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Abstract

The COVID-19 pandemic was a time of significant crisis for most Canadians. For those living with chronic pain, it was a disproportionately challenging time. There have been calls for researchers to address the experiences of chronic pain during the time of pandemic, including for those who also struggle with systemic and structural marginalization. The purpose of this study was to highlight the experiences of people living with chronic pain and poverty during the pandemic. Guided by tenets of institutional ethnography, we highlight how the pandemic was often experienced as a source of temporary relief from pre-existing struggles and constituted an additional and unexceptional struggle. We also highlight how people drew on learned resourcefulness during this time, which can be understood as perseverance. Our findings indicate that the knowledge and experience gained from living with pre-existing, ongoing struggles contradicted pandemic narratives of crisis, adding nuance to the variability of experience. This calls attention to how the constructed nature of crisis may not align with the daily realities of those facing social inequities. We conclude that greater attention is needed on the social aspects that define people’s lives, necessitating a role for critical social science within the chronic pain field.

Keywords

chronic pain marginalization poverty pandemic COVID-19

Introduction

The COVID-19 pandemic was a “global health crisis” (Mallah et al., 2021; Pollard et al., 2020) that created extraordinary challenges, uncertainties, and fears for most Canadians. In Canada, people were confronted with pandemic-related crises pertaining to mental health (Miller, 2022), unemployment (King, 2020), financial wellbeing (Donaldson et al., 2021), housing (Christensen, 2020), racism (Gill, 2020), and opioid-related harms (Maier & Hume, 2021). During this time, the Government of Canada maintained that they were working with “public health and medical professionals” as a means “to protect the health and safety of all Canadians” (Government of Canada, 2020b). This entailed public education, surveillance and testing, personal protective equipment (Government of Canada, 2020b), border closures, quarantine initiatives, and closures of non-essential public and private businesses and organizations (Canadian Public Health Association, 2021). Indeed, many countries came to rely on public health and medical experts in their pandemic response teams (Boin et al., 2020).

The pandemic laid bare the socioeconomic inequities underlying our health and social systems (Tulenko & Vervoort, 2020; Willis et al., 2021), and it has been argued that responses to the pandemic further exacerbated these inequities (Venkatapuram, 2020). Furthermore, pandemic-related risks and experiences were not shared equally. Responses affected people in gendered, racialized, and classed ways and were (and continue to be) deeply rooted in inequitable economic and political systems (Bryant et al., 2020; Sidik, 2022; Webster et al., 2020) through which marginalization – a social process of systemic and structural oppression that situates people/groups in positions of unimportance, disenfranchisement, and exclusion (Young, 1990) – is sustained. Indeed, the risks of contracting COVID-19 were (and remain) higher among systemically and structurally marginalized groups (Gray et al., 2020; McGowan & Bambra, 2022), including people struggling with poverty (Nolan, 2021; Whitehead et al., 2020) and living with pre-existing health conditions, such as chronic pain (Puntillo et al., 2020).

The International Association for the Study of Pain (IASP) defines chronic pain as an “unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage” that persists for longer than three months (WHO, 2020). People living with chronic pain during the time of pandemic faced “additional layers of complexity to their daily lives” (Amja et al., 2021), including increased risks of severe COVID-19 complications (Puntillo et al., 2020), restrictions to accessing medical care, pain medications, or alternative therapies (Amja et al., 2021; Balestra et al., 2022; Dassieu et al., 2021; Hruschak et al., 2020; Lynch et al., 2020; Mohamed Ali et al., 2022; Mun et al., 2021), loneliness (Karos et al., 2020), and isolation (Amja et al., 2021). To be sure, experiences during the pandemic were not always negative. Some people with chronic pain felt (more) capable of adapting to the challenges of the pandemic (Balestra et al., 2022) and/or found their situations improve, whereby the societal “slowdown” that defined pandemic responses actually allowed for increased time to dedicate to self-management and relaxation which in effect positively impacted chronic pain experiences (Dassieu et al., 2021, p. 8). However, the pandemic had a negative impact on living with – and managing – chronic pain due to reduced physical activity and increased stress, anxiety, and uncertainty (Manchikanti et al., 2021). As highlighted in a recent study by Romeiser et al. (2023), moderate to severe symptoms from COVID-19 infection “may be a new significant risk factor for chronic pain” (p. 10). For people living with chronic pain who were also subjected to marginalization, the pandemic-related challenges occurred in contexts that were already defined by struggle.

Socially marginalized populations bear a disproportionate burden of chronic pain (Hooper et al., 2020; Hruschak et al., 2020; Janevic et al., 2017; Mills et al., 2019; Mun et al., 2021; Wallace et al., 2021). In their work on chronic pain experiences among people living with marginalization, Webster and colleagues (2023) offer a new concept of chronic struggle “to capture how pain, illness, economic deprivation, and suffering constitute a knot of experience that people living with chronic pain are obliged to simplify in order to fit existing logics of medicine” (p. 437). Thus, they highlight ineffective health systems, standpoint, and the violence and harm stemming from systemic and social discrimination, stigma, and dismissal, whereby “the challenges in one aspect of their [peoples’] lives cannot be separated from challenges in another” (p. 445).

