Tag Archives: stigma

“What is Normal?” by Peter Kramer

11 Jan
Peter Kramer is a professor of psychiatry at Brown University. His article “What Is Normal,” first published in 2009, attempts to address concerns about the impending fifth edition of the Diagnostic Statistical Manual, primarily that expansions in psychiatric diagnostic labels and criteria would result in pathologization of “normal” human affect and behavior. You don’t have to subscribe to antipsychiatry to conclude that some of these concerns have been validated, an oft-cited example being the removal of the “bereavement exclusion” from the diagnostic criteria for major depressive disorder.
Still, Kramer offers a fresh perspective on the issue, arguing that expansions of psychiatric diagnoses not only have the potential to vastly improve people’s quality of life, but can  also alleviate isolation and stigma, provide insight into our sociocultural context, and enhance our understanding of the human condition. He also sheds light on some of these expansions’ epistemological origins.
I’ve included and emphasized what I consider the most salient excerpts from the article, which you can read in its entirety here.

 

I have been thinking a good deal about normality lately. It’s a concern in the medical world. The complaint is that doctors are abusing the privilege…to define the normal. Ordinary sadness, critics say, has been engulfed by depression. Boyishness stands in the shadow of attention deficits. Social phobia has engineered a hostile takeover of shyness.

….

The fate of normality is very much in the balance. The American Psychiatric Association is now revising its diagnostic and statistical manual—the next version, DSM-V, should preview in 2011 and become official the following year. It may, indeed, be that as labels proliferate, mental disorders will annex ever more territory. But claims of a psychiatric power grab are overstated. The real force behind a proliferation of labels is the increasing ability of technology to see us as we’ve never been seen before. Still, the notion of a shift in the normal invites unease: To constrain normality is to induce conformity. To expand diagnosis is to induce anxiety. Is anyone really well?

It’s a short hop from critiquing narrowed normalcy to claiming that we are an overmedicated nation. As [Christopher Lane, author of Shyness: How Normal Behavior Became a Sickness] writes, “We’ve narrowed healthy behavior so dramatically that our quirks and eccentricities—the normal emotional range of adolescence and adulthood—have become problems we fear and expect drugs to fix.” Psychiatry’s critics also complain that doctors medicate patients who meet no diagnosis, who practice what I have dubbed “cosmetic psychopharmacology,” to move a person from one normal, but disfavored personality state, like humility and diffidence, to another normal, but rewarded state, like self-assertion.

Labels matter even when medication has no role in treatment. A wife complains that her husband lacks empathy. Does he have Asperger’s syndrome, a lesser variant of autism, or is he simply one of those guys who “don’t get it,” who simply don’t see social interactions as ordinarily perceptive women do?

Diagnosis, however loose, can bring relief, along with a plan for addressing the problem at hand. Parents who might have once thought of a child as slow or eccentric now see him as having dyslexia or Asperger’s syndrome—and then notice similar tendencies in themselves. But there’s no evidence that the proliferation of diagnoses has done harm to our identity. Is dyslexia worse than what it replaced: the accusation, say, that a child is stupid and lazy?

The question of normality creates strange paradoxes in the consulting room. Often it is relatively healthy people who feel defective. In psychotherapy, patients may perseverate over vague complaints, feeling off-balance and out of sync. The worriers may believe that they have too much or, more often, too little ambition, desire, confidence, spontaneity, or sociability. Their keen social awareness (a strength), when tinctured with obsessionality, causes them to fuss over glitches in the self. For them, a sense of abnormality precedes any diagnosis and may persist even when none is proffered.

In contrast, seriously ill patients may have no such concern. Those who manifest frank paranoia will insist on their normality; anyone would be vigilant in the face of plots directed at them. Anorexics and alcoholics may profess certainty that they’re fine; the degree of “denial” is something of a marker for severity of disorder.

People afflicted by disabling panic or depression may fully embrace the disease model. A diagnosis can restore a sense of wholeness by naming, and confining, an ailment. That mood disorders are common and largely treatable makes them more acceptable; to suffer them is painful but not strange.

In other words, in the clinical setting, the proliferation of diagnoses has diverse effects, making some people feel more normal, some less so, and touching others not at all. There is no automatic link between a label and a sense of abnormality.

Still, diagnosis can seem to confer stigma. I recall a patient, Roberta, who consulted me because her marriage was in trouble. Her husband resisted couples therapy. Might she see me alone?

In my office, Roberta was listless and slow of thought. Her memory was vague. Was the problem thyroid disease—or an occult cancer? Roberta willingly submitted to a workup by an internist. She was devastated when she was referred back for treatment of depression.

To Roberta, the mood disorder label confirmed her husband’s complaint that something was wrong with her as a person. To be called depressed rather than, say, anemic constituted double jeopardy: She was in pain and she was flawed, in judgment and in character. She was unloved—and, now, abnormal.

Despite her misgivings, I asked Roberta to consider psychotherapy, exercise, bright lights (for winter in New England), and medication. I wanted her to be functioning well quickly, before she made irreversible decisions about her marriage.

The case had a memorable outcome. Only when she was better did Roberta reveal that at her low point she had contemplated suicide. Her summary comment was, “The fights with my husband saved my life.” They caused her to be diagnosed—and treated.

When she first spoke with me, Roberta seemed to display normal sadness, that is, emotional disruption in the face of a life crisis. Psychiatry’s critics are right: Roberta experienced the diagnosis as stigmatizing, and it led to her taking medication. But the case also illustrates why, for doctors, making diagnoses and educating patients about them is not a matter of choice; diagnosis can be lifesaving.

Just where does the impetus to expand diagnosis originate? A recent public flap highlights how categories proliferate. Raymond DiGiuseppe, a psychologist who researches anger, made headlines last spring when, at a scientific meeting, he argued that the DSM should add anger disorders, to parallel depression and anxiety disorders. There is a point at which anger becomes harmful, he contends. When scholars immerse themselves in an area—carefully observing research subjects, making note of differences and attendant harm—new sets of diagnosis seem obvious and inevitable. It doesn’t matter whether treatment for the condition is medication or psychotherapy, or indeed, any treatment at all.

