Mental Health Association of Portland

Oregon's independent and impartial mental health advocate

Virtual reality machine helps hospital staff understand schizophrenia

Posted by Jenny on 18th May 2014

KGW.com, May 14, 2014

With the help of a virtual reality machine, Portland’s Adventist Medical Center is teaching employees what it’s like to [have schizophrenia].

“We believe they need to have a better understanding of mental illness so they can provide better care,” said Dr. John Custer.

The machine mimics the mind of a schizophrenic person, with multiple images and noises bombarding the viewer.

“There’s a lot of stimulation and you don’t know where to focus,” said Adventist employee Scott Conlee. ”Every voice seems to say something valid, but it’s negative.”

The technology was brought into the hospital during Mental Health Awareness Week.

On Sunday, Adventist is sponsoring a walk to benefit the National Alliance on Mental Illness.

“It’s no joke and the stigma of mental illness is horrendous. It keeps people from getting help,” said Dr. Custer.

Conlee believes the machine gave him important insight.

“We really have to focus on how we interact and explain things and make sure all our patients know they’re in a comfortable and safe environment,” he said.

 

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Schizophrenia Oral History Project collects voices

Posted by Jenny on 8th May 2014

The New York Times, May 8, 2014

The psychologist Lynda Crane found that of the many injuries inflicted by schizophrenia, the greatest could be the pain of being forgotten. Just naming the illness somehow erased the person, something she learned when her 18-year-old son’s doctors said he had schizophrenia. Six years later, he committed suicide.

“It took me a long time to come to terms with it,” Dr. Crane says. “Even I had a hard time understanding it, how this bright man, with a brilliant future, could suffer like this. One thing I learned was that as soon as you mentioned the word, people stopped seeing the person. They just saw the diagnosis and a collection of symptoms. Doug, my son, was forgotten.”

For years Dr. Crane, a professor at the College of Mount St. Joseph in the western hills of Cincinnati, sought a way to enlighten her students and others about the ordinary people who live with schizophrenia despite its extraordinary burdens – the confused thinking, the delusions, the hallucinations, the anxiety and fear. Then she discovered a tool more commonly used among sociologists and anthropologists: oral history. Employing the device to examine schizophrenia has shifted her own perspective about a disease she thought she knew well.

LISTENShirley Austin

LISTENAlice Fischer

LISTENAmber

“People with schizophrenia do not lose their individuality, even when the illness is very severe,” Dr. Crane says. “What I discovered through oral history is that it’s not about schizophrenia. It’s about a complexity of life that is very hard to get at any other way.”

For the past three years, on their own time and with no outside money, Dr. Crane and a fellow Mount St. Joseph psychologist, Tracy McDonough, have built the Schizophrenia Oral History Project. Other oral history collections have focused on diseases like AIDS or leprosy, but this is the first to focus on schizophrenia, they say.

So far they have recruited two dozen people to sit down with them and a voice recorder, asking their “narrators” simply: What’s it like to be you?

“The real beauty of this project,” says Dr. McDonough, “comes out of the fact that Lynda and I really try not to ask a lot of questions. The narrators want to tell their stories. They have something to say. Many of them have told us that no one has ever asked them about their lives before.”

The psychologists began the project by alerting local mental-health organizations that they were looking for participants willing to volunteer directly. “We didn’t want the providers to make the call because that can create a sense of, ‘I have to do this because my therapist wants me to,’” Dr. Crane says. “So each of the narrators had to take the initiative.”

One participant, Shirley Austin, 47, lives by herself on the west side of Cincinnati with her terrier, Fluffy. After a nightmarish childhood of violence and sexual abuse, Ms. Austin learned as a teenager that she had schizophrenia, and she says that even though she takes her medication, has relatives nearby and attends a church, she wrestles with loneliness. When her therapist told her about the oral history project, she was curious.

“Not even my therapists have ever asked me about my life that much,” Ms. Austin says. “I felt like I got strength and courage talking about what happened to me. I want to tell all the teenaged girls to be strong, that I’m a survivor, and they can be, too.”

Dr. Crane and Dr. McDonough have delivered more than 30 talks about the project in the Cincinnati area, visiting schools and local groups and collecting responses.

“I like to think of myself as open-minded, but the Schizophrenia Oral History Project helped me see that I was stigmatizing patients,” said Vicki Cheng, a nursing student at Miami University who heard one of the talks. “I would not have been surprised to learn that a patient with cancer or heart disease loved organic gardening or painting. Why in the world should I be surprised that someone with schizophrenia has hobbies, too?”

The project has benefited participants, too, like Alice Fischer, 43, who has schizoaffective disorder, a variant of schizophrenia, and lives with her mother and brother in her childhood home in Cincinnati’s Price Hill neighborhood. Ms. Fischer said she had been teased since grade school well into adulthood. “Even right now, sometimes on the bus, people say mean things to me,” she said.

She jumped at the chance to join the oral history project as one of its first narrators because she says newspapers and television too often communicate the wrong idea about people with mental illness. Ms. Fischer also prodded her brother, who has schizophrenia, to participate in the oral history project, but he resisted, fearful of repercussions from going public with his illness.

The project’s website features Ms. Fischer’s vivid paintings of owls or hearts or handprints with upbeat messages for world peace. “I want people to know I’m not dangerous,” she says. “They don’t know what a nice person I am.”

One of the narrators most gravely affected by schizophrenia is Paul Drake, 49, who for 14 years has lived with a tabby cat named Tiger in a small cluttered apartment on Cincinnati’s west side. Through his reading, he learned organic gardening to supplement his meager food budget. He starts tomatoes and other vegetables on his windowsill and grows them on a small plot behind his building. He has taught his neighbors how to garden.

Dr. Crane and Dr. McDonough have shared with the narrators some of the written responses they’ve received from listeners to the oral history project; one comment for Mr. Drake said, “I respect Paul’s insights and appreciate his straightforward sharing of how he copes.”

Mr. Drake says the positive reactions “make me feel good.” Amid the disorder of his mind, he frames a sentence to describe the impact that his participation has had on him.

“It gives me,” he says, “some immortality.”

Dr. Crane is retiring from teaching this spring and turning over leadership of the Schizophrenia Oral History Project to Dr. McDonough, who has been applying for grants to support the work and searching for more narrators.

A few weeks ago, they got a call from Alice Fischer’s brother. He said he was ready now to tell his story.

