Events and observances that increase awareness for cancer, raise money for research and celebrate survivors occur with such regularity that it seems the world has always been this way. Not that long ago, though, there was a societal stigma around cancer. The word “cancer” itself was whispered in hushed tones among people who knew someone with a diagnosis. Otherwise, it wasn’t discussed. People assumed the disease would be fatal, or the treatment would be, or they could “catch” it. It wasn’t until First Lady Betty Ford announced she had breast cancer in 1974 that a new era of understanding and acceptance began. Since then, the stigma of this most feared disease has largely disappeared over time. Jennifer Reynolds hopes a similar wave of understanding is on the horizon for people with opioid use disorder (OUD).
“I think there is a lot of hope for ending the stigma. Appalachia is ripe for this because OUD is so prevalent, and there is a lot of hope in the communities,” said Reynolds, MPH, CHES, section manager for health communication, marketing and training. “We often forget that drug addiction doesn’t just impact an individual, it impacts entire communities. Likewise, stigma doesn’t just impact the individual,” she said.
Reynolds used the example of Mingo County, W.V., where research has shown that 75 percent of young children in the county live with their grandparents because their parents are experiencing OUD. Because so many children are living with their grandparents, stigma is likely not as prevalent but to outsiders the situation may be shocking. “What does this look like to someone in Washington, D.C., who is making policy decisions related to OUD?” she asked.
Structural stigma, or how stigma manifests at the policy level, is demonstrated most often as employment and housing discrimination, Reynolds said. “You take a person who has done the obscenely hard work to enter recovery, and they can’t get a job or find a place to live. This threatens their recovery and their ability to sustain a hopeful, meaningful existence because they cannot support themselves and their family,” she said.
This stigma is caused by underlying, and usually incorrect, beliefs about addiction and recovery. And, like the cancer beliefs of old, stigma about addiction and recovery is fairly widespread. At a recent workshop, Reynolds cited a Johns Hopkins University poll in which 30 percent of Americans said recovery from mental illness or addiction is impossible, and 50 percent said they would be uncomfortable being friends with someone in treatment.
That kind of stigma “keeps people out of treatment, and stigma keeps people from getting recovery support. People who have been in recovery for years are still called junkies or addicts and can’t find work. A lot of people in recovery cited unbalanced media reports as a significant contributor to stigma,” Reynolds told the audience at “Covering Substance Abuse and Recovery: A Workshop for Journalists.”
The workshop, held November 15, 2019, was developed to help journalists better understand substance use disorder and recovery, and to better report on the topic to inspire hope and reduce the stigma that impedes progress. ORAU sponsored and managed the workshop with support from the Institute for Rural Journalism and Community Issues at the University of Kentucky (IRJ).
The idea is to use a “person-first” focus, said Kristin Mattson, MPH, MCHES, project manager for health communication, marketing and training. “Calling someone an ‘addict’ or a ‘junkie’ contributes negatively to stigma, but phrases like ‘person with a substance use disorder’ or ‘person in recovery’ reduces stigma and emphasizes that these are people with a chronic disease,” she said.
While such phrases may sound like political correctness, it’s as much about empathy and being scientifically correct. Moreover, “how a community sees itself is because of how we cover it,” said Bishop Nash, a freelance journalist and former health reporter for the Huntington (W.V.) Herald-Dispatch. He was among the 18 journalists, health professionals, and policy experts who presented at the workshop. Notable among the other speakers were Pulitzer Prize-winning journalists Eric Eyre of the Charleston (W.V.) Gazette-Mail, and Terry DeMio and Meg Vogel of the Cincinnati Enquirer. Beth Macy, author of the book, Dopesick: Dealers, Doctors and the Drug Company that Addicted America, was the keynote speaker.
Nash said he was able to get access to, and thus write stories about, recovery and treatment programs and the individuals they serve because they trusted he was going to use stigma-free language. “It helps a lot when you show an amount of compassion for the people you’re writing about,” he said.
The workshop was developed following media coverage of the 2017 ORAU published report, Communicating About Opioids in Appalachia: Best Practices, Challenges and Opportunities, which was written by Reynolds and Mattson. In their report, they wrote that their work revealed the need to create messages for the general population that “reduce stigma toward individuals with addiction/substance use disorders.”
Examples of these messages include:
- Addiction is a chronic disease not unlike diabetes.
- Addiction is not a moral failure.
- Anyone can become addicted (i.e., challenging stereotypical depictions such as those with addiction are all poor, homeless, dependent on government assistance).
- No one would choose to be addicted.
- Addiction is often associated with early childhood trauma and abuse.
- Those facing addiction need compassion.
Al Cross, director of the IRJ, is hopeful that additional journalism workshops will be scheduled as a means of encouraging more reporters to use stigma-free language in their reporting on substance use and recovery. Cross ended the workshop and underscored the importance of empathy toward people experiencing OUD with a quote from Norman Mailer, as expressed by Linda Loman, wife of Willie Loman, in Death of a Salesman: “His name was never in the paper. He’s not the finest character that ever lived. But he’s a human being, and a terrible thing is happening to him. So attention must be paid. He’s not to be allowed to fall into his grave like an old dog. Attention, attention must be finally paid to such a person.”
“Attention must be paid,” Cross said.