By Laura Hilgersnov
Originally published on November 4, 2017 in the New York Times
San Anselmo, Calif. — Fay Zenoff recently met a friend for dinner at a sushi restaurant in Sausalito, Calif. After they were seated, a waitress asked if they’d like wine with dinner. Her friend ordered sake. Ms. Zenoff declined. “Not for me,” she said. “I’m celebrating 10 years of sobriety this weekend.”
Because of the stigma attached to addiction, Ms. Zenoff, who is 50, took a risk speaking so openly. But when she and her friend finished eating, the waitress reappeared. This time she carried ice cream with a candle in it and was accompanied by fellow members of the restaurant staff. They stood beside Ms. Zenoff’s table, singing “Happy Birthday.” The evening, Ms. Zenoff recalled, was “just amazing.”
A victory, too. For 25 years, Ms. Zenoff, who began adult life with an M.B.A. from Northwestern, was an alcoholic who dabbled in heroin, Ecstasy and cocaine. “I felt so much shame about my past behavior,” she said, “that it was a huge hurdle to admit I was in recovery even to my family and friends.” It took three years for her to speak up among friends and another three for her to do so publicly.
Now as executive director of the Center for Open Recovery, a Bay Area nonprofit, she’s promoting an idea considered radical in addiction circles: that people in recovery could be open and even celebrated for managing the disease that is plaguing our nation. She and other advocates believe that people in recovery could play a vital role in ending the addiction epidemic, much as the protest group Act Up did in the AIDS crisis.
It’s an idea that fits with the report released by President Trump’s opioid commission last week. Among the report’s 56 recommendations was a suggestion that the government battle stigma and other factors by partnering with private and nonprofit groups on a national media and educational campaign similar to those “launched during the AIDS public health crisis.”
Speaking up, however, carries real risk. People — especially doctors and pilots and others in similarly sensitive occupations — fear losing jobs, promotions and social standing if they admit they’re in recovery. The paradox is that stigma is most effectively dispelled through openness.
The need has never been greater. Approximately 21 million Americans (Facing Addiction in America) suffer from substance abuse. On average, 175 die from overdoses every day.
“People are dying who don’t need to die,” Ms. Zenoff said. “If it were safe for more people to say, ‘I’m in recovery,’ I think many more people could say, ‘I need help.’ ”
Other nonprofit groups, like Faces & Voices of Recovery in the District of Columbia, Facing Addiction in Connecticut, and Shatterproof in New York, are also encouraging the 23 million Americans in recovery to be more vocal. Even grieving families are growing more honest in obituaries, mentioning addiction as a cause of death with greater frequency.
This openness flies in the face of tradition. Since Alcoholics Anonymous was founded in 1935, anonymity has been the recovery community’s bedrock. In 12-step meetings, people identify themselves by first names only. Outside “the rooms,” they often don’t reveal that they are members of these programs at all.
As the mother of a young adult in recovery, I’ve seen the miracles these programs make possible. Anonymity creates a sense of safety that recovering addicts desperately need. Twelve-step programs save countless lives. There are many reasons not to tamper with them.
But I’ve also met men and women who are 20, even 30, years sober. They’ve overcome adversity and often trauma to live lives of courage, resilience and grace. I have seen their stories in “The Anonymous People,” a documentary directed by a co-founder of Facing Addiction, Greg Williams.
We need to hear more from them. There’s a way to share these stories while still honoring the traditions. In her work, Ms. Zenoff suggests people simply say, “I’m in recovery,” without identifying themselves as a member of A.A. or another 12-step program.
In fact, many recovering addicts are not in a traditional program. Some manage recovery independently. Others join Refuge Recovery, a program based on Buddhist principles, or Smart Recovery, which encourages reliance on self rather than a “higher power.”
No matter the path, why should they remain silent? “It’s like being a vegan but only being able to talk about it in a kitchen or a hospital,” Ms. Zenoff said, “or with another vegan.”
This spring, the Center for Open Recovery ran posters on San Francisco Muni buses, featuring vibrant people of all races, accompanied by the tagline “This Is Recovery.” For inspiration, the organization looked to the “Silence = Death” posters that raised awareness years earlier, encouraging openness despite the stigma.