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First Person Singular: Having schizophrenia — and being part of a group

Posted by Jenny on 4th March 2014

By Michael Hedrick, The New York Times, Feb. 27, 2014

Michael Hedrick

Michael Hedrick

I still remember the first group therapy session I went to after I got out of the hospital. I was 20 and had been diagnosed with schizophrenia after a road trip that took me from Colorado to the United Nations building in New York City, my mind riddled with notions of good and evil, demons and angels, and a determination to save the world. Now I was in something of a state of shock, having come to understand that amid the delusions and paranoia that swarmed through my head I was, in reality, insane.

A constant need to move felt like ants crawling over my skin, a side effect of the antipsychotic medications I had been prescribed. Every second of every day, I felt like clawing out my eyes and tearing out my hair because I just couldn’t sit still.

I held up my front, though. I smiled when I thought I had to and tried to be nice to people. Laughter, however, was not something that was possible, and wouldn’t be for a long time.

The group was a dual-functioning therapy technique to address both mental health issues and drug abuse. I had been assigned to it after disclosing that I had a marijuana habit. The doctors had told me that therapy groups were an integral part of my getting better. I agreed to go only to get out of the hospital prison and back home to my warm bed.

I sat in a circle with a melting pot of people. There was the construction worker still wearing dusty boots and clothes splattered with mud, and the depressed sorority girl, makeup and hair still impeccable. The two had formed a friendship over their history with methamphetamine. There was the quiet bipolar Hispanic man who spoke only in short staccato sentences, and the rotund marketing guy who introduced himself by saying his drugs of choice were food, cocaine and marijuana.

I sat there looking at them, hands nervously trying to find a natural position. I could tell they were thinking things about me, adjudicating me on my appearance and facial expressions. While they nodded in a sort of feigned acceptance, I knew they were going to go back to their friends and joke about me, the schizophrenic kid who looked weird.

When it was my turn to speak, I stood and told them in a quiet voice, almost so quiet you couldn’t hear the nervous wavering, that my name was Mike. “Hey Mike, welcome” rang the chorus in a strange unison. It seemed welcoming, but I knew they were waiting for their opportunity to strike. Summoning everything to get any words out, I told them that I had been an inpatient the previous week, where the doctors said I was schizophrenic, and that my drugs of choice were marijuana, cigarettes and, taking a cue from the marketing guy, food.

Having their eyes on me was a special kind of hell, as I stood there fidgeting and averting my gaze. They were all drilling holes into me, isolating my weaknesses and then laughing about them to themselves. They were wolves, chewing at and snapping my bones. I just wanted to get out, but I continued, and when I was done, I sat back down in the chair and lowered my head, refusing to say a thing or acknowledge anyone for the rest of the session.

How had it come to this? I had been happy in high school, popular even, unafraid of my own insecurities, unconcerned with what people thought of me. I can remember having friends from every different clique, every group and every grade. The ability to connect with people seemed so effortless then.

It’s a goal I’ve been striving to reattain for the last eight years.

When you have schizophrenia, the overarching plot of the experience is the inability to tell whether the things you are thinking are actually taking place in reality. Was that inflection in your voice a signal that I should be more friendly — or more reserved? Was that laughter I heard over my shoulder about me or something totally innocuous? These are the kinds of things I ask myself daily.

Recovering from mental illness is a process. It takes diligence in therapy, a strong support system and habitually taking your meds. With different drugs, the paranoia has calmed down, though it is still there, a reminder I’m still sick. Learning to accept what that paranoia was telling me and being all right with it, that I would still be the same person whether or not people thought negative things about me, has been a big part of my recovery.

Since that first group therapy session, I’ve worked harder than you can imagine trying to perfect a state of normal. Regaining the ability to relate to others has been a driving force. I’ve studied books on body language, manners, neuroscience and behavior just to get any small grasp on being a normal person. I know that if I do it right, and successfully connect with another human being, I feel giddy. But more often the interactions are a bit off, or a lot off, though not the end of the world.

Needless to say, it should be obvious that dating is hard for me. But I have friends, and they all know that I have schizophrenia and don’t seem to mind. They seem to accept that mental illness is a disease and not some defect of self. I can see the stigma lessening day by day, although a lot of people are still afraid of it. It’s nothing that a few little jokes and a sense of humor often can’t fix. Still, I know many others with schizophrenia who don’t have it as easy, who suffer every day, and I feel for them because I’ve sure been there.

It takes work, a lot of work, to get better, but it can be done. It has been a long road from that first group therapy session. But life is nothing if it’s not a road.

Michael Hedrick, a writer and photographer in Boulder, Colo., is the author of the novel “Connections: The Journey of a Schizophrenic.”

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Melanie Carlson, 23, deals with her voices and unusual experiences with the help of EASA

Posted by Jenny on 4th October 2013

By Anna Griffin, The Oregonian, Oct. 4, 2013

Melanie Carlson, 23

Melanie Carlson, 23

Melanie Carlson understands how the recent mass shooting at the Washington, D.C., Navy Yard happened. Same with the rampage at Sandy Hook Elementary School last year, and the one at an Aurora, Colo., movie theater two summers ago.

Carlson, a pretty 23-year-old with long blonde hair and twin rings in her lower lip, understands the seemingly uncontrollable forces – the literal voices – that can prompt a mentally ill person to lash out. She hears them all the time.

As she waits in line at a coffee shop or bobs to the music at a rock concert, unseen people tell her where to stand and where to look. While waiting for the bus or shopping at the grocery store, her fellow customers arrange themselves in precise geometric patterns, forming pyramids or squares. Green lines of what she guesses must be energy connect them.

“Whenever I notice it, they stop,” she said. “Everyone stops talking or moving. Everyone looks at me.”

These psychotic episodes are uncomfortable and incredibly isolating. They make Carlson want to scream or run away. Anything to feel some semblance of control and let the rest of us know that she knows what we’re doing.

In the cases of Newtown shooter Adam Lanza and, it seems, accused Navy Yard killer Aaron Alexis, failure to control mental illness had deadly consequences.

Carlson has learned to manage her schizophrenia, at least enough to talk about what psychosis feels like. In her case, finding the right mix of drugs and therapy to turn down the sound of those voices, and the coping skills to tune them out, will mean the difference between living a productive, happy life and one on the margins.

Doctors say that, like most of the more than 50 million Americans who lived with a mental illness last year, the only person Carlson poses a danger to is herself.

