Why I am not a person with “substance use disorder”

How our discussion of addiction became trapped in the flawed terminology of the DSM 5 and why it’s important that we escape. 

The topic of addiction and stigma is currently receiving long overdue attention. Some important studies suggest that terms like “substance abuse,” “clean,” “alcoholic,” and “addict” reinforce negative judgements among health care providers and may impede people from seeking treatment. In response, the Associated Press released new guidelines in 2017 that discourage journalists from using these and related terms in their reporting. What is clear, as Brooke Feldman argues, is that we need to transform the discourse around addiction in a patient, open, and compassionate manner. Less clear is how this work relates to challenging stigma and what the most effective strategy for activists—in contrast to journalists or clinicians—might be. On the first question, it is worth underlining that a significant critical literature shows that the adoption of a “race neutral” terminology has, if anything, entrenched institutional racism. There are important reasons to challenge stigmatizing language. It’s wounding and it can affect people’s decisions in key settings. But the wide-spread notion that language policing helps to eliminate or transform broader social prejudice is pretty dubious. On the second question, many activists have adopted a vocabulary that originated not in our own history and communities, but in the field of psychiatry. Whether wise or not (clearly I have qualms), it is striking that this strategy goes in the opposite direction of other traditions of social justice, such as the LGBTQ movement, which mobilized terms like Gay and Queer to unthrone the term “homosexual.” A significant tradition of activism and scholarship warns against the limitations of an individualizing, biomedical model of addiction. Why would we then adopt this same discourse for our self-designation? I don’t claim to know what the right answers are. But it seems to me that we need to do more work to grapple with the questions.

Increasingly, researchers and recovery advocates are employing the phrase “person with substance use disorder” or “person with SUD” in the place of alcoholic and addict. My first observation is that category of SUD is a very recent invention. In 2013, the latest edition of the Diagnostic Statistical Manual (DSM 5) introduced the term as a replacement for two separate headings employed in the DSM IV: substance abuse and substance dependency. I am not going to try to summarize the vast critical literature by both practitioners and activists concerning the DSMs in general and the DSM 5 in particular. They have been accused of racial and cultural bias, pathologizing normality, and creating arbitrary and overlapping designations. Like any tool, the DSM manuals have both strengths and weaknesses depending on how they are used. The point is that their designations are neither uncontroversial nor beyond contestation. My second observation is that the DSM 5 made a significant innovation in the discourse of addiction medicine that was not well supported by the existing research. Removing “substance dependency” and “substance abuse” (Jason Schwartz discusses the shortcomings of these categories here), it placed all problematic relationships to chemicals on a single spectrum of disorders. This approach was not specific to drug use and it did not originate in the addiction field: it was the paradigm that the DSM 5 employed in general. In doing so, it eliminated any reference to underlying causes and focussed on clusters of frequently co-occurring symptoms. Every problematic relationship with alcohol or drugs that satisfied a minimum number of criteria was now an SUD.  

Some history will help place this change in context. Alcoholics Anonymous (AA) was founded to help a particular population: people who had lost the ability control their drinking, struggled to quit on their own, and frequently relapsed even with assistance. This illness is devastating both for alcoholics and the people in their lives: it usually culminates in jail, institutionalization, or death. The key point is that this population exists. It has been described in the medical literature since the 1780s and people who fit this description can be found in the archives long before the pattern was conceptualized as an illness (Beethoven’s father, for example). Stability under variations of definition is an attribute of a natural kind. Unlike the pathologies described by Ian Hacking (say, multiple personality disorder), alcoholism of this type has a material reality in excess of its cultural construction. It’s an actual thing. AA literature is not scientific, but as Schwartz notes, it is fairly subtle in its discussion of alcoholism. The “Big Book” clearly states that not all heavy drinkers are alcoholics of the kind it specifies and that many problem drinkers can quit on their own or with some help from a doctor. Nevertheless, most discussions after AA’s founding—both popular and scientific—split drinking into two categories: alcoholism or healthy drinking, the pathological and the normal. The identification of “functional alcoholism” in the 1950s therefore represented an important development. That research established that there were forms of problematic or destructive drinking other than “Big Book” alcoholism. At a certain level, the category of SUD can be seen as the end point of a reconceptualization that began then. There are multiple forms of problematic relationships with substances. They have different trajectories and require different treatments. The vast majority of these resolve on their own. The category of SUD helps make visible harmful substance use that differs from “Big Book” addiction. 