Utilizing key tenets of the sociological approach of institutional ethnography (hereafter referred to as IE) (Smith, 2005, 2006) within contexts of chronic pain and poverty during the pandemic, we illuminate how the already existing struggles in people’s lives contradicted dominant pandemic narratives of crisis. By beginning in the standpoint (i.e., one’s “empirical location” (Rankin, 2017a, p. 2)) of people living with chronic pain and marginalization, we were made aware of how pre-existing social struggles often took precedence during times of significant societal turbulence in ways that unsettle notions of “crisis” in diverse, unexpected, and competing ways. Here, social aspects informed experiences of chronic pain in a way that makes visible “problems of knowing—being told one thing, but in fact knowing otherwise on the basis of personal experience” (Smith, 1995, p. 21, cited in Rankin, 2017b, p. 3).

Methodology

This manuscript is affiliated with a series of studies known as COPE II, conducted from 2019 onwards, and which stands for chronic pain ethnography. Grounded in IE, the COPE II studies constitute a large research program that focuses on the experiences of living with chronic pain among people who struggle to make ends meet (for further information and findings, see Connoy et al., 2024; Rice et al., 2024; Webster et al., 2023). This study drew on key tenets of the sociological approach of IE – a method of inquiry which begins in people’s standpoint to explore how knowledge and experience are socially coordinated with the work of others (Smith, 2002a, 2005, 2006). A key component of IE entails describing what people specifically do as they go about their daily lives (Smith, 2005). These doings are referred to as “work” (Smith, 2005) – a concept that is attentive to identifying the time, effort, and expertise involved in daily tasks. We approach participants as “standpoint informants” who have deep knowledge of the work they do and of many of the institutional practices that organize their experiences (Rankin, 2017a). Here, institution can be understood as “complexes of organizations and discourses that are focused on functions such as education, science, law, health care, government, corporate profitability, and so on” (Smith, 2005, p. 68). The organization of experience, for example, can include what people know about the time and effort associated with work, or how they experience their everyday life. The situated knowledges that people share are expanded upon to examine how they are constructed and how such constructions may in fact work against the wellbeing and interests of people (Rankin, 2017a). This organization of knowledge and experience is rooted in texts, where the organizing power of language – in our case, the exceptionality of the crisis of the pandemic – is discoverable in everyday thoughts, ideas, and local activities which shape how the world is seen (Smith, 2005). It is this element of IE that is the general focus of this study.

As an IE study, we also looked for disjunctures or contradictions between how things are officially thought to work or happen and how they actually work or happen (Smith, 1987, 2002b). In our study, the disjuncture between what is generally considered shared experience and what actually happens in practice for those who live with poverty and chronic pain during the pandemic was noted in the stories shared with us by participants. This contradiction in experience reflects how authoritative discourses of shared vulnerability sit uncomfortably with actual experiences of the pandemic in ways that can render them invisible. Here, institutional discourses “enter into” dialogue in ways that can “displace descriptions based in experience” (Smith, 2005, p. 155). IE is a direct response to “mainstream sociology” which, through its reliance on abstract theoretical frameworks, determines how the everyday should be understood in ways that can render invisible the actualities of everyday life (Smith, 2005). As it pertains to our study, an IE lens allows us to bring forth experiences of the COVID-19 pandemic as known and experienced by people living with chronic pain and poverty.

In addition to IE, we were inspired by the concept of “chronic struggle” which centres upon social and structural inequities within contexts of chronic pain and marginalization; the concept highlights “chronic pain as one additional difficulty in a life that is always already defined by health and social complexities” (Webster et al., 2023, p. 445). As argued by Webster et al. (2023), chronic struggle “provides the conceptual space to explicate the enormous work involved in managing lives beset by chronic pain, mental illnesses, trauma, addictions and/or poverty within systems that regularly de-legitimize or stigmatize them” (p. 445). In our effort to explicate experiences of chronic pain and marginalization during the time of pandemic, the concept foregrounds how pre-existing struggles inform experience.

Methods

IE makes use of various qualitative methods, but due to pandemic restrictions we relied largely upon telephone interviews. Throughout the interviews, we focused on people’s everyday experiences of negotiating pandemic and pre-pandemic life, and the work that goes into living with chronic pain and marginalization. Our topics ranged from housing, access to food and medication, and experiences of living with chronic pain before and during the pandemic. Upon receiving Research Ethics Board approval through the University of Western Ontario (project ID #115867), we undertook a purposeful recruitment of people living in Canada who were over the age of 18 years, spoke fluent English, identified as living with chronic pain, and considered themselves as facing economic hardship, which we phrased as “struggling to make ends meet.” Recruitment occurred online (i.e., Twitter [now X] and Kijiji) (see Wasilewski et al., 2019), through the websites of existing patient-led and patient support partner groups, and within the clinic of a co-investigator via posters and postcards.

