Painful lives: Chronic pain experience among people who use illicit drugs in Montreal (Canada)

Social Science & Medicine 246 (2020) 112734

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Painful lives: Chronic pain experience among people who use illicit drugs in Montreal (Canada)

T

Lise Dassieua,b,∗, Jean-Luc Kaboréa,c, Manon Choinièrea,d, Nelson Arrudab, Élise Royb,e a

Research Center of the Centre Hospitalier de l'Université de Montréal (CRCHUM), Saint-Antoine Building, 850 Saint Denis St., Montreal, Quebec, H2X 0A9, Canada Université de Sherbrooke, Addiction Research and Study Program, Faculty of Medicine and Health Sciences, 150 Place Charles-Le Moyne, Longueuil, Québec, J4K 0A8, Canada c Université de Montréal, Faculty of Medicine, Department of Pharmacology and Physiology, Pavillon Roger-Gaudry, C.P. 6128, succursale Centre-ville, Montreal, Quebec, H3C 3J7, Canada d Université de Montréal, Faculty of Medicine, Department of Anesthesiology and Pain Medicine, Pavillon Roger-Gaudry, C.P. 6128, succursale Centre-ville, Montreal, Québec, H3C 3J7, Canada e Institut National de Santé Publique du Québec, 190 Crémazie Blvd. East, Montreal, Quebec, H2P 1E2, Canada b

A R T I C LE I N FO

A B S T R A C T

Keywords: Canada Chronic pain Substance use People who use drugs Illness experience Stigma Qualitative research

The current opioid crisis in North America has strengthened the boundary between “genuine chronic pain patients” and “drug addicts,” though these categories are not mutually exclusive. Despite its high prevalence —more than double the general population rate— chronic pain among people who use illicit drugs (PWUD) remains an overlooked issue in both health and social sciences. Using the theoretical framework of sociology of illness experience, the aim of this qualitative study was to understand how the experience of illicit drug use shapes the chronic pain experience. We conducted in-depth interviews with 25 individuals who used street opioids and/or cocaine (with or without any other drug) and had suffered from chronic pain for three months or more. Participants were recruited from July 2017 to May 2018, in Montreal (Canada). Social deprivation and drug use increased PWUD's exposure to a wide range of health issues including chronic pain. Even when intense, pain was often described as peripheral in their life given their many other problems. They experienced double stigmatization due to the cumulation of two socially devalued statuses, “drug addicts” and “chronic pain sufferers.” Their attempts to avoid stigma included valuing their toughness/endurance and pursuing physical activities despite the pain. Some reported using substances like cocaine or heroin to meet social expectations of performance regardless of pain. This study improves the knowledge on illness experiences within deprived social settings by showing how marginalization and stigma render PWUD's pain clinically and socially invisible.

1. Introduction The current opioid crisis in North America has raised public awareness of how prescribed opioid medications can cause harm, such as overdose deaths and addiction. Recent health policies and medical guidelines for the treatment of chronic noncancer pain are based on a paradigm of “pharmacovigilance” (Knight et al., 2017) which has led to increased monitoring of overdose and addiction risk factors for all chronic pain patients (Busse et al., 2017; Centers for Disease Control and Prevention, 2016). Thus, physicians are given recommendations not to prescribe opioids for chronic noncancer pain to people with a history of substance use (Busse et al., 2017; Centers for Disease Control and Prevention, 2016). These restrictive measures have strengthened the boundary between people categorized as “genuine” chronic pain

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patients and those categorized as “drug addicts” who are believed to be more likely to abuse opioid medication (Bell and Salmon, 2009). Yet, these two conditions are not mutually exclusive. Several epidemiological studies have revealed a high prevalence of chronic pain among people who use illicit drugs (PWUD), more than double that in the general population (Clark et al., 2008; Dunn et al., 2014; Heimer et al., 2015; Sheu et al., 2008; Voon et al., 2017). PWUD would commonly experience pain of moderate to severe intensity with significant interference in their daily life activities (Alford et al., 2016; Dunn et al., 2015; Heimer et al., 2015). The few qualitative studies pertaining to chronic pain among PWUD (Voon et al., 2018) or people in methadone maintenance treatment (Karasz et al., 2004) have highlighted the difficulties involved in accessing medical pain management. According to several studies,

Corresponding author. Present address: CRCHUM, Saint-Antoine Building, 850 Saint Denis St., Office S01.135.03, Montreal, Quebec, H2X 0A9, Canada. E-mail address: [email protected] (L. Dassieu).

https://doi.org/10.1016/j.socscimed.2019.112734 Received 19 July 2019; Received in revised form 5 December 2019; Accepted 12 December 2019 Available online 17 December 2019 0277-9536/ © 2019 Elsevier Ltd. All rights reserved.

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the course of the study, a diversification criterion was added to encompass a broader range of chronic pain experiences among PWUD: a few participants who had used cocaine or opioids but had stopped for more than three months were included. The staff of the harm reduction services and the cohort study team facilitated recruitment by helping to identify potential participants.

