Changing the narrative: a call to end stigmatizing terminology related to substance use disorders

Beyond their denotative meaning, words carry emotional implications and associations that can lead to unintentional or deliberate discrimination. The stigma surrounding substance use disorders (SUDs) is perpetuated by the stigmatizing terminology used in healthcare settings, by the news and other media, and by society as a whole (Zwick et al. 2020). Further compelling the acceptance of discrimination, terminology with negative connotations create barriers to help-seekers, impacting healthcare delivery, and outcomes. Derogatory terms such as ‘junkie,’ ‘addict,’ and ‘crackhead’ are some of the many labels our society continues to employ, fueling the stigma around SUDs (Associated Press 2018). Instead of these stigmatizing terms, the use of person-first language rather than disease-first terminology – i.e. ‘person with a substance use disorder’ versus ‘substance abuser,’ (SA) should be employed (Kelly and Westerhoff 2010; Kelly et al. 2010). Utilizing a community-based participatory research approach to identify stereotypes, Nieweglowski et al. found the persisting themes for people with SUD were dangerous, self-destructive, and no job potential. While significant progress has been made to develop effective treatments to help individuals manage and recover from addiction, little has been done to remove the stigma that surrounds it (Yang et al. 2017; Lee and Boeri 2018; Bessette et al. 2020). Creating rigorous frameworks for academics and journalists alike, pushing for structural changes, and calling for action through social media are avenues to combating this issue.

A study conducted on 314 participants from urban settings found that simply using the term ‘substance abuser’ versus ‘having a substance use disorder,’ led participants to believe that those with addiction were engaging in willful misconduct, posed a greater threat to society, and were more deserving of punishment (Kelly et al. 2010). Their findings concluded, in addition to similar research, that incorrect addiction terminology perpetuates stigma and can lead to significant barriers to care for these vulnerable populations (Kelly et al. 2010; Bessette et al. 2020). Additionally, a study of 516 physicians who attended a mental health conference found that those who were exposed to the term ‘SA’ instead of ‘SUD’ were significantly more likely to recommend punitive measures for patients suffering from addiction (Bessette et al. 2020). Attesting to the urgent need to transform our language, this study highlights that even medical doctors and mental health experts are at risk of perceiving those with SUDs negatively once exposed to stigmatizing language. The unsettling reality exposed by these studies demonstrates not only the effect that language has on perception but also how that negative outlook can lead to lower quality of health care and delivery.

It is disconcerting that the countless interventions and initiatives to reduce stigma have not yet succeeded in changing the frequency with which health professionals and laypeople continue to use stigmatizing terminology (Pollack 2019; Bessette et al. 2020). Through a computational analysis summarizing 6,399 news stories about the opioid epidemic in print and TV news outlets between 2008 and 2018, McGinty et al., found that 49% of the stories used stigmatizing terms. Only 2% of the stories opted for less stigmatizing alternatives (McGinty et al. 2019). Since coverage is central to informing public opinion on an array of topics, it is imperative that media outlets properly refer to those with addiction in person-first language. Recognizing this need, The Associated Press Stylebook (Associated Press 2018), which serves as a writing guide for journalists, recommended against the use of stigmatizing language when describing individuals with SUDs. Despite these recommendations, our research found that 56–94% of articles published by major news outlets included pejorative language in addiction-related articles, even after the stylebook was published (Bessette et al. 2020). For years, advocacy and research groups have been actively working to raise public awareness on the effects of stigmatizing language in the press and within society; the evidence on effectiveness, however, is mixed (Corrigan et al. 2012; Griffiths et al. 2014). The Public Awareness Line of Operation has been successful in creating educational efforts, such as documentaries, raising public awareness through campaigns and partnerships, and creating online content for families (Safe Project 2020). They echo this message that ‘words matter,’ as they urge individuals to use Addictionary^® as a resource, created by the Recovery Research Institute to destigmatize the language of addiction (Addictionary^® n.d.). A group called ‘Changing the Narrative’ at Northeastern University, provides up-to-date and evidence-based information on news and controversies to help journalists and opinion leaders represent drug use and addiction accurately, humanely, and with scientifically grounded information (Changing the Narrative 2019). Employing their group with not only academic experts but also individuals with lived experience of the issues has been crucial to their success in this contested terrain. It is critical that we continue to arm our experts and professionals with evidence-based knowledge, providing them with the resources to understand addiction and therefore change the conversation. Through a similar call to action, it is important that we move beyond a constant need to raise awareness and provide recommendations and instead create a systemic change that endures.