At the onset of the AIDS epidemic, many Americans blamed gay men for bringing the fatal disease upon themselves.
Unenlightened Americans today consider addiction a moral failing as well, one as likely to spur a trip to prison as to a treatment center.
“The Act Up marches, the AIDS quilt and the posters made people more sympathetic, and made gay people seem more human,” said Daniel Royles, an AIDS historian at Florida International University.
The activists shifted people’s understanding of the disease. After several years of pressure from people with AIDS and their supporters, to give one example, the federal Health Resources and Services Administration spending on AIDS programs increased more than thirteenfold in 1991, to $220.6 million from $16.5 million.
The government hasn’t yet done the same for addiction, even though this treatable disease kills more Americans every year than AIDS at its 1995 peak.
Consider how addiction compares with other diseases: In 2016, the National Institutes of Health devoted $5.6 billion to public research funding on cancer and $3 billion on AIDS. Substance abuse disorders received $1.6 billion, even though one-and-a-half times more people suffer from addiction than from all cancers combined. President Trump’s recent declaration of the opioid crisis as a “public health emergency” provided no immediate additional funding.
Despite the headlines, we’re still a nation in denial. According to Facing Addiction, one in three American households have a family member in active addiction, in recovery or lost to an overdose. But a survey by the organization also showed that nearly half of respondents weren’t convinced it’s an illness — despite a 2016 surgeon general’s report defining addiction as a “chronic neurological disorder.”
Jim Hood, Facing Addiction’s co-founder and chief executive, joked that addiction “is an illness that nobody is ever going to get, nobody ever has and nobody ever has had.”
People in active addiction — who can act in baffling ways — are perhaps less likely to change our perceptions of substance abusers. But what if addiction’s human face was your minister, who’d once struggled with heroin? Or your favorite college professor, who kicked a drinking habit and eventually earned her Ph.D.?
If Americans heard enough stories, would they clamor for more research funding and treatment beds then?
The decision to speak up is personal — and the stigma is real, especially in the workplace. It’s so pervasive that when Ms. Zenoff took over the Center for Open Recovery in 2014, her own board members, many in recovery, were reluctant to post their names on the organization’s website.
Stephen Simon, one of the funders behind the Center for Open Recovery, understands the hesitancy. The co-founder of a San Francisco investment firm and a member of the family that owns the Indiana Pacers basketball team, Mr. Simon, 51, has been sober for five years, after battling opioid painkillers. He’s open with his recovery privately, yet expressed “vulnerability” about speaking publicly. He agreed to be identified here only because of the staggering numbers of people suffering and dying.
“It’s so bad that I think anyone who’s been given a reprieve from the horrific nature of this disease should at least consider talking about it,” Mr. Simon said. “Maybe it will free up dollars or spur people with ideas and influence to bring an end to the epidemic. We can’t even measure what addiction is doing to the collective soul of the world.”
A link to a preview of the documentary The Anonymous People.
The issue of anonymity is very briefly mentioned in A History of Agnostics in AA:
You also have to wonder just how relevant “anonymity” is today. We live in a different world, with the Internet and social media, and along with that the public acknowledgement and acceptance that many of us are afflicted with a variety of diseases, including addiction.
Is it the best thing to be “ashamed” of our alcoholism, and to try to hide it from others, to be “anonymous”? An organization founded in 2001, Faces and Voices of Recovery, thinks not. It advocates for better funding, research and legislation for alcoholics and addicts and suggests that part of achieving those goals is for those with long-term recovery to: “Stand up, stand out, speak out, and be proud about it. Of course, in early recovery, many seek the comfort and cocoon of anonymity. Eventually, it would be great to let everyone see the butterflies. We are many and we are beautiful.”
That’s certainly a different approach to helping ourselves and others to sustain our recovery.
Anonymity may very well be helpful in early recovery. Time is needed to learn and commit to a plan that permanently rejects alcohol and/or drugs.
But after several years of being clean and sober? To quote from the article: “…anyone who’s been given a reprieve from the horrific nature of this disease should at least consider talking about it”.
Maybe our collective pretending that there is no problem isn’t the best way – for ourselves and especially for others – to deal with the problem.
What are your thoughts on anonymity?