Posts tagged schizophrenia
Posts tagged schizophrenia
EARTH DAY 2013
By Ron Unger
Earth Day 2013 is a good time to reflect on how problems in our mental health system reflect deep flaws in “normal” conceptions of what it means to be a human being. These flawed conceptions then contribute in a critical way to the climate crisis that threatens us all.
In noticing the connection between flawed ideas about “normality” and the environmental crisis that threatens to bring down our civilization, I’m following in the footsteps of David Oaks, director of MindFreedom, who would likely be writing about this himself if he wasn’t too busy working in rehab, trying to get back functioning after breaking his neck last December. (By the way, MindFreedom really needs donations right now to take it through a period of financial crisis: read why here , or go to http://www.mindfreedom.org/join-donate to make donations.)
A key problem is that within most of the mental health system, individuals are seen as healthy when they “fit in” or adjust to the overall society. To the extent that they don’t adjust, they are seen as “having issues,” and those most out of adjustment are seen as “psychotic.”
At times, it seems to make sense to look at things this way: adjustment seems to solve problems, and not fitting in, or being maladjusted, gets in the way of solving them. People who are severely maladjusted may endanger their own lives or those of others.
Unfortunately, humanity is finding out that in the absence of wisdom, people can fit in with each other and be socially “well adjusted” and yet be causing catastrophic problems, such as by undermining the health of the ecosystems they live within and depend on for survival. Or, as David Oaks likes to put it, “normal people are destroying the planet!”
R.D. Laing once said “It is of fundamental importance not to make the positivist mistake of assuming that because a group’s members are in formation this means that they’re necessarily on course.” Of course, those who break from formation are not necessarily on course either, but if the crowd is heading over a cliff, it is important at some point to break away and start experimenting with other directions. Unfortunately, in our society, young people who experience trouble while they experiment with new directions are simply labeled as “ill” and are seen as in need of being drugged back to some semblance of what is “normal” within the culture, even though the culture itself is headed straight for environmental catastrophe.
It seems we need a more complex idea about what constitutes health, and sickness. I think the notion of “creative maladjustment” as described in Sophie Faught’s previous Mad in America post, “Taking Martin Luther King Jr’s Call For Creative Maladjustment Seriously” is exactly what we need as the foundation for a definition of “mental health” that would lead us towards both a functional mental health system and a functional society.
There seems to be little question that being maladjusted to something that is healthy is problematic. So for example the person who has healthy food but thinks it is all poisoned will have difficulties. But being adjusted to something that is not healthy is also problematic, and can be a much bigger problem. The notion of “creative maladjustment” addresses both sides of this dilemma, suggesting the use of creative discretion in when and how to be maladjusted, rather than either supporting either blind conformity and adjustment, or reckless and undiscriminating maladjustment.
When mental health workers become able to recognize the possible value of maladjustment, they become less sure they have complete answers, and become able to relate to those they intend to help from a position of being fellow human beings searching for positive approaches to life rather than from a role of being authorities in what it means to be “sane.” Mental health workers who recognize the value of searching, and of being maladjusted, can see possible value in “mad” experiences, and can connect on a peer level even when they are relating to people who have experiences that are very different from their own. Being able to connect in this way is, I think, a precondition to being able to be genuinely helpful.
Of course, if one talks about seeing something positive in psychotic experiences, one can expect to be accused of “romanticizing madness.” But somehow, those who worry that people will go too far in seeing something positive in mad experience never worry about the opposite, the possibility that people will “awfulize” madness, that they will see only the negative in it, and so will increase fear of madness and mental health stigma. (It’s actually pretty bizarre that our mental health system will work so hard to convince people that mad experience is nothing but bad, and then turns around and tries to run “anti-stigma campaigns”!)
Recognizing “creative maladjustment” as a better definition of mental health allows mental health workers to honor the spirit of mad rebellion as being of potential value, even if not every manifestation of that spirit is helpful, and even if some manifestations can be highly dangerous! Young people need to know that their efforts to be maladjusted to much of what is going on makes sense, even as they also need to know that it typically takes work and reflection to refine that maladjustment into something that is usefully creative.
Another part of making maladjustment creative is finding ways to come together with others in carrying it out. This need to reconnect with others can seem paradoxical, because there is always the danger that if one connects too much, one will be right back “in formation” with a dysfunctional way of being organized, and a dysfunctional society! The trick is to find a way to be autonomous enough to find a direction based on something deeper than just fitting in or being normal, while also being connected enough to cooperate with others in getting support and in sharing ideas and perspectives. This is much easier to do when the culture, or at least a subculture, supports the idea of something like creative maladjustment.
