Recovering substance abusers brave stigma by giving up secrecy

https://www.washingtonpost.com/national/health-science/some-with-alcohol-and-drug-disorders-no-longer-want-to-be-anonymous/2015/09/30/8914fe90-6086-11e5-9757-e49273f05f65_story.html

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For decades, anonymity has been a bedrock principle of Alcoholics Anonymous and other groups that help people recover from substance abuse. They have long insisted that secrecy, even for those who have conquered addiction, is the only way to ensure that people can feel safe coming to meetings.

But now, with a generation in the grip of an opiate epidemic, many younger activists are publicly acknowledging their addiction and recovery, and encouraging others to do the same. Stepping forward, they say, is the only way to earn social acceptance, political clout and badly needed money for treatment.

“So long as we keep ourselves in the shadows, we will remain in the shadows,” said Chris Poulos, 33, a third-year law student at the University of Maine who was addicted and homeless as a teenager and served nearly three years in a federal prison for dealing cocaine.

The idea of going public has been tried a number of times, with only limited success, in the eight decades since Bill Wilson and Bob Smith started working with alcoholics in Akron, Ohio. The stigma of substance abuse is deeply ingrained in America, where many still consider addiction a personal failing, not a disease.

But leaders of the latest effort hope to reach a milestone Sunday at the Washington Monument, where they expect tens of thousands of people to attend a very public event, Unite to Face Addiction, and launch a national advocacy group.

Their tactics echo the strategy of people with HIV and AIDS, who organized in the 1980s to demand treatment, and, more recently, the approach of transgender people.

[‘And then he decided not to be’]

Jason Snyder hid his addiction for years. When his brother Todd died in 2005 of a heroin overdose, he held his tongue and kept on using alcohol and pills. When a second brother, Josh, died two years later, also of a heroin overdose, Snyder said nothing to his wife, family or friends about his own accelerating drug use. He went on finding opiates on the street.

After his $300- to $500-a-week habit destroyed his marriage and drove him into rehab, he still didn’t talk about addiction and recovery, even after four years of abstinence.

In the past few months, however, Snyder has begun to reject the secrecy he so zealously tended. Now, if the subject comes up, he will discuss his recovery and answer any questions. Two weeks ago, the Pennsylvania native took his biggest step: He went to Harrisburg and spoke with a group of top state officials about the vast unmet needs of people like him.

“It’s something I never would have thought about doing earlier in my recovery,” said Snyder, 41, who lives in Pittsburgh and runs a nonprofit group that helps people find health insurance. “This was always something to hide and be ashamed of.”

Millions, of course, still aren’t interested in shedding their anonymity.

“There are many people, especially newer people in the 12-step communities . . . who do not feel comfortable speaking publicly about their own recovery but are okay with others doing it,” Neil Capretto, an addiction psychiatrist and the medical director of Gateway Rehabilitation Center in Pittsburgh, said in an e-mail.

With good reason. When researchers at the Johns Hopkins Bloomberg School of Public Health tested attitudes toward two of society’s most ostracized populations — the mentally ill and substance abusers — opinion strongly favored the first group. Their 2014 survey found “significantly more negative views toward persons with drug addiction.”

More people “were unwilling to have a person with drug addiction marry into their family or work closely with them” and were “more willing to accept discriminatory practices against persons with drug addiction,” they wrote in the journal Psychiatric Services.

“We tend to still think of addiction as a personal failing to be overcome, rather than as a medical condition that can be overcome,” said Colleen L. Barry, the lead author of the study. “. . . That has real implications for who society blames. If you think addiction is all about an individual making bad choices, there’s no role for public policy, no role for structural changes.”

[When life begins in rehab]

Research does offer an avenue toward changing public opinion: In a separate Johns Hopkins study, researchers read nearly 4,000 vignettes about those who were successfully treated for drug use and mental illness. Attitudes changed. The stories led to “less desire for social distance, greater belief in the effectiveness of treatment and less willingness to discriminate against persons with these conditions,” they wrote in the journal Social Science & Medicine this year.

“It’s . . . hard to hate up close,” said Poulos, a member of the group Young People in Recovery who sits on a Portland, Maine, drug task force and has an office in the local police station where he was interrogated a lifetime ago. “It’s easy to hate the unknown.”

He and other younger leaders believe now is the time to try again. Millennials are more comfortable than the previous generation sharing their private lives on Facebook and other social media. The Obama administration and law enforcement agencies are trying to reduce the number of nonviolent drug offenders in the criminal justice system. And in recent years, “recovery walks” have proliferated in cities across the country as heroin and pills have struck the middle class.

Like the HIV activists, advocates for substance abusers also are trying to change the language of drug use. They no longer speak of “addicts” (they are now “people with a substance-use disorder”) or getting “clean” (it’s “abstinent” now).

Long ago, physicians, researchers and people who treat substance abusers concluded that addiction is a treatable disease. Marty Mann, the first woman to overcome alcoholism through Alcoholics Anonymous, became an advocate for the medical model beginning in 1944. She carried that message to the public for more than three decades before the 1980s war on drugs derailed her efforts.

In 1976, “Operation Understanding” gathered 52 celebrities together to acknowledge their alcoholism in another attempt to convince people that there was nothing to be ashamed of.

Actor Dick Van Dyke, former astronaut Buzz Aldrin and others made headlines that day. Yet when CASAColumbia, a substance-abuse research and advocacy group, conducted a 2008 survey on the causes of addiction to illegal drugs, the public cited lack of willpower and self-control (28.7 percent) as well as genetic predisposition (29.9 percent), inability to resist peer pressure (41.9 percent), easy availability (35.1 percent), and emotional or mental illness (34.8 percent) among the reasons. They were more willing to accept the medical explanation for addiction to alcohol.

[One county, 70 minutes, 8 overdoses]

According to the federal Substance Abuse and Mental Health Services Administration’s 2014 survey, 21.5 million people 12 or older have a substance-abuse disorder, including 17 million who are addicted to alcohol. An additional 23 million 18 and older say they are in recovery, according to a 2012 survey by the Partnership at Drugfree.org. An average of 110 people die each day of overdoses from legal and illegal opiates.

Snyder says he had a typical upbringing in a Mundys Corner, Pa., home where there was very little alcohol. His father was a lineman for the electric company; his mother stayed home. He played Little League, wrestled and was an offensive lineman on his high school football team.

He started experimenting in high school, and his addiction mushroomed in his 30s.

“I would use on the weekends as part of partying. We were having drinks. It happened to be available,” he recalled. “Then Sunday mornings were rough. Then Monday mornings were rough. You don’t realize it’s happening. . . . I can remember standing in the shower one morning thinking, ‘Oh, my god — I’m addicted to these things.’ ”

Snyder said he had everything he wanted growing up but that he “didn’t quite feel right in my own skin. I always felt like there was something out there that I was missing. I felt like I was on the outside, looking in.”

He doesn’t know why he found recovery before the disease killed him, too. Now he speaks for his dead brothers and anyone he can still help.

“Treatment works, and recovery is possible,” he said. “I was afraid to tell anybody. I was afraid to seek help because . . . it had the potential to dismantle me.

“At least that’s what I thought.”