Addiction and living in the shadow of death: impact of the body on agency and self-control

Abstract

Aims

To explore the lived experience of self-control by people with opioid and alcohol dependence.

Design

A longitudinal qualitative study.

Participants

The sample consisted of 69 persons with alcohol or opioid dependence, mostly from low socio-economic backgrounds in Sydney, Australia. People were recruited in both a detox facility and a maintenance treatment.

Measurements

Semi-structured interviews.

Findings

The bodily effects of substance dependence impact profoundly on the self-control of substance-dependent people. This change to self-control happens in two ways: by forcing substance users to take a local perspective on their lives, and by changing both their self-concept and their beliefs about what they can achieve. These bodily effects on self-control resemble other chronic diseases.

Conclusion

Understanding the role that the body plays in impairment of self-control in substance dependence can help to prevent these harms and contribute to overall recovery and well-being. Good quality health care, rendered by non-judgmental professionals, contributes immensely to the normative and diachronic agency of those struggling with addiction by minimizing somatic damage and damage to the self. Knowing how a loss of trust in one’s body can impair self-control may help health care professionals support people struggling with addiction in regaining trust in their body, future and self-control mechanisms.

Keywords:

• Self-control
• embodied agency
• diachronic agency
• disability bioethics
• opioid dependence
• alcohol dependence

Introduction

Loss of self-control in substance dependency is an highly debated subject. Firstly, there is a debate on whether substance dependency is defined by loss of self-control at all. Secondly, even among those that claim that loss of control is a defining feature of substance dependency, there is little consensus on how that loss of control should be defined. Often, different theories on substance dependency and self-control are presented as conflicting with each other, for example, is substance dependency weakness of will or a brain disease or are environmental factors like poverty and lack of future perspectives the most likely explanation for substance dependency?

Recently, philosophers have argued that we need a more elaborate view on self-control to understand loss of self-control in substance dependency (Kennett 2013b). Kennett distinguishes between different views on self-control. A standard view on self-control is that it is called for when we face temptations of which our better judgment tells us we should not give into. In this view we exercise self-control by willpower (Kennett 2013b). Most of the discussions on whether substance dependency is weakness of will or a brain disease depart from this view on self-control. Moralistic models argue that people with substance dependency are morally too weak to exercise their self-control (Peele 1987; Dalrymple 2006). Neuroscientific models on the other hand argue that repeated substance use changes the reward system in the brain, resulting in addictive behavior becoming conditioned learning to that extend that it is almost compulsive behavior, no longer reflecting the agent values but operating outside of conscious control (Robinson and Berridge 1993; Kalivas et al. 2005; Hyman et al. 2006; Field et al. 2009).

A second view on self-control argues that the above view is too synchronic, too strongly focuses on just resisting a temptation. However, there is an important diachronic aspect to self-control. There is a difference between doing what one wants, and wanting what one wants in the long run. Self-control is about consistently guiding our actions in a certain direction in order to reach long term goals that are important to us. As Meyers (1989) points out, ‘living for the moment without a care for the future is almost certain to diminish a person’s control over his or her life in the long run.’ (Meyers 1989, p. 117–118). Behavioral economic models, for example have argued that addictive behavior can best be explained as a conflict between local and global choices (Becker and Murphy 1988; Ainslie 2001; Heyman 2009). Substance dependent people are myopic, adopting a local perspective from which using substances is always more rewarding than refraining. Using substances gives pleasure, reduces pain, etcetera; refraining can cause withdrawal and anhedonia (Khantzian 1985; Berridge and Robinson 1998; Hatzigiakoumis et al. 2011). However, in the long run, repeated substance use is often counterproductive, but one only sees that when one adopts a global perspective (Becker and Murphy 1988). From a local perspective, people might seem to have self-control because they are doing what they want, however, they fail to reach their long-term goal, so diachronically, their agency is compromised.

Environmental theories like Alexander’s rat part experiment or Carl Hart’s studies on substance dependency, also depart from this view on self-control. When people grow up in poverty, violence and trauma, and have very little hope for the future, substance use can seem to be the most reasonable choice (Alexander et al. 1978; Hart 2013). In these contexts, people might have synchronic self-control (that is, they chose substance use); however, their diachronic options are so limited that they do not believe that they can exercise diachronic self-control.