….

Critics of psychiatry complain that many patients fit no clear category and, at least on insurance forms, are given labels like “anxiety disorder not otherwise specified.” Such patients nevertheless often remain at risk for an array of bad outcomes, studies indicate—findings that tend to broaden diagnostic categories.

Research technology is transforming understanding of mental disorders. New, more finely grained ways of looking at brains, neurons, and even cell connections, as well as powerful computer models, correlate many observed variations in function with disease and disability. The nerve connections you form, the neurotransmitters you elaborate, the symptoms you suffer—each may be linked to vulnerability to disorder.

One way psychiatry has responded to expansionist pressures is to turn to the concept of dimensions. Imagine compiling a list of all the factors ever associated with depression: irritability, a metallic taste in the mouth, a variant of a relevant gene, a change in size of a part of the brain. The list grows to 300 factors—symptoms, personality styles, gene variants, gene configurations, family histories, protein elaboration, and anatomical differences. Say, you rate a person on each of them.

Then you identify clusters of factors (extreme irritability, mild complaints of “off” taste, moderate levels of brain abnormality) that predict recurring episodes of mood disruption. A computer could identify varying degrees of severity for each of the hundreds of factors, with differing prognoses and treatment options. And then at some point, it becomes logical to dispense with the discrete, categorical have-it-or-don’t-have-it view of depression.

In time, and in future manuals, dimensions may push categories aside. If for many of the factors, difference confers some degree of vulnerability to dysfunction, then we will find that we are all defective in one fashion or another. DSM-V may turn out to be conservative and postpone the inevitable, but it is hard to imagine a future in which abnormality is not much more prevalent than it is today. The shift in perception may become more marked as researchers identify subtle neuron- or gene-based variations with modest psychological consequences—increased risk for one or another condition—in the way that high blood pressure signals increased risk for stroke.

How will it feel to live in a culture in which few people are free of psychological defect? Well, we’ve been there before, and we can gain some clues from the past. The high-water mark for diagnosis occurred in the heyday of psychoanalysis. The Midtown Manhattan Study, the premier mental health survey of the 1950s, found that over 80 percent of respondents—more than triple our own abnormality rate—were not normal. “Only 18.5 percent of those investigated were ‘free enough of emotional symptoms to be considered well,'” the New York Times reported. It even cited a psychiatrist who reasoned that, since health includes awareness of conflict, subjects who express no neurotic anxiety must also be abnormal.

In a forthcoming book, Perfectly Average: The Pursuit of Normality in Postwar America, American Studies scholar Anna Creadick reports that the U.S. hungered for a return to normality in the wake of World War II. Articles asking, “Is Your Child Normal?” appeared regularly in the press.

But being deemed neurotic was hardly a cause for distress. If anything, the affliction seemed to signal opposition to mass culture, as if emotional sensitivity were a protest against Eisenhower-era dullness and conformity. Popular essays and books such as The Man in the Gray Flannel Suit made normal men and women out as saps.

The lesson of mid-century is clear: When everyone is abnormal, diagnosis loses its sting. I suspect that we are entering a similar period in which diagnosis (or dimensional defect) spreads—while its gravity, in terms of social stigma, diminishes. Or else we will redefine normal to include broad ranges of difference.

To some degree, that is already happening. The deaf, anorexics, people with Asperger’s syndrome—groups whose members might otherwise be considered impaired or deviant—have made vigorous claims to represent “the new normal.” The Hearing Voices Network advocates liberation, not cure, for those who hallucinate. Where once people pursued normality through efforts at self-reform, now they proudly redraw the map to include themselves. In this context, diagnostic labels confer inclusion in a community. Today, an emotional or behavioral state can be understood both as a disorder and a unique perspective.

As the experience of mid-century shows, we can hold two forms of normality in mind—normal as free of defect, and normal as sharing the human condition, which always includes variation and vulnerability. We may be entering a similar period of dissociation, in which risk and pathology become separated from abnormality—or an era in which abnormality is universal and unremarkable.

We are used to the concept of medical shortcomings; we face disappointing realizations—that our triglyceride levels and our stress tolerance are not what we would wish. Normality may be a myth we have allowed ourselves to enjoy for decades, sacrificed now to the increasing recognition of differences. The awareness that we all bear flaws is humbling. But it could lead us to a new sense of inclusiveness and tolerance, recognition that imperfection is the condition of every life.

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“First Up, Mental Illness. Next Topic Is Up to You,” by Nicholas Kristof

7 Jan
Incidentally, in the aftermath of last year’s school shooting in Sandy Hook Elementary, the New York Times has been crushing it in advocating for people with mental health issues. They’ve published in-depth exposés on gaps and shortcomings in mental health coverage as well as think pieces about reducing stigma and the social costs of untreated mental illness. Kudos.
from The New York Times:

THOSE of us in the pundit world tend to blather on about what happened yesterday, while often ignoring what happens every day. We stir up topics already on the agenda, but we falter at calling attention to crucial-but-neglected issues.

So here’s your chance to tell us what we’re missing. I invite readers to suggest issues that deserve more attention in 2014. Make your suggestions on my blog, nytimes.com/ontheground. I hope to quote from some of your ideas in a future column.

My own suggestion for a systematically neglected issue: mental health. One-quarter of American adults suffer from a diagnosable mental disorder, including depression, anorexia, post-traumatic stress disorder and more, according to the National Institutes of Health. Such disorders are the leading cause of disability in the United States and Canada, the N.I.H. says.

A parent with depression. A lover who is bipolar. A child with an eating disorder. A brother who returned from war with P.T.S.D. A sister who is suicidal.

All across America and the world, families struggle with these issues, but people are more likely to cry quietly in bed than speak out. These mental health issues pose a greater risk to our well-being than, say, the Afghan Taliban or Al Qaeda terrorists, yet in polite society there is still something of a code of silence around these topics.

