There’s a new poster around town. On one side, it lists the sorts of things you might say to someone who has just told you that they have ovarian cancer or heart disease: “I’m sorry to hear that.” “Can I drive you to an appointment?” “I’m here for you when you need me.” On the other, it lists the things that people who have been diagnosed with a serious mental illness often hear: ”Try thinking happier thoughts.” “Everyone feels that way sometimes.” “Snap out of it.”
The “do say” and “don’t say” advice is part of a $1 million “Make it OK” advertising and public-awareness campaign launched this past year by HealthPartners, Regions Hospital, the National Alliance on Mental Illness Minnesota (NAMI MN), Twin Cities Public Television, and a half dozen other nonprofits and providers. Funding came from individual and corporate donors, along with a big assist from the St. Paul Foundation, said Donna Zimmerman, vice president of government and community relations at HealthPartners.
Elements of the campaign have included online and print advertising, TV and radio spots, a soon-to-be-available (and free) downloadable toolkit for communities and schools to use, a website, and a Twin Cities Public Television documentary series that features health-care providers, advocates and real people who have come forward with their stories, including meteorologist Ken Barlow.
Campaign materials feature one-on-one conversations between friends, and include such pointers as: “stop the silence,” “be nice,” “keep in contact,” “don’t ignore it,” “offer help, not advice.”
They seem like rudimentary messages – ones that we all should have gotten by now.
But stigma is alive and well across the nation and worldwide, despite the prevalence of mental illnesses (1 in 4 adults and 1 in 5 children) and advances in public policy (including the hard-won 2008 Wellstone-Domenici Mental Health Parity and Addiction Equity Act).
A New England Journal of Medicine survey in the wake of the Sandy Hook Elementary School shootings found that almost half the respondents believe that people with a serious mental illness are more dangerous and violent that the rest of the general population (the opposite is true; only about 5 percent of violent crimes are attributable to people living with severe mental illness, who are more like to be victims than perpetrators). The survey also found that very few said they’d be willing to work closely with or live next door to a person with a serious mental illness (28.6 percent and 33.1 percent, respectively).
A ‘wake-up call’
Sue Abderholden said she developed a personal measure for stigma when she stepped into her role as executive director of NAMI MN about 12 years ago and began talking with people living with serious mental illness.
“I’d ask them if they’d ever received a get-well card while they were hospitalized,” she said. “And pretty much everybody said no. It’s a seemingly small thing, but it’s huge in terms of how we support and react to people with mental illnesses. It’s a pretty solitary journey, whether it’s for you or for a loved one.”
Besides isolation, the serious and corrosive effects of stigma result in job loss, difficulty finding housing, higher school dropout rates, overrepresentation in prisons, delays in seeking care, poor access to care and inadequate insurance coverage.
And stigma doesn’t just exist “out there,” Abderholden said. It persists within the health-care world, including in emergency rooms and psychiatric wards.
As the Make it OK partners began collaborating about four years ago, NAMI took an informal survey of patients (and their family members) who had been hospitalized for a mental illness. The survey of about 100 respondents asked if they took away messages of hope; if they felt they understood what to do when they were discharged from the hospital; if they understood their condition, their treatment options, and potential side effects of any medications. Fewer than half responded affirmatively, Abderholden said.
“That was a wake-up call to us that even within health care, we need to pay way more attention to the kind of care we’re providing,” said Zimmerman. “People get good care … but not necessarily do we always remember that we may have to go above and beyond in making sure that people with mental illness come away with a feeling of hope when they are discharged. And also, what are we doing long term to make sure that we are supporting their family in a way that they can be more effective, too?”
Abderholden has taken her anti-stigma show on the road, not only to hospitals and clinics, but also to community groups and teachers’ associations, most recently to a gathering of special-education teachers in Brainerd.