A third view on self-control focuses on the normative aspects of self-control. This view focuses on the importance of the self for self-control. Our self-concept can determine our behavior. Miller gives the example of a smoker who picks his children up from school but finds out he has run out of cigarettes just before he reaches the school. Said smoker makes a U-turn to buy cigarettes first, even though his children stand waiting for him in the rain. At that moment he realizes: ‘I do not want to be a person who leaves his children out in the rain to buy cigarettes’, and he successfully stops smoking (Miller 2003). How we view ourselves determines what actions we find likely for ourselves (Hewitt 2000). An impaired identity in substance dependence, due to stigma can spiral down in more detrimental choices (Goffman 1963; Mcintosh and Mckeganey 2001; Koski-jannes 2002; Radcliffe 2009).

Distinguishing between these different views or aspects of self-control (synchronic, diachronic and normative), helps to see how the different views on loss of self-control in substance dependency can complement each other, rather than conflict with each other. In most cases, loss of self-control in substance dependence is a complex failure that involves all three aspects of self-control (Kennett 2001, 2013a; Horstkötter 2009). Most literature however, focuses on the synchronic discussion on weakness of will or the brain disease model. Secondly, the diachronic view gets some attention, mostly in relation to the synchronic discussion. However, although there is some literature on the normative view on substance dependency, or how identity influences self-control, this stream gets relatively little attention.

Also, little is known about how substance users themselves see their loss of self-control, in relation to these three aspects of self-control. Most qualitative studies only look at one moment in time, or one aspect of self-control, but how do substance users themselves see their dependency in light of their values, goals in life, life-stories, the development of their identity, and their opportunities in life? The aim of this study is to understand the lived experience of people with alcohol and opioid dependence. Are there aspects in their accounts that are not acquainted for in the expansive literature on substance dependency and self-control? Therefore, a longitudinal, qualitative study was designed to also understand the diachronic and normative loss of self-control that people might experience.

Method

The aim of the study was to evaluate how people with substance dependence perceived their self-control. The design was qualitative and longitudinal, as we also wanted to study the influence of substance dependency on diachronic self-control. Study participants (n = 69) were followed over a three-year period (baseline and successive 12 month follow-up). At baseline, all participants completed a time-line interview to narrate their life story (Berends 2011). They were also asked about their goals for the next year and any plans they had made to achieve their goals. Each year they were asked whether they succeeded in their goals, whether they had adjusted their goals, and what, if anything, had got in the way of fulfilling their goals.

Recruitment and interviewing took place in a public detoxification treatment and an opioid substitute treatment facility. The follow-up interviews mostly took place at the hospital connected to these facilities, but also in public places or at participants’ homes, according to the respondents’ preferences.

Respondents were between 23 and 64 years of age; most respondents were between 30 and 50. Around 70% were male (49) and 30% were female (20). This is representative of the treatment population in New South Wales (NSW), Australia. The focus was on alcohol and opioid dependency, since these substances have the highest prevalence for the in-treatment population in NSW, but a small sample of amphetamine users was recruited, so comparison with a stimulant was possible (Alcohol = 32, Opioids = 35, Amphetamines = 7, noting some overlap because of multi-substance use). Most of the respondents were Australian (50) and from poorer socio-economic backgrounds, with many lacking employment and permanent residential shelter.

Interviews were recorded, fully transcribed verbatim, and analyzed in NVivo. Participants were given a pseudonym. Qualitative data was analyzed at several levels: (i) interpretive content analysis, to identify typologies of ethical issues; (ii) thematic analysis, built on open and axial coding, to identify factors across different typologies; (iii) values-discourse analysis, to identify ethical frameworks and thinking strategies; and (iv) narrative analysis of case studies. All the data was analyzed by one researcher, who also conducted the interviews. However, the transcripts of the interviews were read by two additional researchers and the results of the coding were extensively discussed within the research team. A small sample of the data was also analyzed by two other researchers for internal validation.

The study was approved by the Human Research Committee of St Vincent’s hospital and Macquarie University. Written informed consent was obtained from all participants. They were reimbursed for their time and expertise.

