get one of those things for me. I find that I’m not treated the same as someone who is Pākehā … I saw five different specialists until someone actually believed me. I find being female and Māori definitely shapes medical professionals' views of me, which is why I always opt for female doctors because then at least they get one of those things for me. Living with chronic illness while being Māori and female, Hahana is unequivocal in her understanding of the double discrimination she faces. Her lack of trust that the medical system would provide her with the care needed if she became seriously unwell during the pandemic reinforced her sense of personal responsibility for her own health, thus placing considerable pressure on herself and family. Such insights align with international research studies that have highlighted the racialisation of care and differential impacts of the pandemic on ‘racialised people highly exposed to infection’ (Dowrick et al.  2024 , 104), and the individualising of responsibility for risk management among those from culturally and linguistically diverse groups who often experience discrimination within health systems. Although the government in Aotearoa was critiqued for not proactively including Māori in COVID‐19 planning and decision‐making (King et al.  2020 ), independent Māori‐led public health responses were highly effective in working to protect and support Māori during the pandemic (Pihama and Lipsham  2020 ). However, Hahana's past experiences at the intersection of gendered and racialised discrimination surfaced strong feelings of distrust in the publicly funded government health system, motivating her own individualised actions to protect her own health and wellbeing. Sharing similar feelings was Charlie, who also struggled with intergenerational distrust towards government provided medical care, this time when it came to vaccination, when she questioned which forms of care will truly protect: It’s very Westernised, it’s very clinical … there’s stuff that these mandates and colonisation took away from us right at the beginning and made us this deficit culture of people who are obese, have high smoking rates, high cancer rates, we die earlier. … Yet we’re not given a mandate to actually look after our own wellbeing and our own people the way we know how, which is being together. When whānau [families] are together, we thrive … we come from a long line of really strong tīpuna [ancestors] … I had to have the deepest internal wānanga [deliberation] of doom when I decided to get the vaccine. I asked my tīpuna, is it the right thing to do? It’s very Westernised, it’s very clinical … there’s stuff that these mandates and colonisation took away from us right at the beginning and made us this deficit culture of people who are obese, have high smoking rates, high cancer rates, we die earlier. … Yet we’re not given a mandate to actually look after our own wellbeing and our own people the way we know how, which is being together. When whānau [families] are together, we thrive … we come from a long line of really strong tīpuna [ancestors] … I had to have the deepest internal wānanga [deliberation] of doom when I decided to get the vaccine. I asked my tīpuna, is it the right thing to do? In such examples we see how promises and expectations of practices of care are informed by historical and intergenerational relations with government and health systems shaped by intersecting oppressions (i.e., British colonisation, patriarchy). In their efforts to manage their health and wellbeing, many of the women (i.e., Aisha, Aroha, Brianna, Clara, Hahana, Powm, Shelley and Khawla) negotiated alternative practices (e.g., walking, going for a run or to the gym) of self‐care that they perceived as meeting an acceptable level of risk given their conditions: The only thing that stopped me from really developing the anxiety of not leaving my house, was the dog. I think without him I would have quite easily locked myself in my room and just not come out and it would have taken a lot of intervention from mental health professionals to get me out probably. It forced me out of the house, which was really helpful. (Hahana) The only thing that stopped me from really developing the anxiety of not leaving my house, was the dog. I think without him I would have quite easily locked myself in my room and just not come out and it would have taken a lot of intervention from mental health professionals to get me out probably. It forced me out of the house, which was really helpful. In seeking out spaces and places for leisure that felt reasonably ‘safe’, the women were engaged in constant risk assessment and calculations, always considering how, where and by whom their health may be compromised. Yet in many cases, caring for oneself meant making difficult decisions not to visit or attend places or events that outside of the pandemic would have been meaningful to them. Some spoke of the sadness they experienced not being able to participate in activities of importance to them, such that their usual acts of self‐care were unavailable to them, prompting new tensions as to how to look after their health and wellbeing amidst a new context of risk: I have to run to keep myself on the level. And if I don't, I can feel myself not coping. So yeah, it's really important for me. … I try to do that a few times a week yeah … but during the first lockdown I couldn't because I was having constant flare ups. (Shelley) I actually haven't gone to a yoga class since the pandemic, and before that I quite liked Bikram. It just seems like a grosser space … sweat condenses the mirrors … you don't want to be in spaces like that! (Brianna) I have to run to keep myself on the level. And if I don't, I can feel myself not coping. So yeah, it's really important for me. … I try to do that a few times a week yeah … but during the first lockdown I couldn't because I was having constant flare ups. I actually haven't gone to a yoga class since the pandemic, and before that I quite liked Bikram. It just seems like a grosser space … sweat condenses the mirrors … you don't want to be in spaces like that! Hahana spoke of how calculating and managing risk and ongoing uncertainty (i.e., not knowing people's vaccination status) impacted important aspects of her cultural identity and sense of connection: As a people we’re all about whakawhanaungatanga [connecting] and manaaki [caring for others] … but it’s really difficult … I can’t go [to functions] because I don’t know what people’s vaccination status is … I think I’ve been back to my marae [Māori community space] maybe twice since the pandemic hit … I haven’t been able to go to tangi [funerals] … [and] that’s definitely something you grieve. I definitely feel like my connection with my cultural community … has dwindled since