Hidden messages everywhere

Melanie Carlson saw a hidden message in her Wendy's cup. It turned out there was one -- the letters "MOM."

Melanie Carlson saw a hidden message in her Wendy’s cup. It turned out there was one — the letters “MOM.”

Maybe, she sometimes thinks, it’s because of what happened to her mom.

Carlson was 8 when her mother was diagnosed with terminal breast cancer and 15 when she died. She spent her childhood watching her mom waste away, try new treatments and suffer horrific side effects.

Her two siblings were older and better equipped to handle emotional trauma. She experimented with her appearance, going through phases as a hippie, a punk rocker, a rave girl. She suffered from what she views now, with a few years’ distance and more experience in the terminology of mental health, as anxiety. She was in sixth grade when she first heard the term “depression” and thought, “Oh, yeah, that’s me.”

“I was always sad,” she said. “I was sick all the time. I was always changing my look, never satisfied with anything. I think now that a lot of it was mental, not wanting to go to school, wanting to stay with my mom, wanting to avoid other people.”

After her mother died, Carlson started drinking. Not drinking as in one or two drinks, but drinking until she lost all control over her mind, until she would pass out and wake up not remembering what she’d done or how she had gottenwhere she landed.

“I was averaging half gallon of rum a day, a half gallon of vodka,” she said. “I didn’t want to be alive.”

She lived in a series of crowded apartments with friends, then in her car for a while. Through it all, she kept animals, mostly dogs. They were the only creatures who seemed to understand or whose company brought her peace.

The world had always felt a little … off … to Carlson. Strange things happened to her. Her drinking helped explain away how friends at parties seemed to suddenly align themselves in geometric patterns or march through the room at a weird, synchronized pace.

She thinks she was 18 or so when she suffered her first full-blown psychotic episode. They’ve grown worse and more frequent. She’ll walk into a shop, and think everyone has turned to look at her. At every concert she attends, she says, there comes a moment when the crowd suddenly parts, and she finds a solitary dancer gyrating an arm’s length away, or when everyone in the audience seems to be dancing the exact same steps in the exact same way. Everyone except her.

She’ll be watching TV or eating dinner, and notice a symbol that seems meant for her alone. “I see messages in everything,” she said.

A few months ago, for example, she was eating a meal from Wendy’s with her boyfriend when she nearly dropped her soda cup.

Carlson's recovery practices include writing about her thoughts and feelings.

Carlson’s recovery practices include writing about her thoughts and feelings.

“I freaked out,” she said. “There’s no other way to put it.”

When Wendy’s debuted its new logo last year, journalists and bloggers devoted to the art and science of marketing noticed a nifty bit of subliminal messaging that the fast-food chain has said was unintentional: Look closely on cups and take-out bags; the breezy script that forms Wendy’s ruffled collar appears to spell out the word “mom.”

Something in Carlson’s mind took this a step further: Her mother had red hair. She loved Carlson and worried about her. This was meant just for her.

“My boyfriend was like, ‘Melanie, not everything in the world is about you.’ But it made perfect sense that my mom would talk to me that way,” Carlson said. “Things like that happen to me every single day. I just see things that other people don’t. I don’t know why.

The brain’s mysteries

Medical experts aren’t entirely sure either. Neuroscience has shown that human brains are hard-wired to see patterns. It’s how we process our sometimes cacophonous, often confusing world.

Some fundamental miscue in Carlson’s brain chemistry gives her a heightened sense of these patterns and connections. Researchers don’t yet understand precisely why; they are years from being able to pinpoint which chemical imbalance or synaptic misfiring causes disorders such as schizophrenia or bipolar disorder.

“Any mental illness is just an exaggeration of an existing condition,” said Dr. Neil Falk, a psychiatrist with Multnomah County and Cascadia Behavioral Healthcare. “We all get sad, but not all of us are depressed. A severe mental illness is a severe exaggeration. And we’re not quite sure yet why that happens.”

The brain remains a mystery with intense, expensive and occasionally deadly consequences.

Melanie Carlson

Melanie Carlson

Two years ago, Carlson checked herself into Providence St. Vincent Medical Center after her paranoia and hallucinations made it impossible to even climb out of bed in the morning.

“I guess I came across as being really suicidal,” she said. “I guess I probably was.”

Even as she was being honest with her new health-care team about how she felt and what she perceived, Carlson still experienced the symptoms of what would eventually be diagnosed as paranoid schizophrenia.

“I felt like I was the only real patient,” she said. “Everybody else in there was an actor, the patients, the doctors, everyone.”

Doctors recommended therapy and medication, including Valium, which can deaden her voice to a sleepy monotone, and Risperdal, which lessens the intensity and frequency of her hallucinations but has other odd side effects, such lactation.

Large crowds, such as the one at a recent celebrate of the Multnomah County EASA program, make Carlson more likely to hallucinate and feel paranoid. She becomes very quiet and withdrawn when she feels reality slipping away.Beth Nakamura/The Oregonian

They also referred Carlson to doctors and social workers at Early Assessment and Support Alliance, a state-funded program administered locally in 19 Oregon counties that helps people ages 15 to 25 who suffer from psychosis. EASA clients work with a team of mental-health professionals on an outpatient basis for two years.

“We try to provide a soft landing into the mental-health system,” said Keri Ault, a mental-health consultant with EASA, which state lawmakers are working to take statewide. “We try to make that first experience a positive one.”

With EASA’s help, Carlson has focused on figuring out what kind of situations help calm her – she’s learned to meditate, started acupuncture and conducts biweekly meetings with her social worker while walking her three dogs – and avoiding those likely to to stress her out and conjure the sharpest hallucinations.

“Crowds,” she said, groaning. “Crowds still freak me out.”

Slow progress

Around EASA’s county offices, Carlson is considered a poster child for how the system is supposed to work. Her counselors talk about her successes: She lives independently, she stays busy with her pets and her hobbies, she works a part-time job, and she’s been sober for three years.

“She has developed these ways of understanding what is happening to her,” Ault said. “I see her as a survivor.”

Melanie Carlson (L) walks her dogs, with therapist Kari Ault .

Melanie Carlson (L) walks her dogs, with therapist Kari Ault .

Carlson doesn’t feel quite at that point.

“My boyfriend sometimes tells me I have a gift, but it’s definitely a curse,” she said. “Even when I feel like I understand the world in a way other people don’t, I’d give it up. I’d trade it in a minute to have a normal life.”