See Appendix for more details on the methodology.

Several results emerged from the wider dataset al.igned to this study, we published earlier on the influence of stigma on identity, the role of pleasure in substance use, the importance of strategies rather than being strong-willed for control over substance use, and the importance of narrative identity. (Snoek et al. 2012, 2016; Kennett et al. 2013, 2014, 2018; Snoek and Fry 2015; McConnell and Snoek 2018). For this paper we analyzed a different research question, focusing on the role the body plays in impairment of self-control in substance dependency, which is a significant gap in the current literature on substance dependency and self-control.

Results

When respondents were asked of their plans for the future, many replied with something similar to: ‘I do not make any plans for the future, because I do not know whether I will wake up tomorrow’. In order to have diachronic plans, we need to trust that our body will carry us into the future. Many respondents had lost this trust; they stopped setting goals for themselves because they lost belief in self-efficacy. Self-efficacy is the belief that one will be inclined to succeed in carrying out one’s plans in a certain context (Bandura 1978). Respondents described several physical effects of their substance dependency on their bodies that resulted in them taking a more local perspective on their lives: lack of energy, feeling miserable, feeling marked by their substance use, and seeing many of their friends die from substance-related issues. Their testimonies bared striking resemblance to the testimony of those with chronic illness.

Testimony of those who have chronic, debilitating illnesses, like multiple sclerosis, cancer, HIV, or lymphangioleiomyomatosis (Charmaz 1991; Ciambrone 2001; Toombs 2001; Carel 2008; Frank 2010), describe how the changes in their bodies, and their changed expectation of their bodies, profoundly changed their relationship with time, other people, and their identity, and that these changes impaired their feeling of self-control. Their horizon suddenly shifted and they had to abandon long-term plans. The future was suddenly something they dreaded and they mourned their desired, no longer-available future self. Further, their tiredness and their miserableness forced them to take a local perspective on their lives. As their illness increasingly marked their body, others started to treat them differently: they became stigmatized. As they lost control of their appearance, they lost the ability to fully define their identity. The respondents in our study described similar ways in which their substance dependency changed (expectations of) their body and consequently impaired their diachronic and normative self-control.

Substance dependency and the disruption of the future self

Many respondents reported feeling as though they live in the shadow of death. When asked about their future, our respondents expressed uncertainty about how long they had to live. This fear concerning their physical longevity was either informed by current health problems or expected health problems. One respondent, David, said that his major life concern was that he felt he had no control over was his health. Other respondents had similar experiences:

Maybe the damage I’ve done to myself in those periods, yeah, it’ll come back to get me one day, it has to. (…) if I keep using I won’t get to there [points at 40 on the timeline] … and that’s a goal, sort of, to hit 40. (Dan)

Among the opioid dependent people was a strong fear of accidental overdosing: ‘I overdosed myself three or four times. I was lucky I’m alive from that’ (David). Although they could be drug-free for a while or stable on the maintenance program, one binge or relapse can be fatal, and they were reminded of this fact every time a friend or acquaintance of theirs died.

There’s 10 people that I went through rehab with [2.5 years ago] that are dead. (…) And they were good people. (…) a guy that I had a relationship with that was absolutely flying, that I thought was going to make it, died, you know, took an OD last year. (Robert)

Even those participants healthy at the time of participation reported that they had seen so many of their friends die due to substance related illnesses that they had no illusions about their prospects.

My first friend killed herself in 1997 and since then I’ve been to like 30 funerals, 40 maybe. (Diane)

[T]here’s 12 of us started out together. And I think two are in institutions and the rest are dead. (…) I’m counting my blessings there. Any time that could have been me. (Tom)

I’m still alive. Half the guys I grew up with (…) are all dead from either overdoses or other medical problems. (…) Another mate was on methadone for over 20 years and all his organs just packed in. (…) I saw him two days before he died (…). He was just a skeleton. It freaked me out. (David)

All my family died from grog, all my brothers, sisters, my mum … I found (…) my mum dead on the floor. (…) There’s nothing at home for me anymore. Back home they’re all buried. (Michael)

When asked about their future, some respondents expressed that their health problems prevented them from making long term plans.

