Opioid Use in Appalachia: How to Reduce Stigma so People Seek Help

By Tessie Castillo 02/08/18

“We interviewed people who couldn’t get a job outside the treatment/recovery space even 20 years after they had stopped using drugs because of stigma.”

Woman holding baby and walking away down a dirt road.
“This is a multi-generational issue for many Appalachian families who are struggling."

A new research study on communicating about opioids in Appalachia has published shocking results: stigma is the driving force that keeps people who use drugs from seeking help.

I’m kidding. Anyone who has worked with people who use drugs already knows that stigma plays a pivotal role in why drug use can flourish under the radar, why so many people have difficulty seeking help, and why communities and policy makers often kick the can over to law enforcement instead of investing in evidence-based treatment and prevention programs.

But what this new report does bring to the table is a set of practical ideas for how to reduce stigma against opioid users through targeted communication strategies. For the study, Communicating About Opioids in Appalachia: Challenges, Opportunities and Best Practices, lead author Jennifer Reynolds and other researchers gathered the information through a series of interviews with subject matter experts in the Appalachia region, as well as through focus groups with people impacted by drug use in Kentucky, Tennessee and West Virginia.

“What people shared about their struggles with stigma was heart-breaking,” says Reynolds. “We interviewed people who couldn’t get a job outside the treatment/recovery space even 20 years after they had stopped using drugs because of stigma.”

In addition to outlining the effects of stigma, the report also highlights the need for substance use prevention programs and greater access to treatment.

Project lead Kristin Mattson recalls focus group participants expressing frustration at being turned away as they sought help. “Some people described calling up to 50 treatment centers a day looking for help and no one would take them because they didn’t have insurance and couldn’t pay out of pocket,” she says. “We need to have more resources available to people who want them.”

On the prevention side, Reynolds adds, “This is a multi-generational issue for many Appalachian families who are struggling. We need to take a look at the root causes like poor economy, adverse childhood experiences, and untreated mental health issues. We need to look at prevention in the context of these risk factors.”

The report provides suggestions gleaned from interviews and focus groups on possible messaging techniques to combat stigma and promote recovery. One of these recommendations in particular caught my eye. The report reads: “Participants noted that pairing stories with ‘before’ photos of someone at the low point of their addiction with ‘after’ photos of that person living in recovery would be a powerful way to depict both the consequences of addiction and the hope and benefits of recovery.”

My first reaction upon reading this recommendation was Oh no. When I was a child, I remember police coming into my school and showing before/after photos of drug users. (Before: smiling, pretty cheerleader. After: same girl looking like she had just crawled out of a garbage can). Flipping the photos might demonstrate that some people can stop using drugs, but it could also reinforce stigma and stereotypes of people who are still active users.

Think about weight loss campaigns. We’ve all seen the ads of skinny people holding up the old stretch pants that they used to fit before mastering the art of losing 100lbs in 90 days. Before: fat and miserable. After: thin and smiling. Sure, these ads are effective at getting people to buy whatever miracle shake the company is selling, but they also serve to perpetuate our deeply entrenched culture of fat-shaming – and our unrealistic ideas of what “healthy” looks like. 

More effective health campaigns are the ones that encourage people to take small steps to improve their health, such as using the stairs instead of the elevator, cooking more meals at home or finding a workout buddy. Many campaigns even encourage people to ditch the scale because there are better ways to measure health improvement than through lost pounds. These kinds of campaigns promote the idea that any positive change is a good thing. They encourage people to feel comfortable in their bodies and to make small, realistic improvements over time. This is harm reduction. Period.

Now, let me be clear on a couple of important points.

First, I am not saying that it is wrong to depict or celebrate the stories of people who define recovery as abstinence from all drugs. Far from it: I think that telling the stories of people who have become abstinent from drugs can inspire others who want to travel that path. But we need to stop framing total abstinence from drugs as the only definition of recovery. There is a whole spectrum of recovery that can include using fewer drugs, managing drug use, tapering off drug use, substituting less dangerous drugs for more dangerous drugs, being on medication assisted treatment, or even managing other life circumstances to improve a person’s health without changing their drug habits at all. Total abstinence may be the best option for many people, but it is not the best option for everyone. By forcing people to think in strict dichotomies about drug use, we are missing the chance to offer numerous other opportunities for people to make positive change in their lives.

Secondly, I understand that this particular report did not recommend using before/after photos for the explicit purpose of shaming drug users. In fact the entire report repeatedly emphasized the negative effects of shaming and stigma on people who use drugs and their health outcomes. Project lead Kristin Mattson explains the purpose of the photos, which should be accompanied by real-life stories of people’s journeys through substance use and recovery: “Such stories could help shift the narrative, which overwhelmingly focuses on overdose deaths and other negative consequences, to show that recovery from addiction is possible.”

I agree that there is a desperate need to dispel the myth that once people are involved in chaotic drug use, they are incapable of change. And to be fair, the report made many other recommendations that could help reduce stigma against drug users. I am focusing on the before/after photo suggestion because it offers an opportunity for a larger discussion on how to promote stories of people who have chosen abstinence-based recovery without further enforcing stereotypes of active drug users as lesser or incomplete.

If I could add my own recommendations to this report, I would suggest broadening our definition of recovery and including stories that depict many examples of how people who use drugs can take positive steps to improve their health. The reason we have so many anti-obesity campaigns with messages geared towards eating more vegetables and walking more steps each day is because most people recognize that stories of dramatic weight loss, while they may inspire some, can set unrealistic expectations for many others. Yet when it comes to drug use, we almost always peddle the stories of drastic change, while minimizing messages of small or incremental change as “not real recovery,” or worse, “promoting drug use.” (Just think of how often that argument is used against programs that improve health by reducing disease transmission through syringe exchange or preventing overdose deaths).

I find it inspiring and encouraging that in recent years, people in abstinence-based recovery and people in harm reduction have finally started to realize what they have in common. I see examples all over the country of these groups, who were not always traditional allies, starting to embrace each other and work together to tackle a problem that is devastating communities. In these partnerships I see hope that we can reduce the harm of a deadly crisis and recover from a Drug War that gone on far too long.

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Tessie Castillo is a writer and drug policy advocate in Raleigh, North Carolina. Her articles explore topics such as criminal justice reform, drug policy, and harm reduction. Castillo previously served as the Advocacy and Communications Coordinator for the North Carolina Harm Reduction Coalition (NCHRC), a statewide nonprofit that advances drug policy and criminal justice reform. During that time, she played a pivotal role in helping to legalize syringe exchange programs and expand access to naloxone, a medicine that reverses opioid overdose. Find Tessie at her website or on Facebook, TwitterInstagram, and LinkedIn.