the pandemic. That was really hard. As a people we’re all about whakawhanaungatanga [connecting] and manaaki [caring for others] … but it’s really difficult … I can’t go [to functions] because I don’t know what people’s vaccination status is … I think I’ve been back to my marae [Māori community space] maybe twice since the pandemic hit … I haven’t been able to go to tangi [funerals] … [and] that’s definitely something you grieve. I definitely feel like my connection with my cultural community … has dwindled since the pandemic. That was really hard. Through what might be deemed new acts of self‐care—proactively protecting oneself—some of the women experienced tensions, sadness and longing for what may constitute former practices of self‐care including their regular exercise, social and cultural activities. These other aspects of their carefully constructed lives were once important for their overall health, providing mental stability or emotional wellbeing, thus highlighting the difficult double‐bind of self‐care for women living with chronic illness during the pandemic. In such examples we highlight some of the ‘tensions and contradictions’ in chronically ill women's understandings and articulations of care during the pandemic (Puig de la Bellacasa  2017 , 5). Puig de la Bellacasa ( 2017 ) insists that it is practice —the hands‐on aspects of care that demonstrate people's everyday commitment to others. The women in our study spoke with great appreciation for the small acts of care from others: ‘the people who do the little things that make a huge difference’ (Brianna). Overall, most practices of care came from people who were within the women's social circles: family members, partners, and in some cases, housemates. In particular, the mothers of the women with chronic illness spoke of the heightened awareness of their own and others acts of care (e.g., cleaning practices, masking, vaccines, respecting personal boundaries), everyday efforts to help minimise risks to their daughters' health and wellbeing. The following comments reveal the high levels of caution (and care) taken during the early stages of the pandemic when knowledge about how the virus travelled was limited: As a parent, as someone who will never stop worrying about [daughter’s] health … I experienced incredible concern about if and when [she] got COVID … it has amplified all of that. I have an awareness about other people’s actions, like masking or not … and that affects how I engage with people, to be perfectly honest … it changes everything. (Amanda) We literally lived that lockdown in a house that smelt like a swimming pool because I bought commercial grade bleach to literally murder every single form of bacteria, virus. We were pretty hardout in terms of keeping surfaces clean. … I wouldn’t come into the house without RAT testing first. … There’s this constant worry about bringing illness home which is never far away from the back of my mind. (Gwenda) As a parent, as someone who will never stop worrying about [daughter’s] health … I experienced incredible concern about if and when [she] got COVID … it has amplified all of that. I have an awareness about other people’s actions, like masking or not … and that affects how I engage with people, to be perfectly honest … it changes everything. We literally lived that lockdown in a house that smelt like a swimming pool because I bought commercial grade bleach to literally murder every single form of bacteria, virus. We were pretty hardout in terms of keeping surfaces clean. … I wouldn’t come into the house without RAT testing first. … There’s this constant worry about bringing illness home which is never far away from the back of my mind. Interestingly, one of the mothers acknowledged such acts of emotional labour as highly gendered: ‘having the pandemic to manage at multiple levels in your own life just adds another layer of responsibility to women who are often carrying many layers of responsibility on top of our jobs and lives as mothers and partners and everything’ (Gwenda). Relentless masking (and regulating others masking), cleaning and restricting access to the home were just some of the many acts of care practiced by the mothers of those with chronic illness. Although the mothers rarely spoke of the impacts on their own health and wellbeing, it became evident later in these interviews that they too felt the emotional weight of responsibility and exhaustion through a sustained process of risk calculation and mitigation over the many months and years of the COVID‐19 pandemic. Others wearing masks, getting vaccinated, and social distancing, were all acknowledged as everyday acts of care. For example, Brianna recalled the steps that her family and friends took in recognition that she was at heightened risk before, during and after the pandemic: My partner is a wildly healthy human … but he got vaccinated immediately because he knew that I didn't want to get COVID. And he has done everything to avoid it … Even when we had COVID in the house the first time, one of our flatties [housemates] got it and he was so good about being like, “let's wear masks inside. Let's get [N]95s from your work. I'll use a separate toilet.” He took extra care. … Yeah, their understanding that it could be really serious for me, those little acts of care are huge. My partner is a wildly healthy human … but he got vaccinated immediately because he knew that I didn't want to get COVID. And he has done everything to avoid it … Even when we had COVID in the house the first time, one of our flatties [housemates] got it and he was so good about being like, “let's wear masks inside. Let's get [N]95s from your work. I'll use a separate toilet.” He took extra care. … Yeah, their understanding that it could be really serious for me, those little acts of care are huge. Another woman acknowledged the everyday acts of care from her children who willingly wore masks to school, even though they were often the only ones doing so: ‘I'm so proud of them, because in their own little ways they're doing that to look after me. And that is a lovely little act of care, that means a lot to me’ (Aisha). Others spoke of their husbands being ‘super supportive … taking over responsibilities, helping and sharing … and just being there for me’ (Clara). Such everyday and enduring acts of care were particularly important as the pandemic wore on, and public discourse shifted away from kindness, with a returning to pre‐pandemic ableism. Yet, there are limitations to being cared for, as it was not always appreciated. Two of the women found their families to be ‘overly protective’ or overzealous in their efforts to minimise risk and protect their health: My problem is my husband. He's not controlling, but he's just over protective. So over protective, he will not let me go