[M]y medical conditions like my kidney problems you know, they could get worse so I just take it a week or so at a time at the moment. I’m not really planning the future at the moment so I don’t think about it at all really. (Troy)

[B]ut as far as long term goals, mate, I haven’t got any at this stage, yeah, like to stay alive that’s the main one. (Dan)

When asked where he saw himself in a year’s time, one respondent replied:

Alive. Alive, I guess. Even that I don’t know if I believe so yeah. (Olivia)

This empirical research showed that substance dependent people, even those in recovery, have very little trust in their longevity. This lack of belief in longevity was caused by: current health problems, the fear that their former lifestyle will suddenly take its toll, or, otherwise, the experience of being confronted with their own near-overdoses and the overdose-related death of friends – particularly those in recovery. This concern for their own longevity affects their ability to engage in long term projects that are important for meaningful and flourishing life.

Substance dependency and feeling miserable

Pain and fatigue frustrate goal-directed behavior because we feel too rotten to do anything else other than get through the day. Baumeister and colleagues found that when people feel miserable, the goal of feeling better gets priority over other goals (Tice et al. 2001; Baumeister et al. 2007). Trying to alleviate distress prior to pursuing long term goals is a good strategy if there is an easy way to resolve misery, by, for example, eating or taking a nap. However, when our feelings of misery are more persistent or even chronic, this local perspective that works in some instances can, in alternative circumstances, further frustrate our ability to gain control over our lives. Respondents repeatedly described how feeling miserable made it harder for them to exercise self-control and pursue long-term goals. When asked about his future and life plans, one respondent replied:

I can’t really think that far ahead. I just want to try and get myself better and then once my head’s clear I’ll be able to think a bit clearer on what I want to do. (Paul)

it’s just too much (…) not being able to sleep and maybe not eating properly, all those things, being tired and stressed and the alcohol. (Bob)

Many respondents described feelings of low mood and energy when they were in recovery. Feeling miserable de-motivated them and made them care less about their future. Chronic substance dependence can deregulate brain chemistry for such an extended time, that people in recovery describe a state of anhedonia long after they quit using (Hatzigiakoumis et al. 2011).

Substance dependency, stigma, and self-stigma: the body as a looking glass

Respondents described how their substance use changed their bodies and made them lose definitional control over their identity. We asked respondents if they saw themselves as the same or a different person pre- and post-substance abuse. Some people explicitly describe themselves as a physically different person.

I feel different from everyone ‘cause I have all this (…) sickness in my body (…) the heroin is gone, but the sickness stays there. (Hien)

I mean of course it affects your identity at the time when you’re under the influence, or someone’s identification of you. (…) This is not the person that my wife married you know? I know I’m luckier than a lot of other people (…) I got genetics that have kept me looking reasonably okay. (…) But yeah, it affects you in a lot of negative ways. (Nick)

when I was using drugs (…) I wasn’t comfortable in my own body I hated myself, I wouldn’t even look in the mirror, I hated looking at myself. (…) like I'd look in the mirror and I’d see like a drug addict (Jeffrey)

Some described being worried about the marks and scarring drug use left on their arms. They literally felt marked. Goffman (1963) notes that being marked is the original meaning of stigma. The Greek term ‘stigma’ refers to the sign criminals, slaves and traitors had burned or cut in their flesh in order to identify them as immoral or tainted people. Many substance users felt marked in a similar way:

I look at my arms and I think God blimey, who wants to go out with that? (…) But that affects me, do you know what I mean? Like I can’t wear short tops, I can’t … just can’t be a normal person anymore. (…) I’m repulsed by what I have and it’s a scar that’s going to be with you for the rest of your life and you’ll always be reminded of it every day you want to put clothes on. (Brenda)

I just want to be able to do what everyone else does, (…) and unfortunately I’ve got marks from my using (…) if I was doing customer service for example a doctor would know that I used to use and I don’t know if it would help me get a job, (…) there’s a lot of things I’d have to do to make myself feel presentable enough. (Diane)

Some people state that they see themselves as a different person because other people treat them differently, with this was related to the fact that their appearance changed.