PWUD's pain remains largely underestimated and undertreated (Baldacchino et al., 2010; Berg et al., 2009; Voon et al., 2015) which increases their exposure to harm related to street-drugs (Dassieu et al., 2019a; Karasz et al., 2004; Voon et al., 2018). Several studies, which were focused on the medical encounter, highlighted healthcare providers' prejudices against PWUD. Caregivers commonly doubt the reality of PWUD's pain and perceive them as “drug seekers” rather than as people who are in pain (Baldacchino et al., 2010; McCreaddie et al., 2010; Merril et al., 2002; St. Marie, 2014; Voon et al., 2015). However, to our knowledge, PWUD's daily experience of chronic pain has not yet been documented outside their relationships with healthcare providers. What place does pain take in their life trajectory and in their everyday life? How do they manage the double identity as people who are suffering from pain and as PWUD? This study was set within the theoretical framework of sociology of the chronic illness experience, which has been developed by interactionist social scientists over several decades (Conrad, 1990; Pierret, 2003; Strauss, 1975). This approach aims to study “how people manage their illness in their everyday life,” without necessarily focusing on the medical encounter and the individuals' “status as patients” (Conrad, 1990). Thus, in our study, we adopted what Peter Conrad calls an “insiders' perspective” focusing on “the meaning of illness, the social organization of the sufferer's world, and the strategies used in adaptation” (Conrad, 1990). This framework has been successfully used to document the chronic pain experience (e.g. Baszanger, 1989; Corbett et al., 2007; DelVecchio Good et al., 1992; Good, 1994) underlining the biographical changes that chronic pain can provoke in one's life, or describing how it changes the suffering person's perception of the world. The concept of “pain trajectories” (Fagerhaugh and Strauss, 1977) has been developed to encompass the social processes and interactions involved in the evolution of pain as lived by the suffering person. Therefore, the trajectory of pain cannot be reduced to the physiological variations of pain intensity (Fagerhaugh and Strauss, 1977). Furthermore, several sociologists and anthropologists have demonstrated that pain can be felt and interpreted differently depending on the social group to which the person belongs. Pain experience stems from the person's relationship with her or his body, which is socially and culturally constructed and differentiated (Boltanski, 1971; Garro, 1994; Zborowski, 1969). Thus, the pain experience is not only a biological and psychological experience, but it is also a social experience. Stemming from this perspective, the objective of this paper is to provide an understanding of how the experience of illicit drug use shapes specific social experiences of chronic pain. Collecting the narratives produced by suffering people proved to be an effective means for understanding the social components of the chronic pain experience (Good, 1994; Hydén, 1997). It enabled us to analyze how the individuals gave meaning to their pain and included it in their social life trajectory (DelVecchio Good et al., 1992; Hydén, 1997; Kleinman, 1988).

2.2. Data collection and analysis The first author (LD) conducted the interviews from July 2017 to May 2018, using a semi-structured guide that included open questions about pain experience, pain management techniques, healthcare trajectories for pain management, and drug use trajectories. The interviews took place in the recruitment sites. They lasted between 40 and 90 min and were digitally recorded and transcribed verbatim. After each interview, the participant received CAD$25 monetary compensation. To ensure data saturation, the data analysis was performed concomitantly with the data collection, using the Grounded Theory comparative method (Corbin and Strauss, 2015; Glaser and Strauss, 1967). The interview transcripts were thematically coded (Miles et al., 2014) using NVivo 9 software, and memos were written to progressively identify emerging conceptual categories and their properties (Corbin and Strauss, 2015; Glaser and Strauss, 1967). The first author (LD) analyzed all the interviews, and the fourth author (NA) double-coded the first six to obtain a preliminary set of themes and conceptual categories (Berends and Johnston, 2005). The themes and categories were then enriched during the analysis process and through regular team discussions. We conducted a more in-depth literature review concomitantly with the data analysis to compare the emerging conceptual categories with already existing concepts. 2.3. Participants' characteristics Of the 25 participants recruited, 10 were women and 15 were men, and their age varied from 27 to 61 years. All except one were Caucasian, which is congruent with the characteristics of the population receiving harm reduction services in downtown Montreal and the cohort study where the recruitment took place. They suffered from chronic pain located in various areas of their body (back, knees, legs, hands, stomach, head … etc.), lasting for several years (more than 10 years for half of the participants). Most participants used several substances (cocaine/crack, opioids including heroin and/or prescription opioids obtained on the street, amphetamines, used several times a week). Ten participants were on opioid dependence treatment (methadone or buprenorphine-naloxone), some of whom were maintaining concomitant illicit drug use. Only one PWUD in the study had an opioid prescription for his chronic pain problem. In addition to chronic pain and substance use, most of them faced complex health issues (e.g., HIV, hepatitis C, mental health problems) and social difficulties (e.g. poverty, unemployment, sex work). Several participants had experienced or were currently experiencing homelessness. See Dassieu et al. (2019a) for more details on the characteristics of the study participants.

2. Materials and methods This qualitative study was conducted by an interdisciplinary team involving social science researchers and health researchers specialized in substance use and in chronic pain. We conducted in-depth semistructured interviews with 25 PWUD suffering from chronic pain.

