Kansas Citians push to remove stigma from mental illness

06/03/2014 12:57 PM

06/05/2014 1:26 PM

Ginny Krystel admits that as a young woman, she didn’t let people know the entire truth about her family.

It’s not that anyone explicitly told her, “Ginny, tell no one; say nothing about your mother’s mental illness.”

That’s because they didn’t have to. There existed then, as there still does today, a stigma about what it meant to have depression, or schizophrenia, or bipolar disorder that all but guaranteed a daughter’s fealty and secrecy.

To nearly the day she died of a stroke at age 83 in 2009, Krystel’s mother remained a vigorous and accomplished woman. She was a proud Skidmore College graduate who sang with operatic quality.

“When she was well, she was dynamic,” Krystel, 60, of Leawood, said.

But the fact that when Phyllis Krystel wasn’t well she suffered depressive episodes so deep that they led to several suicide attempts, hospitalizations and electroconvulsive therapy had always remained a private affair.

“For a long time, when mom was in the hospital and someone asked, ‘What’s wrong?’ I would just say, ‘She’s not feeling well.’” Krystel said. “The problem, one of the issues (of mental illness), is that people don’t want to talk about it. They are embarrassed or ashamed.”

But that was then — before it became clear as it is now that there is barely a family, school or business in the United States untouched by mental illness.

The National Alliance on Mental Illness estimates that one in four adults in the U.S. suffers some measure of mental illness each year. Suicide, which kills more people annually than murder, stands as the third-leading of cause of death for young people ages 18 to 24.

Today Krystel has added her voice to a growing chorus in the Kansas City area now urging people to open up about mental illness, to share their stories and, perhaps in so doing, help free it from the same stigma that in generations past held the realities of divorce, cancer or HIV/AIDS trapped in a world of whispers.

“I’m more open about it now,” Krystel said, “because I feel like we have to be.”

So do many others.

At the Jewish Community Center in Overland Park, leaders representing more than a dozen mental health organizations gathered for a press conference on May 21 to announce the formation of the Greater Kansas City Mental Health Coalition and the expanded launch of a campaign, www.itsOK.us, to combat mental illness stigma.

The metro-wide coalition — which now includes Catholic Charities of Kansas City-St. Joseph, Research Psychiatric Center, NAMI Kansas, the Suicide Awareness Survivor Support, Bike 4 the Brain and the eight members of the Metropolitan Council of Community Mental Health Centers — is an outgrowth of an earlier coalition first formed in the Jewish community in 2010.

Recognizing that suicide and mental illness were pernicious problems, Jewish Family Services of Greater Kansas City and the Rabbinical Association of Greater Kansas City teamed up to form a Jewish Community Mental Health Coalition. With donated work from the advertising firm Bernstein-Rein, the coalition created banners and posters that were hung during the Jewish High Holy Days in temples and the Jewish Community Center. They sent 8,000 postcards to Jewish families throughout Kansas City.

Last September they launched the early version of the www.itsOK.us website with voices of people touched by mental illness, including Krystel’s.

It’s this campaign that’s now being expanded across the metro with three prime messages: Mental illness is common; it’s treatable; and it’s OK to talk about it.

“Our goal was really simple,” Jewish Family Services Executive Director Don Goldman, 55, said of the initial campaign. “To start a conversation and raise awareness and to say (that) in the ’60s you didn’t talk about cancer. In the ’80s and ’90s, you didn’t talk about AIDS, but now you do. We wanted to say, in our small community, can we change this? Can we make this something you can actually start to talk about it?”

The new campaign will use some of the same tools as the original — posters, banners, mailers, collecting stories on the website and promoting discussion in schools and the like — and expand it area-wide. Billboards and messages in other media may come later.

The operating idea, of course, is that by promoting openness and broader understanding mental illness can be stripped of its taboo. Just as a person with diabetes or cancer or AIDS is not defined by those illnesses, so it should be that the life, talents, contributions or qualities of a person should be not judged based on whether he or she periodically suffers depression or bipolar disorder or schizophrenia or any one of a number of other mental health issues.