Here, specification is required. SUD was designed to accomplish this work in a clinical setting. How effectively it serves this purpose is a disputed question that lies outside of my competency. Many addiction experts, for example Carleton Erickson, believe that placing all problematic relationships to substances on a continuum obscures that fact that “Big Book” addiction and other SUDs are different kinds of conditions. Significantly, the DSM 5 and the spectrum definition of substance use disorder are primarily employed in North America. Most of the world uses the World Health Organizations’s International Classification of Diseases (ICD). The 2018 ICD 11 rejected the expansive reconceptualization of SUD and maintained the more circumscribed and empirically specific diagnosis of “substance dependence.”  (When was the last time you heard a presentation on SUDs where the speaker acknowledged that the world’s most authoritative health organization had rejected this characterization of addiction?) Remember, the DSM 5 is only the start of a proper diagnostic process. Once the severity of SUD is identified, clinicians normally make use of more fine-grained protocols to determine the appropriate treatment—such as the American Society of Addiction Medicine (ASAM) placement criteria—while trying to identify what forms of treatment their client is willing and able to engage. However, when SUD is translated into an epidemiological or sociological category, a process of reification takes place. In short, an idea is confused with a thing. The result is a “baggy” category: it groups together different phenomena while fitting each of them rather loosely. 

College-age drinking illustrates this point. A shockingly large number of young American adults—roughly 20 percent by some estimates—meet the criteria for SUD. There are multiple, complex reasons: the culture of alcohol consumption on campus, the experience being outside of parental authority, the need to self-medicate for stress, and the relative lightness of consequences. The interesting fact is that the majority “age out”: they either quit on their own or moderate their use over time. The exact reasons and timing of this process are still being researched, but the consensus is that graduating to more responsible social roles—marriage, parenting, a regular job—leads people to reevaluate their priorities and/or self-correct since their use has more serious consequences in the new setting. That being said, a significant minority doesn’t follow this general pattern. They continue despite serious negative consequences. They struggle to quit on their own. They frequently relapse. In a clinical setting, these two groups can present with exactly the same DSM 5 diagnostic criteria. From my reading, it is not clear that the severity of SUD is a reliable predictor of who will age out. At least in this population, severe SUD and addict should not be used as synonyms. The take away? Age-limited problem drinking and “Big Book” alcoholism are different things. Describing them both as SUD indicates that they are two kinds of harmful relationships with alcohol, nothing more.

The real difficulty arises from a promiscuous confusion of clinical, recovery, and popular discourses. In my experience, multiple groups are guilty of this sin: journalists, social workers,  psychologists, activists, twelve steppers, and the internet trolls that clog websites like the Fix. This process was historically complex, but let’s simply it into three steps. First, popular, recovery, and professional use expanded terms like alcoholism and addiction to encompass a heterogenous group of different phenomena. Second, some journalists, activists, and clinicians—in an laudable effort to combat the stigma associated with existing terminology—advocate substituting “person with SUD” for addict/alcoholic. Third, multiple groups began making claims about addiction on the basis of generalizations that apply to the broader category SUD. The result? Based on this conflation, some activist and educators start to critique older understandings of addiction since they are not generally applicable to the population that has been artificially created through the expansion of this new and controversial diagnostic tool. This is what philosophers call a category error.