“A normal life” means a career, a college education, a full-time job. She dreams about living far out in the country, with lots of animals and space separating her from other people and the tension they cause. Right now, she has a mountain of debt and a vague desire to go back to school, but that’s tempered by knowledge that just walking across the campus of PCC Sylvania, a quick bus ride from her Southwest Portland apartment, would be overwhelming.

She’s already nervous about what happens next year, when her time as an EASA client ends. “I know I’m not going to be done with this in a year,” she said.

Strange things still happen, and still seem significant: One day recently, she was crocheting on the bus and noticed that she was sitting directly behind someone else who was crocheting, and that this person was also sitting behind someone crocheting. Three people, in a row, all doing the same thing. You might see it as a coincidence. She sees it as a sign, even if she’s not sure of what.

“It’s like living in a cross between the Truman Show and the Matrix, with maybe some Twin Peaks thrown in,” she said. “Everything everybody else says and does is scripted. I am in this false reality, and I can’t get out.”

Survival isn’t ending her hallucinations so much as learning to live with them. She’s training herself to ignore the noises in her head, or do the opposite of whatever the crowd tells her. She’s taken to calling the voices “my paparazzi.” And they’ve started saying different things.

“I was at a concert a couple of weeks ago, and what they were saying was positive,” she said. “It was cool. They were telling me, ‘Keep doing what you’re doing. You’re an artist. Keep trying.’”

Animals are Melanie Carlson’s closest and most trusted companions. She tries to walk her three dogs as often as possible. Beth Nakamura/The Oregonian

She wants to put the strange currents at work in her mind to constructive use. Carlson’s thoughts often come in rhyme – “Like Dr. Seuss or something,” she said.

Recently, she began typing these rhythmic reflections of her mental illness into her phone so she’ll have them later. She’s playing with putting her words to a beat, to music.

“I feel like I have some things that other people might be interested in hearing expressed,” she said. “I could record them. I might even be able to perform, because something about that makes being in a crowd seem manageable. I could do a spoken-word thing, or it could be like rap.”

These aren’t hallucinations, but daydreams. The kind all of us have.

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First Person Singular: A therapist at OSH explores betrayal and voice-hearing

Posted by Jenny on 2nd October 2013

By Pamela Birrell, PhD, Psych Central, Oct. 2, 2013

voice-hearing graphicNote: This story is based on what actually happened in one instance of psychotherapy. Names and details have been changed to protect identities.

It was 25 years ago. I was a relatively new intern at a busy inner city community health clinic and working at the Oregon State Hospital. I had already had my eyes and heart opened by the many stories of tragedy that surrounded such a place — poverty, racism, sexual assault, child abuse — and above all, the incredible power of the human spirit. I was already learning the limited power of the standard mental health system in addressing such injustices and trauma, and often did not feel up to the task.

Nancy was diagnosed with schizophrenia and major depression. She was incredibly suicidal, heard voices and was on a cocktail of psychiatric drugs. She had been arrested for assault and spent time in the state prison. The prison had quickly seen that she did not belong there and transferred her to the state hospital. I was able to see her first in the hospital and then at the clinic when she was released.

She was a mess. I didn’t know how long I would be working with her before she committed suicide. She had extremely lethal plans for it and was alone and isolated.

Nancy’s sad and violent history was recorded in the large file that came with her. She had a history of being sexually and physically violated by her father, who was, thankfully, on the road much of the time as a truck driver. Nancy’s mother was extremely depressed and unable or unwilling to adequately mother and protect her child. There were hospital records of her many visits to the emergency room starting from age 4. It was and will always be a mystery to me how and why Nancy was left in these circumstances with no intervention from the state.

Nancy trusted no one. She had not ever had a good experience with relationships and was extremely wary of me. It was difficult to get her to talk to me in our early sessions. Slowly, she told me a little of her story, primarily how she had been put in prison for assaulting people on city buses because her voices told her to. Her voices had ruled her life since mid-adolescence, telling her how worthless she was and about the dangers surrounding her. She was cut off from feeling for the most part, so her fear of others manifested as paranoia: Her voices told her others wanted to hurt her and that she had to lash out first or be attacked.

It was at one of these early sessions that Nancy turned her head slightly and seemed to tune me out.

”Are you hearing voices?” I asked.

She looked at me as if in a trance, not sure who I was, but managed to answer, “Yes.”

“What are they telling you?” I asked, not sure of what to say in this situation — my first demonstration that there are many, many situations that occur in therapy with traumatized people that no one ever prepares you for.

After a short pause, Nancy answered, “They are telling me to hurt you.”

I was taken aback. The clinic had emergency procedures to use if we felt threatened by a client, but I was reluctant to use them for some reason. I looked at her gently and fearfully and asked, “Are you going to listen to them?”

Nancy stared at me in a way that told me that she had never been asked that question. She was silent and thoughtful for a while. Then she said to me, “I guess not.” It was the first time ever that she had the idea that she didn’t need to do everything her voices told her to do. It was also an opening to begin to believe that she didn’t have to always believe them when they told her how worthless she was.

That moment opened things up for us. Nancy was able to have a little more freedom in what she could think and say. She began to have some feelings of grief and loss for all that had happened in her life, and began to understand the depths of the betrayals that had happened to her. She was still reluctant to trust me and the voices reminded her from time to time to push me away, physically and emotionally.

Somehow we hung in there. Since we had known from the beginning of our relationship that it would only last the year (the time of my internship), we had to set limited goals. Nancy decided that what she really wanted from our relationship was a hug at our last session. She had never touched or been touched by anyone in a way that was nurturing rather than destructive and she was frightened by the very idea. I agreed that one final hug would be a worthy goal.

We worked at it for months, through the fear and voices and self-destructive thoughts. We talked about what it might be like for her, what it might bring up, how it could affect her. She was willing to take the risk and so was I.

When the time of our last meeting came, we were both nervous. We had worked through the ending process and how it was difficult for both of us, as we had become attached to each other. We talked about her assignment to a new therapist and Nancy had met that person and felt it was someone she could work with. We couldn’t put that last moment off any longer. As she walked toward the door she took a deep breath and reached for me. We hugged briefly, both with tears in our eyes and she walked out of my life forever.