We in the news business have devoted vast coverage to political battles over health care, deservedly, but we don’t delve enough into underlying mental health issues that are crucial to national well-being.

Indeed, when the news media do cover mental health, we do so mostly in extreme situations such as a mass shooting. That leads the public to think of mental disorders as dangerous, stigmatizing those who are mentally ill and making it harder for them to find friends or get family support.

In fact, says an Institute of Medicine report, the danger is “greatly exaggerated” in the public mind. The report concluded: “although findings of many studies suggest a link between mental illnesses and violence, the contribution of people with mental illnesses to overall rates of violence is small.”

Put simply, the great majority of people who are mentally ill are not violent and do not constitute a threat — except, sometimes, to themselves. Every year, 38,000 Americans commit suicide, and 90 percent of them are said to suffer from mental illness.

One study found that anorexia is by far the most deadly psychiatric disorder, partly because of greatly elevated suicide risk.

Mental illness is also linked to narcotics and alcoholism, homelessness, parenting problems and cycles of poverty. One study found that 55 percent of American infants in poverty are raised by mothers with symptoms of depression, which impairs child rearing.

So if we want to tackle a broad range of social pathologies and inequities, we as a society have to break taboos about mental health. There has been progress, and news organizations can help accelerate it. But too often our coverage just aggravates the stigma and thereby encourages more silence.

The truth is that mental illness is not hopeless, and people recover all the time. Consider John Nash, the Princeton University mathematics genius who after a brilliant early career then tumbled into delusions and involuntary hospitalization — captured by the book and movie “A Beautiful Mind.” Nash spent decades as an obscure, mumbling presence on the Princeton campus before regaining his mental health and winning the Nobel Prize for economics.

Although treatments are available, we often don’t provide care, so the mentally ill disproportionately end up in prison or on the streets.

One example of a cost-effective approach employs a case worker to help mentally ill people leaving a hospital or shelter as they adjust to life in the outside world. Randomized trials have found that this support dramatically reduces subsequent homelessness and hospitalization.

Researchers found that the $6,300 cost per person in the program was offset by $24,000 in savings because of reduced hospitalization. In short, the program more than paid for itself. But we as a society hugely underinvest in mental health services.

Children in particular don’t get treated nearly often enough. The American Journal of Psychiatry reports that of children ages 6 to 17 who need mental health services, 80 percent don’t get help. Racial and ethnic minorities are even more underserved.

So mental health gets my vote as a major neglected issue meriting more attention. It’s not sexy, and it doesn’t involve Democrats and Republicans screaming at each other, but it is a source of incalculable suffering that can be remedied.

Now it’s your turn to suggest neglected issues for coverage in 2014. I’ll be back with a report.

“A Reader Complains: You’re Insulting Me By Writing About Jails, Prisons, and Homelessness: I Am Not Like Them” by Pete Earley

28 Oct
From peteearley.com:

Dear Mr. Earley,

Why do you always assume mentally ill people either are homeless or in jail?

That’s insulting.  I have a serious mental illness but hold down a job, have a family and am dong fine. If I break the law, then I deserve to go to jail. If I end up homeless it will be because I’m lazy and don’t work or because I don’t take my meds.  Either way, it will be my fault.

People with mental illnesses should be held accountable and treated no differently from anyone else. To do otherwise is to promote stigma and make all of us look like we are criminals or bums.

Sincerely

Alan M.

Dear Alan M.,

I am thrilled that you are doing so well. When my son was sick, I ached for success stories such as your’s. I wanted hope. I wanted to know that persons with severe mental illnesses could and do recover and live regular lives. Please share your personal story with others, especially those who are struggling, because they need to be inspired.

Sadly, I do not agree with much else that you have written.

Individuals with serious mental illnesses have a brain disorder that impairs their thinking. There are different levels of impairment. With meaningful treatment, whether that be therapy, medication or some other assistance, most do well. But getting meaningful mental health care is difficult and even then, some individuals with the most severe disorders will not fully recover.

Obviously, most people who get sick do not break the law or end up on the streets. Statistics show that. But some do and I believe the majority of those individuals end up in trouble because of their illnesses, not because of some character defect, immorality or laziness.

Does my focus on jails and homelessness encourage stigma?  I hope not. I hope that most readers realize that I write about these issues because our system is broken and there are ways to fix it so that we can stop turning our jails into our asylums and end homelessness.

Why do I focus on persons with mental illnesses who are in jails and prisons?

The obvious answer is because of what happened to my family, specifically to my son. If you have read my book, you will know that I tried to get my son help when his psychosis first surfaced. I ran into barriers that kept me from helping him. When his delusions became worst, he broke into an unoccupied house to take a bubble bath. He was bitten by a police dog when officers responded, could have easily been shot and was charged with two felonies. I was outraged because my son is not a burglar or thief.

My son is doing great now, but I continue to focus on jails and prisons because the number of  persons with mental illnesses getting entrapped in the criminal justice system is growing. I have just returned from speaking in Oregon where more than 8,000 persons with severe mental illnesses pass through the county jail in Portland every year. These folks are not psychopaths. Most are there for minor offenses such as trespassing related to their illnesses or co-occurring problems.

Dr. Fred Osher spoke at that  same conference and talked about a recent study that he performed with public policy researcher Hank Steadman, using a very narrow definition of serious mental illness. They found that 17% of all prisoners in American jails and prisons today have a serious mental disorder. That equals 750,000 prisoners, or nearly twice the number from when I did the research for my book less than ten years ago. Their study found that  1,250, 000 people with mental disorders are on probation or under community control.

Many of these prisoners are held under the worst possible conditions despite the minor charges filed against them.  Ron Honberg, legal policy director of the National Alliance on Mental Illness,  told a Senate subcommittee last year that severely mentally ill inmates are three times more likely to be put into solitary confinement than other inmates.

While conditions in jails are improving, most prisoners do not receive any mental health care while they are incarcerated. Under the 8th amendment, if a serial killer in prison gets a tooth ache, he is entitled to decent dental care. If a rapist needs to have his appendix removed, he gets the operation. But under that same amendment, if a prisoner has a serious mental illness, there is no guarantee that he will get medical help. He is more likely to be put in segregation and punished for his bizarre behavior.