“I also had prostate cancer. You know what? I don’t feel any stigma from that!” said John Shuchart, 64, of Hallbrook in Leawood and who, as part of the campaign, has been open regarding his own lasting battles with depression and his family history.

“When I was 26, my 27-year-old brother committed suicide,” he said. The death followed intense depression after a divorce. “My parents never did get over it. I’m not sure I ever fully got over it.”

A father and husband, Shuchart is also an entrepreneur turned teacher and author. His own depression, he said, arose after a car broadsided his own more than a decade ago. The result: more than 15 orthopedic operations, constant pain and a sense of hopelessness that led to antidepressants, an addiction to prescription opiates and thoughts of suicide.

“I had the plan: how, when, what and where. I was done. I was absolutely finished,” Shuchart said.

But therapy, he said, saved his life, as did an epiphany. At a restaurant one day, he looked over and saw a terribly disfigured man, “worse than the Elephant Man,” he said, at another table. The man was laughing, enjoying life.

Whatever stigma society placed on this man, Shuchart reasoned, the man was not buying into it. Shuchart decided neither would he.

“I am never going to be shy about admitting I have depression,” he said, “just like I’m not shy about saying I survived cancer. … Part of stigma is in your own perception. If we think there’s a stigma, there’s a stigma. If we don’t think there’s a stigma, that goes a long way toward ending it.”

At Bernstein-Rein, the anti-stigma campaign is deeply personal to Vice President and Associate Creative Director Mark Miller, who took on the project as part of some 17 years of advocacy following the shocking and sudden suicide death of his son, Matthew, in July 1997.

Bright, kind and loving, Matthew Miller was 13 years old when he took his life in the family’s Johnson County home.

The family had recently bought a new house in the Blue Valley School District, forcing Matthew to switch schools and leave friends behind. He took the change hard. Their once happy boy gradually became desperately unhappy.

When counselors and a doctor suggested that Matthew go on antidepressants, Mark and Cheryl Miller complied, even as Matthew complained that the medications gave him disturbing dreams.

Then, on the eve of a family vacation, Matthew was found dead in his room.

“Yes, I think we were reluctant to talk about Matt’s depression with family or friends,” Mark Miller wrote in an email to The Star. “Frankly, we were also a bit clueless. Having never experienced anything like depression in our family, we tended to dismiss his moody and detached behavior as just part of his being a 13-year-old boy. We took him to see a psychiatrist over the summer months only after his school counselors and teachers recommended it. They had seen things in Matt we hadn’t.”

In the aftermath of Matthew’s death, the Millers went public in the press with their legal suit against the pharmaceutical firm, Pfizer, the maker of the antidepressant Zoloft.

In the end, their efforts, combined with those of other parents who had lost children on antidepressants, would help raise awareness and prompt the U.S. Food and Drug Administration in 2004 to require pharmaceutical companies to place a “black box” warning on the labels of the medications cautioning parents that the medications could increase the chances of suicide or suicidal thoughts in children.

“After Matt took his life,” Miller wrote, “we did make the decision to confront the stigma of suicide head on. We wanted people to know what happened to Matt. It was part of his funeral. We wanted our pastor to speak directly to the many children and parents in the service about the pain and heartache suicide causes.”

Even then, Miller said, going public was not easy.

“We did ask ourselves, would Matt want us to share this about his death?” Miller wrote. “It’s a tough question, because we wanted to be respectful of his life. But ultimately, both Cheryl and I felt that being honest and open about it created opportunities for us to help others through similar traumas. And, who knows, maybe even save a life. Or prompt a discussion. That was the blessing.”

To be sure, Jewish Family Services is only one among countless organizations over the decades to work to combat mental illness stigma.