Twenty-five years later I remember Nancy with fondness and sadness. She had experienced great betrayals, yet possessed great courage in her search for loving human contact. As Jennifer J. Freyd and I wrote our recent book, Blind to Betrayal: Why We Fool Ourselves We Aren’t Being Fooled, I thought again of Nancy. She showed me the power of the human spirit as well as the devastation of betrayal and trauma. Her voices were not merely the result of a disease process, but a mechanism to prevent her from further hurt. Her rejection of herself and close connections was a result of her blindness to the betrayals of her parents. Since she couldn’t bear the knowledge that those who were supposed to take care of her and love her had so badly abused her, she pushed others away and punished herself as being to blame for the abuse.

In the book, we discuss how to heal from betrayal and overcome betrayal blindness. Nancy and I were not able to work together long enough to get to that point, but we were able to get to the point where she could allow a caring touch. And maybe that was enough. I hope Nancy was able to go on and develop more trust and find a sense of safety in others. I hope that she learned that she was not crazy or stupid, but the profound betrayal had damaged her sense of trust in herself and others. Betrayal blindness is actually not stupid or crazy at all. It is a survival mechanism that is quite clever and one which keeps children in Nancy’s circumstances from losing what little they have — but it comes at a great cost.

Betrayal harms us at the deepest parts of ourselves, and yet it can be possible to reach those dark places that hide our inmost fears and deepest longings if approached carefully with gentle love and profound listening.

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‘The Other Side’ – new video shares stories of recovery from mental illness, addiction

Posted by Jenny on 25th July 2013

By Linda Rosenberg, President & CEO, National Council for Behavioral Health, June 21, 2013

Ever wondered what it’s like to live with a mental illness or addiction? Is there hope? Is help available? The Other Side ― an award-winning 5-minute film marking the 50th anniversary of the Community Mental Health Act passed by President Kennedy ― portrays what it’s like to live in the grip of mental illnesses and addictions and how treatments and supports provided in the community make recovery possible — all from the stories of people who’ve inspired me over the years.

  • Dr. Clayton Chau came to America as a refugee from Vietnam, suffered abuse as a child and has lived with depression, anxiety, and PTSD.
  • Larry Fricks lives with bipolar disorder and an addiction.
  • Kevin Hines was diagnosed with bipolar disorder and severe depression at age 17 and is one of only 32 people to survive a Golden Gate Bridge jump.
  • Cheryl Sharp has experienced depression since adolescence and survived 9 suicide attempts.
  • Brandon Staglin had a psychotic break in his freshman year of college and was diagnosed with schizophrenia.
  • Katherine Switz battled severe bipolar disorder while in a demanding program at Harvard Business School.
  • Sharon Wise, a victim of severe childhood trauma, has struggled with bipolar disorder, depression, schizoaffective disorder, and drug abuse.

Today, every one of these individuals has overcome their illnesses to live productive, fulfilling lives in their communities. What made the difference? Watch our short film, The Other Side, to find out. The film — which marks the 50th anniversary of the Community Mental Health Act passed by President Kennedy ― portrays what it’s like to live in the grip of mental illnesses and addictions and how treatments and supports provided in the community make recovery possible.

The film also features Patrick J. Kennedy — who sustains the Kennedy family legacy of championing behavioral health — on his personal struggles and recovery journey.

We hope you’ll share our film to spread the message that there is hope for all those living with mental illness or addiction. That recovery is real. And that community makes a difference.

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Though unhoused, John Wedell is a well-known figure in Forest Grove

Posted by Jenny on 23rd July 2013

By Stephanie Haugen, The Portland Tribune, July 21, 2013

“How fast can you really turn your life around to be the way you want it to be?

“I can completely change my life in three years. Three hundred and sixty is the number of angles in a circle and close to the number of days in a year. Divide that by 90, which is close to the orbital period of Mercury. Based on three elements – legal, marketing and medical – I can expect to change my life entirely from 2013 to 2015. You can expect significant change in life every seven to eight years, whether you plan for it or not. My yogi told me that once.”

- John Wedell

John Wedell

John Wedell

His name is John Wedell.

He is simultaneously the most recognized and least understood resident of Forest Grove.

He’s standing in front of the News-Times office on Pacific Avenue, wearing red oven mitts, three wristwatches, two coats, binoculars and a toothbrush — the latter propped in a paper cup that’s strapped to his belt.

He’s also wearing his helmet.

A staple in winter, summer, rain or shine, the red helmet is one of Wedell’s most identifying features. The other is the puzzling, possession-packed carts he herds back and forth across Forest Grove.

It’s easy for people who’ve never talked with Wedell to make erroneous assumptions or feel uncomfortable when they see him. Some have called police to complain about his carts blocking the sidewalk, or about how “someone needs to do something about this person,” said former Forest Grove police Capt. Jeff Williams.

Williams makes a case for compassion. “People have different needs,” he says. “A lot of the time we’re too busy to find out someone’s life story, but if you take that time, you find out there’s a whole story there.”

Wedell’s story is difficult to piece together for many reasons, including his selectiveness about what he reveals. He details jobs and college degrees, for example, while remaining vague about “health problems” and sleeping arrangements.

Despite such limitations, Wedell’s story still includes not only a surprising personal history but an impressive amount of empathy from his 21,500 neighbors.

For every business that “blacklists” him, as Wedell says, others find creative, generous ways to support him. For every person who ignores him, others make a point of saying hello, stopping to talk or treating him to coffee.

Of the many John Wedells roaming sidewalks across America, this one, at least, is loved.

Outside the News-Times doors, Wedell picks up the latest newspaper, one of many papers he stores in his cart alongside old receipts and crumpled napkins. He is particularly interested in reading about the weather. He follows hurricanes in the south, hail in the Midwest and whatever storm is heading toward Forest Grove.

“You’ve got to know how to weather storms,” he says.

John Wedell holds up his planetary booklet on Pacific Avenue near Grendel's, one of his favorite restaurants (he loves the cheese toasties).

John Wedell holds up his planetary booklet on Pacific Avenue near Grendel’s, one of his favorite restaurants (he loves the cheese toasties).

Golden years

Wedell has endured all kinds of tempests over his 66 years, but he had a calm, sunny childhood, growing up wealthy and educated in San Francisco.

His mother was a nutritionist who trained at Johns Hopkins Hospital and his father was a neurologist, Wedell says. He had two brothers — James, now a doctor in California, and Steve, a teacher in Astoria — as well as cats, dogs and a duck that ran around in the basement.