Take the frequently reiterated assertion that majority of people with addictions recover on their own without professional or twelve step assistance. This myth has its origins in an important set of studies from the 1970s on returning Vietnam vets and their experience with heroin. These studies clearly establish: 1) heroin use among veterans did not necessarily lead to physiological dependency; 2) most physically dependent vets were able to quit heroin on their own and stay off. Among other things, these findings helped clarify that physical dependency is not addiction. There are some parallels with the literature on “aging out.” When heavy users move out of a social context in which their consumption is both normalized and/or serves an important psychological purpose, most are able to stop or moderate their use. But a minority of these vets could not pull it off: they relapsed and struggled to stay sober. This finding has been reaffirmed by the “natural” or self-assisted recovery literature. Many people with SUDs can stop on their own or moderate. But, as William White emphasizes, these are generally people with either less severe SUDs and/or drinking problems of a shorter duration (they also tend to be better educated, female, and stably employed). Many pre-2000 studies of natural recovery are flawed by circular reasoning. They identify their study groups as “addicts” without controlling for the difference between “Big Book” addicts and heavy users (some don’t describe use history at all), and then conclude that the ability of  members of this unsorted group to quit shows that “addicts” can stop unaided! It’s true that some “Big Book” addicts quit on their own, especially early in their disease. But the claim that most do so is not supported by clinical experience or population studies. In technical terms, it’s nonsense.  

In my experience, this confusion explains some of the tension between certain twelve step and harm reduction circles. I want to strike a note of caution. Since most twelve steppers don’t engage in these debates, the idea that there is “great schism” between the approaches is sometimes exaggerated by activists who want to promote their own brand of recovery. Twitter arguments simply don’t represent the real world. Many twelve steppers that I know embrace harm reduction measures. That being said, I occasionally hear skepticism regarding the idea of “multiple paths to recovery.” In some cases, I think that this represents a dated and Puritanical attitude towards the use of Medically Assisted Treatment (MAT), although this skepticism is more understandable if one remembers the ways that a flawed delivery infrastructure turned methadone into a chemical prison for some people. In other cases, I think it is based on the fact that we are talking about different things. “Many paths” and harm reduction measures—like safe injection sites and Fentanyl testing strips—are designed to make consumption safer and life healthier for drug users of all kinds. You can’t get sober dead. And most drug users don’t need to get sober. Twelve step frameworks evolved to help addicts of the hopeless variety when nothing else could—although they have proven useful for some people with less serious problems. They don’t only address destructive use but the psychological and existential catastrophes that unfold when your life has been consumed by a compulsive, uncontrollable urge to use. When speaking of the several groups that compose the category SUD, it is correct to suggest that many folks can moderate. When speaking to an alcoholic and addict like me, moderation is a dangerous idea: my repeated, vainglorious attempts at drinking in a controlled manner—some encouraged by professionals—almost killed me. When discussing people with SUD as a group, it makes sense to say that people should define recovery in their own terms. In contrast, an addict and alcoholic like me does not “chose” abstinence like it’s a lifestyle brand. The terms of our recovery are forced on us. I tried every conceivable path before terror and desperation drove me into complete abstention. (An important aside: MAT is entirely compatible with my personal understanding of sobriety.) In short, some ideas that are evidence-based when referring to non-addict SUDs are dangerous for my tribe.    