anywhere. He's more afraid of it than I am to be honest. (Khawla) My whānau would be very, very cautious in their loving way and always err on the side of caution … there were times when I felt “Oh, you're just being overly cautious. And that's a wee bit annoying”. But for their sake, I fell into line. For example, having groceries delivered and leaving them [outside] for three days before touching them. Yes, that was [the rule of] my son … he was extremely cautious, which is his personality. I was happy to go along with that … I wouldn't want to rock the boat (Jean) My problem is my husband. He's not controlling, but he's just over protective. So over protective, he will not let me go anywhere. He's more afraid of it than I am to be honest. My whānau would be very, very cautious in their loving way and always err on the side of caution … there were times when I felt “Oh, you're just being overly cautious. And that's a wee bit annoying”. But for their sake, I fell into line. For example, having groceries delivered and leaving them [outside] for three days before touching them. Yes, that was [the rule of] my son … he was extremely cautious, which is his personality. I was happy to go along with that … I wouldn't want to rock the boat As Puig de la Bellacasa ( 2012 ) writes, ‘too much caring can be consuming’ (209). Continuing, she acknowledges the gendered dimensions to care as control, as obligation: Women especially know how much care can devour their lives, how it can asphyxiate other possible skills. And care can also smother the subtleties of attention to the different needs of an “other” required for careful relationality. It can be said then that it can also consume the cared for, leading to appropriating the recipients of “our” care instead of relating to them (209). Women especially know how much care can devour their lives, how it can asphyxiate other possible skills. And care can also smother the subtleties of attention to the different needs of an “other” required for careful relationality. It can be said then that it can also consume the cared for, leading to appropriating the recipients of “our” care instead of relating to them (209). Indeed, the women in our study experienced care from their family and friends in a range of ways. In most cases, this was much appreciated, but in some cases others' desires and anxieties were pressed upon them, causing some women—as wives and mothers—to feel a potentially gendered obligation to acquiesce, or ‘just go along with’ receiving the well‐meaning care so as not to cause a fuss or rupture in relations. The women in our study also came to new understandings and appreciations for the everyday acts from people across Aotearoa who were themselves engaging in practices of care by staying home when sick, and/or continuing to wear masks: I felt quite privileged really … I took it very kindly and thought, ‘Oh, that's so nice that someone would be especially concerned about an elderly person … with a chronic condition’. It was really nice to listen on the news when they would say, ‘particularly elderly people stay at home’, and I felt privileged to be looked after specially. (Jean) I think it's made people more courteous … mask wearing if you're sick so that you're not making other people sick. Hopefully there's positive long‐term spin from that, especially for the vulnerable communities because [we'd] not really been thought about prior to this. (Shelley) I felt quite privileged really … I took it very kindly and thought, ‘Oh, that's so nice that someone would be especially concerned about an elderly person … with a chronic condition’. It was really nice to listen on the news when they would say, ‘particularly elderly people stay at home’, and I felt privileged to be looked after specially. I think it's made people more courteous … mask wearing if you're sick so that you're not making other people sick. Hopefully there's positive long‐term spin from that, especially for the vulnerable communities because [we'd] not really been thought about prior to this. Originating within the intentionality of each individual, a commitment emerges, and the act of care becomes understood as ‘intimately entangled in the ongoing material remaking of the world’, providing the receiver with hope (Puig de la Bellacasa  2017 , 31). Indeed, during the early stages of the pandemic, when the government campaign encouraged New Zealanders to see themselves as part of a ‘team of five million’ and consider the most vulnerable, some of the women experienced feelings of gratitude, as well as hope for a society that demonstrated empathy, understanding and care for others. Importantly, the women in this study were not only concerned about their own health and wellbeing, but also demonstrated care for others, including their families and wider communities. For example, Jean, a retired nurse, recalls: An elderly lady and her husband, I used to go and sit with in the evenings. And then when COVID hit, I wasn't able to do that. And I had to withdraw my care, which meant she had to go into a rest home full time. And since that happened, I have had numerous visits and phone calls with them … and a really lovely relationship has grown, now I'm a friend. An elderly lady and her husband, I used to go and sit with in the evenings. And then when COVID hit, I wasn't able to do that. And I had to withdraw my care, which meant she had to go into a rest home full time. And since that happened, I have had numerous visits and phone calls with them … and a really lovely relationship has grown, now I'm a friend. In this comment, Jean talks with satisfaction about how she has navigated boundaries, turning a once formal care work arrangement into a more informal relational act of care. In so doing, she highlights the ways caring relationships are multi‐spatial and multi‐directional—from and to others—and can evolve over time. Other women spoke of their care and compassion for others, and how this shaped their own practices, thoughts and considerations: My biggest thing is really worrying about other people who are vulnerable. My biggest fear was what if I get it and I give it to somebody … I'll feel really bad. (Clara) It was quite hard to see the changes in everyone. I think I’m quite an empathetic person so seeing other people being affected definitely makes it harder on me. (Aroha) My biggest thing is really worrying about other people who are vulnerable. My biggest fear was what if I get it and I give it to somebody … I'll feel really bad. It was quite hard to see the changes in everyone. I think I’m quite an empathetic person so seeing other people being affected definitely makes it harder on me. As these comments highlight, women living with chronic illness during the pandemic became highly aware of the affective, embodied and relational