When I was an alienated young man, it helped me greatly to find others who were maladjusted in their own ways and to find that we could work together in ways that were a lot of fun! It was extremely helpful for us to support each other’s ability to move and create independently, even when the creativity was more silly than serious. A long time friend of mine, John Law, coauthored a book coming out in May on the Cacophony Society, an organization closely related to the Suicide Club, which was the group he and participated in together back in the 1970’s. For me, it was the coordinated maladjustment in the events we created that helped me reconnect with the larger world, and I think we need to give greater recognition to the value of such ways of connecting.
MindFreedom’s current promotion of a “Creative Maladjustment Week” can be seen as just one small step toward the creation of a new ideal in our culture, the ideal of always aiming to be maladjusted toward what is destructive, rather than the flawed idea of mental health as “adjustment.” Communicating the ideal of creative maladjustment to the public can also be a way of increasing awareness about how the process of being “mad” may be part of exploration toward new ways of being, with some of those new ways being possibly that which may ultimately save us from catastrophe.
It will be of little long term use to reform society and the mental health system if the ecological crisis then completely undermines civilization, leading to massive famine, die offs, migrations and wars. Any mental health reforms would likely get lost in the chaos. But I believe mental health reform is still worth working toward at this point, because changing the aim of mental health work, from adjustment to creative maladjustment, could shift the mental health system toward actually supporting exploration in new ways of thinking and being instead of always attempting to suppress it. We need such exploration at this time more than perhaps any other.
I also want to point out that a key part of creative maladjustment is balancing personal fun, joy, and humor with activism and attention to the larger realities. E.B. White is famous for having said ““I get up every morning determined to both change the world and have one hell of a good time. Sometimes this makes planning my day difficult.” David Oaks helped me learn how to approach life this way, and I think it is key to being an activist and not burning out. It is true that finding the balance can be difficult, but each step of the way can also be incredibly rewarding, and every other way of being in the world makes a lot less sense.
I’m hoping in the near future to write about how to create public events or spectacles that communicate to the public both about the role of creative maladjustment in cultural evolution and renewal, and about the vital necessity of doing something different before the climate crisis escalates into something that kills most all our possibilities.
Till then, I hope you persist in your own forms of creative maladjustment, and in connecting with others on that wavelength, and I also hope that you support MindFreedom International in continuing to do its work of linking together groups all over the planet which working to support people’s access to human rights and to creative maladjustment. Like I said earlier, it is a tricky period financially for MindFreedom as it copes with David being in rehab, but it’s vital we keep this group going that has done so much for keeping these issues alive all over the world. Again, you can read why here , or go to http://www.mindfreedom.org/join-donate to make donations.
Thanks for all that you do to support mental health reform, creative maladjustment, groups like MindFreedom, and all the actions you take in support of insuring a future for the human race on this beautiful planet of ours!
Dr. Seikkula talks about the Open Dialogue approach to psychiatric interventions, in which he describes how this approach was developed, as well as the basic principles of the approach which have emerged from analysis of the results.
Open Dialogue is a Finnish alternative to the traditional mental health system for people diagnosed with “psychoses” such as “schizophrenia” is “Open Dialogue.” This approach aims to support the individual’s network of family and friends, as well as respect the decision-making of the individual.
Find out more about Open Dialogue HERE.
[Article of Interest] People with Mental Illness at Highly Increased Risk of Being Murder Victims
Risk highest among those with substance use disorders
People with mental disorders have a highly increased risk of being victims of homicide, a large study published today on bmj.com suggests. The perpetration of homicide by people with mental disorders has received much attention, but their risk of being victims of homicide has rarely been examined. Yet such information may help develop more effective strategies for improving the safety and health of people with mental illness.
So a team of researchers from Sweden and the USA assessed mental disorders and homicides across the entire population of Swedish adults between 2001 and 2008. Mental disorders were grouped into the following categories: substance use disorder; schizophrenia; mood disorders including bipolar disorder and depression; anxiety disorders and personality disorders. Results were adjusted for several factors such as sex, age, marital status, educational level, employment status and income. Of 7,253,516 adults in the study, 141 (22%) out of 615 homicidal deaths were among people with mental disorders.
After adjusting for several factors, the results show that people with any mental disorder were at a fivefold increased risk of homicidal death, relative to people without mental disorders. The risk was highest among those with substance use disorders (approximately ninefold), but was also increased among those with personality disorders ((3.2fold), depression (2.6fold), anxiety disorders (2.2fold), or schizophrenia (1.8fold) and did not seem to be explained by substance use.