Even with these efforts, we experienced challenges with participant recruitment as a small number responded to our recruitment calls. We interviewed eight participants in total between June 2020 and November 2021,¹ with each interview lasting approximately 60–90 minutes. To elaborate on specific experiences that they spoke about in the first interview, we conducted follow-up interviews. We were also interested in knowing how their lives – and living with chronic pain – had evolved. We contacted all participants in May 2023 for these follow-up interviews. Three participants responded and were interviewed via Zoom in June 2023. All participants provided verbal informed consent prior to each interview by LC. Participants resided in the provinces of Ontario, Saskatchewan, and British Columbia (B.C.).

Our approach was not based on saturation but data sufficiency, which is “demonstrated by the documentation of carefully planned and conducted research, including appropriate and adequate participant selection, quality dialogue (in the case of interviews), […], reflexivity, and other methodologically appropriate indicators of rigor” (King, 2021, p. 719). Data sufficiency was determined by the richness of data as it pertains to living with chronic pain during the time of pandemic rather than the number of interviews. Our team analysis meetings included discussions of whether or not we had sufficient data upon which to conduct analysis and offer insights into participant experiences. Our multi-disciplinary team also remained aware of the importance of group dialogue to ensure the representation of multiple voices (i.e., interpretations and perspectives) (Finlay, 2002, p. 219).

All interviews were audio recorded. The interviews were transcribed by a professional transcriber and the deidentified transcripts were uploaded to NVivo, a computer-assisted qualitative data management tool. Transcripts were discussed in ongoing virtual meetings between LC and principal investigator FW, plus with the whole team; FW had previously provided training to the team on IE analysis. Insights gained from these discussions assisted us with manually indexing the data in NVivo to capture aspects of the interview data that were relevant to the research problematic.

Indexing is an analytical strategy that is similar to coding, yet it organizes the data in ways that are oriented to materiality (as a means to avoid abstraction) and to how activities and/or experiences are organized – in other words, the intention is to keep the institution in view and describe what people do and know (Rankin, 2017b). Here, we organize the data to not reveal meaning or link between data and theory but to explain what people do and how lives are organized and coordinated by institutional forces. In this regard, we look at the material reality of what the participant is actually doing, how exactly they are doing this, and how they understand what is going on around them (McCoy, 2006). This offers a contrast to ideological or normative descriptions of what should be happening, such as the idea that clinical self-management of chronic pain adequately describes the daily work that goes into managing pain. Indexing assists in formulating a problematic or question that guides the analysis which is developed based on identifying disjunctures that are evident in people’s accounts. We identified a disjuncture between the pandemic as crisis versus pandemic as lived (i.e., experienced and known). This became the problematic which guided the study. We then developed topics that consisted of grouping together similarities. During this process, LC and FW met by Zoom to discuss their respective understandings and various theoretical lenses which might help explain what they were seeing. As in most qualitative research, analysis was also accomplished through writing (Bhattacharya, 2017; Eakin & Gladstone, 2020) which LC and FW shared back and forth. A manuscript was developed and shared with the full multi-disciplinary team, of which ideas were shared to further finalize the analysis. Meetings were recorded via extensive notes to keep track of interpretative and theoretical decisions.

Findings

In our discussions with participants, they noted the health-related challenges they faced during the pandemic. For example, we heard how experiences of chronic pain worsened due to increased stress levels (Quinn, 30s, B.C.) and inactivity (Meagan, 60s, B.C.). We also heard of the increased risks of COVID-19 infection and its impacts upon chronic pain and how pre-existing financial struggles were amplified by pandemic-related factors, such as grocery delivery costs and prescription dispensing fees (Lisa, 50s, B.C.). However, as IE researchers, we were interested in the tensions in participant’s stories and how these were organized, including through language. Below, we offer a nuanced analysis that makes visible the often less visible expert knowledges and experiences of people living with chronic pain and poverty during the COVID-19 pandemic in ways that offer a counter narrative to the idea of a shared crisis.

Given IE’s focus on uncovering how institutional processes organize everyday experience (including work and knowledge) to reveal the disconnect between what is thought to happen versus what actually happens, we have organized our findings around the ways in which people described these experiences in ways that sit uncomfortably alongside pandemic discourses of crisis. We do this through the following topics: (1) the pandemic as a source of temporary relief from pre-existing struggles; (2) the dissonance between exceptional and unexceptional struggle; and (3) learned resourcefulness in the face of a “public health crisis.”

Temporary Relief From Pre-Existing Struggles

While the pandemic was a significant challenge in the lives of many Canadians, the people we spoke to also experienced temporary relief from pre-existing struggles in ways that made visible a disjuncture from the dominant discourse. For example, while one of the major challenges faced by many Canadians during the pandemic was enforced physical distancing (and subsequent feelings of isolation and loneliness), participants like Winnie (30s, B.C.) shared how the introduction of distancing measures at times normalized her pre-existing experiences of social isolation. At the time of the interview, Winnie had lived with undiagnosed body pain for close to 10 years that resulted from an assault by an abusive ex-husband. Winnie stated that for a long time she was unable to work due to her pain, meaning she relied on provincial social assistance (in her case, Persons with Persistent Multiple Barriers and disability assistance). She shared how the introduction of physical distancing policies meant that she no longer had to explain her absences or inabilities to attend certain events. This created a sense of relief with regard to socializing:

And now that this pandemic has hit, I’ve just been able to kind of relax more without fearing that I’m not socializing enough because we can’t really socialize in that way personally, that it's like OK, well I'm already used to talking on the phone to keep in contact with people. So, this is actually perfect for me because I'm actually having that time to take care of myself and not feel guilty that I couldn't actually make it to see one of my friends because right now we can't do that. (Winnie, 30s, B.C.)