dimensions of care both for themselves and others. Care is both multi‐spatial and multi‐directional, but as we demonstrate in the following section, it is not always reciprocal. For women with chronic illness, care is a ’complex life sustaining web’ that made pandemic ‘living better in interdependence’ (Tronto  1993 , 103). But, as Puig de la Bellacasa ( 2017 ) acknowledged in a pre‐COVID context, too often, acts of care are ‘considered petty and unimportant, unproductive, however vital they are for liveable relations’ (55). The women in our study spoke of the emotional and affective impacts of those who did not demonstrate care or were dismissive of their approaches to care. Each of the women in our study described challenging conversations with family members, friends and/or colleagues in which they were accused of being ‘over the top’, particularly taking COVID‐19 and the associated risks too seriously. Through such interactions, many of the women came to feel deeply misunderstood, embarrassed and even ostracised for caring too much for their own and others' health. Many of the women interpreted such responses (accusations of being ‘over the top’) as lacking empathy and acts of uncaring: The onus, and the ostracisation is happening to people who are already in those positions, like sick people, disabled people, people who have a lot to lose. But then it's like, ‘oh you’re being ridiculous, you’re being over the top’, or people roll their eyes and move along. It's all that invisible stuff. (Brianna) The onus, and the ostracisation is happening to people who are already in those positions, like sick people, disabled people, people who have a lot to lose. But then it's like, ‘oh you’re being ridiculous, you’re being over the top’, or people roll their eyes and move along. It's all that invisible stuff. Here Brianna is referring to the ableism (the ‘invisible stuff’) that she and others found rampant across Aotearoa society, particularly in the latter stages of the pandemic. The following comments reveal how prevalent the accusations of being ‘over the top’ (or ‘OTT’—common slang in Aotearoa) were among the women: It's extremely exhausting … you’re trying to follow the rules and do all the things right, then come up against someone who is so blase about it, or that thinks you're being a bit OTT. (Clara) I get the whole, ‘you’re just being over the top’, ‘you’re just being OTT’. People keep wanting me to go out with them and I can see people getting frustrated and worried that I’m not leaving. People keep saying to me, don’t worry about it. (Hahana) Some people saw our protocols and thought I was way over the top. I got some of that feedback from some of my wider whānau. But the thing is when you’ve got a chronically ill whānau member you just can’t afford to take the risk. (Gwenda) It's extremely exhausting … you’re trying to follow the rules and do all the things right, then come up against someone who is so blase about it, or that thinks you're being a bit OTT. I get the whole, ‘you’re just being over the top’, ‘you’re just being OTT’. People keep wanting me to go out with them and I can see people getting frustrated and worried that I’m not leaving. People keep saying to me, don’t worry about it. Some people saw our protocols and thought I was way over the top. I got some of that feedback from some of my wider whānau. But the thing is when you’ve got a chronically ill whānau member you just can’t afford to take the risk. Importantly, the frequent dismissal of women's everyday acts of care for self and others as being ‘over the top’ is a highly gendered response, an accusation directed more to women who demonstrate strong emotions, opinions or perspectives. Although some might suggest that such comments are made in jest without intent to cause harm, we argue that stating a chronically ill woman is being ‘over the top’ in her efforts to manage risk to self and others, is far from passive. Such utterances effectively minimise women's experiences and can work to prompt self‐doubt and questioning of logic in their own carefully considered decisions and actions. Despite the power of such statements, these women refused to embody their affects, as demonstrated by their many protective measures and practices of self‐care, demonstrating explicit agency. Many also actively resisted by speaking back to ableist assumptions, advocating for their right to make their own decisions as to how best to live with a chronic illness in pandemic times. As Hahana asserts, ‘I'm allowed to make those choices for myself!’. Many of the women described experiencing an array of practices where family, friends and/or strangers appeared to demonstrate a ‘lack of care’ for others, which surfaced a range of affects including fear, frustration, anger and disappointment. As the following comments from Brianna highlight, such interactions were upsetting and unsettling: The interactions you have with people in the supermarket, people you teach or see at work … it really calls into question some of their empathy and collectivism … But for lots of people they just don’t care. Unfortunately, for me, it has kind of become, ‘oh, how much do I want to interact with you if you can't value other people’s lives?’ I felt pretty let down by people I didn't expect to be let down by … The interactions you have with people in the supermarket, people you teach or see at work … it really calls into question some of their empathy and collectivism … But for lots of people they just don’t care. Unfortunately, for me, it has kind of become, ‘oh, how much do I want to interact with you if you can't value other people’s lives?’ I felt pretty let down by people I didn't expect to be let down by … Beyond apathy, other women spoke of the frustration, anger and upset caused particularly by those in their families and wider community who were actively outspoken against mask wearing, angry about vaccine mandates and defiantly refusing to follow governmental rules and everyday ethical practices of care: I have been frustrated about people not feeling they have a responsibility to other people. … It impacted relationships because some people I knew would not get vaccinated and I felt at risk. Our Christmas plans had to be altered to actively avoid seeing those people. Although I try not to be judgey, it was very hard or next to impossible to not take it personally … their decision was personal to me. (Powm) I have been frustrated about people not feeling they have a responsibility to other people. … It impacted relationships because some people I knew would not get vaccinated and I felt at risk. Our Christmas plans had to be altered to actively avoid seeing those people. Although I try not to be judgey, it was very hard or next to impossible to not take it personally … their decision was