Unwell and unashamed
The stigma of mental illness is under attack by sufferers, who are coming out publicly and defiantly
For several years, she wrote about her bipolar disorder under a pseudonym. She described how she’d been hospitalized four times, twice since her first child was born. She explained how she went off her medication during both of her pregnancies and how each time — once as the mother of a newborn and then again weeks into her second pregnancy — she was escorted from her home in police handcuffs, defiant.
She blogged to connect and reach other mothers grappling with mental illness. Ultimately, however, she decided that hiding her identity was actually perpetuating the shame long associated with mental disorders.
So even as her parents urged her not to, Jennifer Marshall in 2013 typed her real name on a blog post, hit publish and waited for the reaction.
With those keystrokes, Marshall, who lives in Ashburn, Va., joined a growing community of people with mental illness who have chosen to out themselves.
Marshall describes a surge of strength as she shared her story. “It’s human connection,” she said. “When you find someone who has been able to overcome something that you’re struggling with, it’s really powerful.”
“It felt as though I was walking through life carrying this incredibly heavy secret.”
Jennifer Marshall: Listen to her story
Likened by some to the gay rights movement, with its beginnings in personal revelation, the groundswell to lift the stigma connected with mental illness has had a multiplying effect accelerated by social media. The more people who “come out” about their mental illness and are met with acceptance, the more others feel it’s safe to do the same.
Since the beginning of this year, millions have tweeted about their mental illness, many using established hashtags. For example, the campaigns #imnotashamed and #sicknotweak were tweeted 75,000 times and 139,000 times, respectively, since Jan. 1, according to an analysis from Twitter. The movement #BellLetsTalk, which began in Canada to “start breaking down the barriers associated with mental illness,” received 6.8 million tweets in January from all over the world.
While U.S. mental-health experts said there is not yet scientific data tracking the increase in voluntary disclosures of mental illness, social media has been employed so much to that end that a former Johns Hopkins professor is studying behavioral trends by mining tweets in which people talk explicitly about their mental illnesses.
Glen Coppersmith said that he was initially surprised by how many people disclose that information online. Coppersmith’s Twitter analysis shows that since 2014, hundreds of people a day have tweeted that they have received diagnoses of mental illness.
“Some of it is to end the stigma; some is an explanation of past behavior,” said Coppersmith, who recently started a company, Qntfy, to analyze mental-health data. He added that he “wholeheartedly” believes such disclosures have risen to the level of a movement.
The trend has been buoyed, experts say, by advancements in neuroscience that have enabled people to cast off stereotypes of mental illness as a personal failing and view it instead as the result of physiological changes in the brain that can be treated much like physical illnesses.
“We’ve become a much more sophisticated society about mental health,” said Bernice Pescosolido, a professor at Indiana University and an expert in mental-health stigma. “As people, we are opening up more about issues of race, issues of gender, issues of health generally. This is intertwined with the fabric of life.”
But prejudice persists, particularly in the workplace, and Pescosolido and other experts say it remains to be seen whether the outpouring that is contained largely to social media will translate into advocacy and less discrimination in daily life.
The stigma “is still out there,” Pescosolido said. “I think it’s an opportunity. We’ve had a resurgence in the science; we’ve had a resurgence of people coming forward.”
Sarah Fader, who has panic disorder and depression, poses on stage at New York University’s Provincetown Playhouse in Manhattan on April 13, 2016. Fader co-founded the blog Stigma Fighters as a forum for those with mental illnesses. Hundreds of people have written pieces for the blog since its launch in March 2014.
The stigma fighters
Sarah Fader did not want her children to grow up thinking they had to be ashamed of their feelings, as she had been her entire life. So she decided to open up about the panic disorder from which she had suffered since she was a teenager.
In early 2014, she penned “Fighting Against the Stigma of Mental Illness” for the Huffington Post to describe her struggles. She described how others had belittled her for her illness, telling her that she was merely being “dramatic” or disparaging her use of antidepressants. Hundreds of people from all over the world sent her messages relating their own experiences with shame.
Then Fader met Allie Burke, who lives with schizophrenia, through a mental-health advocacy community on Facebook. The two women teamed up to launch Stigma Fighters, a blog and nonprofit dedicated to giving other people a platform to share their stories.
Since its launch in March 2014, hundreds of people have written pieces for the blog. Fader originally let contributors write anonymously or under first names, but then Marshall reached out to Fader through social media to share her own epiphany about not hiding behind a fake name.
So now Fader requires almost everyone contributing to the blog to write under their full names. Those who overcome their fears of being judged and do so start to view themselves as survivors.
Amy Bleuel, who was depressed and plagued with suicidal thoughts most of her life, noticed the same phenomenon when she launched Project Semicolon in 2013. Her father died by suicide when she was 18, and she knew that he, like she, had felt alone in his illness.
“I want to give other people hope.”
Sarah Fader: Listen to her story
In April 2013, after a conversation with a friend yielded the idea, Bleuel tweeted a request for people to draw a semicolon on their wrists.
People with mental illness often think their lives are over. But the semicolon signifies that there’s more to your story, Bleuel said; it’s used by authors when they’re not ready to end a sentence. Since then, thousands of people around the world have posted pictures of themselves on social media with real semicolon tattoos.
The tattoos serve as permanent reminders that life does go on.
“People want to know they’re not suffering in silence,“ Bleuel said. “We want to have that discussion. We’re done losing people to suicide; we’re done not knowing what to do.”
The movement to lift the stigma is also changing how mental illness is portrayed in popular culture and the arts.
In the FX Network show “You’re the Worst,” the audience came to know one of the main characters as a gregarious party girl with, yes, questionable morals. Then, in the second season, it is revealed that Gretchen Cutler’s lifestyle is a diversion from recurrent depression. When it comes roaring back, she fears telling her boyfriend that “my brain is broken.”