2.4. Ethical considerations The research was approved by the Ethics Boards of the Centre Hospitalier de l’Université de Sherbrooke and of the Centre Hospitalier de l’Université de Montréal. The participants' names, as well as the dates and locations they mentioned, have been changed to ensure confidentiality.

2.1. Sampling and recruitment strategies Participants were recruited in downtown Montreal (Canada), outside of clinical settings, within three community-based harm reduction services, and among the participants of an ongoing prospective cohort study of people who inject drugs. The initial recruitment criteria were to have used cocaine and/or street opioids (with or without any other drug) at least once a week in the past three months, and to have experienced chronic pain for three months or more. Participants also had to be at least 18 years old and be able to give written consent. During

3. Findings The first section of the results centers on the impact of chronic pain on PWUD's life trajectories and biographies. In the second section, we 2

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examine PWUD's daily experience with chronic pain and its consequences on their social interactions with other people.

I worked as an escort, and I had a client that had given me a beating, kicked me in the back. I had a rupture of the kidney. I had a ruptured kidney. For six months, I had trouble tying my shoes. (Cathy, 50 years old, employed, back pain, multiple health conditions)

3.1. How chronic pain comes across PWUD's life trajectories

I used to give massages at home, and I've gone through prostitution to pay my drugs. I could still do it, even at my age, but I don't want to. Look where it has led me: all these wounds on my body. (Martine, 56 years old, unemployed, fibromyalgia, multiple health conditions)

3.1.1. PWUD's harsh living conditions: a fertile ground for chronic pain Several participants' narratives indicated that the pain had originated in one of the following contexts: (1) complications related to substance use or (2) unstable and precarious work. These two contexts refer to difficult living conditions marked by marginalization which may have precipitated pain onset. According to many participants, besides the physical effects of the substances, living “on the edge” (Cathy, 50 years old) in the social world of drug use contributed to causing or intensifying multiple health problems including chronic pain. For these participants, the exact origin of the pain often remained unknown. They could not date it accurately; nonetheless, they linked it to their substance use. For instance, Angela mentioned the toughness of the drug world without being able to determine how her pain had begun:

Many of the women we met mentioned that they experienced physical and sexual violence over the years, causing irreversible damage on their body and mind. Several male participants, for their part, linked their pain to difficult work conditions and physical manual labor, often undeclared and unsafe: I worked really hard; I lifted heavy loads. That compressed my spine a bit. It causes me hernias. There are days when I can't walk at all. Int.: Do you have [monetary compensation from] CSST [Occupational Health and Safety Commission], or something?

I have fought with someone, you know, I'm into drugs, I was selling, I've been shoved, I've shoved people, all that, but … I don't know if it's because of that; it seems to me that I never fell anywhere, I don't know, I don't remember. But anyway, there's something out of place somewhere in my body, that's for sure. (Angela, 54 years old, unemployed, back pain, hepatitis C)

Part.: No, I was working under the table. That's what makes it worse. It's come from working, forcing, digging …. I was working damn hard, all in one shot. Sometimes, we worked more than 12 hours. In excavation, sometimes, you have just a week or two to do an entire job site. (Bertrand, 38 years old, employed, back pain, HIV, hepatitis C)

As for Jean-Sébastien, he thought he had injured his knee during a moment of intense substance use but had no clear memory because he was under the effect of drugs:

PWUD suffering from chronic pain saw their situation aggravated by several difficult circumstances that accumulated and overlapped. For some participants, whereas poor work conditions were at the origin of the pain, drug use made their economic situation even more unstable by depriving them of financial compensation in cases of accident:

I: What happened with your knee? Did you fall, or … ? P: I don't know. I really don't know. My family physician said it's probably not because of the drugs, but maybe I made a bad movement while I was high, or, you know, something happened, and since then, I have pain. (Jean-Sébastien, 29 years old, unemployed, knee pain)

It happened about five or six years ago, I would say. I had an accident. I was working on the pipelines in Manitoba and I was working on the payroll, but I had taken drugs the day before. And because of that, I never got compensation from the WCB [Workers Compensation Board]. I ended up in the street because the WCB didn't want to help me because my piss tests came back positive for cocaine. (Julian, 40 years old, unemployed, back pain, anxiety disorder)

Similarly, another participant assumed that his broken neck, discovered when he was at the hospital, stemmed from multiple overdoses of cocaine accompanied by falls: I had gone into convulsions due to an overdose of cocaine at home, and I had fallen with my head against the edge of the wall. I fell, like that, on my back, and my head against the wall. I broke my neck. I overdosed often. Three times a year, and I'm underestimating because there was a time when it was practically every week. I fell, like that on the sidewalk, on my back, on the edge of a wall … (Mathieu, 46 years old, employed, back pain, HIV, hepatitis C)