personal to me. Individual actions by family, friends and others in the community not to mask, or vaccinate, or respect regulations put in place to protect the most vulnerable, were felt by the women in our study as a form of symbolic violence, affecting them deeply and surfacing new affective, embodied and material relations with others. International research studies have shown the impact of policy responses to COVID‐19 on disabled people, particularly the focus on individual vulnerability which was used as ‘justification for removing or restricting rights’ (Mladenov and Brennan  2021 , 2049). In many contexts, COVID‐19 policies (either from the outset or eventually) placed the responsibility on, or requirement of, people with disabilities or chronic illnesses to self‐isolate for prolonged periods of time, often without the medical and social support needed. The women in our study all understood the challenges posed by extended lockdown and social restrictions on others' health and wellbeing, including economic impacts, increased mental health, and children's schooling disruptions. Yet, some of the women in our study (i.e., Aisha, Amanda, Brianna, Clara, Gwenda and Hahana) spoke about the frustration and disappointment they felt as the government shifted its protectionist policies by removing masking requirements, vaccine mandates, location tracing and eventually not requiring COVID‐19 positive people to stay‐at‐home, despite conflicting advice from the country's top researchers in microbiology, epidemiology and mathematical and statistical modelling (Baker et al.  2023 ). For these women, it was often the process of change that was most upsetting, including the lack of communication and the rapid social amnesia of the everyday practices of care (i.e., masking) that had briefly become normalised, and had been highly important and appreciated by those living with chronic illness. Describing this shift, one participant explained, “There's no public messaging, there's no conversation. Now it's a free‐for‐all. Everyone can just make up their own minds about what they want to do” (Gwenda). The women's perceptions of risk, and experiences of care, changed considerably alongside shifting policy and public discourse, prompting some to feel forgotten, overlooked and unvalued. In particular, the radical change in governmental approach and public sentiment left some of the women feeling disillusioned, with hope for a more compassionate and caring society dashed: Initially, it was very much ‘we're gonna protect everyone’. Then it became, ‘let's just let it go’. I can understand why maybe that happened, but it was like, wow, that was a quick turnaround … people's mindsets were like, ‘Oh, we're gonna protect everyone’. And then, well, ‘who cares’ … (Brianna) Initially, it was very much ‘we're gonna protect everyone’. Then it became, ‘let's just let it go’. I can understand why maybe that happened, but it was like, wow, that was a quick turnaround … people's mindsets were like, ‘Oh, we're gonna protect everyone’. And then, well, ‘who cares’ … For some of the chronically ill women (including Aisha, Brianna and Hahana), the changes in governmental risk management surfaced complex feelings and reflections on how their lives are (not) seen and (not) valued in society: I’ve worked out that because I’m disabled, that has dropped the value of my life and that’s really hard to come to terms with. I don’t think anyone actually looks after the vulnerable community properly. Why, because of capitalism, we don’t bring enough money to the pot … they see us as draining the money, not adding to it. (Hahana) I’ve worked out that because I’m disabled, that has dropped the value of my life and that’s really hard to come to terms with. I don’t think anyone actually looks after the vulnerable community properly. Why, because of capitalism, we don’t bring enough money to the pot … they see us as draining the money, not adding to it. Here Hahana's comments reflect a key sentiment in The Care Manifesto (The Care Collective et al.  2020 ) that ‘the inherently careless practice of “growing” the economy has taken priority over ensuring the well‐being of citizens’ (8). Through their embodied, affective pandemic experiences, some of the women (particularly strongly expressed by Aisha, Amanda, Brianna, Charlie, Hanana, Gwenda and Powm) came to identify wider systemic inequities and injustices, including the rampant and insidious effects of ableism and capitalism: So many were like, ‘well, then you should get vaccinated and you should stay home’ … the old people and the disabled people should just stay home. And it's like, well, it's not actually how that works! (Brianna) Just as this thing rolls on and people who are well and healthy shed their masks and step into their communities feeling free, there’s a whole conversation missing around how we care for people in our community who continue to be vulnerable. … There’s just been a deathly silence around how we as a community continue to care for those of our whānau who are still at massive risk. (Gwenda) So many were like, ‘well, then you should get vaccinated and you should stay home’ … the old people and the disabled people should just stay home. And it's like, well, it's not actually how that works! Just as this thing rolls on and people who are well and healthy shed their masks and step into their communities feeling free, there’s a whole conversation missing around how we care for people in our community who continue to be vulnerable. … There’s just been a deathly silence around how we as a community continue to care for those of our whānau who are still at massive risk. In a context of changing governmental policies and with the majority of able‐bodied people setting about ‘living with the virus’, women living with chronic illness in Aotearoa often felt marginalised, forgotten and even resented by those who argued adamantly against protectionist approaches (A Thousand Cuts 2024). Yet some of the women in our study (i.e., Aisha, Amanda, Brianna, Gwenda and Hahana) were unapologetic in their efforts to continue protecting themselves and the most vulnerable, even when most of society had ‘moved on’ from thinking about the risks of COVID‐19 for themselves or others: I walked into a café this morning, was literally the only person wearing a mask and looked at the person I was meeting and said, “Do you not mask anymore?” She said, “Well, you know, everyone’s kind of doing their own thing.” I said, “So, all of the sick people in our community no longer deserve our protection?” This woman’s a local leader. She said, “Oh, my friend, are you telling me off?” I said, “Yes, I am. You need to do better.” (Gwenda) I walked into a café this morning, was literally the only person wearing a mask and looked at the person I was meeting