Although varying individualistic approaches have been successful in reducing the stigma against people with SUDs, structural changes should be pushed to the forefront (Mental Health Commission of Canada 2020). US researchers found evidence that people with mental illness preferred structural level approaches over a focus on public education (Mental Health Commission of Canada 2020). Structural stigma is defined as the constriction of resources, opportunities, and mental and physical health of the stigmatized which results from cultural customs, societal-level circumstances, and institutional policies (Hatzenbuehler 2016). Research indicates that current practices, treatments, and standards, in addition to the dominant model of mental health care do not sufficiently address the complex nature of the mental illness (Lake and Turner 2017). It is necessary that addiction specialty treatment organizations and substance use-related services be integrated effectively with the rest of healthcare, that is, same credentialing, screening, medical record keeping, and care coordination. Scientific evidence has shown that closer integration into mainstream healthcare adds value to both systems and improves the quality, effectiveness, and efficiency of care (Puddy and Wilkins 2011). A major barrier to effective and affordable treatment is presented through parity legislation and the Affordable Care Act, which requires insurance companies to cover SUD treatment just as they would cover similar medical conditions (Vuolo et al. 2019). In 2017, more than half of states with ACA plans did not adhere to coverage of SUD benefits (Vuolo et al. 2019). Classifying SUDs as a brain disease is a controversial point, as while the brain disease model views the condition as purely pathologic, alternative models highlight the social and environmental factors that contribute (Davies 2018; Lewis 2018). Regardless of how we choose to model SUDs, it is imperative that they be given the same level of attention and care as is given to diseases, and that persisting barriers to insurance due to stigma be erased. It is important to note that the biological explanations that accompany the brain disease model have shown to cause harm (Wiens and Walker 2015). Kvaale et al. (2013) described that although biogenetic explanations may reduce blame, they induce pessimism and can hamper recovery from psychological problems. For this reason, the structural changes established going forward should take into account the empirical data that found framing addiction within a biological context, as opposed to a social, environmental, and psychological context can negatively impact societal perceptions (Wiens and Walker 2015). Furthermore, in addressing the sources of structural stigma, mental and physical health can be promoted. This notion was previously observed when the legalization of same-sex marriage in Massachusetts resulted in a decrease of medical and mental health care visits by individuals in the LGBT community (Hatzenbuehler et al. 2012). When certain policies go unaddressed, mental and physical well-being can be further jeopardized, as was the case among Hispanic/Latinx mothers whose fear of local immigration enforcement policies resulted in profound mistrust and consequent underutilization of health services (Rhodes et al. 2015). Many institutional policies and regulations in place are based on internalized negative stereotypes, with legislation leaning toward the use of broad criteria instead of specific and objective measures of cognitive impairment or reduced capacity (Corrigan et al. 2005). Mental health advocates and researchers suggest that efforts to combat stigma should not focus on ‘soft goals’ of education and attitude change but should turn toward the ‘hard goals’ of legislative and policy change (National Academies of Sciences et al. 2016). By promoting social equity through institutional reforms, the overall quality of life for people with substance use disorders would improve, helping to end discrimination (Stuart 2016; Mental Health Commission of Canada 2020).

More than ever, due to technological advances and the effects of an isolating pandemic, social media has become a tool for mobilization and quick dissemination of information (Wilkins et al. 2019; González-Padilla and Tortolero-Blanco 2020; Kudchadkar and Carroll 2020). As expressed by Yeung (2018) social media remains a relatively untapped source to mobilize policy action and social change. Over the last two to three years, however, with the rising popularity of ‘cancel culture’ and ‘hashtag activism’ we have seen the power that social media platforms such as Twitter can have on making a statement and creating powerful change (Gough et al. 2017; Yeung 2018). Revolutionizing the way in which we communicate, social media has the capacity to change our beliefs and attitudes, whom we connect with, and how we engage with social justice and activism (Gonta et al. 2017; Yeung 2018). Using the Black Lives Matter movement as an example, phrases that have been often misconstrued as inoffensive such as ‘All Lives Matter’ have been called out and corrected on social media platforms (Gallagher et al. 2018; Wilkins et al. 2019). A study aimed at evaluating the relationship between media exposure, age and attitude on homosexuality concluded that higher media exposure levels fostered more accepting attitudes (Gonta et al. 2017). Greater exposure to positive homosexual-related media leads to more positive attitudes toward the subject among viewers. These findings strongly indicate the role that social media can play in our perception and behavior toward minority or stigmatized communities. Likewise, the queer Nigerian community was able to demonstrate how the digital world has become a refuge where they can exist true to their self identifies when they opened up a conversation about linguistic advocacy on ‘Queer Nigerian Twitter’ (Onanuga 2020). This public conversation ultimately advocated for individuals going through similar life experiences and educating the greater Twitter community on the battles these communities face. As health professionals and activists, it is our responsibility to do the same for individuals with SUDs. Platforms such as ‘MedTwitter’ where physicians advocate, discuss, and provide free advice on conversations taking place within their communities, are existing outlets that we must take advantage of (Pershad et al. 2018). By connecting with society through these powerful platforms, social media can create the structural and societal changes required to remove stigmatizing words from our vocabulary.

We are all aware that in order to achieve change, we need to take action. It is unclear whether ignorance, contempt, carelessness, or a combination are to blame for the passivity and inactivity at hand. After countless calls for change and a strong advocacy presence, we continue to label those with SUDs as ‘junkies’ and ‘abusers,’ with stereotypical themes persisting among current and former users, family members, and service providers (Corrigan et al. 2012; Bessette et al. 2020). This derogatory language which has become systematically ingrained in our language, news coverage, social media, and healthcare system, must be erased from our lexicon. In addition to educating health experts, journalists, and the general public on their responsibility to use proper person-first terms in relation to SUDs, other concrete, and strategic methods may be more effective. We should continue to impose an evidence-based, scientifically grounded approach to representing drug use and addiction in the media, while also hiring and listening to those who have experienced addiction stigma first-hand. Calling for structural and institutional level changes and inciting conversations through social media platforms are approaches that will hopefully help us as a society to better understand and eliminate negative societal perceptions. These rigorous and modern techniques would not only institutionalize a widespread acknowledgment of the profound, negative effects that individuals face when stigma persists, but also unwittingly educate those on the receiving end.

Disclosure statement

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