That doesn’t mean that I am ignoring the harm and damage that some delusional defendants have done. But I believe their actions, no matter how horrific, need to be viewed through the lens of their illnesses.

I understand why you do not like being lumped together with prisoners or the homeless. However, I would think that someone who has experienced psychosis would be more understanding, not less, of how easy it can be for someone in the midst of a mental breakdown to end up being arrested or homeless because of impaired thinking and a lack of decent health care services.

I hope you will join me in demanding better community services and a return to when mental illness was a health issue, not a criminal justice one.

http://www.peteearley.com/2013/10/28/a-reader-complains-youre-insulting-me-by-writing-about-jails-prisons-and-homelessness-i-am-not-like-them/

“Conspiracy of Silence: When the Psychiatrist Has BP” by Sara Solovitch

26 Aug
From bp Magazine (www.bphope.com):

One morning when she was 27, Suzanne Vogel-Scibilia, MD, went to work, a young, up-and-coming resident psychiatrist at a major Pittsburgh hospital and left, hours later, as a person with bipolar disorder.

The diagnosis—her own and later confirmed—took place as she was routinely questioning a distraught patient who, after spraying her neighbor with a hose, had been brought into the emergency room by police.

How much sleep had the woman been getting, Dr. Vogel-Scibilia asked. “Not much,” she answered. “Maybe a couple hours a night.”

And I’m thinking, me too.

How about food? Was she eating? “Oh, I had some dinner last night,” the woman responded. “I wasn’t very hungry.”

And I’m thinking, that’s interesting. Same as me.

Was she under stress? “Sure,” the woman said. “But you know what’s really annoying me? They’re talking about me on the PA system.”

And at that moment, I could hear the PA system and they’re not talking about her. They’re talking about me. And I’m not hearing a damn word this woman is saying. I’m just thinking, ‘What diagnosis does this woman have? Bipolar?’ Oh my god! Suzanne, you’ve got bipolar disorder!

Dr. Vogel-Scibilia was convinced that her diagnosis—which she now traces back to age 15, the first time she attempted suicide—would mark the end of her career.

The medical profession doesn’t look kindly on mental illness within its ranks. Michael Myers, MD, clinical professor of psychiatry at the University of British Columbia, Vancouver, British Columbia, and former president of the Canadian Psychiatric Association, argues that the stigma attached to mental illness is greater in medicine than anywhere else. Worst of all, he says, are psychiatrists who suffer from “internalized stigma.”

“Just because we’ve trained in psychiatry doesn’t mean we’ve purged ourselves of out-dated and discriminatory attitudes,” says Dr. Myers.

“I’ve looked after psychiatrists who feel dreadful—-some actually say they feel fraudulent—that they are taking care of depressed people when they themselves are on antidepressants. I say, ‘Hold on a minute, I’m sure there’s an endocrinologist out there who has diabetes.’”

Research shows that doctors in general are at greater risk of depression, mood disorders, and suicide than other professionals. “Psychiatrists commit suicide at rates about twice” the rate of other physicians, according to a 1980 study by the American Psychiatric Association, which found that “the occurrence of suicide by psychiatrists is quite constant year-to-year, indicating a relatively stable oversupply of depressed psychiatrists.”

“It’s an oversimplification to say it’s all due to the stress and strain of practicing medicine,” cautions Dr. Myers, a specialist in physician mental health. “It’s more to do with who we are: Many of us in medicine are wounded healers. We’re interested in practicing medicine precisely because we come from families with problems.”

Higher rates of family dysfunction, parental alcoholism, sexual and physical abuse, parental death, and psychiatric hospitalization were reported among female psychotherapists than in other women professionals in a 1993 study in the journal Professional Psychology, confirming the image of wounded healers.

Continues Dr. Myers: “Coupled with that, there are certain personality traits among people who become doctors. We’re perfectionistic; you have to be if you want to practice proper medicine. And people who are that way are hard on themselves.”

Yet the stigma of mental health continues to create what he and others have called “a conspiracy of silence” among doctors—psychiatrists in particular.

Disclosure

By her last year of college, Beth Baxter, MD, “knew” there was “something wrong” with her brain; during the previous four years, the top student and class president had routinely slept only four hours a night. She would enter the cafeteria only during off-hours, eating peanut butter sandwiches day after day, just to avoid running into her classmates. She fought suicidal urges and had already made several half-hearted attempts.

In her second year of medical school at Vanderbilt University, she became convinced that the songs being played on the radio were carrying messages to her. Her grades began to slip for the first time, so she took a break and visited her grandparents’ cattle ranch in Texas. While there, she went missing. She left on an imagined meeting with friends and followed some “messages” on the radio. Found wandering a day later, she was picked up by police on the side of a highway.

So began Dr. Baxter’s first hospitalization when she was diagnosed as having bipolar disorder. She managed to return and graduate from medical school, hiring a tutor to talk through all of her class notes.

She was accepted into an internship in internal medicine in Memphis, Tennessee. “They accepted me before they knew I had bipolar disorder,” she recalls. “The dean of students told them I’d had counseling, but it wasn’t fully explained, and they were kind of angry when they found out.” A year later when she transferred to Rochester, New York, she changed specialties. “Because,” she says, “I knew how much good a psychiatrist could do and I wanted to do that for somebody else.”

After her residency, her symptoms worsened: she became increasingly depressed and suicidal; she tried to slash her neck and had to return to her hometown of Nashville, Tennessee, where she was hospitalized for a year and the doctors told her parents that the most she could expect was to work on an assembly line. And the diagnosis had now changed to schizophrenic affective disorder.

“I was a pretty sorry sight,” she recalls. “I’d lost 70 pounds and I had a movement disorder—jerky hands and feet.”

By this time, however, her parents had become active in the local chapter of NAMI (National Alliance on Mental Illness). When the local NAMI officers learned that a doctor was hospitalized in Nashville, they approached her with a request: would she write an educational training program for people who have mental illnesses? Baxter completed the project while she was still on suicide watch.