Why is this slippage so common? Of course, much of it falls to the circulation of misleading claims on the internet and the credulous repetition of statistics by people who have not taken the time to read the scientific literature. But I think that there are two larger factors behind the rebranding of addiction that are worth underlining. First, we can’t underestimate the cultural and psychological resistance to the very idea of addiction. In general, Western societies identify individual freedom with choice and sovereignty over our choices. Many theories of human behaviour assume that our actions, if not always rational, are utilitarian and self-interested at some level. “Big Book” addiction vitiates this assumption and raises difficult questions about how we understand ethical responsibility. There are also significant psychological obstacles to accepting addiction. At some level, many of us find it difficult to conceptualize the loss of power over our ability to make decisions. The concept is counterintuitive: it violates common sense and our everyday experience of self. “Uncontrolled will” is basically a contradiction in terms. This denialism manifests widely in the field of addiction research. A substantial literature erases “Big Book” addiction by deriving it from some form of deep learning, stimulus-response conditioning, or self-medication, whether for mental illness, trauma, or socio-economic marginalization. Of course, learning, self-medication, and structural relations of power play important roles in many SUDS, addiction included. But addiction can’t be reduced to these mechanisms. As I discuss here, I often used alcohol to alleviate depression and anxiety. But some symptoms of alcoholism—especially out-of-control binging—are poorly explained by learning or self-medication.

This resistance is one of the reasons that the neuroscience of addiction is significant. Although not without its own limitations, this research provides compelling evidence and plausible models that reaffirm the existence of “Big Book” addiction. Yes, we’ve been telling the truth. We really do suffer from a compulsive, irrational urge to use and the impaired ability to both self-regulate and evaluate consequences. (This dynamic is the exact opposite of learning in any conventional sense of the word.) The neuroscientists are clear that they are targeting a well defined phenomenon and not the motley array of behaviours that fall under SUD. Not coincidently, scientists like Kent Berridge, Carelton Erikson, Nora Volkow, and Judith Grisel give significant weight to the testimony of addicts in evaluating their findings. They are interested in understanding how experimental results help explain the neurological mechanisms behind the real-world behaviour of people with “Big Book” addiction. Many critics of the “brain disease” theory miss this goal. They assume that neurobiology seeks to provide something like a general theory of the origins of SUDs. On the flip side, some anti-stigma campaigns describe SUD—without further specification—as a medical illness. That’s correct. The debates over one of the most important health crises of our time are marred by this level of confusion.    

Second, the folding of addicts into people with SUD is politically expedient for recovery advocates: it multiplies the number of people that they can claim to represent and allows for a more positive image of recovery. In the groundbreaking film The Anonymous People, addiction is represented as affecting everyone who currently meets the criteria for a SUD and the 23.5 million Americans who identified themselves as once having some type of problem with a substance. This last statistic deserve much critical scrutiny. It includes, for example, people who got drunk once and decided that they should probably never drink again, save a few sips of champaign at their cousin’s wedding (I know some of these strange creatures). In other words, it sets the bar of inclusion significantly lower than the already capacious umbrella of SUD. Then some advocates extrapolate. When you include all the friends and relatives of the these two samplings, you can assert that addiction directly affects one in three Americans or even half of the country. For a lobbyist or advocate, these numbers represent a dazzling, untapped mainstream base for a national coalition. They are also illusory. From a political perspective, there is simply no reason to assume that people without addiction who quit on their own will be sympathetic to those with addiction or more progressive drug policies. My experience is that the opposite is often true. Heavy drinkers who moderate are sometimes contemptuous of those who can’t. There is also no reason to assume that relatives are automatically allies. Addiction traumatizes and traumatized people frequently lash out. Some relative groups, for example organizations representing the parents of overdose victims, are currently in the forefront of lobbying for repressive legislation like the “drug homicide” bills. From a treatment and recovery perspective, these numbers vastly inflate the number of people who are in remission from an addiction. (Moderate use is a dead certain indicator that you are not a “Big Book” addict.) I should be clear. Many, many people recover from “Big Book” addiction. We need to shout this truth from the roof tops! But to conflate our recovery with my friend the “champaign sipper” is—for an addict like me—surreal. Off the charts bizarre. Appropriating and negating. These numbers trivialize how difficult recovery is for someone with “Big Book” addiction. They also create a triumphalist narrative that undercuts the ethos of harm reduction. Most people suffering from “Big Book” addiction probably don’t recover. We still deserve health care, housing, education, jobs, and compassion.