In this section, we have shown that the harshness of drug use environments and precarious work conditions are some of the identified sources of pain across many PWUD's life trajectory. In the next section, we examine how the chronic pain experience interacts with other domains of their biography. 3.1.2. Chronic pain in PWUD's life trajectory: a peripheral experience? Several sociological and anthropological studies of the chronic pain experience have highlighted the irreversible changes that pain triggers in the life trajectory and everyday life of sufferers. In many cases, suffering people must both redefine their identity and adjust to the new constraints and limitations of their body (Bury, 1982; Charmaz, 1983; Morden et al., 2017; Saunders et al., 2018). Chronic pain can then become a totalizing experience regulating people's perceptions of themselves and of the outside world (Good, 1994). Nonetheless, in the narratives of many participants in this study, chronic pain became embedded in already difficult conditions of existence. The pain was described as a supplementary element among the multitude of problems that the people had to manage daily to survive. Having to find lodging, regaining custody of their children, or treating their HIV, were among the contexts that people had to contend with in addition to chronic pain. One participant used the metaphor of a “bomb” to describe the accumulation of predicaments that had led him to depression and suicidal thoughts. Pain was one of the numerous pieces of this “bomb”:

Others explained the onset of pain by the wear and tear on their body caused by life on the street: It's not surprising that I have all this pain. I spent … I don't know any more if it's eight years or 10 years, on the street. Either 8 years, or 10 years, I don't remember. And then, I was sick. I spent some winters out in the cold; it wasn't easy. I was doing what I call the survival merry-goround. I would go to […] two shelters for street women. I would go to [one], I would come back to [the other]. But sometimes, not only sometimes, often, there was no room. So, I would sleep outside, I would sleep on a bench. And today, I've had pain in my body for years. (Josiane, 61 years old, unemployed, osteoarthritis of the hips, back pain, multiple health conditions) Besides substance use environments, several participants placed the origin of their pain in a work context. Sex work and drug use environments are often interlinked, exposing women who use drugs to particularly unstable living conditions (Roy and Arruda, 2015). Several women in our sample stated that sex work had exposed them to repeated assaults and violence that could cause multiple types of pain:

It's not easy! That's why, sometimes, I get depressed. I have to face the street, I have to face all that, and the prejudices. I have [my child]. I 3

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3.2. The daily chronic pain experience and substance use: coping with a double stigma

fought to keep my child. They never wanted, and they had nothing against me. So, I have to keep on fighting, and with my backaches, it's been two weeks that I haven't slept. The depression is there. I'm going to tell you something: It's a bomb! It's a bomb that has exploded. Since 2010, I've had HIV, and hepatitis C. The hepatitis C, I healed on my own, but now, I just found out that it’s back. That's why it's another blow in all that. (Bertrand, 38 years old, employed, back pain, HIV, hepatitis C)

This section focuses on the social experience of chronic pain in PWUD's everyday life through the lens of stigma management. 3.2.1. Double stigma, double secret In many participants' narratives about their interactions with the people in their circle, the stigmatization due to chronic pain was added to the stigmatization they experienced for using drugs. The two were intertwined and combined to produce a particularly discrediting social identity. Therefore, the stigma attached to drug use seemed to affect the meaning that others gave to the actions of PWUD suffering from chronic pain. Sometimes, inabilities due to the pain were interpreted in terms of stigmatized attributes associated with people with addiction, as in the case of Randy, who regretted that his difficulties walking could be considered to be laziness:

The chronic pain experience appeared to be a peripheral experience in the everyday life of many PWUD. In such difficult circumstances, the onset of pain or its persistence over time did not trigger a readjustment of the person's identity around the condition of chronic pain sufferer. The pain was not described as being central to their everyday existence because it added to other predicaments resulting from precarious living conditions. Suffering from numerous pathologies, Lyonel described himself as a “survivor from the world of addicts and the street.” The knee pain from which he had been suffering for several years came second after far more vital emergencies:

I walk very slowly. It's like, you know, I'm going along, like I have no worries [Laughter]. People who don't know me must say: “My God, he has no worries.” But, well, you know, I walk around slowly. I try not to be rushed because either way, when I'm rushed, if I move quickly, as soon as I move more quickly, my legs get tired right away [from pain].” (Randy, 43 years old, employed, leg pain, multiple health conditions)

It's been two weeks since I started on that [medical follow-up on the pain] because I have lots of clinical things, you know: I have my heart, I have my liver, I have my knees … I'm very sick. I have lots of appointments at the hospital. This week, I had five appointments. I'm going to deal with it step by step. I'll see, in the coming months, which steps I will get through, and I will go for it. It's the only way I have for now. I already have enough worries because of my heart, the operation. For now, [the pain] is a detail …. I think there are things that are more … not important, but … my knee is important too, but it's not yet chronically painful for it to come first, for the heart to come second. (Lyonel, 45 years old, unemployed, knee pain, multiple health conditions)

The cumulation of the two devalued statuses contributed to marginalizing many participants both versus other substance users and versus their circle of non-users. These participants reported that they could no longer find their place in the drug world or outside of it. They felt judged and misunderstood for their pain as well as for their drug use. Several participants explained that they had distanced themselves from other substance users since the onset of their pain. Their network of relationships had progressively shrunk. For example, Bertrand had distanced himself from his substance-using friends who accused him of “pretending” to have a sore back to arouse compassion or avoid physical efforts:

Lucile, for her part, had just attempted suicide a few days before we met. Although her stomach pain was invasive enough to prevent her from eating, she explained that it was not currently at the centre of her preoccupations: P: At the moment, I have other problems that are more severe [than pain]. It's always a matter of what's the most severe at the moment.