I’m different because people on the street they look at you different. (Nabil)

I know I stand out a bit and when I go to say Westfield … (…) I mean I’ve got on first name terms almost with security there and security in my local area (…) I did struggle about that a little bit. I have pulled some of them aside and said look mate, I know you’re watching me, like (…) I’m not looking to cause any trouble I’m just doing what I’ve got to do (Bob)

People look a different way to you and they judge you, they’re scared of you, lots of things. (…) Different from oth … normal people. (…) you’re really low, you’re just like nobody. (…) you’re dirty and no-one trusts you. (Hien)

The phenomenon of self-stigma is often described in substance dependency (Buchman and Reiner 2009; Matthews et al. 2017). Seeing oneself as damaged goods and/or being treated so by others, makes people lose faith in their ability to live the life they value living and be the person that they value being. They feel that certain options are no longer available to them, whether it be finding a job or shopping in peace.

Summary

This paper explores the loss of self-control experienced by substance dependent people from a low socio-economic background in Sydney, Australia. While some of the findings may be particular to the inner-city context in Australia, the study offers important insights into the phenomenology of the loss of self-control in substance dependence and how best to conceptualize loss of self-control.

When looking at substance dependence and self-control, self-control is often understood as an ability to resist the temptation to use substances. When we look at the lived experiences of people who struggle with substance dependence, we see that their ability to exercise self-control is threatened in more complex ways than resisting temptation alone. In this paper, self-control is split into three levels: synchronic (doing what one intended in the moment), diachronic (reaching long-term goals) and normative (living according to one’s values and concept of the good life). Self-control is more than just resisting substance use, it is also about reaching long-term goals, and being able to live the life one values and being how one values being. When we unravel the concept of self-control across these different levels, it becomes apparent that the loss of self-control in substance dependence is a complex impairment that simultaneously occurs at several different levels. For example, repeated substance use can change the brain resulting in attention bias, incentive sensitization and craving that makes it difficult to exercise synchronic self-control. Poverty can further problematize the adoption of a global perspective on one’s life and the exercise of diachronic self-control. And stigma can result in loss of normative self-control. This empirical study shows how bodily changes, caused by addiction, can impair people’s diachronic and normative agency by influencing their ability to set long term goals along with their sense of self and expectations of themselves.

Changes to the body due to substance dependence push people toward a local focus on their lives because they feel too miserable to invest in the future and are uncertain if they can trust their body to carry them into said future. Although there is much literature on how people with substance dependence tend to be more present-orientated (Marsch and Bickel 2001), this is often only attributed to the effect of substance use on the brain (the reward system taking over the prefrontal cortex). The fact that people feel like they are living in the shadow of death, that they feel physically vulnerable, or that they feel too miserable to make plans, is overlooked.

People with substance dependence also describe how they feel physically marked by their substance use. Substance use changed their appearance and, consequently, others started treating them differently. The respondents felt like they lost control over their identity and ability to define themselves. With a certain identity comes certain possibilities, and an impaired identity means that some opportunities for jobs or social contacts feel no longer available. A forced negative social identity makes people revoke their self-concept, not necessarily based on what they are or what they can do, but based on what other people think they are and can do. They internalize the stigma against them. These factors result in people adjusting their self-image and their ideas about what is possible in their lives more negatively than is necessary.

Discussion: why the bodies of people with substance dependence matter

Although there is a vast amount of medical literature that emphasizes the physical changes due to substance use,¹ there is almost no literature on the lived experience of substance users regarding their bodies and how the body influence their agency.² Why are the bodily experiences of substance users ignored so much? The lay opinion of most, including scientists, is that substance users do not care about their health (Moore et al. 2017). Why else, after all, would someone continue to use substances, while knowing the risks to their health? In addition, somatic changes strike observers as self-inflicted. The change wrought on the body caused by substance use, and the negative effects on health, are allegedly the price users are supposed to pay for their choices (Foddy and Savulescu 2010). Yet with many other disorders – for example, anorexia or self-harm – we take the harm that the disorders cause to people’s bodies very seriously. One can speculate that the moralistic condemnation of substance users can explain this neglect of the body in debates concerning addiction. In many countries, there seems to be reluctance to invest in proper harm reduction or overdose prevention measures, despite the evidence of their effectiveness. Maybe this is caused by an implicit judgment that people with substance dependency do not have valuable futures that should be invested in. Keane argues that we often conditionalize care based on moralized norms of health and abstinence. The future of ‘addicts’ only matters when it is an abstinent future (Keane 2021).

