Stigma lives at three levels
Stigma toward substance use and people with substance use disorder (SUD) is a major driver of the overdose and addiction crises in the United States, impacting people with SUD, their loved ones, and their communities in innumerable ways. Stigma is fairly easy to understand – it’s a set of negative beliefs that a society or group of people have about something – in this case, substance use and SUD. The act of stigmatizing – stigmatization – is a psychological and sociological process that has four basic components: labeling, stereotyping, rejection, and discrimination.
Stigma lives at three levels.
Public or individual stigma refers to a set of negative attitudes and beliefs that motivate individuals to fear, reject, avoid, and discriminate against people with SUD. Structural or institutional stigma refers to the societal-level conditions, cultural norms, and institutional practices that constrain the opportunities, resources, and well-being of stigmatized populations. Lastly, self-stigma refers to the negative attitudes, including internalized shame, that people with SUD have about themselves.
The three types of stigma are interconnected. For example, people (individuals) who create public policies and treatment structures (institution-level practices) have their own biases and beliefs that influence their decisions. Conversely, even those who don’t hold high levels of addiction stigma are subject to existing systems that perpetuate bias and discrimination. Over time, existing structures that stigmatize substance use, people who use substances, and people with SUD can perpetuate and increase individual stigma. Both public and structural stigma lead people with SUD to internalize negative beliefs about themselves and their disease, promoting isolation and silence. Stigma infiltrates virtually every aspect of an affected person’s life at multiple levels, exacerbating the SUD. Negative feelings and beliefs lead to a desire to use substances, which further worsens negative feelings and beliefs … and more substance use. A vicious cycle. Self-stigma negatively impacts the individual’s health, well-being, life satisfaction, friends and family, and life opportunities.
While academic and clinical definitions of stigma are helpful in creating a shared language, these definitions don’t capture the feelings of shame and isolation or the experiences of discrimination and ostracization that result from being stigmatized. They also can’t fully convey what it’s like to exist in systems that have, historically, not been built to support people living with SUD, to help them find treatment, recovery, health, and well-being. In short, stigma is something that is hard to fully understand until you feel it yourself.
This is why sharing people’s stories and experiences is helpful.
Consider Emily’s story:
Emily is 39 weeks pregnant, due next week, with a history of opioid use disorder, though she’s currently in recovery. She wants to be excited to have her baby, but no one has talked to her yet about plans for pain control in labor. She’s worried about an epidural, if she’ll need a C-section, and how she’ll recover after the birth. She’s worried whether the nurses and providers will take good care of her, or if their own biases could negatively impact her care. She’s not sure what will happen after the birth of her baby. Will social services be called? Will her baby be taken away? What if she’s prescribed opioids for pain? Could she relapse? Should she not take them?
In what should be one of the most joyous moments in her life, Emily is worried.
Alternatively, think about Marissa’s story from her time in active addiction:
“Words can become grenades, strategically spoken at times to do the most damage. When those words come from family and friends, they cut deeper. Labels erased my humanity. Total strangers felt allowed to criticize or judge me, saying that I was ‘just a drunk,’ or ‘an addict.’ These words also carried the connotation that I was lazy, selfish, or a criminal. After a while, I began to believe these words, concluding that I never served a purpose or deserved hope. Luckily for me, these feelings were eventually replaced with words that provided healing.”
We have a great deal of work to do. We need to continue elevating the efforts, stories, and expertise of advocates with lived experience. We need to change our language to promote healing and acceptance. We need to couple our dedication to ending addiction stigma with antidiscrimination and pro-acceptance initiatives to ensure widespread adoption and effective interventions. It’s up to all of us to dismantle existing systems that discriminate, that stigmatize, that reduce access to care, and that harm people with SUD, their loved ones, and our communities.
We have an extraordinary chance to take steps toward reducing stigma toward people with SUD. By recognizing the humanness of people with SUD and by offering evidence-based resources and opportunities for prevention, treatment, and recovery — without judgment — we have an opportunity to build a more tolerant, more compassionate, and healthier future.
Shatterproof is a non-profit organization dedicated to transforming addiction treatment by improving payment and coverage, educating health professionals, setting national standards, enhancing treatment quality, and conducting research to understand the needs of people living with addiction. You can read more stories from people with lived experience, including their tattoos to celebrate and remember, on the Shatterproof website.