I often get judged: “Oh, he's doing it on purpose!” Sometimes, I can't walk, but sometimes I can do a bit of what anyone can do. I don't feel the pain, when it's numbed by the medication. But I feel it when the medication wears off. That's what my friends don't understand. “He's pretending!” I've often been told that. (Bertrand, 38 years old, employed, back pain, HIV, hepatitis C)

I: A matter of priorities? P: You could say priorities in someone normal, someone with a life where there are ups and downs, not just downs, I mean … Priorities, we could say “I spend time for a good thing or for a bad thing”. In my case it's always: “which bad thing has to go first?” There's never a good thing. (Lucile, 46 years old, unemployed, stomach pain, joint pain, depression)

Stigma associated with chronic pain was present in participants' drug use environments, whereas stigma associated with being illicit drug users was particularly strong when interacting with healthcare providers for their pain. As we have previously shown (Dassieu et al., 2019a), PWUD suffering from chronic pain felt labelled as “addicts” in health services. Many participants reported having been denied pain management because of their substance use:

Only the participants whose pain was the result of an unforeseen event, such as an accident, considered that pain had caused a disruption in their life. For Richard, the onset of pain along with the power of written medical labels had contributed to trapping him in the marginalized social positions related to addiction and homelessness:

Sometimes I regret having told doctors about my drug use. Look how I'm treated now. I won't say that I've always been badly treated, but I'm stigmatized, I've been categorized. What's going to happen when I'll stop using drugs? I will still be categorized. (Karine, 36 years old, unemployed, osteoarthritis of the hands, endometriosis)

In my medical record, I don't know why … Anyway, I know that I had drunk some beer, and the day before the accident, I had sniffed a line, but when they did my blood tests, then, they were saying that I was a polydrug addict. So, I looked like I was a homeless person, and a polydrug addict, a druggie. But that doesn't represent me. I, I was a cheerful, athletic guy. I was a leader, I was in good health, I had my entire future ahead of me. (Richard, 36 years old, unemployed, head, back, knee pain)

Furthermore, several participants hid both the drug use and the pain from their family for fear of being judged or discredited, thereby reinforcing their isolation: Int: With whom do you talk about your pain? Part.: Not many people. There aren't many people who know. Not even my parents. I admit that there isn't … no, there isn't anyone who knows. Maybe I'd be afraid of being asked questions. I don't want them to know about my substance use. No, I admit that I avoid the subject. I'm afraid of being stigmatized, you know? Because people who know do it, even if they're very open-minded. I didn't expect that, but every time I have

The models of biographical continuity and of pain as a peripheral experience appear to constitute a specificity of many PWUD's experiences compared with other forms of chronic pain experiences corresponding to schemas of “biographical disruption” (Bury, 1982). For these PWUD, pain was perceived as one additional difficulty in the continuity of a physically and socially tormented life trajectory. 4

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I went to the hospital alone like a big boy, I had left my cane at home to show to the doctor that I was a tough guy. The physician saw the radiography and said he was going to plaster [my leg and my arm]. He asked me if I had a friend who could help me go home. I said: “No, I came alone.” He said: “How are you going to drive your car?” I said: “I came with the autobus.” He didn't believe me! He said: “That is impossible, you can't walk with that!” I showed him my bus ticket, he didn't believe me. He said: “That can't be.” Then he went to find another physician and told him: “Look at the radiography, and look, he walks!” (Jacques, 54 years old, unemployed, knee pain, multiple health conditions)

anything sore, they blame it all on that [on the substance use], and it bugs me because that's not necessarily problem. I prefer that as few people as possible know. (Marjorie, 37 years old, employed, back pain) Sometimes, guilt brought on by people in their circle led several participants themselves to minimize the pain. In Karine's case, her friends and family progressively instilled in her the conviction that she should usually be able to tolerate her pain: Int: Did you wait a long time before talking to a doctor about your pain? Part.: It took several years. Because when I'd talk about it a bit, my mother, my family, my friends would tell me: “Stop your whining! It's because you're a whiner.” “No, but it's weird! I'm starting to have trouble …. ” “Yeah, yeah, yeah,” you know? It's also the trivialization. People, they're like: “It's normal to be a bit sore; cut it out.” (Karine, 36 years old, unemployed, osteoarthritis of the hands, endometriosis)

By avoiding mentioning their suffering related to pain but also to the other difficulties in their lives, many participants refused to project an image of physical or mental weakness: Lots of things have happened to me since I was young. So, I learned to take life with humor. Better to laugh than cry because, otherwise, I would be always crying. I'd rather be laughing all the time; it's nicer for me, and for others. I have a lot of baggage for a young girl. You have to look at things positively anyway. It's better to start like that right away because, otherwise, I'll be an old grouch! [Laughter] (Karine, 36 years old, unemployed, osteoarthritis of the hands, endometriosis)