and said, “Do you not mask anymore?” She said, “Well, you know, everyone’s kind of doing their own thing.” I said, “So, all of the sick people in our community no longer deserve our protection?” This woman’s a local leader. She said, “Oh, my friend, are you telling me off?” I said, “Yes, I am. You need to do better.” Indeed, there is a politic in the women's everyday acts of care for themselves and others. To continue caring for oneself in a system that does not care about you and regularly dismisses your experiences, is an act of agency. But fighting for your rights to exist and to make your own decisions that run against social norms can be exhausting: Most of us are sick so it’s really hard to keep fighting for ourselves when we can barely get out of bed some days. This is why the Ministry for Disabled People is really important because we need to have a better voice. We don’t need able bodied people speaking for us, but we need them to do the legwork so then all we have to do is speak. (Hahana) Most of us are sick so it’s really hard to keep fighting for ourselves when we can barely get out of bed some days. This is why the Ministry for Disabled People is really important because we need to have a better voice. We don’t need able bodied people speaking for us, but we need them to do the legwork so then all we have to do is speak. For those living with chronic illness, the ethico‐political actions of able‐bodied others, as well as support from health and disability organisations make up an important form of care, enabling agency and creating space for the voices of those who are rarely heard. As Puig de la Bellacasa ( 2017 ) states, a politics of care ‘engages much more than a moral stance; it involves affective, ethical, and hands‐on agencies of practical and material consequence’ (4). From able‐bodied family members encouraging friends and colleagues to continue masking, to governmental agencies pushing against the turning tide for policies that continue to protect those living with disability and chronic illness, the women in our study were deeply affected by others' politics, practices and performances of care (or lack thereof).

For critical scholars of health and illness, Puig de la Bellacasa's ( 2017 ) Matters of Care offer a new epistemological approach to knowing through and with care, and indeed for practicing care differently in our research study and everyday lives. Engaging with Puig de la Bellacasa's ( 2017 ) ethico‐political and epistemological dimensions of care, we came to understand care as an embodied act of doing shaped by many factors (i.e., need, empathy, capacity to give and cultural values) across spaces (i.e., the individual body, family and community groups, in the home, workplace, policy and media). Care is not just an individual act from a mother, friend, researcher or doctor. Matters of care call for new ways of knowing care as more‐than‐human practices across time and space, shaped significantly by context, culture and situated knowledges. During the COVID‐19 pandemic, the women living with chronic illness in our study came to know, think about and feel care differently. Small acts of care (e.g., others wearing a mask) became hugely important in how these women felt seen, valued and respected. Care was multidimensional, operating across space, time and action, from everyday acts of self‐care or care work from family and friends, to governmental policies designed (initially) to protect the more vulnerable. For some women living with chronic illness, historical practices of care (or lack thereof) as shaped by systems of colonisation and patriarchy negatively impacted their trust in the contemporary health system to care for them, and thus their personal investment in individualised responses to risk and practices of self‐care. As Puig de la Bellacasa ( 2017 ) writes, ‘Care is a force distributed across a multiplicity of agencies and materials and supports our worlds as a thick mesh of relational obligation’ (20). Whether this mesh is degraded by an inadequately resourced system, or discriminatory policies or practices, such agencies would do well to truly question if they are indeed providing services of health care that they so often purport. Importantly, for some women, the injustices and inequities of care—both in the past, present and future—were felt powerfully in and through the body as forms of physical, social, cultural and/or symbolic violence. As previous research studies have shown, even well‐intentioned health policies and practices designed to ‘care’ for the ill and unwell can be neglectful or harmful if entrenched in Western and/or colonial ways of knowing and doing that do not respect people's cultural knowledge systems (Stevenson  2015 ). Our research study extends upon the writing Puig de la Bellacasa ( 2017 ) in acknowledging the importance of different cultural ways of knowing, enacting and responding to care (and its different forms), and the need for more intersectional approaches to understanding the practice and politic of care. Although care is ambiguous, affective and multi‐spatial (from the body to governmental policy), chronically ill women's understandings and experiences of care are powerfully shaped (in highly varied ways) by intersecting systems of oppression, marginalisation and discrimination. Our research with 13 women impacted by chronic illness, and our theorising of care during the pandemic, suggests that health policy and medical practice would do well to be informed by more multi‐dimensional understandings of care, and particularly greater recognition for how gender, ethnicity and disability intersect to affect the care needs (and knowledge) of women living with chronic illness in varied ways. Furthermore, while the women in our study understood the need for social policies that prioritised the health and wellbeing of the majority, they greatly appreciated those who continued to demonstrate empathy and consideration for those who were still highly vulnerable to the risks of COVID‐19. Small acts of care (e.g., wearing a mask, respecting personal boundaries) meant a lot to this group of women, and are an important reminder that our everyday actions can contribute to a more (or less) caring world for those living with chronic illness. In sum, the embodied, affective, relational and multi‐spatial accounts of care from women living with chronic illness during COVID‐19 highlight the need for care‐based approaches that centre the voices and needs of the most vulnerable in our research study, as well as our health policies and practices, and our societies, before, during and beyond pandemic times. Indeed, there is a powerful feminist politic in creating space for chronically ill women to articulate the multiplicities of care, and its felt absence, in their own words.