For Winnie, the enforced social isolation alleviated the pressure of socializing, which was “actually perfect” as it allowed her to “relax,” care for herself, and “not feel guilty.”

In addition to physical distancing measures, the introduction of emergency financial relief programs—like the Canada Emergency Response Benefit (CERB) and Canada Recovery Benefit (CRB)—created another form of respite for participants. For example, Lisa (50s, B.C.), who is a single mother, shared that she was forced to leave her job due to her pain and had to rely on federal (Canada Pension Plan [CPP] disability benefits) and provincial disability (Person with Disabilities) assistance, which totalled less than $1,400 per month. She was also struggling with debt from a divorce with an abusive ex-husband. The financial struggles that she was experiencing prior to the pandemic were alleviated by federal assistance during the pandemic:

That was actually very helpful, so it was an extra $300 a month that I was getting. And when that expired, I definitely felt it. I’m pretty sure that’s what kept me housed because when it went away, I struggled to pay my rent and everything else. (Lisa, 50s, B.C.)

Here, Lisa alluded to the inadequacy of disability assistance, as once the federal emergency funds stopped, she again began struggling to pay for her rent and “everything else.” In this passage, we hear how the appearance and then disappearance of federal assistance during the pandemic created a tension between feeling supported and feeling let down.

Naomi (30s, Saskatchewan) also discussed how her financial difficulties were temporarily alleviated during the pandemic. At the time of the interview, Naomi was a single mother who struggled with undiagnosed pain, which she stated was largely triggered by her life circumstances, like poverty, abusive relationships, and her time in foster care. Naomi stated that she received a total of $8,000 through the CERB as a lump sum (due to “some glitch in the system”) during the month that she left her abusive partner. She described this as “being somewhat helpful” during this turbulent time in her life. As she explained:

I stopped paying my phone bill for quite a long period of time, like six months or something, so I paid that and had that reinstated. And then I had money to stay at a hotel room before I found a place, and then I had money for rent and a deposit, and I had money to furnish that place. So, if I hadn’t had to leave that situation, it would have helped in different ways. I would have maybe gone to see the dentist or something. I would have paid some other things that needed paying. But it was just a solution to my current problem which was that I was leaving an abusive relationship, and I was pregnant. So, it kind of got me back on my feet at that time. (Naomi, 30s, Saskatchewan)

Naomi’s story speaks to the economic challenges that already informed the lives of people living with chronic pain and poverty during the pandemic and illustrates how temporary government benefits allowed her to “get back on [her] feet.” She highlighted how the funds helped her but also how, if circumstances had been different, she would have used the funds for other necessities which have presumably gone unaddressed, like dental care for which she had no coverage. The money was not necessarily seen as alleviating the financial pressures of lost income due to the pandemic but rather “a solution to [her] current problem” that was beyond the sphere of the pandemic. Arguably, Lisa’s experience, outlined earlier, was expressed in a similar vein. Overall, Naomi and Lisa’s experiences show the inadequacy of baseline financial support programs for people who are unable to work due to chronic pain and the need for increased financial assistance for people who live with poverty and chronic pain.

Another participant, Winnie, also shared how the temporary relief provided by federal supports benefitted her:

So, due to the low funds that I was living on, because I didn’t have disability, it was literally $362. And that was to pay my hydro, my electricity, and get my food, and also get my medical marijuana. That’s what I had to live off of for the past three years. Just prior to the pandemic when I got approved for disability it did move up to $700. Through the pandemic, we’re now at $1,000 being given to us because of $300 extra. And because I know that’s not going to be a permanent thing, I have invested in tools to help me with my chronic pain that I normally wouldn’t have been able to get due to the high prices. […] So, I’m reaping benefits from this pandemic I guess for my rehabilitation and recovery. (Winnie, 30s, B.C.)

One of the tools that Winnie was able to purchase was a TENS machine² that significantly improved her level of mobility. In Winnie’s story, we hear how temporary emergency measures of support were in fact transformative in her life, leading her to state that she was “reaping benefits.” This gives pause to recognize the challenges that she was already facing and how insufficient supports risk undermining health.

By beginning in people’s standpoint, the institution becomes visible from within people’s everyday experiences, including how temporary forms of government social and financial assistance have limiting effects on the everyday lives of people living with chronic pain and marginalization. The temporary measures implemented by federal and provincial governments, which included modest increases in financial supports, were transformative when it came to the health and wellbeing of people living with chronic pain and poverty. In this regard, while the exceptionality of the pandemic was largely in relation to crisis, we instead heard how the pandemic was an exceptional experience as it facilitated temporary and transformative relief.