3.2.2. Resisting pain to resist stigmatization For many participants, chronic pain led to feelings of loss of dignity due to their incapacity to conform to expected social norms, notably in terms of gender and age, as well as the norms of the drug world and the street which demand an appearance of strength. Several mentioned their pride being hurt by the inabilities related to the pain. To avoid losing their dignity, they would attempt to conceal the stigma associated with chronic pain. Two forms of concealment were particularly present among the participants: (1) claiming a tolerance for pain, and (2) using substances to maintain their activities despite the pain. Many participants defined themselves as “tough,” that is, as people with a high pain tolerance, capable of doing physical activities despite their pain. They refused to project images of weak or vulnerable people. Many participants thus maintained their daily activities, shrugging off the pain, advancing their investment in such physical tasks as work or sports:

Silvio, for his part, kept an ironic distance from the toughness ideal, but he still tried to keep up appearances with the people around him by continuing to work despite his pain. The importance of retaining his dignity gave structure to his narrative: I do my stuff just the same. I do my things just the same, out of pride, you know, out of vanity. Like, I went to work just the same. Someone normal wouldn't have gone to work; I can guarantee you that. Everyone says: “You're built tough, Silvio! You're built tough!” Damn, I'm fed up of hearing that line! I'm not built tougher than anyone else. It's just pride, that's all. I'm in pain, like you would be in pain. Except that you, if you're in pain, you don't have enough pride to go to work. Me, I was proud to go. (Silvio, 44 years old, unemployed, head, knee, feet pain, hepatitis C)

During the day, I can tolerate the pain. I've always had a pretty strong body: I've played hockey all my life. I've done sports all my life. And, I've always worked physically. So, I've always had a pretty good … body. Like the doctor said when I had my accident: thanks to my experience as a tough guy that I'm not in a wheelchair today. (Julian, 40 years old, unemployed, back pain, anxiety disorder)

PWUD's attempts to maintain the appearance of “being tough” foster the clinical invisibility of their pain. The desire to tolerate pain while maintaining everyday activities led some participants to acknowledge the pain as a problem only several weeks or months after its onset and escalation. Bertrand reported consulting a physician only when he realized that he couldn't walk anymore, after several months of minimizing his pain:

I cycle a lot. I came here by bike. I'll be going back by bike later. I cycle year-round. I did it in the winter. I walk eight hours a day. I'm outdoors while … I work 11 hours, you see, I'm physically very fit. I'm in shape. (Cathy, 50 years old, employed, back pain, multiple health conditions)

After work, I would get home, and: “Shit, it seems like I'm not my usual self. I'm sore, it seems, shit. It must be me!” You know, as time went on, that's what I would tell myself. I was trying to fool myself. I would tell myself: “It must be like those who work out”. At some point, I saw that …. When I practically couldn't walk anymore, the first time, I said: “Damn it, what's that? And then, I panicked. I went to the emergency, and that's when my doctor diagnosed me with that. (Bertrand, 38 years old, employed, back pain, HIV, hepatitis C)

In several interviews, the participants said that the physicians were surprised at their tolerance for pain. These participants presented the physicians' reactions of astonishment as a sign of their exceptional physical condition, which would defy even scientific explanation. For them, reversing the stigma was a way to produce a positive interpretation of their situation: The doctor who operated on me, when he looked at the results in his papers, he said to me: “My God, you must have been going crazy, you, in a wheelchair at your age!” I said: “What do you mean? No, I wasn't in a wheelchair, not me.” In his papers, the results that he was seeing, when I told him: “I'm not in a wheelchair! I was working again this morning,” he said: “No, that can't be. With what I see here, in the results, this is a person who isn't walking.” He said: “You came here by yourself this morning? On your legs?” I said: “Absolutely!” He said: “That doesn't make sense. From what I see here, you're not supposed to be able to walk, with the results that I have.” I said: “That's it. When I say I have a high tolerance for pain, well, that's it. I, I'm walking. Of course, I have to take some breaks …” He couldn't believe it. He said: “Listen, you have the legs of a person between 80 and 90 years old.” (Randy, 43 years old, employed, leg pain, multiple health conditions)

The use of opioids or stimulants is also part of a technique to manage the stigma of chronic pain, helping some participants to hide the disabilities caused by pain. Some participants explained that they took opioids in order to carry out physically demanding tasks at work. The drug was not consumed to relieve the pain (though this can occur in other circumstances) but rather to satisfy the need to perform at work (to be a “good” worker) without being physically reduced by the pain. In the summer, I work on festivals, sometimes for weeks at a time. And, I admit that I take more heroin in the evening. It's also to tough it out from day to day, because we do long days. Even sometimes, in those cases, sometimes I've even taken some during the day to make it through the day.” (Marjorie, 37 years old, employed, back pain) Many of the participants valued work in the hope of shedding the 5