During those “golden years,” as Wedell calls them, he played the piano, wrote his own music, read hundreds of books, played touch football in the streets, went to 49ers games, attended the symphony and flew to Disneyland, he says.

The first devastating storm struck during high school, when Wedell’s father died of heart problems in his 40s.

The family traveled around Europe for a while after that.

He returned to the U.S. and attended Carleton College in Minnesota, where he earned a bachelor’s degree in physics and studied piano.

He can still play Chopin’s etudes and diagram part of

Newton’s law of gravity.

Wedell says he earned master’s degrees — in physics from the University of California at Berkeley, and in business from New York University.

He says he taught math, physics and computer science, and programmed computers for oil companies in Africa and the Middle East, where he also worked for Arab phone companies.

Wedell wants people to know these things about his background. “That’s very, very important,” he says.

He says he never married or had children, but for three years he lived with a Cherokee and Dakota Sioux woman named Virginia whom he met at a country-western bar.

About 20 years ago, he stopped working, began collecting a pension and followed his mother to Forest Grove.

Wedell has called many places home: New York, Minnesota, Nigeria, Libya and Saudi Arabia. He’s lived in houses and high-rises, cities and suburbs, and now lives in Forest Grove with his cart and wagon.

When asked about his math and physics skills, John borrowed a piece of paper, and in about 30 seconds scribbled out part of Newton's law of gravity, along with a list of the planets in our solar system.  "I'm a mathematician; my mind thinks mathematically," he says. "If it's not mathematical, I don't understand it."

When asked about his math and physics skills, John borrowed a piece of paper, and in about 30 seconds scribbled out part of Newton’s law of gravity, along with a list of the planets in our solar system. “I’m a mathematician; my mind thinks mathematically,” he says. “If it’s not mathematical, I don’t understand it.”

“Check that out,” Wedell says, pulling a black, egg-shaped stone out of his pocket. “It’s a dinosaur egg,” he says, his brown eyes squinting from behind slightly swollen lids. The stone is heavy and solid, but feels fluid in the center. Wedell says he bought it in Astoria.

He pulls a small, soft-covered, weathered book out of his coat pocket — a guide detailing the location of all the planets for each date of the year.

He uses the egg and book to determine the amount of energy the planets will emit each day, which helps him adjust his energy levels accordingly.

“It’s like having a cup of coffee in the morning,” he says.

Wedell’s day usually starts around 4 or 5 a.m. after a night of “camping out,” which is as specific as he will get about where he sleeps.

He rounds up his cart and wagon and starts walking through town.

It’s a slow walk. Thirty feet forward with the cart, back to get the wagon, 30 feet forward with the wagon, a few more feet forward with the cart, back to catch up the wagon again, a little farther with the cart, and so on, inching his way across Forest Grove.

When Wedell walks, he slumps his shoulders and glues his eyes to his steps, as if he’s playing a slow, shuffling game of hopscotch, his concentration broken only by the call of his name.

Along his route, he likes to stop and watch for rabbits and squirrels in the parks. “This town has the most acrobatic squirrels. And they are not shy,” he says. He’s wearing socks on his hands like long, formal cotton gloves.

Wedell also likes to read. He spends hours in the Forest Grove City Library. And at the Pacific University Barnes & Noble store recently, he purchased a blue test booklet and pamphlets to refresh his memory on topics he studied in college — constitutional law, German grammar, psychology. “I like that it has to do with the brain,” he says, pointing to the psychology booklet.

Sometimes he hangs out in a restaurant, such as Caffe Montecassino, where he sat one day last winter, wearing a red beanie, holding his helmet and talking about the Super Bowl game he’d recently listened to on the radio.

“The old home team blew it,” he said of the San Francisco 49ers’ loss to the Baltimore Ravens. But he was more worked up about the elaborate halftime show featuring superstar Beyonce Knowles.

“Millions of dollars and the rest of us have to camp out,” he grumbled. “That’s what’s wrong with our country — no money for schools or health care, but money to put on a spectacle like the Super Bowl.”

While talking, Wedell keeps his eye on his cart and wagon, which are rarely more than a few feet away. As always, he sits near a window where he’ll have a good view of them on the sidewalk.

A diverse, puzzling, ever-changing collection passes in and out of the carts: paper coffee cups, a funeral home calendar with scribbled-in squares, blankets, shoes, 10-pound bags of sugar, house plants, discarded Christmas wreaths, cardboard boxes, real-estate signs, political signs, a jug of olive oil with something floating in the bottom, an old-fashioned wooden letterbox, chunks of plywood, a whole frozen chicken, long sticks, tarps, pine cones, flowers, saltines, a carrot, energy drinks, cherry blossom branches, bamboo and a blue leopard-print tote bag.

“Just the essentials,” says Wedell.

Former post office employee Leslie Oglesby once told Wedell he should recycle all the paper in his cart, “but he says, ‘No, no, that’s my life,’” she recalls.

“You hate to lose it,” Wedell says, pointing to the cart. “It has everything you have in it. But I have lost one, and I guess you move on.”

Family matters

Wedell is easily the most visible of Forest Grove’s homeless residents.

Unlike many others, however, Wedell has a pension that covers his food costs and could probably cover occasional lodging if hotels weren’t so “finicky about check-in procedures,” he says.

Wedell’s mother — who declined to speak with the News-Times for this story — still lives in town, although Wedell is prevented from seeing her by a restraining order she filed in 2007 at the Washington County courthouse.

The order was allegedly sparked by her son’s profanity, reckless burning of candles and food, property damage and other problematic behavior she details in the order.

"'I do a lot of walking," says John, who stopped in to buy new shoes at Fryes Action Athletics on Pacific Avenue. Kyle Vanderkin and store manager Marine McBeth help him find the right pair.

“‘I do a lot of walking,” says John, who stopped in to buy new shoes at Fryes Action Athletics on Pacific Avenue. Kyle Vanderkin and store manager Marine McBeth help him find the right pair.

Wedell seems to respect the order, which his mother renews each year. “She’s suffered too much,” he says. “She’s in too much pain. She doesn’t want company anymore.”

The problems do not appear to extend to non-relatives. There are no reports related to Wedell in Forest Grove police records or at the county courthouse beyond the restraining order.

The order does, however, provide a clearer understanding of Wedell’s appearance and lifestyle, stating he has been “diagnosed schizophrenic” and “will not take medicine.”