The Dissonance Between Exceptional and Unexceptional Struggle

That the pandemic created a significant crisis for many people across the globe is undeniable. However, the people we spoke with described pandemic restrictions and social changes as one additional and unexceptional burden to navigate. This disrupts normative understandings of the exceptionality of the pandemic by drawing attention to lived, everyday experiences and brings into sharp relief the material reality of everyday crises. For example, in describing the challenges she had faced, Lisa did not focus on the pandemic but on the challenges of homelessness:

I ended up being homeless. I had to stay with a friend for six months because I couldn’t afford to pay my rent anymore from December until actually just June of this year when I got placed in government housing. (Lisa, 50s, B.C.)

For Lisa, the concerns of a major global pandemic were displaced by housing precarity. Indeed, throughout her story, she emphasized various social experiences and issues that required her time and attention, including her debt and strained finances, lack of a pain management/treatment plan, a challenging divorce, and her mental health, which situated the pandemic as simply one unexceptional additional factor to navigate.

In discussing her experiences during the pandemic, Naomi also focused on the pre-existing challenges that had been shaping her life, not on the pandemic itself. For her, the pandemic was largely unnoticeable, mainly arising as a hurdle that prolonged what she described was a potential work opportunity surrounded by risks of travelling alone in the winter while pregnant, on the “Highway of Tears,”³ to work for a person she did not know, and in a province where she had little relations. As she shared:

[I was in] an abusive relationship, and I did officially leave. He was convicted, so my baby has never met him and there’s no contact still. We did come to [Saskatchewan]. … I didn’t have .. money, I was travelling alone, it was winter, I was pregnant, I was just starting to show, and it was the Highway of Tears. … I think from the time that I got pregnant to the time that I finally settled at this address, I moved 16 times. […] We came home, and I got into the shelter for a month and then we so fortunately found this place, because I think if we hadn’t found this place, it would have been a lot more of that turbulence, just of moving around and being unsure and feeling very unsupported. (Naomi, 30s, Saskatchewan)

Naomi’s story of risk and turbulence is peppered with abuse and the new responsibilities of being a single mother. Her story also calls simultaneous attention to the fortune and tribulations of finding and securing stable housing. Regarding the shelter, that was the fourth time Naomi had been there, but it was the first time with her baby. She described this as a “difficult” time that left her “feel[ing] a little bit panicked,” in that she did not want her “experience as a single person” – of “being on this verge of being homeless, or being broke, or being without work” – to continue now that she had a baby. In further describing her experience in the shelter during the pandemic, she stated:

I didn’t really notice any major changes due to the pandemic. I think they had different food procedures. How they were giving out food I think was a little bit different. Other than that, I didn’t notice a lot of changes. […] I know that in the beginning of the pandemic they were taking few families or something like that, but that wasn’t the experience when I was there. (Naomi, 30s, Saskatchewan)

For Naomi, the pandemic experience was varied and at times contradictory. She was confronted with life-altering decisions and stresses that demanded attention above and beyond pandemic-specific issues, like closures or physical distancing. As she stated: “I haven’t really noticed how the pandemic has impacted me because my lifestyle changed prior to the pandemic.”

The experiences and insights shared with us by participants reveal a dissonance of exceptionality in pandemic institutional processes and discourses. For participants, the everyday crises they faced – homelessness and housing precarity, single motherhood, finding and securing employment, and fleeing abusive relationships – pre-empted the exceptionality of mainstream narratives of the pandemic. Instead, everyday crises forcibly set aside pandemic-related matters as well as chronic pain. Yet, as noted below, the expert knowledge gained from living through everyday crises prepared them for challenges that stemmed from pandemic-related measures.

Learned Resourcefulness in the Face of a “Public Health Crisis”

Many people living in Canada struggled with the effects of pandemic measures, including reduced stocks of goods (like food and products) and store closures. Interestingly, participants spoke at length of how the challenges they already faced from living within constricted contexts primed them to navigate pandemic restrictions with learned resourcefulness. This insight moves us away from generalized abstract conceptualizations of crisis by making visible the actual everyday practices and knowledges that are useful for people. Furthermore, this insight highlights how the emergency of the pandemic approximated the emergencies and struggles that people living with chronic pain and poverty face daily, meaning they were more easily able to navigate social barriers that presented a novel challenge for others. For example, Sophie (50s, B.C.) discussed how her experiences with poverty prepared her to provide for her household during the pandemic:

Like, I’m really resourceful. That’s the positive thing about being poor, actually, and I think it’s positive for my kids, as well. Like, me and my son were talking about this, it’s taught them to not expect everything that they want. It’s taught them that you do have to work for what you want. It’s taught them resourcefulness. … And I am very resourceful, and I sew, I – even during COVID, because I couldn’t get clothes hardly at all – I ended up, like, altering my own clothing, because I couldn’t afford to order stuff. So, I ended up altering stuff to make them into summer clothes. […] So, I make do with what I have. But, it’s still always stressful. (Sophie, 50s, B.C.)

