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Disease and decision

  • Kirsten E. Smith
    Correspondence
    National Institute on Drug Abuse, Intramural Research Program, Real-world Assessment Prediction, and Treatment Unit, Translational Addiction Medicine Branch, 251 Bayview Blvd. Suite 200, Room 01B340, Baltimore, MD 21224, USA.
    Affiliations
    Real-world Assessment, Prediction, and Treatment Unit, National Institute on Drug Abuse Intramural Research Program, 251 Bayview Blvd, Baltimore, MD 21224, USA
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Published:September 08, 2022DOI:https://doi.org/10.1016/j.jsat.2022.108874

      Highlights

      • Being addicted does not mean that a person considers themselves to be in recovery.
      • Moderated alcohol and drug use after addiction is achievable for some.
      • Many addiction treatments do not adequately consider the patients' desired goals.
      • Lived experiences of drug use can help scrutinize disease models of addiction.
      • A brain disease model of addiction may unintentionally harm and stigmatize people.

      Abstract

      At age 16, I injected morphine for the first time, and then started injecting heroin. By most standards, I was highly functioning, although I eventually became addicted. I was and remain socioeconomically privileged, but my relationship to heroin resulted in behaviors and consequences that I never could have conceived of, and which I sometimes strain to remember occurred. My life now is stable and conventional. Some aspects of my past addiction are unerasable, but the most salient of those are the social and legal consequences of having a criminal record—not any hallmarks of a chronic brain disease or disorder. I do not consider myself “in recovery.” Rather, I am recovered, by standards both my own and derived from clinical nosology. I have been in sustained remission for over a decade. Yet feelings are not facts, as is often said. I still use alcohol, and occasionally (though not recently) I have used other drugs, so there remains the possibility that my brain is indeed “diseased” and I am not objectively recovered, my self-assessment notwithstanding. My aim in writing about my lived experience of drug use, addiction, and recovery is to highlight the heterogeneity of people's experiences and the insight that personal narratives can provide. Debates about the brain disease model of addiction are often confined to academia, with the real-world, unintended consequences of the “disease” label seldom considered. Stigmatization of people with addiction comes from moralizing about drug use but may also originate from well-intended labels. I posit that we should not need labels to care about addicted people and make scientifically informed treatment accessible. Addicted people deserve help because they either need or want it, regardless of labels that presume to describe the etiology or likely trajectory of their problems. I conclude that some labels, even those needed for clinical classification of human behavior, may be pernicious. Clinicians and researchers have an obligation to reflect more deeply on the implications of the disease conceptualization of complex human behaviors such as addiction.