In the philosophical literature on diachronic agency, it is often stated that people with addiction don’t know what to do with their lives, hence they have a myopic view of their lives (Dalrymple 2006). However, the empirical data shows that they do have a diachronic vision but fear that they do not have a future.

Critical social studies of addiction have raised awareness of the fact that addiction science narratives shape the response of users (Davies and Baker 1987; Davies 1997; Dennis 2017; Keane 2021), especially the science narrative that addiction is a disease that can strongly influence how people narrate their experiences with repeated substance use (Davies 1997; Reinarman and Granfield 2015). Attached to this disease-narrative are the sub narratives that addiction and self-control, addiction & health and addiction & pleasure, are antithetical, and that addiction is linked to impaired identity (Dennis 2017; Moore et al. 2017; Keane 2021). Davies’ (1997) pioneering work has highlighted how users may discursively construe addiction in relation to dominant available knowledge that may color how they construe agency. This entails the risk of self-reinforcing research wherein respondents shape their experience according to dominant frameworks and hence reinforce said frameworks.

My research question centered on how people with substance dependency experienced their self-control, hence strongly connecting addiction to (loss of) self-control. Posing this question may have shaped the narratives of the respondents according to this framework. However, we did not find the disease model of addiction, or loss of control narrative, to be dominant in the stories of the respondents. In contrast the qualitative data contributes to a more nuanced perspective on self-control. This may have been caused by the fact that the interview questions invited respondents to tell their life stories rather than just focusing on their substance use. Similarly, there is no indication that the respondent’s views were shaped by preexisting frameworks about addiction and health being antithetical, since the respondents described several personal experiences where they were confronted with the passing of using friends or family members, their own ill health, and nearly fatal overdoses, thereby providing rich descriptions of experiences with illness and death, and how this influenced their diachronic agency. We did not find much ambivalence regarding health, as Dennis found in her pleasure study (Dennis 2017). Although not all respondents experienced ill health, those who did were not ambivalent about their experiences.

Some have criticized the addiction/health binary, stating that the relationship between addiction and health is more complex, and consumers have more self-control than is often assumed (Moore et al. 2017). Moore and colleagues highlight that although some of their respondents saw their substance use as incompatible with health, others described strategies to consume and maintain their health (exercise, eating and sleeping well, taking regular breaks from using), or using a variety of substances to improve their health. However, it seemed that the population Moore and colleagues recruited through flyers had more stable socio-economic backgrounds than our research sample. It is especially notable that those recruited through detox were in a ‘rock-bottom’ state, in which they felt physically and mentally drained.

Others have criticized this often implicitly assumed connection between health and the good life. De Maeyer et al. (2009) criticize the fact that quality of life is often measured in relation to health (so-called Health Related Quality of Life). They explore what quality of life means for substance users, apart from being healthy (De Maeyer et al. 2009). Their research revealed three key domains of quality of life of substance-dependent people that seemed more dominant than health problems: personal relationships, social inclusion, and self-determination. The inability to change one’s life was associated with lower quality of life. Having at least one good friend and a structured daily activity had a positive impact on quality of life (De Maeyer et al. 2011). However, as we saw in this empirical study, the three domains of quality of life the authors distinguish from health are partly mediated through health. Being in bad health makes it harder to have personal relationships, to be included in society, to have structured daily activities and to determine one’s life. This might explain why substance users in general report very low quality of life compared to non-addicted people, and to people with mental illnesses (Bogart et al. 2007; De Maeyer et al. 2010; Sirgy 2012). How can the insights of this study contribute to recovery or better well-being of people with substance dependence? The findings show the importance to eliminate stigma from health professionals toward people with addictions, so that people with addictions can receive better physical care (Livingston et al. 2012; Bartlett et al. 2013). We should have the same amount of compassion for the health care problems of people with substance dependence as for those with other chronic conditions. For example, in drug consumption rooms, where individuals are valued as they present, consumers later go on to develop better self-esteem and self-concept (Shorter et al. 2022) which can restore their normative agency and their control over how they define their selves, rather than feeling physically marked by their use.