At the time of the interview, Sophie was a single mother and struggled with fibromyalgia, chronic fatigue syndrome, and various mental illnesses that prevented her from working. Therefore, she relied on provincial disability assistance. She believed that her pain stemmed from her traumatic childhood, compounded by the challenges of being a single mother caring for her two children and grandchildren. In Sophie’s story, she discussed how one “positive thing” of living with financial struggle is resourcefulness, which benefits not only herself but her children during times of societal restriction, like the pandemic. Sophie’s story disrupts normative assumptions that cast people who are poor as innately vulnerable, centring instead the agency, purpose, creativity, and survival that conditions of poverty can foster.

Mia (50s, Ontario) likewise discussed how living with poverty prepared her for the pandemic. At the time of the interview, Mia struggled with chronic pain, depression, and anxiety. Her pain went unmanaged for many years, and she felt that during this time most people in her life thought that her pain was “in her head.” Mia relied financially on Workplace Safety and Insurance Board (WSIB) benefits and the CPP, yet each month she struggled to make ends meet. Therefore, she also relied on her adult child for financial support.

Mia’s experiences of poverty are long-standing, as she grew up in a household of restricted finances. She stated she was “brought up” to monitor her spending, and today “stock[s] up when things are on sale because [she has] no other way to get it.” This in turn prepared her for the expensive food costs and bare shelves that emerged during the pandemic. She stated:

That’s what my mother did, and that’s what my grandmother did. We would buy […] bags of sugar that would be two dollars or something, and they had it on sale for ninety-nine cents, I would buy three at a time and put it in a container. And once the container starts to go down, the sale will come up again, and you just refill the container. So, I learned at a young age how to stock up and be prepared. (Mia, 50s, Ontario)

Mia’s experiences with intergenerational poverty (“that’s what my mother did and that’s what my grandmother did”) equipped her with the knowledge and expertise needed to secure subsistence. This includes the time and effort that goes into planning and scheduling (“once the container starts to go down, the sale will come up again”), which helped with navigating pandemic-related challenges.

The contexts that participants resided within were undoubtedly challenging. However, these contexts also lend to a learned resourcefulness – an expert knowledge gained by living within conditions that define one’s standpoint location, which prepared participants for challenges, like the pandemic. Learned resourcefulness unsettles the exceptionality of pandemic-related challenges or crises and the incongruity of it being a singular abnormality. It also illuminates the organizing power of language that bolsters specific constructions of the pandemic that do not align with, and may in fact displace, the material reality of people living with chronic pain and poverty.

Discussion

The pandemic created significant and unique challenges for people living with chronic pain. The people we spoke with offered knowledge and expertise of the pandemic that are largely overlooked due to the discursive prominence of the pandemic as “crisis.” Specifically, they provided insights on the disjuncture of crisis between official pandemic accounts and everyday experience. For them, the crisis of the pandemic was not a rupture but a persistent defining experience that throws into sharp relief how the pandemic was an additional and unexceptional challenge in lives already beset by long-standing complex challenges stemming from chronic pain and marginalization. Moreover, pandemic-related measures and effects provided some measure of relief for participants, or were met with a “learned resourcefulness” arising from contexts of pre-existing struggle. Here, we understand learned resourcefulness not as an acquired self-regulating behaviour, skill, perception, or attitude, to cope with stress, which is the definition largely grounded in psychology (Zauszniewski, 1995). Instead, influenced by social justice work and poverty studies (Elwood & Lawson, 2018; Piven, 2018) and IE (Smith, 2005), we offer learned resourcefulness as a deep understanding of knowing how to navigate one’s standpoint location, including via mundane strategies or practices, that resists inequitable conditions and decentres hegemonic conceptualizations of poverty (and those subjected to it). For us, this term helps capture the creativity and tenacity expressed in the stories of participants.

Together, participants made visible how persistent everyday crises remained at the centre of their experiences even during times of significant societal turbulence, underscoring the ways in which their experiences are misaligned with dominant discourses of a singular pandemic “crisis.” Specifically, what was made visible was the pandemic as a modifier of experience and how what was a onetime, albeit extended, crisis for many Canadians was just another challenge for others.

To be sure, crisis can be understood as “a claim of urgency employed to characterize a set of contingencies that, taken together are assumed to pose an immediate threat” (Spector, 2020, p. 304). In lives that are already defined by struggle, however, the notion and experience of crisis is altered. Here, we can understand crisis not as a “temporary abnormality related to traumatic events” but rather as “play[ing] a very real role as a constant” (Vigh, 2008, p. 7). While for many Canadians the construction of crisis presented by media, government bodies/leaders, and medical experts was a fitting one, it did not always align with daily realities of people living with chronic pain and poverty where crisis was more persistent. Furthermore, the urgency and immediacy of crisis can endorse a justification of temporariness, including the forms of financial assistance that were helpful for those living with chronic pain and poverty during the pandemic.