Various scholars have focused on the pandemic experiences of people living with disability, including their access to health support, how they were treated under different national policies and governmental responses, and the impacts of forced or self‐imposed lockdowns on their physical and mental health (e.g., Goggin and Ellis  2020 ; Sabatello et al.  2020 ). Such research studies highlight the ‘unique disadvantages people with disabilities experience in health care and community living’ that placed them at ‘greater risk for disparate COVID‐19 outcomes’, as well as the disproportionate financial, emotional and health burden they bore during the pandemic (Sabatello et al.  2020 , 187). Working at the ‘frictional’ intersection between medical sociology and critical disability studies, Goodley et al. ( 2023 ) identified three key themes impacting the emotional lives of disabled people during the pandemic: fragility, anxiety and affirmation. The study highlights the heightened affective and ‘differential impacts of disablism and ableism on the lives of disabled people’ at the time (Goodley et al.  2023 , 1200). A few studies in Aotearoa also focus on the experiences of those living with disabilities (Trnka and Muir  2022 ; Orakani et al.  2024 ; Perry et al.  2023 ). Even though governmental policies in Aotearoa (initially) prioritised the health of the most vulnerable, researchers highlight the negative impacts on disabled peoples’ mental health and wellbeing during this period (Trnka and Muir  2022 ), as well as their challenges in accessing adequate health services (Orakani et al.  2024 ). To date, only a small number of qualitative studies have examined the experiences of those living with chronic illness during the pandemic (Lupton and Lewis  2022 ; Manderson and Wahlberg  2020 ). Key findings include the varied ways people with chronic health conditions and labelled ‘at risk’ or ‘vulnerable’ during COVID‐19 made meaning of and responded to risk, and their experiences of fear, vulnerability and resilience during periods of self‐isolation. A few studies focused on the care work of parents for children with chronic illness (e.g., Gallegos et al.  2022 ), with others examining the self‐care of elderly patients with multiple chronic illnesses and/or their caregivers (mostly their adult children) (De Maria et al.  2022 ). Lupton and Lewis ( 2022 , 1), examined Australians living with a medical condition during the early stages of the pandemic, revealing the ‘vital contributions of lay care and self‐care as part of the materialities of care, health and wellbeing’, and the important roles played by ‘social networks, both online and in‐person’ in helping participants learn about and respond to the potential risks of COVID‐19. Of the small body of sociological research studies on those living with chronic illness during the pandemic, much has focused on the early stages of the outbreak (particularly during lockdowns) and less on the longer‐term experiences over years and during the different phases of COVID‐19. Furthermore, none of these research studies have focused specifically on women's experiences of living with chronic illness during the pandemic. In this paper, we highlight the gendered experiences of women living with chronic illness, and their relational ethics and practices of care during the pandemic. For almost 4 decades, various disciplinary and methodological approaches have sought to understand the complexities of care, including nursing studies, sociologies of medicine, health and illness, critical geographies, and ethics and philosophy, as well as political thought. Across such work, it becomes evident that caring ‘implicates different relationalities, issues, and practices in different settings’ (Puig de la Bellacasa  2017 , 3). In particular, feminist scholars have dedicated considerable attention to the gendered dimensions of care, and the often‐invisible emotional labour, or care work, performed by women both in their families and in paid work. As the authors of The Care Manifesto state, ‘care has long been devalued, in large part, to its association with women, the feminine and what have been seen as the “unproductive” caring professions’ (Chatzidakis et al.  2020 , 3). A strong strand of feminist scholarship during the pandemic examined the inequitable gendered labour and care work carried by women in the workplace, home and families, and wider communities, as well as the economic, emotional and physical impacts of (often invisible and undervalued) care practices (Alldridge et al.  2021 ). Adopting intersectional approaches, feminist scholars also reveal how the pandemic political economy of care further disadvantaged ethnic and racial minority women (including migrant women) (Lokot and Bhatia  2020 ). With the pandemic exacerbating the inequities of the ‘care crisis’, some feminist scholars have called for greater consideration of ‘the implications of current policy responses to COVID‐19 (and beyond) through a care lens’ (Camilletti and Nesbitt‐Ahmed 2022, 195; Dowling  2022 ). Before, during and beyond the pandemic, feminist scholars understand care as an ethico‐political practice, shaped by power, inequalities and injustice, and always with material and embodied effects. In this paper we take particular inspiration from Puig de la Bellacasa's ( 2017 ) writings on the