Inside the federal government, the Substance Abuse & Mental Health Services Administration has an office known as the ADS Center — a shortened version of the Resource Center to Promote Acceptance Dignity and Social Inclusion Associated with Mental Health — that keeps track of dozens of such programs. Even then, it offers only a small sample.

The topic has hardly been ignored, with scholarship stretching back more than 50 years. It was in the late 1950s that Canadian sociologist Erving Goffman spent a year observing 7,000 psychiatric residents at St. Elizabeth’s Hospital in Washington, D.C. In subsequent writings he noted that once released from the hospital a person’s “social position on the outside will never be quite what it was prior to entrance.

“We can employ the term ‘stigmatization,’” he wrote.

Interest has only grown in recent decades, with mental health stigma being a perennial point of discussion at scores of regional, national and international conferences.

“The National Institute on Mental Health has made stigma a priority for about 15 years,” said Patrick Corrigan, a distinguished professor of psychology at the Illinois Institute of Technology and one of the nation’s preeminent researchers on the issue.

“What we know,” he said, “is that stigma has a similar discriminatory effect as racism and sexism.”

By definition, of course, a stigma is a mark, a tattoo, a blemish that casts one as being different from the crowd, possessing socially undesirable characteristics. It is a stain.

Although the most well-known type of stigma is the “public stigma,” the negative and stereotypical views held by the outside world, stigmas actually come in two varieties, Corrigan said. The other is “self-stigma,” the negative, ego-killing beliefs one internalizes.

Both are damaging.

The oldest and most common public stigmas brand individuals with mental health issues as unreliable, unpredictable, incompetent, irrational and, most misleading of all, a slave to their disabilities in ways that might make them potentially dangerous or even violent.

As a consequence, individuals diagnosed with mental illnesses are often denied apartment rentals, jobs, promotions and even quality health care, as doctors are less apt to believe them. Corrigan added that although it is true that a tiny minority of people with mental illnesses can be violent, those individuals tend most often to be people suffering untreated schizophrenia who, at the same time, are on drugs or alcohol and in a state of acute agitation.

“We know that individuals with mental illness are more likely to be victims of crime than perpetrators of crime,” Indiana University sociologist Bernice Pescosolido, who studies mental illness and stigma, wrote to The Star in an email. “My colleague at the University of Virginia, John Monahan, often quotes the statistic that if we remove the crime committed by people with mental illness from the U.S. crime rate, we would still be left with 96 percent of the crime we experience.”

Said Corrigan, “If you have 100 people in a room and want to predict who in that room will be most dangerous, mental illness is not the predictor.”

Although both he and Pescosolido believe that stigma remains a major problem, they also point to signs of greater public understanding and acceptance. Among them is the ADA, the Americans With Disabilities Act, which prohibits discrimination in employment based on disabilities — including mental illness.

Because depression and other illnesses affect so many families, ever more people also seem to realize that certain behaviors are a matter of brain chemistry and not choice. In recent years, numerous celebrities including Glenn Close, Carrie Fisher and Catherine Zeta-Jones have worked to strip mental illness of its stigma by revealing their own or family struggles. Their overarching message is not only that many people deal with mental illness, but also that most manage their lives, families and careers perfectly fine with counseling and proper medications.

“Americans are educated,” Pescosolido said. “They understand the biological nature of these problems and they don’t exhibit the blame that they once did.”

But the greatest educator and anti-stigma weapon, these experts said, is personal contact.

“Famous people have an effect,” Corrigan said, “but not nearly as great as the person at the desk next to you, or the teacher at the desk next to you. Meeting someone with mental illness and having them tell you their story face to face is better than through some medium. But even through a medium, it’s good.

“And the more the person is like you, the better.”

That’s why James Horne, 49, of Kansas City often tells his story of managing his post-traumatic stress disorder, depression and schizophrenia, the same illness that affects Elizabeth Wilson, 46, who lives in Kansas City, North.