Participants shared that the temporary emergency financial assistance they received helped them meet their daily needs. We were made acutely aware of the difference that even minor amounts of assistance (such as $300 per month) can make in the lives of people living with chronic pain and poverty. However, such measures have been laden with barriers. For example, two major income support programs introduced during the pandemic – the CERB, which provided $2,000 per month ($500 a week) for a 4-week period (Government of Canada, 2022a), and the CRB, which provided further income supports following the end of the CERB (Government of Canada, 2022b) – were not implemented with front-end verification but were based on individual attestation of eligibility. As a result, cases exist of people receiving them in error who are now required to pay back the funds they believed they were eligible to receive (Office of the Auditor General of Canada, 2022). While we are uncertain if any of the participants we spoke to were subjected to such measures, we imagine this would cause significant stress among those already experiencing financial hardship. People who received emergency benefits and who were considered low-income also faced provincial social assistance “clawbacks” (Béland et al., 2022). Others argue that the “privileging of formal labour market attachment in eligibility requirements systemically excluded constituencies most likely to be living with poverty” (Pin et al., 2023). The long-term effects of these programs are yet to be known, but there was a notable “reduction in income inequality” during this time (Béland et al., 2022). The stories shared with us help to bolster arguments for various and perhaps unconventional forms of assistance, including cash transfers; universally available employment insurance; parental leave; paid sick leave; affordable credit or loans directed at people living with low income (Persaud et al., 2021); universal basic income (Pin et al., 2023); and guaranteed basic income (Lévesque, 2024).

The pandemic did in fact provide an opportunity for thinking about and introducing nuanced and novel policy recommendations for the future, including those based in health equity frames, in order to account for those who were marginalized. Through a rapid systematic review, Brown et al. (2022) categorize these recommendations as (1) primordial prevention (i.e., policy, research, and advocacy); (2) primary prevention (i.e., accessible and equitable telehealth, communication and education, quarantine, and protective measures); (3) secondary prevention (i.e., testing, contact tracing, and isolation of cases); and (4) tertiary prevention (i.e., supports for marginalized patients and contacts). Others have focused on upstream determinants, such as increased support for health disparities research (including the collection of race-based data); declaring racism a public health crisis; and having “those most proximal to the inequity […] propose and implement solutions” (Gray et al., 2020, p. 2). Even the federal government proposed a health equity approach that drew from human rights frameworks, Health in All Policies frameworks, and public health ethics frameworks (Government of Canada, 2020a).

While a focus on equity is laudable, we must take care with such framings as they can avoid “direct discussion of contentious issues like redistribution of income and wealth” (Lynch, 2017, p. 653); this is especially the case within (temporary) contexts of crisis, like a pandemic, where the focus is not on transformation but immediacy. For Lynch (2017), “reframing social inequality as a problem of health medicalizes the problem of inequality, making it seem less amenable to systemic or structural solutions” (p. 656). This is largely because a medicalized solution is one that is based within the individual. Webster et al. (2019) have similarly highlighted how, for example, the medicalization of poverty risks overlooking the necessary social supports that would lead to transformative solutions. Such framings were evident during the pandemic, where official texts focused on increased screening and greater access to personal protective equipment and temporary forms of assistance (Government of Canada, 2020b), which arguably decentred other initiatives (and standpoint knowledges) that could have focused on addressing and “reducing social inequality consisting of taxation, redistribution and labour market regulation” (Lynch, 2017, p. 658).

Making visible such processes of decentralization is an outcome of working through and with an IE lens, where attention is placed on how and in what ways institutions are involved in “selecting, categorizing, and/or objectifying aspects of the social world in order to develop facts and knowledge upon which to base decisions” (Rankin, 2017a, p. 3). Through an IE lens, we see how authoritative words, language, and discourses assemble the world in ways that disregard and contradict particularities and ways of knowing that are embedded in standpoint (Smith, 2005). We also see a “different knowledge” (Rankin, 2017b, p. 2) of crisis from people living with chronic pain and poverty. In other words, by drawing on tenets of IE, we emphasize instances of “knowing otherwise” (Smith, 1995, p. 21, cited in Rankin, 2017b, p. 3).

The disjunctures that underlie how something is known require attention as they can illuminate contained and constrained knowledges and experiences that may lead to social change, including permanent increases in financial assistance. Official textual practices, which include language, constructed a version of reality based in temporariness and crisis which was inconsistent with a reality of the permanence of everyday crises. To directly challenge institutional practices that constrain “other” knowledges requires beginning in the standpoint of people living with chronic pain and marginalization, which would help to inform novel and transformative policy approaches that take the social aspects of life seriously as well as “different knowledges.” This may include “establishing a universal food income,” reforming unemployment insurance, and introducing permanent “policies supporting investment in community development” (Berkowitz et al., 2020, p. e76(2)). Building on this, we offer the following policy suggestions based on our findings:

(1) An immediate increase to social assistance amounts

(2) Extended healthcare coverage for people who receive social assistance

(3) Meaningful engagement with people living with chronic pain and marginalization in the formation of policy that better aligns with the daily realities and needs

(4) Greater recognition of the social factors that shape experiences of chronic pain, including processes and experiences of systemic and structural marginalization. This might lead to better informed social supports, like safe and affordable housing, and help to reduce unequal and disproportional impacts on those who are chronically ill or disabled

These suggestions reflect the general need for increased attention to and incorporation of the condition of “social vulnerability” in policy formation, which is a recognition of how social structures or structural factors (like poverty) both affect and worsen pandemic-related effects on marginalized groups in unequal and harmful ways (Mladenov & Brennan, 2021).