      Keywords

      If someone were to have administered a polygraph to my 22-year-old self and asked me if I wanted to stop injecting prescription opioids and heroin, I would have replied, at times tearfully, “Yes.” It would not have been a lie. Yet within minutes or hours, my actions would have indicated otherwise.
      My drug use was something that I wanted both hedonistically and philosophically; it was a lifestyle choice that I romanticized and from which I suffered few initial negative consequences. In the early years, my decisions to use were consonant with my desires and intentions. Through one decision at a time, though, the nature of my relationship with drugs changed. But there was no discernible point on that primrose path that differentiated the transition between a time when my decisions to use aligned with my intentions from a time when my decisions to use were discordant with my intentions.
      The dissonance between my desires and intentions, on one hand, and my decisions and behaviors, on the other, is how I describe my addiction. It is the place where I wished to do otherwise but could not. It was the real-time, rapid cognitive reshuffling of my ranked desires and intentions: proximate desire (e.g., feel the sensation of injecting heroin; avoid withdrawal), overwhelmed distal desires (e.g., have a family; have a meaningful career), and the intention formation and behaviors needed to obtain them (e.g., not use heroin daily). I desired, and intended to attain, a successful life that could likely come, for me at least, from not injecting heroin multiple times daily. Yet I continually made decisions that undermined my plans for the future.
      My intention formation during active addiction was myopic and uninformed by the introspection and prospection needed for behavioral change. At the apex of my opioid addiction, all moments were the present moment. How I felt, or wanted to feel, in the moment, enabled the rationalization of decisions or behaviors that did not otherwise align with my more distal intentions. Future rewards or adverse consequences were not salient. Every use was “just one more time.” Accordingly, intention formation was reduced to a form of doublethink to facilitate feeling good, or avoid feeling bad. My addiction at that point was not driven by drug “craving”; why would one crave what they continually have? My addiction at that point was not driven by compulsion.
      At least not for opioids. However, for cocaine, which was not my preferred drug, but a drug that I would use for a night every 2–3 weeks, I would posit that within each use episode, my desire, intention formation, and decisional capacity were diminished acutely, in a way that was distinct from my diminished decisional capacity with respect to opioids. I would continue to dose cocaine repeatedly even when I wanted to stop—or, more precisely, when I wanted to want to stop. I felt propelled to continue taking cocaine even though I did not necessarily enjoy it, until there was no cocaine left. Because I did not value cocaine, I was able to refrain from going out to purchase more. Had more cocaine presented itself, I would have likely continued to use despite no longer enjoying its effects and despite not wanting to want to continue use. This is the state closest to compulsion that I have experienced, and I have found it to be unique to short-acting stimulants.
      1At least not for opioids. However, for cocaine, which was not my preferred drug, but a drug that I would use for a night every 2–3 weeks, I would posit that within each use episode, my desire, intention formation, and decisional capacity were diminished acutely, in a way that was distinct from my diminished decisional capacity with respect to opioids. I would continue to dose cocaine repeatedly even when I wanted to stop—or, more precisely, when I wanted to want to stop. I felt propelled to continue taking cocaine even though I did not necessarily enjoy it, until there was no cocaine left. Because I did not value cocaine, I was able to refrain from going out to purchase more. Had more cocaine presented itself, I would have likely continued to use despite no longer enjoying its effects and despite not wanting to want to continue use. This is the state closest to compulsion that I have experienced, and I have found it to be unique to short-acting stimulants.
      My intention formation and decision-making around drugs were, however, constrained by my expectation of reward: most of my behaviors produced rewarding outcomes with few negative consequences. This, coupled with an unchanging environment, a desire to avoid withdrawal, and an unrealistic belief that my future would be precisely as I wanted it to be, contributed to my continued use. In my stubbornness and optimism, it never occurred to me that anything horrible would happen, or that when the time came when I might wish to stop, that I would be unable to.
      When I was 19, my parents discovered my use and compelled me to complete a 28-day inpatient program. After completing it, I remained sober for one month before I resumed use. Although I held a job, had stable housing, and was enrolled in school, I injected opioids daily. I made no progress and lived a life of solipsism and deceit. By age 23, I desperately wanted to quit. After several failed quit attempts, I told my parents that I was still using and asked for help. My stepfather called the insurance company; he was informed that no substance use disorder (SUD) treatment would be covered because I had already been to a program (this was prior to the Affordable Care Act). Unable to afford treatment for me, my parents watched over me for a month in their home. I maintained myself on a diet of alcohol and benzodiazepines, but did not inject.
      Returning to my apartment, I returned to using opioids. Those last months of addiction, during spring 2007, were when the suburban cohort of heroin users I belonged to experienced an HIV outbreak, after a wave of hepatitis C had already washed over us. Thankfully my then-boyfriend and I were spared. During those months, I saw my first Suboxone pill, procured by my boyfriend during one of our quit attempts. We attended 12-step meetings, but they were ineffectual for us. After being acutely intoxicated at work, I was (understandably) fired. Therefore, I needed money. Therefore (in a progression that seemed logical at the time), I robbed a bank. A month later, my boyfriend robbed another. We were caught that day. My life since has been divided into The Before and The After.
      The After began with detoxing in jail followed by pre-trial house arrest. I was placed on a curious cocktail of prescription drugs. Eventually, intoxicated on alcohol, I broke house arrest to find heroin. I wrecked my stepfather's car in the process. At the hospital, the emergency doctor wired my teeth back in place. I awoke bruised and terrified the following morning in a county jail cell. Nine months passed in that cement bunker. I watched, horrified, in the cell's shatterproof mirror as my face changed to that of some Gollum. I looked worse in jail than during any time of drug use. I suppose that is what chronic stress and not seeing the sun for nine months does. No medical care was offered in jail, so I removed the wire from my teeth with a fork.