“To be honest, I felt scared after I shared my story publicly.”
Rachel Griffin: Listen to her story
The portrayal was widely acclaimed.
“I continually run into people who suffer from depression, and it was something very secretive, and we’re just seemingly starting to come into the light a little more,” said Stephen Falk, the show’s creator. “I thought if we could help that process along at all, then we’d be doing a service.”
That’s what Rachel Griffin, a singer-songwriter in New York, had in mind when she embarked on writing a musical about life in a psychiatric ward. The main character, Jane, is a young woman with severe panic disorder and depression. Throughout the show, another character portrays Depression — always hovering, sometimes controlling the conversation. Jane’s symptoms worsen until she checks herself into a mental hospital.
Griffin sees her show as doing for mental illness what “Rent” did for HIV/AIDs by presenting complex characters who are more than just their illnesses.
She started writing the show while riding the subway as an outlet for her depression and anxiety. “It’s about empowerment,” she said.
Ending the stigma: Musical takes on mental health
Rachel Griffin, who has anxiety and depression, poses at the Provincetown Playhouse. Griffin is a graduate student in music education at New York University. She started a twitter campaign, #imnotashamed, calling on people to disclose their mental illnesses and declare themselves unashamed. She also wrote a musical comedy set in a psychiatric ward.
Coming out on the air
“The stigma is most damaging not when others see it in a certain way, but when we see it that way ourselves,” said Michael Landsberg, a successful Canadian sportscaster who has a diagnosis of depression. “I tell people all the time . . . when you believe the stigma, that it’s a reflection of weakness, you tell it in a way that sounds weak: ‘I’m sorry; I don’t know why I do this; I’m so ungrateful.’ ”
The alternative, Landsberg says, is this: “I suffer from a mental-health problem; I have depression; this has taken a lot from my life.”
Before suffering a breakdown at age 39, Landsberg said, he was among those who thought someone with depression should just buck up and get over it. Then his illness descended.
It didn’t knock him down at first, he said. Rather, it tapped at him incessantly. He was on and off medication until November 2008, when the pain became too much to bear and he had his final relapse.
of American adults live with schizophrenia
of American adults live with bipolar disorder
of American adults live with major depression
“With severe depression, one of the symptoms is loss of being able to feel joy,” said Landsberg, 58. “You know with 100 percent certainty you won’t be able to feel joy that day. That’s the most profoundly damaging aspect of depression.”
In 2009, Landsberg was set to interview hockey player Stéphane Richer on his show when in his research he learned that Richer had also battled depression.
Landsberg asked Richer whether it was okay for them to share their experiences on the air.
During the interview, Richer confided that he tried to kill himself in 1995, four days after winning the Stanley Cup with the New Jersey Devils. Emails poured in, some from viewers who said that hearing the two men talking about depression openly and with no shame was life-changing.
Just a few months ago, Landsberg started a social-media campaign, #sicknotweak. The international response — a lot of it from the United States — was overwhelming, he said. The catharsis and sense of community that followed emboldened him, Landsberg said.
“The best way to show someone you’re not weak is to show it with strength,” he said.
Such boldness is contagious.
Paolo del Vecchio, the Substance Abuse and Mental Health Services Administration’s director for mental health services, said he suffered with depression and anxiety since he was a child but was reluctant to talk about it openly. Then, through his work, he began meeting people who were willing to open up.
“That made all the difference; that made it safe for me to be able to share,” he said. “When people disclose, it is the most effective way of reducing negative attitudes, what we’ve called stigma. And that’s the power.’’
‘This Is My Brave’
Helen Dennis was preparing to stand alone on a stage in front of an audience on May 15 and describe how what was dismissed as moodiness when she was a child was actually the first sign of bipolar disorder. Dennis’s illness later manifested itself as deep depression. In 2007, when she was 27, she became so desperate to escape the pain that she called in sick to work, ready to take her own life.
“I would have these periods when I couldn’t think straight. The suicidal thoughts were rampant. . . . Nothing I could say or do could make me feel better,” she said. “It’s that sense of loss of control over your very personhood that really made me feel like I was weak. I said I’m the worst person; I’m not strong enough to live this life.”
She called her now-husband, and he knew by her voice that something was very wrong. He came home and, for the first time, she shared everything with him. He took her to a hospital, where she was finally received a diagnosis of bipolar disorder.
But for the most part, Dennis was too ashamed to speak about her illness.
Then she heard about Jennifer Marshall.
Marshall experienced her first manic episode at 26. She was forced to give up a high-pressure job at a recruitment agency in Washington after two back-to-back hospital stays. She had been able to keep her symptoms at bay until she went off her medication several years later for her pregnancies.
Once she told her story, revealing her identity on her blog as a mother with bipolar disorder, no one judged her, Marshall said. Instead, she received a flood of supportive emails. Whatever residual shame she felt about her illness dissipated.
In 2013, Marshall started “This Is My Brave,” a stage show appearing around the country this spring in which cast members tell their stories of mental illness, some for the first time. Dennis was to be among those to stand at center stage under a spotlight, sharing their stories of mental illness.
Dennis isn’t sure what compelled her to audition for Marshall. But on that day, she said, the words poured out.
“I’m a touch terrified because there is still such a strong stigma around it; there’s a lot of misinformation about it,” she said. “But I truly believe as people see co-workers and friends come out of the woodwork and be honest about this . . . it shows it can happen to anyone. . . . You feel so alone when you’re going through the worst of it; to hear you’re not alone for me is revolutionary.”
Jennifer Marshall, who has bipolar disorder, displays a tattoo of the word “brave” while posing on stage at Busboys and Poets in Washington. Marshall is a founder of the organization This Is My Brave.