One explanation for the findings may be that those with mental disorders are more likely to live in high deprivation neighbourhoods, which have higher homicide rates, say the authors. They may also be in closer contact with other mentally ill people and be less aware of their safety risks owing to symptoms of the underlying illness. They suggest that interventions to reduce these risks “should include collaborations between mental health clinics and the criminal justice system to develop personal safety and conflict management skills among people with mental illness.” Improved housing, financial stability, and substance abuse treatment may also reduce vulnerability to violent crime, they add. A key implication of these new findings is that clinicians should assess risk for the full array of adverse outcomes that may befall people with mental health problems, say Roger Webb and colleagues at the University of Manchester, in an accompanying editorial. This would include being a victim of violence as well as committing it, abuse and bullying, suicidal behaviour, accidental drug overdoses, and other major adverse events linked with intoxication or impulsivity.
These risks go together, and people with mental illness, as well as their families, should receive advice on avoiding various types of harm, they suggest. They acknowledge that some important questions remain unanswered, but suggest that national mental health strategies “should reflect the broad nature of safety concerns in mental healthcare, while antistigma campaigns among the public should aim to counter fear of mentally ill people with sympathy for the risks they face.”
“Mental disorders and vulnerability to homicidal death: Swedish nationwide cohort study”, Casey Crump et al. BMJ. 2013;346:f557 doi:10.1136/bmj.f557
Editorial: “Risk of people with mental illnesses dying by homicide”, Roger Webb et al. BMJ. 2013;345:f1336 doi: 10.1136/bmj.f1336
[Article of Interest] Edward Deeds, Outsider Artist, Leaves Behind Hauntingly Innocent Drawings From Mental Institution
By Priscilla Frank
”The artist really should be lost to history, and certainly these drawings should,” said curator Tom Parker of his upcoming exhibition. The works in question are by Edward Deeds, a mental patient at Missouri State Hospital for almost 40 years. The show, entitled, “Talisman of the Ward: The Album of Drawings by Edward Deeds,” presents 30 works by the outsider artist.
Deeds, who was diagnosed with dementia praecox and schizophrenia, was committed to a mental institution in 1936. Beyond this fact we know little about his condition, personality or life, although the curator sees all he needs to in Deeds’ artwork. “The images have one fabulous clue on every page,” Parker explained to the Huffington Post. “State Lunatic Asylum, written on the paper by the hospital. One poetic detail which encapsulates everything you need to know about the artist and his circumstance.”
The artist’s drawings, crafted on the official hospital stationary, radiate a remarkable innocence given the circumstances of their creation. Whimsical lions, wide-eyed characters and vintage vehicles comprise a pictorial land far beyond the mental facility walls. The only reminder of Deeds’ dark reality is recurrence of the letters “ECT,” a likely acronym for the controversial shock treatment known as electroconvulsive therapy.
At the time of Deeds’ death he gave his collection of drawings to his mother, who then passed them to her other son, who stored them in his attic. Years later, the drawings were tossed out to a curbside junk pile and were discovered by a 14-year-old boy who became fascinated with them. He kept the works safe for 36 years.
The precious drawings, both unpretentious and cryptic, present an idyllic vision from a mysterious perspective. The story of their creation and survival is as magnetic as the raw emotion in his innocent crayon strokes.
“Talisman of the Ward: The Album of Drawings by Edward Deeds” will show from January 10 until February 9, 2013 at Hirschl & Adler Modern.
[Documentary of Interest] People Say I’m Crazy
Making this film was my idea.
At the beginning, when I had my psychotic break in college, I did not know what was happening with me. I thought that by filming I could explore my illness and try to understand what was going on.
I filmed everything—from being catatonic to when I had ECT (electro-convulsive, or electroshock therapy).
Later on I kept filming because I was so angry about how much misinformation there is about brain diseases like mine. I wanted the world to know what it’s like to live with labels such as “psychotic,” “schizophrenic” and “severely disabled.”
I wanted to let the world know what it is really like to live with schizophrenia.
- John Cadigan
People Say I’m Crazy is the only film about schizophrenia ever made by someone with schizophrenia. Mental illness is viewed from the inside out as the audience becomes witness to a first-hand account of the symptoms of schizophrenia and the disease’s effect on one man and his family. [It] has been hailed as a unique, powerful, and ultimately optimistic statement on coping with schizophrenia, challenging stereotypes and humanizing an often misunderstood illness.
This film tells the story of a young man, John Cadigan, who develops schizophrenia at age 21 while studying art at Carnegie Mellon University in Pittsburgh, Pennsylvania. Initially devastated by his diagnosis, John eventually finds appropriate treatment and works his way into recovery, with the help of family and friends. The spotlight is also turned on John’s family as they struggle to understand John’s disease. With courage and love, the family learns how to support John in his efforts to resume living an independent and fulfilling life. By the film’s conclusion, John rejoins his family and community, fulfills his dream of launching his career as an artist, and—an important accomplishment for those who suffer from schizophrenia—moves into his own apartment to begin living an independent life.