      The primary factors associated with my eventual “quitting” included complete physical separation from drugs. In federal prison, I did not have access to drugs; I could not have chosen to take them even if I had wanted to. During my first year incarcerated I craved drugs in the manner that “craving” is typically conceptualized (e.g., urge, want). The character of craving during that first year of abstinence was unlike any experience of it since: predominantly visceral. Over time, it became predominantly cognitive, albeit with variation. The only quasi-visceral craving after that first year has been occasional cue-induced craving from specific music.
      The judge mandated that I participate in a “Residential Drug Abuse Program” during my time in prison, and in counseling when I re-entered the community. I was 27 when I was released. The counseling did not begin until 11 months after my release. By then, at 28, I had relocated to a state where I had no family or support. This move was necessary because my hometown university would not readmit me—not for academic reasons, but because I was on probation. The university knew this because their application had a felony checkbox. I appealed their decision, to no avail. The university I eventually attended did not have that checkbox. Its absence permitted hope and opportunity. School was my salvation. After my period of mandated treatment, I did not voluntarily continue. At that point, I did not need help addressing SUD symptoms, but rather help addressing the stress and challenge of rebuilding my life.
      Experiencing the patient side of SUD intervention before, during, and after incarceration influenced my decision to become an addiction therapist. Experiencing the provider side of SUD intervention during my clinical training later influenced me to become an addiction researcher. Although I wanted to help others, I was uncomfortable with the prospect of working within systems that do not provide individualized care or evidence-based intervention. Before my clinical training, I assumed the reasons that I was (as a patient) never asked to define my treatment goals or to articulate my desired outcomes was that my treatment experiences were mandated. However, during my clinical practicums in SUD treatment centers, I discovered that those questions often go unasked of people who seek help voluntarily, too. Clinic staff announce what is on offer without discussing other approaches. Take it or leave it. That was and is the character of informed consent for people with SUDs, irrespective of felony status.
      In most treatment settings, abstinence pervades as the sole acceptable clinical outcome. People's values, preferences, and hopes are of less concern. My treatment was based on an oversimplified notion that people with addiction are homogeneous. It was also based on the idea that people with SUDs have a chronic, relapsing disease with no capacity to control use. This conceptualization felt wrong to me at the time—and my experience has shown it to be wrong. I saw this same oversimplified model applied to countless others during my clinical training.
      To restate this, because I think it's important: my exposure to SUD treatment, on the receiving and providing end, left me with the impression that many medical and community-based SUD providers do not routinely ask addicted people what they want. In some settings, addicted people are actively discouraged from wanting something or from being vocal in defining their recovery. If they try, they are told that they are selfish; that their character defects and thinking were what got them into trouble; and that thinking for themselves is dangerous.
      Even in some scientifically informed approaches, people with addiction are told that they will always be such, that their disease or disorder is chronic. The unintended stigma associated with “chronic brain disease” seems perennially lost on many smart, kind, and well-intentioned clinicians and researchers. Yet I know people who were not well served by internalizing the idea that they were chronically “diseased” and that relapse was therefore inevitable. Their self-efficacy beliefs were formed by descriptions of permanence, not descriptions of the dynamic and complex nature of the human brain and of the interplay between the brain and environment that facilitates new learning, behaviors, and memories. I have known others who died in part from believing that recovery was all or nothing, that they had to conform their goals into what others told them the shape of true recovery was, and who, in some cases, refused life-saving medication that could have helped them.
      Ultimately, my stubbornness saved me. At first, like others, I attempted to shape my recovery into what was expected. However, the cognitive dissonance grew too great as I continuously experienced what I was told was improbable, and as I began to trust, and benefit from, my thinking. I am not offended by the idea of having a diseased brain, if that is the case. Indeed, wholesale pathologizing of one of the most complex things in the known universe (the human brain) is parsimonious; it is simple and satisfying. It is also easier to explain than what my phenomenology suggests, which is that there is no method for discerning when a person has the chronic brain disease of addiction and when they do not. Where precisely on that primrose path did my brain become diseased? When did I stop being an agent making decisions, however constrained they might have been? Although my desires, intentions, choices, and decision-making capacity became increasingly constrained by environmental and individual factors that developed from continued drug taking, a decision always preceded what remained voluntary behavior.
      Note that agency and volitional behavior (versus involuntary behavior) are not to be confused with the Augustinian concept of “free will”.
      2Note that agency and volitional behavior (versus involuntary behavior) are not to be confused with the Augustinian concept of “free will”.
      My lived experience, and my interactions with thousands of addicted people, suggests that there are degrees of freedom for volitional behavior related to drugs and nondrug alternatives that do not readily map onto some constructs and models that addiction practitioners and researchers use. This gap, between lived experience and systematic study, must narrow.
      My experience also suggests that the heterogeneity of addiction is matched by the heterogeneity of what follows addiction. I do not use the term “in recovery” to describe myself. I have been told that I meet the definition even if I do not embrace it. Respectfully acknowledging this, I would posit that I am recovered, not on a continual journey. If pressed on terminology, I would suggest that I am in “sustained remission.” I have used alcohol and, on occasion, other drugs since my nadir, but have not met SUD diagnostic criteria in 14 years. Among my periodic opioid use events, only one would I consider a “lapse.” The others I would consider planned use events that involved sustained preparation to execute as safely as possible. Although some may term them “lapses” (or “planned relapses”) they were hardly indicative of compulsion or haste. Was this disease or decision? Was it both?