Little by little she began to come back. “A psychiatrist there had a lot of hope in me,” she says, “and that hope was really important.”

Dr. Baxter is still on medication; the last time she was hospitalized was in 2000, when a prescription change failed to work. But today, she runs a large private practice in Nashville, where—just as in medical school, when she hired a tutor—she now retains an older and more experienced psychiatrist “to help me talk through my cases and review how they’re going.”

She talks about her experiences openly, addressing NAMI workshops around the country, speaking at physician conferences, and often sharing her story with patients—“to show that you can recover from serious problems in your life.”

She is famous around town for giving away little clay turtles from Guatemala: she sees turtles as a symbol of perseverance and determination, and has hundreds of clay, plastic, and ceramic turtles throughout her house.

Openness, for Dr. Baxter, was hardly a matter of choice: her medical history made disclosure an all too obvious decision. “But I still think it’s good when people know,” she says. “Then, when I got sick and bad things happened, they were more compassionate.”

Dealing with bp in practice

Mental Health Awareness Week in Canada features an annual campaign called the Four Faces of Mental Health. It’s a way of putting a human face on conditions, such as bipolar disorder, schizophrenia, and depression. For the first time last year, one of the four faces was a doctor.

“I had to convince myself to do it,” concedes Michael Paré, MD, a Toronto, Ontario, general practice psychotherapist. “I’m always telling my depressed patients that they don’t have to feel ashamed: They’re not bad; they’re not crazy; they’re not weak. But doctors—while we’re taught to say that—are not actually following through and admitting it. If it [mental illness] isn’t our fault, then why is it so bad to stand up and be counted?”

After a “very, very difficult childhood,” Dr. Paré sunk into a major depression in his mid 20s. “Literally, every day was like a terror, like being alive was the worst possible thing,” he says. “It’s impossible for me to remember the feeling, but I do remember my knowledge of it. Like when I opened my eyes in the morning, it was like, ‘Oh no, I’m still alive.’”

He swallowed a lot of pills one day and fell into a coma for a week, recovering only after undergoing a lumbar puncture, or spinal tap.

A few years ago, Dr. Paré was invited to address a large group of psychiatrists on the subject of depression. It was a professional talk, but at the end, he impulsively made mention of his own experience.

“I said, ‘Interestingly enough, I’ve suffered from major depression.’ And there was no reaction. No one came up to me after the talk. I thought I was dropping a bomb, but not one person acknowledged it. And these were psychiatrists who work with depression every day.”

Despite his own candor, Dr. Paré typically counsels young doctors against disclosing any history of mental illness at the beginning of their careers.

Most young doctors don’t need to be told. Consider the case of M., a 24-year-old California woman diagnosed as having bipolar disorder during her second year of medical school in Lebanon. She is so fearful of one day being denied a medical license that she refuses to see a psychiatrist now that she is back in the U.S.

Instead, she orders her medications online. They cost $400 a month and they’re generic, but they have one overriding advantage: they arrive unmarked from India and Australia.

“I’d go to any lengths to have my medication,” she says. “If I go to a psychiatrist here, my whole future is ruined—everything I worked for. There are always questions on the residency or licensing applications—do you have a medical condition? That’s why it’s so important to keep it to myself.”

That fear is widespread. A 2001 survey of Michigan psychiatrists found that half of them would rather self-treat than risk having a history of mental illness on their health insurance record.

And with good reason, according to psychiatrists who point to the widely publicized case of Steven Miles, MD, whose own bipolar disclosure turned into a cause célèbre.

In 1994, Dr. Miles, a well-respected gerontologist and professor of biomedical ethics at the University of Minnesota Medical School, had sought help for depression from a psychiatrist who diagnosed bipolar disorder II. After a few weeks on medication—and with no interruption in his teaching or clinical work—Miles began to recover.

But several months later, on filling out the annual renewal form for his state medical license, he answered the questionnaire affirmatively when asked if he had ever been diagnosed with or treated for manic depression, schizophrenia, compulsive gambling, or other psychiatric conditions.

Though he had never been the subject of a patient’s complaint, and though his name appeared regularly on lists of the state’s “Top 100 doctors,” the Minnesota Board of Medical Practice began an investigation, demanding a letter from his psychiatrist and full access to the records of his psychotherapy sessions.

Dr. Miles refused, and for the next four years he fought the board, arguing that its policy was overly invasive and served to deter physicians from seeking help for mental health disorders. After a protracted standoff and threats of legal action, the licensing board eventually changed its policy.

Today, many state licensing boards have adopted similar changes, but there is no consistent state-to-state policy. Nor is there any specific system for physician health care in the U.S.; the only health programs aimed at doctors are those restricted to drug and alcohol treatment.

In Canada, a physician wellness program has been set up in every province; its directors have joined to create a federal network, Canadian Physician Health Network, to share information and strategies. Under this system, a doctor who has bipolar disorder, for example, can be assisted and will be monitored at least three to five years, after which—if he or she is deemed stable—the monitoring is decreased or even removed.

Here’s how it works for one Toronto doctor, a 41-year-old resident psychiatrist who last year was diagnosed as having bipolar disorder. A., as he asked to be identified, was someone who didn’t “do” just residency. He simultaneously created a banking project for residents, invested $8,000 of his own money into a biotech company, organized a charitable organization for autism, conducted research into schizophrenia, and juggled a series of home renovation projects.

“I always have to self-monitor to slow down,” he explains ruefully, “because the rest of the world doesn’t operate as fast as my world does.”

Then last year, everything crashed. “A secretary made a note saying I was speaking too fast, had taken time off from work, and that I’d asked for a referral to a psychiatrist. And suddenly, there’s this note going around saying I have bipolar disorder—and no one had even diagnosed me at the time.”

After a letter was sent off to the Ontario College of Physicians and Surgeons, the self-regulating body for the province’s medical profession, A.’s first instinct was to fight.