multidimensional, embodied, affective and relational aspects of care. According to Puig de la Bellacasa ( 2017 ), the three key dimensions of care—labour/work, affect/affections, ethics/politics—are ‘not necessarily equally distributed in all relational situations, nor do they sit together without tensions and contradictions, but they are held together and sometimes challenge each other in the idea of care’ (5). Such understandings of care are well aligned with women living with chronic illness during the pandemic, for whom care includes an array of practices from the everyday small acts of self‐care, or those of family and friends, to governmental policies. The women in our study also experienced inconsistencies, contradictions, change and tensions in how care was represented, performed, enacted, dismissed or rejected. As Puig de la Bellacasa ( 2017 ) explains, it is important to consider the multiplicities and fluidity in how care is practiced, seen, felt and lived: Keeping the tensions between care as maintenance doings and work, affective engagement, and ethico‐political involvement—opens a terrain for exploring, in situation, the subtle thought of care, by reading these dimensions through each other (6). Keeping the tensions between care as maintenance doings and work, affective engagement, and ethico‐political involvement—opens a terrain for exploring, in situation, the subtle thought of care, by reading these dimensions through each other (6). In our project, we similarly recognise care as integral to ‘the everyday fabric of troubled worlds’, and with Puig de la Bellacasa ( 2017 ), ‘resist categorising care’, opting not to ‘pin down care to one of its ontological dimensions—affective, practical, ethico‐political’, but rather set out to ‘embrace its ambivalent character’ (11). In the remainder of this paper, we engage such feminist understandings of care—as relational, embodied, gendered, affective, ethical, cultural and multi‐spatial—to examine the practices of care experienced by women living with chronic illness' during the COVID‐19 pandemic.

The COVID‐19 pandemic has had devastating effects on health and mortality, touching every aspect of human wellbeing. For people living with chronic illness or a weakened immune system, the pandemic increased risk of complications (hospitalisation, admission to intensive care and death) from infection with COVID‐19. This was a time when they were considered as society's ‘most vulnerable’, forcing many to isolate, often for long periods of time, to avoid or minimise risk of infection. In this paper, we draw upon interviews with 13 women living with (their own or others) chronic illness to understand their experiences of risk, vulnerability and care during the pandemic in Aotearoa New Zealand (Aotearoa hereafter). Drawing upon feminist understandings of care as multi‐spatial, embodied, affective, relational and material, we reveal their unique and multilayered understandings of care—from self, family, friends, strangers, and public health systems—as well as how care (and its felt absence) materialised differently as policies and public discourse shifted away from protecting the most vulnerable to ‘living with the virus’. Underpinned by a feminist ethic of care, this paper amplifies the lived experiences of chronically ill women, reconsiders what we might have (un)learnt about care during the pandemic and calls for care‐based approaches as a way forward for future crises.

Responding to the first domestic cases of COVID‐19 in March 2020, the government in Aotearoa issued a national ‘lockdown’ for at least 4 weeks. The borders were closed indefinitely except for returning national citizens. The government adopted a science‐informed approach and a strong communication campaign, and as a result, was temporarily successful in its elimination strategy. Then in mid‐late 2021, the arrival of the Delta, and then Omicron, variants prompted additional national and regional lockdowns (i.e., 107 days in Auckland; 65 days in the Waikato) to control outbreaks, limit spread and allow time for a nationwide vaccination programme to come into effect. During the early stages of the pandemic, Prime Minister Jacinda Ardern received international praise for encouraging the prioritisation of kindness and consideration of the most vulnerable in society (i.e., elderly, disabled) (Craig  2021 ). The government utilised the traditional Māori saying, ‘he waka eke noa’ (we are all in this together) (Watene  2020 ), and nationalistic discourse (‘team of five million’) to encourage citizens to reflect on their roles and responsibilities amidst the shared experience of pandemic life (Beattie and Priestley  2021 ). Yet, many disagreed with the government approach, with some groups vehemently opposed to vaccine mandates, attending marches across the country and violent protests at Parliament House. By 2022, Aotearoa was reopening borders, removing vaccine mandates, and largely putting the responsibility back on citizens to navigate the risks individually. Despite many calls from some researchers, health organisations, and the disability community to maintain policies that prioritised the most vulnerable, eventually, economic arguments and shifting public sentiment took hold, leaving many individuals and families living with disability and/or chronic illness to navigate risk on their own.