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permanent state of physical, emotional, and social suffering which includes chronic pain. Moreover, we have shown that the experience of biographical continuity may influence how PWUD suffering from chronic pain prioritize pain management among their other problems. Several studies of the experience of multimorbidity among people who do not use illicit drugs have shown that the associated functional limitations were among the main criteria for prioritizing one disease over the other(s) (Arreskov et al., 2018; Cheraghi-Sohi et al., 2013). Our study participants generally tried to minimize their functional limitations and gave pain a lower priority compared to life-threatening health conditions or urgent social problems such as housing. Nevertheless, they felt that pain was a complicating factor that contributed to aggravating their situation and to rendering it hopeless. In this regard, chronic pain and substance use often have an impact on each other. As this study shows, for some participants the onset of pain was an indirect consequence of living in drug use environments. At the same time, pain in turn contributes to intensifying people's involvement in substance use in many cases (Dassieu et al., 2019b; Karasz et al., 2004; Voon et al., 2018). This study also shows how PWUD suffering from chronic pain can face the negative consequences of two stigmatized conditions, the one of “drug addict” and the one of “chronic pain sufferer.” The experience of stigma is an integral part of the chronic illness experience (Conrad, 1990). As such, it has been the focus of several studies on chronic pain showing how suffering people try to distance themselves from the stigmatized attributes associated with chronic pain such as being labelled “weak”, “lazy”, or “malingerer” (Eaves, 2015; Jackson, 2005; Lonardi, 2007; Pryma, 2017; Samulowitz et al., 2018; Werner et al., 2004). In this study, we analyzed the forms that this stigmatization takes in the case of people belonging to the social group of PWUD, a group that is already the object of structural stigmatization. Belonging to one or several stigmatized groups has major consequences for people's lives, such as status loss and discrimination (Link and Phelan, 2001). The notion of “double” or “layered” stigma has been used to describe the experience of people facing several discriminations due to concomitant devaluated conditions (e.g. Daftary, 2012; Gausel and Thørrisen, 2014; Luck-Sikorski et al., 2018). Other studies have highlighted the notion of “intersectional stigma” (Berger, 2004; Pryma, 2017) which crosses the chronic illness experience in social groups that are oppressed in terms of gender, race and/or socio-economic status. Our study reinforces these theories by adding the stigmatized status of PWUD as a source of discrimination interacting with the social experience of chronic pain. Our study also suggests that being doubly stigmatized reinforces people's isolation as well as their experience of loss of dignity. Isolation and lack of understanding from friends and family regarding pain is not exclusive to PWUD, as testified in the sociological literature on chronic pain (Glenton, 2003; Good, 1994; Hay, 2010; Lonardi, 2007; Scarry, 1988). Nonetheless, relational problems can be aggravated, on the one hand, by the isolation resulting from substance use, often hidden from the family, and on the other hand, by the people's desire to avoid being negatively judged because of their pain during interactions with other PWUD. Devaluing judgments from other PWUD contribute to explain why participants had few discussions about pain with their peers. The pain often remained a secret and was not revealed because it could lead to discredit in the world of substance use. It was thus difficult for participants to share advice or experiential knowledge on chronic pain management, contrary to acute pain, which often leads PWUD to the sharing of techniques for self-medicating with drugs or opioid medication (Dassieu, 2018). The attempts to conceal stigmatized conditions (Goffman, 1963; Lonardi, 2007), which may translate into PWUD's willingness to conform to the idealized image of being “tough,” preclude many of them from using complaints to express their pain. Injunctions to “suffer with dignity” and to “remain stoic” in the face of pain, often internalized by people suffering from chronic pain (Eaves, 2015; Werner et al., 2004),

devalued representations associated with addicts (idleness, refusal to make an effort, dependent on social assistance …). Therefore, they had a tendency to “kill themselves working,” and to do more than what their employers asked. The drugs or medication helped them increase their performance and deal with physically demanding work: Part.: It's hard because I, I started working in the month of April and, now, I can't work anymore. Int.: Where do you work? Part.: I worked … I was unloading [at the port]. I would unload containers. They're 40-footers, there, 50-lb boxes. Couldn't do it. I couldn't do it; pride made me do it. But I was taking [opioid] pills, you know, I was taking a lot. (Silvio, 44 years old, unemployed, head, knee, feet pain, hepatitis C) Others said they were forced to go back to work because of financial difficulties accrued further to the onset of pain. Julian had to work intensely after his accident, because he had no compensation. To “tolerate the pain” and provide for his family, he increased his use of heroin and morphine. Using the image of the vicious circle, he explained that he would take drugs so he could continue to work despite the pain, and that he worked to pay for his drugs and thus endure the pain: “When I left the hospital, I was headed home without a salary. So, I had to start working again, really endure the pain. So, half of my pay check was going to heroin and morphine as much as I could. And the other [half of the pay check], well … While I had my accident, my wife got pregnant with my little girl. So, it was pretty hard. Very, very hard. I had to work with a lot of pain; at the same time as my wife wasn't working anymore because she had just given birth.” (Julian, 40 years old, unemployed, back pain, anxiety disorder) 4. Discussion This study shows that when a person actively consumes illicit substances, living with chronic pain means dealing with two socially devaluated conditions added up to multiple daily difficulties at both physical and social levels. In the present case, the commonly seen readjustment of one's existence around the pain is often set aside to make room for complex trajectories related to health and social life. However, some components of the social experience of chronic illness, such as stigmatization and stigma concealment, appear to be exacerbated among PWUD due to their double condition. One of the contributions of the present study is the theorization of chronic pain as a biographical continuity and a peripheral experience for PWUD as they often live multiple complex social and health problems. In the life trajectory of many PWUD, chronic pain is not reported as being a major turning point. It occurs in a context of life and health conditions that are already difficult, characterized by marginalization. The idea of a biographical continuity has been raised in other studies, notably in the case of older people for whom chronic disease is perceived as part of the usual aging process (Llewellyn et al., 2014; Richardson et al., 2006; Sanders et al., 2002). According to Williams (2000), the notion of “biographical disruption” (Bury, 1982) assumes prior existence of a “normal” health state which is not systematically the case in disadvantaged social contexts. Some other studies have highlighted the efforts of suffering people to prevent pain from causing a biographical disruption in their life (Eaves et al., 2015; Saunders et al., 2018). Our research shows that the “biographical disruption” model (Bury, 1982) and the model of chronic illness as a principle for re-organizing the existence of sufferers (Good, 1994) do not provide a complete picture of the situations where people must deal with several pathological conditions and concomitant social difficulties. Unlike the narratives of many people suffering from chronic pain with no other concomitant condition (eg. Good, 1994; Morden et al., 2017), in our participants' narratives, biographical continuity is situated in a 6