Wedell insists he’s physically and mentally healthy. He refers more generally to “health problems,” “stress” and “allergies.” These, he says, are what forced him to drop out of his New York University Ph.D. business program after he’d completed all his coursework but not his thesis.

Wedell has apparently seen a doctor, at least as recently as 2007, according to the court file, which notes “doctor bills” his mother helped him pay.

“I resisted medications for seven years, then took them for three years, but stopped,” Wedell says. “They really worked, though. The pain — emotional, dental, whatever kind of pain you got — they knocked it all out.”

Town full of friends

In 2006, Forest Grove was the birthplace of a countywide interfaith network to address homelessness. Local churches provide services ranging from a food pantry to two weekly free meals to a severe-weather shelter to a rotating family shelter.

Wedell has used the severe-weather shelter at the United Church of Christ, where he also stops in occasionally after the Sunday service, looking for cookies.

“We try to accord him with as much dignity and welcome as we do to all of our guests,” says Pastor Jennifer Yocum, who makes a point of greeting Wedell by name and looking him in the eye.

In Forest Grove, it turns out, that attitude extends far beyond church doors.

“He absolutely hates guacamole,” says Rigo Lopez, 22, who works at his family’s restaurant, La Sierra, and makes sure guacamole stays off Wedell’s dishes.

“Did you know they give you a free birthday meal there?” Wedell asked after his birthday last January, still gleeful at his good fortune. “It may be cold outside, but it’s a real emotional high. I really had a stellar birthday.”

Free birthday meals aren’t part of La Sierra’s policy, but the restaurant makes an exception for Wedell, who goes there often. He always sits in the first booth on the left, Lopez says. In winter, he’ll order coffee and sit alone for hours, sometimes talking quietly to himself.

Although customers sometimes offer to pay for his food, Lopez has never seen anyone sit down with him.

“They should. He’s a great guy and he’s really funny,” says Lopez.

Forest Grove resident Gerardo Vergara and his two children have talked with Wedell at the library.

“It’s important for my kids to understand that people have their own way of living, and that’s OK,” says Vergara, who grew up in Mexico City and remembers his father driving him around the poorer parts of town, hoping to deepen his young son’s perspective on life.

“Life can sometimes be hard for people. It’s important to notice and to make an effort,” says Vergara, who occasionally treats Wedell to coffee.

He’s not Wedell’s only coffee supplier.

“Sometimes the regulars will buy him gift cards,” says Becky Jo Saxe, owner of BJ’s Coffee Co. “We’ll put them behind the counter for him to use when he comes in. He likes cappuccinos.”

Wedell also spends time at Safeway, a few doors down from BJ’s. During one 11-minute period outside the store, he gets words or waves from an elderly couple, a burly, 30-ish man in jeans and boots, Safeway cart boys Sean and Bobby, and a woman who hands him a voucher for $3.75 from the can return.

“Oh, thanks, dear,” he says, adjusting the belt on his sweatpants before he trips the door with his cart and enters to buy carrot juice. “See how friendly people are here?”

They’re friendly all over town. Chatting with Wedell for 20 minutes on the street almost guarantees someone will walk by and wave.

“Hey Johnn-aay!” yells a guy driving past in a white Pacific-Cab van.

“There he is!” John yells back, waving.

“Hi John,” says a woman riding by on a bike.

“How ya doin’ John?” shouts a man out of a Carpet MD van.

“Hi John,” a mom calls out on Main Street as she closes her minivan door and her young daughter hops out.

A woman hands Wedell a flyer with a picture of her lost dog. Has he seen it?

“Not today, but I have seen this dog,” he says. “This is a beautiful dog.”

“You don’t have a cell phone, do you?” she asks.

“I have email,” Wedell says.

And so it goes. Dutch Brothers employees give him energy drinks. Volunteers at the annual spaghetti-feed fundraiser at St. Anthony’s Catholic Church let him sit there “hour upon hour,” Wedell says, “and refill your plate three, four times.”

Forest Grove cops check up on him too, he says. “They don’t hassle you, but ask you how you’re doing and that kind of thing.”

Capt. Mike Herb says when temperatures hit the 90s, concerned residents sometimes call after spotting Wedell wearing his helmet and several layers of coats. But Wedell always tells the officers he’s OK and that he likes what he’s wearing.

“He is an example of someone who is not in the norm, but who has found a place for himself here. He’s a known entity,” says UCC member Eric Canon. “He’s doing what he wants to do and I think that deserves our respect, even though it’s different than we might have it for him.”

His second home

Forest Grove is Wedell’s home only half the time. The other half he spends in Astoria, where his brother Steve lives.

“Helmet John — he’s an icon in this town,” says Noel Thomas, an Astoria watercolorist who has painted Wedell a few times.

“I’m drawn to people who walk a different route,” Thomas says.

The trip to Astoria often takes a lot of “getting ready and cleaning up” or just waiting for the right time, Wedell says.

“Sometimes it takes a week or month to rebalance yourself. You want to go when you’re well. It’s something you know inside yourself.”

There can be unexpected delays. One time, Wedell went to McDonald’s and had a lot of sherbet and sundaes. “It really mellowed me out,” he says, so he didn’t make it to Astoria that day.

And of course, there’s the matter of the cart. He can’t leave it just anywhere.

When he’s ready, he stores his cart, walks to Hillsboro with his wagon (a Christmas present from friends in Astoria), gets on the MAX and travels to the Portland train station, where he takes the bus west.

This watercolor, painted by Noel Thomas of RiverSea Gallery in Astoria, is one of several works inspired by John Wedell, whose brother, Steve, owns one. "He's definitely marching to his own drummer, and I kind of admire that," says Thomas.

This watercolor, painted by Noel Thomas of RiverSea Gallery in Astoria, is one of several works inspired by John Wedell, whose brother, Steve, owns one. “He’s definitely marching to his own drummer, and I kind of admire that,” says Thomas.

“He warms my heart. I’m always entertained by what he has in his carts or what he’s wearing,” said Thomas, who recalls seeing Wedell picking up trash on the street after someone tipped over all the trash cans.

“He’s a perfectly happy guy and I admire that about him. A guy who walks by him on the street may be miserable, but John isn’t escaping from anything. He doesn’t need anything from us,” Thomas added.

Wedell says he likes being close to the sea, seafood and seagulls, which follow him around. “I feed them bits of bread and pasta,” he says. “They’re really talkative and have a lot to say, but they don’t necessarily talk like you and I.