The findings also emphasize the importance of harm reduction strategies. Rhodes’ framework of the risk-environment can be helpful here, as this focuses less on individualistic modes of behavior change and more on promoting community action and environmental change (Rhodes 2002). Good quality health care contributes immensely to the normative and diachronic agency of those struggling with addiction by minimizing somatic damage and damage to the self. These findings also show the importance of supporting people in recovery in regaining trust in their body and their bodily future.

Conclusion

This study demonstrated how our self-control is importantly dependent upon, and is constituted by, our body. It showed – much in line with what we know from the literature on disability bioethics – that the bodily effects of substance dependence impact profoundly on the self-control of substance dependent people by changing their trust in their future and their self-concept. The stories of our respondents – about the many funerals of friends they attended, seeing friends and sometimes multiple family members die due to addiction related health problems, as well as those of people stable in recovery and others with experiences with overdoses – strongly made them doubt their future, even if they were feeling healthy. The insecurity around their body and health impacted their motivation to exercise their capacity for self-control and influenced their self-concepts. We don’t only have a body, our body determines our possibilities in life, and hence our agency.

Due to stigma surrounding addiction in health care professionals but also in the medical literature, the health consequences of repeated substance use are often described as one’s ‘own choice’, a price they must pay for their use, rather than a harm reduction problem that if tackled can greatly scaffold their agency. People with substance dependence deserve compassion for their health problems, just like other people with chronic diseases.

Ethical statement

This paper is in line with the ethics and integrity policies. I state that this work is my own, and has not been submitted elsewhere. The study was approved by the Human Research Committee of St Vincent’s hospital and Macquarie University. Written informed consent was obtained from all participants. They were reimbursed for their time and expertise. Permission to reproduce material from other sources: not applicable.

Acknowledgments

A special thanks to the respondents who shared their stories, and to Hanna Pickard, Jeanette Kennett, Neil Levy, and Annie Bleeker for their valuable feedback. I would also like to thank Jai Galliott for his rigorous editing. Funding for this study was provided by the Australian Research Council (DP 1094144).

Disclosure statement

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

Data availability statement

Sharing data from qualitative research, might endanger the anonymity of the research participants. Since they give very detailed accounts of their lives, and because they are such a highly stigmatized group, we decided not to make the data available.

Additional information

Funding

Funding for this study was provided by the Australian Research Council (DP 1094144). The funding sources had no role in the study design, collection, analysis or interpretation of the data, writing the manuscript, or the decision to submit the paper for publication.

Notes

1 Alcohol use is associated with more than 60 medical conditions (Rehm and Bondy 1998; Vaillant 2009; Lokkerbol et al. 2013; World Health Organization 2014). Several studies have outlined a high mortality rate amongst substance-dependent people (Vaillant 2009; Ericsson et al. 2013), some estimating a death rate as much as 50 to 100 times higher than the general population (Hser et al. 2001), depriving people of approximately 44 years of life, of which 29 are before the age of 65 (Degenhardt et al. 2014).

2 A literature search on the role of embodiment in addiction revealed a very limited use of this concept. Most literature can be found in the literature on symbolic interactionism, which looks at how the embodiment of addiction changes the relationships to others (Weinberg 2002; Duff 2007; Hellman 2012). There is another small stream of literature that focuses on addiction as an embodied custom (Schlimme 2010; Nettleton et al. 2011), but the emphasis is on addiction as a custom, rather than embodiment. A third stream of literature describes the addiction neuroscience as a turn to embodiment (Netherland 2011), but the neuroscientific literature focuses only on one part of the body: the brain.

Appendix

Methodology

Below, a more detailed description of the methodology is provided, based on the COREQ (COnsolidated criteria for REporting Qualitative research) Checklist ((Tong et al. 2007).