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Acknowledgements

are reinforced by the values of the drug and street world, which demand a constant appearance of strength (Benoist, 2008). Although the “tough guy” image recalls gender codes specific to virility (Samulowitz et al., 2018), it seemed to be as present in the narratives of the women as of the men. Many participants opposed the positive representation of being “tough” in the face of pain, to the unappealing image of a person who is constantly complaining to arouse compassion. Therefore, PWUD may strive to continue their activities (notably work). Their attempts to avoid stigmatization often contributed to the aggravation of their pain. As shown by Eaves et al. (2015), the management of the “social risk” (concealing pain to avoid stigma in social interactions) can become conflicting with the management of the “physical risk” (avoiding flares in pain intensity). Furthermore, the use of stimulants and psychostimulants to perform at work, which has been reported in more socially integrated populations such as senior executives or students (e.g. Vrecko, 2015), is not considered, either clinically or in research, as an issue for people who use opioids or for chronic pain sufferers. Our research shows that these practices, although not well known, are a reality for PWUD suffering from chronic pain. Stigmatization, as well as the actions that people take to avoid it, reinforce both the instability of their health condition and their clinical invisibility. This adds to the lack of recognition of PWUD's pain in the healthcare system, caused by discrimination against these people when health care providers challenge the reality of their pain (Baldacchino et al., 2010; Blay et al., 2012; Fibbi et al., 2012; Merril et al., 2002; St. Marie, 2014; Voon et al., 2015). Currently, the context of mediatization of the opioid crisis tends to accentuate physicians' mistrust of PWUD and the stigmatization faced in healthcare services (Dassieu et al., 2019a). The double concealment of chronic pain by the PWUD themselves and by health professionals thus could contribute to intensifying their difficulties accessing medical services to relieve their pain.

This study was funded by the Addiction Research Chair of the Université de Sherbrooke, held by Elise Roy. Lise Dassieu obtained a postdoctoral fellowship from this chair for this study (2017–2018). The authors wish to thank the participants for accepting to share their stories with us. Thanks also go to the harm reduction services and the HEPCO Cohort team, who helped recruit participants. Additional thanks to Joanne Zinkewich and Pr. Gabrielle Pagé who provided valuable help with language revisions. Finally, a special acknowledgement goes to Aline Faria, Baptiste Godrie, Sarah Meunier, and Caroline Robitaille, for their useful advice on a previous version of this manuscript. References Alford, D.P., German, J.S., Samet, J.H., Cheng, D.M., Lloyd-Travaglini, C.A., Saitz, R., 2016. Primary care patients with drug use report chronic pain and self-medicate with alcohol and other drugs. J. Gen. Int. Med. 31, 486–491. https://doi.org/10.1007/ s11606-016-3586-5. 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5. Conclusions This study improves knowledge on illness experiences within deprived social settings by showing how marginalization and stigma have multiple negative impacts on PWUD's pain experience. PWUD's pain intertwines with numerous social and health problems in their life trajectory. The double stigma reinforces both their isolation and the invisibility of their pain. This study has shown the importance of understanding the experience of PWUD suffering from chronic pain to give visibility to this population that is neglected both in research and clinical settings as well as in health policies. By analyzing how chronic pain develops and is experienced among PWUD, this study has shed light on the tip of the iceberg, of which the submerged part opens onto the broader problem of social health inequities. This research not only contributes to the sociological knowledge of the chronic illness experience in the context of marginalization but also shows the need for medicine and health policies to offer non-stigmatizing responses considering the complex intermingling of peoples' health and social issues. Author contribution statement Lise Dassieu designed the study, conducted the data collection and data analysis, and drafted the manuscript during her post-doctoral fellowship under the supervision of Élise Roy and Manon Choinière, who both oversaw the study. Jean-Luc Kaboré and Manon Choinière both contributed to the data analysis and manuscript revisions. Nelson Arruda contributed to the data collection, data analysis and manuscript revisions. Élise Roy contributed to the study design, data analysis, and manuscript revisions. Declaration of competing interest None. 7

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