Let me say, a lot of advocacy groups use these statistics, including organizations that I personally support and work with. I don’t run around correcting people. The problem of harmful substance use is much larger than addiction and advocates need to make it visible in its myriad forms. I simply wish that we would be far more careful in identifying what we are speaking about and whom we are claiming to represent. Some of our assertions erase the experiences of people that we claim to champion—in some cases, our own experiences. However, I think there is a strain of recovery advocacy where the folding of addiction into SUD coincides with a potentially dangerous and divisive power dynamic. The constituency of SUDs plus “sippers” and their relatives is the perfect vehicle for a self-empowering discourse. It has no sociological unity. It has no epidemiological unity. It has no statistical unity other than the tenuous numbers produced by the fact of agglomeration itself. It certainly has no political unity. In other words, it cannot contest the self-empowering claim to represent it because it does not actually exist outside some dubious statistical slapstick. When groups raise questions about the current discourse of recovery advocacy or observe that their experience is not well captured by its framing, they can be ignored or marginalized. They can be dismissed as—for example—grizzled twelve steppers whose understanding is imprisoned by out-of-date dogma. Needless to say, this is a far cry from the patient and caring work of gathering communities with divergent realities into a space of conversation.

  So give me another term. We should be very cautious about employing “addict” and “alcoholic” when writing in the mainstream press, speaking in classes, or doing advocacy work. I have seen their powerful effect when mobilized strategically, but they should never be used as third-person descriptors. Thanks to some gentle, but critical, prodding from Carlyn Zwarenstein, I am trying to be more careful when using them in this blog. But “Person with a substance use disorder” creates more problems than it fixes. “Person in sustained recovery” raises another set of thorny issues, most notably that it does not include those who are not. What are the implications for deploying a category in our activism that separates us from people still in active use? Are we somehow superior? Do we only have voices and value once we have entered a process of recovery? Personally, my recovery is still day-to-day. After five years of sobriety, relapse rates fall to 15 percent. We can accurately speak of stabilization. But “sustained recovery” doesn’t capture the reality of my disease now. “Person with an addiction” is much better, but I know people who are not happy with it. Addiction is not some separate, extraneous facet of my existence that I can demarcate from my core identity—like my asthma or anxiety. I value Elizabeth Brico’s invitation to flexibility: I don’t want to reduce myself to one element of my complex and messy humanity. At the same time, addiction reshaped every aspect of my life and recovery is the most important thing that I work on each day. If that is not true for you, then I suspect that we may not suffer from the same disease. That’s genuinely fine—in truth, I am happy that you didn’t have to go through my hell. But I also know that you may have followed your own terrible path, which I probably little understand. If the words that I use to describe myself—“addiction” and “recovery”—find power through your life, I embrace our kinship with gratitude. I only ask that you remember their provenance and employ them in a way that does not trivialize or erase my experience. They came into their current use through the long, harrowing, and sometimes beautiful history of suffering and struggle by people with “Big Book” addiction. They are flowers that we have thrown into the ocean.             

6 thoughts on “Why I am not a person with “substance use disorder”

  1. Dear Mr Addict
    Your insights into the subject of addiction and it’s classification and treatment are both timely and compelling .
    So much of the material discussed here is in my opinion wrongly defined, classified or understood. And certainly given the seriousness of the current situation where over dose rates in high school classes begin to approach casualty rates in ww1 regiments clarification of what we deal with is of prominent importance . Thank you for sharing your opinions with us via your blog. It
    Is well written. Well thought out, and contains a refreshing humility so lacking today.

    Liked by 1 person

  2. This is honestly the most genuine article I have ever read . Thank you for your candor and for giving me a lot to think about, and a greater understanding of the struggles some of my family members and my ex husband have gone through.

    Liked by 1 person

  3. Thanks for the overlook on the swamp of terminology and definition. I work with people who have problems with the use of various chemicals and/or related behaviors. I find “users” to be the most useful term. And I find that talking to them informs the way that I approach their issues.

    Like

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