Disjuncture of crisis, as noted in our discussion of the dissonance of exceptionality, calls attention to how social factors (like food insecurity, safety, housing precarity, and poverty) can at times take prominence over everything else, including the exceptionality of the pandemic. Disjuncture alerts us to the inadequacy of institutional discourses and responses that can “generalize beyond the particular instance” (Smith, 2005, p. 51) and to how the chronicity of struggle and crisis in people’s lives warrants the permanence of measures that have been implemented only temporarily. By speaking with people living with chronic pain and marginalization, we see how words, language, and discourses can assemble the world in ways that disregard particularities and ways of knowing (Smith, 2005). The meeting space of contrasting knowledges and language requires greater attention, including in chronic pain scholarship. We can imagine this meeting space as the conceptual site of the margins that “make evident” oppression, exclusion, and marginalization as well as “creative potential[s]” (Tsing, 1994, p. 279).

Strengths and Limitations

Our study is one of the few to explore the experiences of people with lived experience of chronic pain and marginalization during the pandemic using critical qualitative approaches. This study is founded upon two previous programs of research led by an IE-trained researcher and consisting of the same team members, meaning the data analysis of this study draws on years of in-depth ethnography and knowledge on chronic pain. It is through this previous work that we came to understand the importance of honing our lens on chronic pain’s intersection with marginalization during the time of pandemic.

There are some limitations to our study. All participants were required to speak fluent English which excluded other often marginalized understandings and experiences of chronic pain during the pandemic. Building on this, our study was an exploratory focus on experiences during the pandemic overall, and did not account for temporal considerations related to the different stages of the pandemic. We know, for example, that early pandemic experiences differed from those at a later stage (Detsky & Bogoch, 2021, 2022). This study, as one that is IE informed, did not incorporate specific texts that organized pandemic discourses of crisis. Future research would benefit from the incorporation of such texts. Finally, participants shared with us the many ways in which inequity and injustice informed and structured their everyday lives and experiences. Future research would benefit from a dedicated focus on these processes, including the structural violence of the housing system during the COVID-19 pandemic.

Conclusion

As an IE informed study, we began in the standpoints of people living with chronic pain and poverty and learned how the pervasiveness of struggle contradicts how times of crisis are largely imagined as a temporary rupture of experience. Guided by the tenets of IE, the findings from this study shed light on how pre-existing social factors displaced the “crisis” of the pandemic as simply another struggle, as temporarily relieving struggle, or as a matter that could already be navigated due to the persistence of crisis. As a result, we offered a nuanced understanding of the variability of experience through the conceptual lens of disjuncture that suggests a shift in how we can and should understand lived experience among people living with chronic pain and marginalization. Furthermore, we illuminated how an IE-informed approach, within the context of chronic pain and marginalization during the COVID-19 pandemic, can make visible the displacement of expertise that is grounded in standpoint. More research is needed on how the pandemic and responses to it impacted the health and lives of people living with chronic pain and marginalization in ways both intended and unintended. In doing so, we will be able to work towards social and health equity. The insights gained through this study also call attention to the need for critical qualitative social science scholarship within the chronic pain space to produce research that speaks to the actualities of people’s lives – actualities that are defined by simultaneous and often protracted systemic and structural processes of marginalization.

Footnotes

Acknowledgements

We would like to thank the people who took part in this study and shared their expertise with us on matters relating to chronic pain and poverty.

ORCID iDs

Laura Connoy

Abhimanyu Sud

Ethical Considerations

This study was approved by Western University’s Nonmedical Research Ethics Board (Project ID 115867). All participants involved in this study gave verbal informed consent prior to enrolment in the study.

Author Contributions

Laura Connoy: Conceptualization (supporting); investigation (lead); formal analysis (equal); writing – original draft preparation (lead); and writing – review and editing (equal). Kathleen Rice: Formal analysis (equal) and writing – review and editing (equal). Craig Dale: Formal analysis (equal) and writing – review and editing (equal). Abhimanyu Sud: Formal analysis (equal) and writing – review and editing (equal). Ross Upshur: Formal analysis (equal) and writing – review and editing (equal). Joel Katz: Formal analysis (equal) and writing – review and editing (equal). Andrew Pinto: Formal analysis (equal) and writing – review and editing (equal). Fiona Webster: Conceptualization (lead); supervision (lead); methodology (lead); funding acquisition (lead); writing – original draft preparation (supporting); formal analysis (equal); and writing – review and editing (equal).

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded by a Project Grant – COVID-19 initiative through the Canadian Institutes of Health Research (award number 174886) held by Fiona Webster.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Notes

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“Knowing Otherwise”: Unsettling Notions of Crisis Within Contexts of Chronic Pain and Poverty in the COVID-19 Era

Abstract

Keywords

Introduction

Methodology

Methods

Findings

Temporary Relief From Pre-Existing Struggles

The Dissonance Between Exceptional and Unexceptional Struggle

Learned Resourcefulness in the Face of a “Public Health Crisis”

Discussion

Strengths and Limitations

Conclusion

Footnotes

Acknowledgements

ORCID iDs

Ethical Considerations

Author Contributions

Funding

Declaration of Conflicting Interests

Notes

References