      The factors associated with my maintaining control over opioids on the few occasions that I used them since being addicted are too many to count. However, they can be roughly divided into environmental and person-level factors. Environmental factors include living in a home and neighborhood where drugs are neither pervasively used nor readily available: without being surrounded by people who use drugs or try to sell them to me, I would have to invest time and effort to acquire them. I live in a city where they are accessible, but purchasing them from strangers is not simple, safe, or convenient. Such an errand does not fit into my routine. Relatedly, and more importantly, I now have too many things that I prefer to give my time and attention to, other than acquiring and using opioids. Since my release, I have had an ever-increasing availability of nondrug choices and ever-increasing opportunity costs associated with use.
      With the rise of fentanyl-adulterated heroin, the risk of incurring one particular opportunity cost (loss of life), cannot be overstated. Thus, fear has also served as deterrent.
      3With the rise of fentanyl-adulterated heroin, the risk of incurring one particular opportunity cost (loss of life), cannot be overstated. Thus, fear has also served as deterrent.
      I am extremely fortunate in this respect. The longer I have been in remission, the more rewarding opportunities (e.g., school, fulfilling career, athletics) have emerged. The more I engaged with these opportunities, the less desirable becoming addicted again seemed. Life became not only bearable, but good and imbued with meaning. This accrual of access to nondrug rewards is a commonly cited mechanism for a sustained transition away from addiction. However, from discussions with addicted or formerly addicted people, I know that seemingly insurmountable barriers can exist between drug abstinence and access to nondrug rewards. For those people, the barriers can cause anger, hopelessness, resentment, and a return to addiction. My deep gratitude for the opportunities available to me has been another individual-level factor associated with my maintaining control over drug use. I desire to be the version of myself that I always imagined that I could be. I want to make my family proud and myself proud. Not every addicted person is given those kinds of opportunities.
      Therefore, as I matured, I was increasingly driven by a strong desire to help others and improve the world after availing myself of so many of its best things. That gave me a purpose that I knew I could not actualize if I injected heroin daily. Therefore, I undertook my few occasions of planned use with the understanding that even semi-regular use was unthinkable. I knew that I could not do the work I wanted or keep the life I had if I were to become addicted. This calculus of controlled, infrequent use, was facilitated in part by a high internal locus of control and well-developed self-efficacy beliefs; I believed that I had the capacity to shape my life through my decisions. Having been in remission for years at the time of my first use event since quitting, I had the volitional capacity to make decisions that were less constrained. I am doubtful that I would have been able to moderate my use through flexible and thoughtful decision-making during active addiction; the cognitive capacities needed for adaptive decision-making were unavailable to me then. My controlled, highly infrequent use was also facilitated by the fact that it was driven less by hedonism than by curiosity, and that any pleasure I was hoping to experience remained elusive. Lingering curiosity about how using would feel was satisfied by my last use event nearly five years ago. The reason? I realized that what I wanted was unattainable: what I wanted was to experience the heroin high with my 22-year-old brain; injecting heroin with the brain and busy life of a 33-year-old was not the same experience. The pleasure was gone.
      Now, my desires and intentions are consonant with my decisions and behaviors. I wake each day knowing what I want and intend to do; then I set about doing it. It is the opposite of addiction and not particularly reflective of a diseased brain. My brain was changed by time, circumstance, and continued drug exposure. After repeated drug-taking stopped, it was again changed by time and circumstance. So, it shall continue.
      Currently, I am a postdoctoral fellow at the National Institute on Drug Abuse's Intramural Research Program, coming full circle from one federal facility to another. I am here because of and despite my past; because of inherent privileges I was afforded by chance; and because of significant family support. When I leave for a university faculty position, I will hopefully be on a trajectory to continue my work for decades. Today, I conceptualize myself as a scientist, a dog mom, a wife, a sister, a runner, a daughter, a citizen, a human. I have a lived experience of addiction, but I am not an addict.
      If I choose to use heroin tomorrow (unlikely but possible and certainly more probable than for others without my past), I would not agree with the assertion that such an event would be a symptom of brain pathology, though I can see how some might.
      I write this to emphasize that in seeking to treat and study addiction, we would do well to ask patients and participants what they experience during and after addiction, and how they perceive their behaviors as contextualized by circumstance. What are the factors they believe are associated with successfully quitting or controlling their use? We should ask them what they intend and want to achieve before we define and measure treatment or research outcomes that may or may not comport with what they want. As scientists, we should remain skeptical but open to what we might hear. As clinicians, we should remain open, and should recognize and respect the inherent dignity and complexity of the person. Perhaps most controversially, we should pause before conjecturing about the inevitability or trajectory of brain pathology in people who have experienced addiction. Words matter, particularly because addicted people's capacity for resiliency and recovery (and other people's willingness to invest resources in those people) can hinge on expectations. If the complexity and heterogeneity of either disease or constrained decision-making are properly framed for and explained to patients and lay people, the result should be recognition of the indecency of and harms from moralizing, blaming, and stigmatizing. Emphasis on nuance, context, and heterogeneity in either paradigm should permit better science and treatment, but also a kinder world in which we see the person behind the addiction. Our collective capacities and willingness to help people with problematic drug behaviors learn new behaviors should hinge on our shared humanity, not pathology, and we need not label something as chronic in order to care.