“I don’t want to be labeled just because I’m outside the box,” he says. “No way in hell was I going to have a label like that. I didn’t want someone labeling my enthusiasm—even though I realized some of my experiences were perhaps bizarre.”

His psychiatrist reassured him, however, that he was not alone, that other physicians had similar problems, and that the system’s checks and balances would allow him to continue in his career.

“I thought that was a bunch of hogwash,” A. says. “All my faculties are based on my judgment and if that’s taken away from me how can I practice when people’s lives are dependent on my judgment?”

That insight doesn’t always mitigate the irritating presence of the system’s checks and balances. To A. they feel like an albatross, like he’s being “policed.”

“I have to inform my program director that I have an illness,” says A., checking off the list. And everything I say to my psychiatrist becomes open to the College of Physicians and Surgeons. They want me to see a mood disorder specialist. I have a case manager to keep an eye on me and make sure I’m functioning on all cylinders.

“I also have the people who ‘supervise’ me at work,” A. continues. “So all these eyes are on me. It feels like I’m being policed even though I’m not being policed.”

The choice is no longer his. His behavior had become so erratic that he could no longer deny his problems by working harder and plugging in the answers that he knew would get him off the hook with his fellow psychiatrists.

“With our specialized training we may be able to rationalize or deny our symptoms,” says Mamta Gautam, MD, an Ottawa, Ontario, psychiatrist who restricts her practice to physicians.

“And, a doctor’s ability to function at work is often the very last thing to go. In fact, you see that most people don’t have any idea that a colleague is struggling, because if anything they’re more productive than before. When, really, it’s just a mechanism—to keep working and stay with what’s known rather than stop and reflect.”

Coping and reaching out

Long before Dr. Vogel-Scibilia examined the patient who had bipolar and saw herself reflected back, she had figured out ways of adapting to her seasonal mood swings. Anticipating depression in winter, she scheduled her most challenging coursework for the fall.

“I’d do the research, pick the cards, and do the bibliography,” she says, “so if I had to write the paper I’d just have to write the text out. I would try to compensate for things, study stuff in advance.”

Now a practicing clinical psychiatrist in Beaver, Pennsylvania, she operates an independent mental health clinic and serves as clinical assistant professor at Western Psychiatric Institute, the same hospital where she did her residency and diagnosed herself.

Today, she is president of NAMI at the national level and a consultant for psychopharmacology projects at the National Institute of Mental Health and is a grant reviewer for the federal government.

But at least once a week, she gets a call from a young medical student or resident doctor—usually, she says, it’s a psychiatric resident secretly struggling with mental illness. Some of them offer to fly or drive long distances for a consultation.

“I have this theory,” she says. “If you were a patient before you were a doctor you don’t have so much trouble being in a patient role. But if you’ve been the doctor first and then you get sick, you have a hell of a hard time being a patient.

“You could do a study [about physicians having mental illnesses], but there’d be no sample, because nobody would agree to be interviewed. Actually I could just poll my friends. The trouble is it wouldn’t be a random sample. It would be the friends of Suzanne.”

http://www.bphope.com/Item.aspx/102/conspiracy-of-silence-when-the-psychiatrist-has-bp

“First Dr. Phil, Now NBC’s Brian Williams: Stigmatizing Mental Illness” by Peter Earley

2 Aug
From peteearley.com:

I’ve been warned that fighting stigma is a bit like tilting at windmills, but I find it difficult to keep silent when I see blatant examples. Dr. Phil’s comments about how “insane” individuals “suck on rocks and bark at the moon” were especially offensive since he is a psychologist. Last night, I flipped on the news and heard NBC Anchor Brian Williams make remarks that were just as stigmatizing.

Williams announced that Ariel Castro, the Cleveland kidnapper/rapist who held three women captive for a decade, was “arguably the face of mental illness.”

Not content to toss millions of Americans who have mental health issues under the bus, Williams spoke with contempt about how Castro had given a rambling, difficult to hear speech, during which he justified his actions by  ”appropriating the language of the addiction and treatment culture” and declaring himself “sick.”







What exactly is the “language of the addiction and treatment culture” Mr. Williams?

As a former reporter for The Washington Post, I would never have jumped to the conclusion that Ariel Castro has a mental illness simply because he committed heinous crimes.

In an email this morning, my friend, Bob Carolla, director of media relations for the National Alliance on Mental Illness, pointed out that Williams violated a recently approved standard in the Style Book of the Associated Press. Style books are the “bibles” of journalism, establishing the rules that responsible reporters are supposed to follow when writing stories. On March 7th, of this year, the AP added new guidelines that reporters should follow when writing about mental illnesses.

Clearly, Brian Williams didn’t get that memo.

In June, The White House held a mental health summit during which President Obama declared that our nation has to rid ourselves of the “embarrassment” associated with mental illnesses. “We’ve got to get rid of that stigma,” President Obama said.

If you wish to know how difficult that is going to be, turn on Dr. Phil and NBC Nightly News.

The question is: how do we go about changing this? [One easy thing is to sign a petition demanding NBC apologize.]

Here are the guidelines that Brian Williams ignored. Someone needs to read them to him, especially the bold faced paragraph!

(Thanks to Jeremy Lincicun for providing YouTube of Brian Williams.)

Entry on mental illness is added to AP Stylebook

March 7, 2013

Associated Press today added an entry on mental illness to the AP Stylebook.

“It is the right time to address how journalists handle questions of mental illness in coverage,” said AP Senior Vice President and Executive Editor Kathleen Carroll. “This isn’t only a question of which words one uses to describe a person’s illness. There are important journalistic questions, too.

“When is such information relevant to a story? Who is an authoritative source for a person’s illness, diagnosis and treatment? These are very delicate issues and this Stylebook entry is intended to help journalists work through them thoughtfully, accurately and fairly.”

The entry, which was immediately added to the AP Stylebook Online and will appear in the new print edition and Stylebook Mobile, published in the spring, reads as follows:

mental illness Do not describe an individual as mentally ill unless it is clearly pertinent to a story and the diagnosis is properly sourced.