“I’ve learned to understand them — a special way to communicate with them.”

Comeback in progress

Wedell has run into people who have hurt him, he says, especially in Hillsboro and Portland. That’s part of the reason he wears his helmet: he’s afraid of getting beat up.

Once, he read about a big gang fight in a local park. “I thought it was very ‘not Forest Grove’ and kind of scary,” Wedell said.

“I know what it is — to take a beating and rebuild your life,” says Wedell, who stays in Forest Grove, he says, because people know him and are nice “about 85 percent of the time.”

But he’s unlikely to stay in Forest Grove permanently, he says, because he has other plans.

Some are simple. Maybe soon, for example, he’ll “get back on using the gym,” he says.

He’s also thought about refreshing his piano skills. The piano mellows and focuses him, he says, and he’d like to play again.

But he’d need a piano and “I don’t have a long-term house where I can park it,” he says, musing about the possibility of keeping a portable Yamaha keyboard in his cart.

The bigger plans involve getting his career back together. He needs “a non-retirement income,” Wedell says, so he won’t have to camp out. “You can’t make it if you’re not on salary.”

When he was working, he says, he made $40,000 to $50,000 a year. He’d like to get back in that bracket.

“It’s not procrastination really. Well, some of it is,” Wedell says, smiling sheepishly. “My skills just aren’t tailored to the current environment.”

In lieu of medication, Wedell relies on the passing years to salve his pain and prepare him for a fresh start.

“Time heals most things,” he says. “Not always and sometimes it can’t be expedited, but most things.

“I’m still on the rebound.”

Jill Rehkopf Smith contributed to this story.

Editor’s note:

Today we present a story that at least six different News-Times reporters over the past decade have thought about writing: the story of John Wedell, Forest Grove’s most public private citizen.

The reporter who actually followed through, Stephanie Haugen, faced unusual challenges. John’s mother and brothers would not talk to her. John himself seemed sensitive about certain topics.

We thought long and hard about how to balance our concerns for Wedell and his family with our duty to readers to tell what is basically a one-chance story. We ended up including sensitive information that we knew would answer important questions about John, while at the same time minimizing potentially embarassing or harmful details.

We were able to confirm much of John’s background information — not all, but enough to feel his account is largely accurate.

Finally, we chose not to turn John’s story into a larger critique on mental health or homelessness. We were more interested in simply demystifying an unusual man and in highlighting the many community members who welcome him. We hope this piece will make it easier for others to welcome him, too.

– Jill Rehkopf Smith

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Prejudices, misconceptions about serious mental illness creep into medical treatment plans

Posted by Jenny on 26th May 2013

By Lauren LeBano, PsychCongress Network, May 23, 2013

Doctor shaking fingerPrejudices about individuals with mental illness play a role in many healthcare providers’ treatment decisions involving physical conditions, a randomized trial suggested.

When providers of all types — even mental health professionals — were presented with hypothetical vignettes of patients with medical conditions such as obesity, the treatment plans differed markedly when the patient also had schizophrenia, said Dinesh Mittal, MD, of the University of Arkansas for Medical Sciences in Little Rock.

Providers tended to assume that schizophrenia patients would be less adherent to instructions, more likely to miss appointments, and less competent at making their own medical decisions — none of which are justified by evidence, Mittal said at the American Psychiatric Association annual meeting here.

The biggest surprise in the study, he said, was that psychiatrists and mental health nurses had most of the same prejudices about schizophrenic patients as their counterparts in primary care.

Previous research had indicated that patients with mental illnesses often receive different treatments for medical conditions than other individuals. For example, Mittal said at a press briefing, a 2000 study indicated coronary angioplasty was performed less than half as often in Medicare patients diagnosed with mental illnesses than in otherwise similar patients without a psychiatric comorbidity.

To examine whether different types of medical providers would regard patients with mental illnesses differently from others when it comes to their medical conditions, he and his colleagues performed a prospective, randomized, survey-based trial among 275 providers at five Veterans Affairs medical centers.

The researchers presented respondents with one of two hypothetical patient scenarios, identical except that one of the patients was described as also having schizophrenia, and asking about the expectations for that patient and the types of treatment they would recommend.

The scenarios described a 34-year-old male patient with rising hypertension, moderate but increasing obesity, insomnia, and chronic back pain. This patient was coming to the clinic for a follow-up visit to seek stronger pain medication for the back pain; he was currently taking lisinopril, naproxen and fluoxetine (Prozac). He was also described as employed, with above-average work performance, and a regular churchgoer with hobbies including fishing and reading magazines.

Respondents included 91 primary care nurses, 55 primary care doctors, 67 mental health nurses, and 62 psychiatrists. Half of each group was given the scenario in which the patient also was described as having clinically stable schizophrenia managed with risperidone (Risperdal).

Overall, in response to questions about how the schizophrenic individual would behave as a patient, the participants had significantly lower expectations in most categories.

Just over 50% of respondents in all categories indicated that this patient would be competent to make his own medical decisions, compared with 84% of respondents asked about the otherwise identical non-schizophrenic patient (P<0.05).

Mean ratings of the schizophrenic patient’s expected social functioning and his ability to read and understand written materials were significantly lower, Mittal said.

Also, nearly 85% of respondents indicated that the patient might try to hurt others or himself; 59% of those asked about the non-schizophrenic patient said the same (P<0.05).

In each case, Mittal said, studies have shown that such beliefs are unfounded, at least as long as schizophrenia remains under control and no psychosis is present.

The preconceptions about the schizophrenic patient translated into differences in how the providers would care for him.

Even though at least one recent study has shown that weight loss programs are effective in obese schizophrenics, Mittal said, the healthcare professionals were significantly less likely to recommend it for the schizophrenic patient in the vignette.

They were also less likely to recommend a sleep study, although the difference in that case was smaller and nonsignificant. There was no difference at all in recommendations that the patient try a pain management program.

In one respect, however, prejudice might work in the schizophrenic patient’s favor — significantly more providers indicated that they would involve his family in his medical management. Mittal said this represents “good medical practice,” but it may also reflect a paternalistic attitude and lack of trust in the patient himself.

He said his expectation going into the study was that mental health providers would be less prone to stereotyping of the schizophrenic patient. Yet, he said, the patterns of responses they gave did not differ markedly from those of the primary care providers.

“There is a need for reducing stigma among all healthcare professionals” toward patients with mental illnesses, he said.

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