Both are speakers with the RESPECT Institute in Missouri, founded in 2002 by consultant Joel Slack. The program allows people who have suffered mental illness to tell their stories to school kids, church groups, any organization that asks, not only to help dispel negative myths and stereotypes, but also to prove that recovery is possible and common.

Neither are shy about revealing the problems they have faced in their lives.

Living on disability now, Horne tells how he was sexually and physically abused as a child, and he became trouble in the classroom and trouble on the streets.

“I was very much a problem child,” Horne concedes.

In a gang from his teens to his 20s, he stole and sold drugs. Trying to turn his life around, at 22 he married, attended school, got a job, had three children. When the marriage faltered in a frightening way (in anger, Horne brandished a gun), his arrest led to a psychiatric center, which in 2001 finally led to the diagnosis of multiple illnesses. And treatment.

For 13 years, Horne not only has managed his life but is the designated payee to manage the lives of at least two others.

“The central message I try to get across,” he said, “is that, you know, people label people with mental illness as crazy or off their rocker. I try to let people see that people with mental illness can get along in life if they are managing their medications and doing what they need to do. …

“I’ve been able to handle what I’ve got and turned it around 180 degrees.”

Likewise, Elizabeth Wilson insisted, “There is recovery.”

On a recent weekday, she moved about the kitchen at Tri-County Mental Health Services where, each day, she prepares lunch for about 30 people and on Fridays teaches a cooking and nutrition class.

She concedes that it wasn’t the life she envisioned as a young girl raised in Maine. Her “fairy tale” dream was to be an epidemiologist, “to have a husband, and be married a long time, and have children and grandchildren, and I would travel the world and take care of people.”

When schizophrenia erupted, it seemed to come from nowhere 20 years ago, following the birth of the first of her two sons. She had a job then as a licensed practical nurse.

“I went to the hospital like two or three times in the first year of the baby’s life,” Wilson said. “I had all the symptoms: the hallucinations, the inner voice, the delusions.”

There is no doubt that the illness upended her life’s course, she said. But it is also an illness that she is managing.

“I tell my story to all types of people to give them a better view,” Wilson said. “To look at me, you may not think I have schizophrenia. I’m a person first. It’s no different than having diabetes.”

Jonathan Katz, meantime, isn’t a speaker for any group or program. But the 32-year-old Overland Park resident has long been open about his own trials with borderline personality disorder — a fact that strained some of his friendships, but also helped save his life.

In one particularly dark time, he posted a Facebook message telling friends across the country that he just overdosed on his medication.

“My brother-in-law had to call an ambulance from Chicago,” Katz said.

For some people, his posts offered information so detailed and personal that they requested he cease posting it.

“I definitely scared some people away,” he said, but not all. “In fact many people have messaged me on Facebook and said, ‘Your courage is inspiring,’ and that they have faced the same thing.”

Katz’s illness has caused upheaval. Married to his high school sweetheart and with a young child, Katz currently is going through an amicable divorce.

“We’re still good friends,” said his wife, Rebecca Katz, a 30-year-old attorney.

Dealing with mental illness prompted her to become a facilitator for a 12-week Family-To-Family class held at the Jewish Community Center in Overland Park. The class teaches family members to understand and cope with various mental illnesses.

“I think because of his openness, it did inspire me to be open as well,” Rebecca Katz said.

Jonathan Katz is convinced it is the best course.

“I feel open about it, because it’s reality,” he said.

An animal lover from childhood, Katz recently started a new job at a Petland in Olathe. His manager, Jason Hormann, 36, knows about Katz’s diagnosis.

“It’s life,” Hormann said, adding that Katz was a “fantastic” employee. “I don’t think you can go anywhere and not find someone who isn’t dealing with it.

“It’s funny. So many things we make out to be taboo — then, 10 years down the road…”

He shrugged. Taboo no more.

To reach Eric Adler, call 816-234-4431 or send email to eadler@kcstar.com.

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