When used, identify the source for the diagnosis. Seek firsthand knowledge; ask how the source knows. Don’t rely on hearsay or speculate on a diagnosis. Specify the time frame for the diagnosis and ask about treatment. A person’s condition can change over time, so a diagnosis of mental illness might not apply anymore. Avoid anonymous sources. On-the-record sources can be family members, mental health professionals, medical authorities, law enforcement officials and court records. Be sure they have accurate information to make the diagnosis. Provide examples of symptoms.

Mental illness is a general condition. Specific disorders are types of mental illness and should be used whenever possible: He was diagnosed with schizophrenia, according to court documents. She was diagnosed with anorexia, according to her parents. He was treated for depression.

Some common mental disorders, according to the National Institute of Mental Health (mental illnesses or disorders are lowercase, except when known by the name of a person, such as Asperger’s syndrome):

– Autism spectrum disorders. These include Asperger’s syndrome, a mild form of autism. Many experts consider autism a developmental disorder, not a mental illness.
– Bipolar disorder (manic-depressive illness)
– Depression
– Obsessive-compulsive disorder (OCD)
– Post-traumatic stress disorder (PTSD)
– Schizophrenia

Here is a link from the National Institute of Mental Health that can be used as a reference:

http://www.nimh.nih.gov/index.shtml

Do not use derogatory terms, such as insane, crazy/crazed, nuts or deranged, unless they are part of a quotation that is essential to the story.

Do not assume that mental illness is a factor in a violent crime, and verify statements to that effect. A past history of mental illness is not necessarily a reliable indicator. Studies have shown that the vast majority of people with mental illness are not violent, and experts say most people who are violent do not suffer from mental illness.

Avoid unsubstantiated statements by witnesses or first responders attributing violence to mental illness. A first responder often is quoted as saying, without direct knowledge, that a crime was committed by a person with a “history of mental illness.” Such comments should always be attributed to someone who has knowledge of the person’s history and can authoritatively speak to its relevance to the incident.

Avoid descriptions that connote pity, such as afflicted with, suffers from or victim of. Rather, he has obsessive-compulsive disorder.

Double-check specific symptoms and diagnoses. Avoid interpreting behavior common to many people as symptoms of mental illness. Sadness, anger, exuberance and the occasional desire to be alone are normal emotions experienced by people who have mental illness as well as those who don’t.

Wherever possible, rely on people with mental illness to talk about their own diagnoses.

Avoid using mental health terms to describe non-health issues. Don’t say that an awards show, for example, was schizophrenic.

Use the term mental or psychiatric hospital, not asylum.

About AP
The Associated Press is the essential global news network, delivering fast, unbiased news from every corner of the world to all media platforms and formats. Founded in 1846, AP today is the most trusted source of independent news and information. On any given day, more than half the world’s population sees news from AP. On the Web: www.ap.org.

 

http://www.peteearley.com/2013/08/02/first-dr-phil-now-nbcs-brian-williams-stigmatizing-mental-illness/

“More Mentally Ill Persons Are in Jails and Prisons Than Hospitals: A Survey of the States” by E. Fuller Torrey et al

22 Jul
The Treatment Advocacy Center and the National Sheriffs’ Association released this report in 2010:


Executive Summary

(a) Using 2004–2005 data not previously published, we found that in the United States there are now more than three times more seriously mentally ill persons in jails and prisons than in hospitals. Looked at by individual states, in North Dakota there are approximately an equal number of mentally ill persons in jails and prisons compared to hospitals. By contrast, Arizona and Nevada have almost ten times more mentally ill persons in jails and prisons than in hospitals. It is thus fact, not hyperbole, that America’s jails and prisons have become our new mental hospitals.

 

(b) Recent studies suggest that at least 16 percent of inmates in jails and prisons have a serious mental illness. In 1983 a similar study reported that the percentage was 6.4 percent. Thus, in less than three decades, the percentage of seriously mentally ill prisoners has almost tripled.

 

(c) These findings are consistent with studies reporting that 40 percent of individuals with serious mental illnesses have been in jail or prison at some time in their lives.

 

(d) It is now extremely difficult to find a bed for a seriously mentally ill person who needs to be hospitalized. In 1955 there was one psychiatric bed for every 300 Americans. In 2005 there was one psychiatric bed for every 3,000 Americans. Even worse, the majority of the existing beds were filled with court-ordered (forensic) cases and thus not really available.

 

(e) In historical perspective, we have returned to the early nineteenth century, when mentally ill persons filled our jails and prisons. At that time, a reform movement, sparked by Dorothea Dix, led to a more humane treatment of mentally ill persons. For over a hundred years, mentally ill individuals were treated in hospitals. We have now returned to the conditions of the 1840s by putting large numbers of mentally ill persons back into jails and prisons.

 

(f) Any state can solve this problem if it has the political will by using assisted outpatient treatment and mental health courts and by holding mental health officials responsible for outcomes. The federal government can solve this problem by conducting surveys to compare the states; attaching the existing federal block grants to better results; and fixing the federal funding system by abolishing the “institutions for mental diseases” (IMD) Medicaid restriction.



 

Full Report: http://www.treatmentadvocacycenter.org/storage/documents/final_jails_v_hospitals_study.pdf

“NAMI and Robert Whitaker” by Claire Weber

9 Jul
From the website Mad in America:

Fireworks and heated debate were expected by many when Robert Whitaker recently addressed a group at the National Alliance on Mental Illness (NAMI) annual convention in San Antonio, Texas. NAMI has historically been criticized as a ‘front’ for pharmaceutical companies and Whitaker has been painted by many as ‘anti-psychiatry’ and ‘anti-medication’. The views are understandable. There were several pharmaceutical companies sponsoring and exhibiting at this year’s NAMI annual convention and the organization still receives funding for its operations from pharmaceutical companies, and Whitaker’s work is openly critical of both the American Psychiatric Association and the mainstream approach to psychiatric medication.

So why was Whitaker invited to the national NAMI convention and how did it turn out?