Research team

The research was conducted by Anke Snoek, who had a master’s degree in Humanistic studies, where she had an extensive training in qualitative interviewing, including software to analyze the data. The researcher was from the Netherlands, and did the research in Sydney, this helped to collect rich data, as the researcher had very few presuppositions and respondents were willing to give elaborate descriptions of their lives. The researcher had the idea that being a young, female researcher was benevolent for the interviews as respondents perceived her as non-threatening.

Study design

The method of interviewing was modeled on the work of Carl Rogers, in the sense that it was fundamentally non-judgmental, respondent-centered and – within the limitations of a semi-structured interview – it is nondirective. This way of interviewing enables the respondent to express the themes that are important to them, while keeping biases of the researcher to a minimum (Rogers 1945). Importantly, the interpretation of the data happened in collaboration with the respondents. During the follow-up interviews we invited the respondents to interpret their own stories and validate our interpretations. This way of interviewing and analyzing ensured that respondents were treated as experts on their own lives.

The analysis is based on the principles of grounded theory, or more precise, constructivist grounded theory (Charmaz 2011). Analysis mostly happened bottom up from the data, rather than using the data to confirm a hypothesis. Although traditionally grounded theory requires approaching the data tabula rasa with regard to theory, a more recent stand in grounded theory rather requires us to approach the data with ‘theoretical agnosticism’, and subject our earlier ideas to rigorous scrutiny – or, as Charmaz states, the literature has to earn its way in (Henwood and Pidgeon 2003; Charmaz 2011).

Participants were selected partly purposive, and partly convenience. They were approached face to face, and for the follow up interviews mostly by telephone, or other preferred mode of contact (email). Some were approached for the follow up by running into them around the methadone clinic. Only one person dropped out during the consent phase of the study, because he did not want to sign the consent form because he ‘didn’t trust it’. Tracking participants down for the follow up interview proved challenging. At both the second and third interview, 28 of the 69 respondents were successfully reached. At the fourth round, however, only 20 remained. A total of 18 people completed all 4 interviews, and 33 participated in at least two. The main reason for interview drop-outs (90%) was that people were untraceable. Both their own contact number, as well as that of loved ones, was repeatedly not answered or out of order. In addition to this, two of our participants died. In two instances participants were unable to do one or more of the follow ups because they were incarcerated. A total of 69 respondents participated in the study.

The data was collected partly in a methadone clinic, and partly in a public detoxification facility. Only the researcher and respondent were present at the interview. Respondents were between 23 and 64 years of age; most respondents were between 30 and 50. Around 70% were male (49) and 30% were female (20). This is representative of the treatment population in New South Wales (NSW), Australia. The main focus was on alcohol and opioid dependency, since these substances have the highest prevalence for the in-treatment population in NSW, but a small sample of amphetamine users was recruited, so comparison with a stimulant was possible (Alcohol = 32, Opioids = 35, Amphetamines = 7, some overlap because of multi-substance use). Most of the respondents were Australian (50) and from poorer socio-economic backgrounds, meaning that they did not have jobs, and many of them were homeless.

The researcher used a semistructured interview. The questions were tested among colleagues with extended experience with qualitative research. There were four rounds of follow-up interviews. The interviews were audio recorded and transcribed ad verbatim, no visual recordings were made. The researcher also made field notes directly after the interviews, of her observations, and to capture the non-verbal information during the interviews. The interviews lasted around 60 min.

Saturation was reached when no new codes emerged during the coding of the interviews. During the first round of interviews, this happened after I interviewed the 30th participant. However, we decided to recruit past the saturation, since we expected a high drop-out. So we recruited at least double the number. During the coding of the last round of interview, saturation was reached again. The transcripts were returned to the respondents on demand, but during the follow up interviews, they were presented some of the findings of the analysis and invited to reflect on them and nuance or adjust them.

Analysis and findings

One researcher mainly coded the data, but two researchers coded a sample of the interviews to test for inter-rater reliability. Since the data set was so extensive, it was hard to grasp in one coding tree. Instead we chose to extensively report on the main themes in separate papers. So this paper only focus on the role of the body with regard to the self-control of people with substance dependency. The themes emerged from the data, bottom up. The software package Nvivo was used to analyze the data. Participants provided feedback on the findings during the follow up interviews. Quotes from several interviews are used to illustrate the points made. All quotes have a participant number.