In one of the guided activities, Abderholden asks participants to shout out every slang word they know for mental illness. She gives them five seconds. “Of course they can do it very quickly: ‘psycho, nuts, wacko, crazy’ – things like that,” she said. They she asks them to shout out slang words for diabetes or heart disease. “Of course there are none.”
She challenges people to close their eyes and think of the first images that come to mind of someone with a mental illness. “Mostly it’s people who are older, they look like they need a bath, they might be talking to themselves, wearing a heavy coat in the middle of July – a very, very negative image. So I ask people, ‘Well, if that’s the image you have, why would you ever want to admit that you have a mental illness?’”
Finally, she talks about personal characteristics assigned to people with a chronic illness.
“When we describe someone who’s battling cancer, we use words like ‘courageous’ and ‘determined,’” she said. “Shouldn’t those same words be used for people with mental illness? I can tell you we never hear those words used for people with mental illness. And yet it takes an incredible amount of courage if you have schizophrenia, and you’re hearing those very dark voices, to get on a bus and go to a job. And it takes an incredible amount of determination if you have serious depression, where it feels like one of those old heavy wool blankets soaked in water and partially frozen is hanging on your shoulders, to be able to get out of bed.”
Language is important, Abderholden says. And a more conscious choice of words can help reduce stigma. For example, put the person before the illness. Rather than “a schizophrenic,” refer instead to a “person with schizophrenia.” And rather than “mental illness,” refer instead to “mental illnesses.”
Abderholden has been asked, couldn’t your time and resources be better spent elsewhere?
“I’ve spent my entire life passing laws,” she said, “but if you don’t also change the attitudes, it doesn’t always help. You always have to do both. The same was true for the Women’s Rights Movement – any movement. And I consider this to be the Mental Health Movement, not just some project we’re working on.”
Nay- and yay-sayers
One who takes a jaded view of these efforts is Paul John Scott, of Rochester, Minn., a health journalist and frequent commentator on the “financial and ideological links between patient advocacy the drug industry.”
“I wish stigma were the primary problem with how mental illness is addressed in our society,” Scott said. “I guess I have to question the whole stigma argument when the drugs used to treat these conditions are some of the best-selling drugs in the country. The stigma campaigns are relying on a biological-based approach to the illness that plays right into the hands of the drug industry and isn’t supported by the science.”
Scott says he wishes that more attention were being paid to the reliability veracity of clinical-trial results and the side effects of medications, and cited Monday’s news that Johnson & Johnson has been ordered to pay $2.2 billion to settle claims of fraudulent marketing, including of the antipsychotic drug Risperdal.
“I don’t question the good intentions of the people pushing the stigma campaigns, and I obviously don’t question the good intentions of these families that are suffering,” Scott said. “I just wish the patient advocacy community would be as concerned about the aggressive marketing of these drugs to wider and wider populations … as they are about other problems related to mental illness.”
Writer Marya Hornbacher, who recounted her harrowing and horrifying experiences with rapid cycling bipolar disorder in her 2008 bestselling memoir “Madness,” champions both advances in medicine and aggressive anti-stigma campaigns.
“There are very few people who are going to argue at this point that pharmacological answers to mental-health concerns are not real,” said Hornbacher, who attributes her relative wellbeing “and wonderfully boring and deeply ordinary” life these days to advances in medications and other lifestyle changes. “Most of us [who are diagnosed with a mental illness] do have some sort of pharmacological component to our recovery,” she said. And despite the problems, the side effects, the imperfections, and the money flow, “Nobody I know is saying, ‘Hey I wish pharmaceuticals would just go away.’”
Hornbacher, who was raised in Edina and now lives in Chicago, applauds the efforts of the Make it OK partners, even as she despairs at the need for them.
“I think these efforts are incredible. I think they’re necessary. I’m so proud of these people who are making these things happen,” she said. But within the community of mental health, “I think we’re all feeling the frustration that we have to start at such a ground-zero level, and explain to people very slowly and clearly that this [stigma] is really inappropriate.
“We made it OK a long time ago. Everybody else is still catching up.”