According to outgoing NAMI national Executive Director, Mike Fitzpatrick, “Having Bob Whitaker here was important. It is important to have dialogue about the use of pharmaceuticals. NAMI wants to make sure this dialogue happens. The NAMI tent is big enough for many perspectives.”

Whitaker was introduced by the President of the NAMI Board of Directors, Keris Jan Myrick, to a standing-room-only crowd of over 325 people. He started by explaining what led him to uncover the information that ultimately led to his books Mad in America and Anatomy of an Epidemic. He was seeking to confirm conventional wisdom about treatment for mental illness when he wrote an investigative journalism piece about a clinical trial that was taking people who had been diagnosed with schizophrenia off of their medications to see how they fared. Convinced that this was abusive, he sought to expose what was happening. Through a series of events, he came upon information that pointed to a story that was not being told. One study that he found was by the World Health Organization and it included the following statement: “Living in a developed country is a strong predictor for poor outcomes for schizophrenia.”

This line was pivotal for Whitaker. “People claim that I am ‘anti-psychiatry’ but the truth is that this sentence is why I started studying all of this. I thought it was shameful that we should have such poor outcomes.”

After explaining why he got interested in this topic, Whitaker went on to share research for his talk entitled “The Case for Selected Use of Neuroleptics.” Here is the description of his talk from the NAMI convention brochure:

“The usual standard of care for prescribing antipsychotics for people diagnosed with schizophrenia and other psychotic disorders is to use the drugs immediately and, at least with schizophrenia, to maintain use of the medication. However, a review of the long-term outcomes literature reveals that a selective-use protocol, which would involve using the antipsychotic medications in a more limited fashion, would produce superior results. Such a protocol would involve treating some first-episode patients without antipsychotics for the first few weeks, as well as supporting some patients, after their initial use of the medications, in going off the medications. Northern Finland adopted this selective-use protocol in 1992, and that region now has the best documented long-term results in the western world.”

Throughout the talk, Whitaker emphasized the importance of slow withdrawal and highlighted how most studies only look at abrupt withdrawal which can cause reactions that look like ‘symptoms’.

After presenting overviews of the research, Whitaker asked the question, “Do we as a country want to embrace a paradigm of care that is expensive, ineffective and – for many – harmful? Or, do we want a paradigm of care that supports people who want to come off of antipsychotics with help and support?”

Continuing, he said, “I am coming here with a story that is upsetting. I think NAMI should be congratulated for having me here.” There was a loud round of applause.

At the end of the presentation, Whitaker opened up the floor for commentary and questions.

The first was from a woman who brought up a point about the time that is needed for people to be able to reduce medication safely. She pointed out that in the 1950s, people could stay in the hospital for longer periods of time. Her experience was that people stay in the hospital for 5-7 days and come out with a prescription. In a distressed voice, she asked what is to be done about the information Whitaker presented.

Whitaker responded, “We have so much wrapped up in all of this. We believe that meds can stabilize people fast, so we discharge people quickly. We have put all of our eggs into one basket: meds, meds, meds. As far as ‘what do we do?, we have to continue to discuss this, to look at the painful things…. NAMI is a powerful storyteller in our society. If NAMI discussed this story, it could be game changing. We need to have places where people can go. The original meaning of the word asylum was ‘refuge’, and in the early 1800s, Quakers built asylums in the United States that provided people with a healing environment — fresh air, exercise, good food, and so forth. And historians who have studied Quaker asylums have concluded that their outcomes were better than we have ever had since.”

One man, a NAMI member and member of a NAMI consumer council, spoke up, “As a person with 37 years of lived experience with schizophrenia, what you are saying here about the poor outcomes has borne out in my life. I came up in the time of Thorazine and all those drugs. They were terrible. They were only good for eight months and then you had to find a new one. When I would try to stop taking them abruptly, I would become terribly psychotic, so I had to stay on them. Drug companies don’t look for what they can cure; they look for compounds they can sell you forever.”

Another man spoke of his son who started having auditory and visual hallucinations at age seven. He said that he and his wife were educated people who sought out every option and found that they ultimately needed to opt for medication. He said that even among people in the NAMI organization, they felt that their choice was controversial. He told Whitaker that he appreciated him coming to speak in such a balanced way and that it would be helpful to NAMI and people like him if we could come together and continue to discuss this topic in a balanced way with the goal of finding a unified voice to speak to legislators.

One of the audience members said he had come expecting that it would turn into a “firefight,” but that hadn’t happened at all. Whitaker said, “We all have the same shared interest, to do right by people that we love.”

One woman said of Whitaker’s website, http://www.madinamerica.com, “I’d like to thank NAMI for having you here… One thing I notice about the website is that people who are attracted to write there tend to be a self-selected group who really hate psychiatry. This inability to speak with a united voice is damaging our community.”

Whitaker said, “Sometimes I am uncomfortable with the overall sentiment on the website, in that we don’t have as much diversity of opinion as I would like. (ref: http://www.madinamerica.com). It’s a work in progress. We need to have a place for all voices. We want to have voices of people trying to grapple with what all of this means. It doesn’t have the breadth of writers we want to have. In the beginning, we had invited psychiatrists and others with more mainstream views, but critical comments by readers, which at times were overly personal, chased them away. We didn’t have the resources to manage comments so that the discussion remained civil. We’ve gotten much better with that.” He emphasized that historically, the voices of people being treated for mental health issues were not represented. “We’ve opened our website to that voice.”

The following day was the closing event and the annual NAMI business meeting. It was called, “The Many Faces of NAMI.” Myrick addressed the crowd and spoke of the importance of including many voices and hearing all perspectives. “When ‘I’ is replaced by ‘we’, illness become wellness.”

I for one am ready for more ‘we’ in this dialogue. I am a member and employee of my local NAMI affiliate and an avid reader of the Mad in America webzine. On a daily basis, I hold the tension of many points of view and constantly seek to find the places where these two tribes merge and where we can have more influence together than apart. I am seeking more ‘we’ on this journey of grappling with all of this. Are you in?

http://www.madinamerica.com/2013/07/nami-and-robert-whitaker/

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