The Filmmaker: John Cadigan
John made the film with the help of his sister, filmmaker Katie Cadigan, and Oscar-winning documentary filmmaker, Ira Wohl. John filmed his life for over 10 years—from when he had his first psychotic episode at age 21 until he was well into recovery a decade later. Throughout the process, he managed to record his story despite the cognitive and emotional difficulties created by his disease.
[Article of Interest] Side Effects of Mental Illness Drugs Cause Sudden Death
by Kerri Knox, RN
Schizophrenia is a scary and difficult chronic mental illness- both for the person and for their family who all have to live with the diagnosis. In most cases, antipsychotic medications need to be taken forever to control the disturbing symptoms. But rarely is anyone told that these medications not only double the risk of sudden cardiac death, but also put the sufferer at risk for several other chronic illnesses as well.
The severe mental condition that has been termed schizophrenia is NOT the ‘multiple personality disorder’ that many think of when they hear the term, but is a different mental illness characterized by bizarre behaviors like paranoia, hearing voices, and having hallucinations. It is often acquired after a stressful life event and occurs swiftly and unpredictably in what is known as a ‘psychotic break’. This is devastating for the patient and their family who suddenly have to live with a diagnosis of mental illness. And that is just the first step in a life filled with doctors, hospitals, medications and psychiatrists- with little hope to ever really have a normal life again.
Schizophrenia and a handful of medications forever
There is no ‘cure’, in traditional medicine, for Psychosis; and a prescription for one or more ‘antipsychotics’ with names like Haldol and Risperdal, along with a cocktail of other drugs often prescribed for anxiety, depression and sleep are frequently on the menu. But what these people are rarely, if ever, told about are the long term side effects of these drugs. While doctors are ever prescribing anticholesterol ‘statins’, aspirin and blood pressure medications in order to achieve a 1 - 2% reduction in heart disease, they are knowingly giving schizophrenic individuals, who generally get their first psychotic break as a teenager or young adult, a shortened lifespan from the medications that they are prescribing.
In the research available on these drugs, it is well known that Sudden Cardiac Death is a ‘side effect’ of antipsychotic medications. In fact, these medications DOUBLE the risk of sudden cardiac death. In the beginning, however, it does not give them the “heart disease” of clogged arteries that we associate with heart attacks. The immediate risk of antipsychotics is that they give sufferers a high risk for a very specific disorder called ‘Prolonged Q-T interval’.
Prolonged Q-T Interval gets its name from the prolonged time that it takes for the electrical activity of the heart to return to normal after each heartbeat. But this extra time isn’t measured in minutes or seconds, but in hundredths of a second- making it difficult to diagnose. But this extra millisecond can have the devastating consequence of putting the taker of these medications into an abnormal cardiac rhythm called Ventricular Fibrillation- which will quickly lead to death without immediate emergency care. And this will come on without pain, shortness of breath or any of the other ‘warning signs’ of a heart attack because it is not clogged arteries that are the problem, but the electrical system that is the primary problem.
Even worse, antipychotics don’t just put people into your vanilla, standard everyday Ventricular Fibrillation that generally responds well to the dramatic ‘paddles on the chest, everybody get away from the patient and shock them’ type of defibrillation that you see on television. It actually puts them into a very specific TYPE of Ventricular Fibrillation called Torsades de Pointes, that doesn’t change to a normal rhythm with the shocks and heart starting medications that are the ‘standard protocol’ for restarting the heart. Instead, ‘Torsades’ requires an immediate infusion of intravenous magnesium. As hospitals and emergency rooms have magnesium at hand, this shouldn’t be such a hard thing to do; but unfortunately, Torsades de Pointes is fairly rare and is difficult to recognize, so in many cases it is not even considered until the shocks and CPR are not working- and by then it is often too late for the magnesium to be effective.
But wait, there’s more…
Not only do antipsychotics double the risk of deadly heart rhythms, but they ALSO increase the risk of getting diabetes, high blood pressure, high cholesterol and obesity- which are risk factors for ‘regular’ heart disease complete with clogged arteries, angioplasty and open heart surgery. Fortunately, true psychosis is rare- so doctors don’t prescribe these dangerous medications unless they are absolutely necessary… right?
Unfortunately, this is not the case at all. In fact, over 200,000 people in the US are newly diagnosed each year and hundreds of thousands of prescriptions for antipsychotics are written every year. They are being given to adolescents, children and even preschoolers as young as two years old. Most of these are prescribed by primary physicians without the child having even had an evaluation by a psychiatrist. And almost half were written, not for schizophrenia as they are intended, but for ADD and ADHD for which the drugs have never even been tested!
“Rates of (doctor’s office) visits that resulted in a psychotropic prescription increased from 3.4 percent in 1994-1995 to 8.3 percent in 2000-2001. By 2001, one out of ten office visits by adolescent males resulted in a prescription for a psychotropic medication.” Trends in the use of psychotropic medications among adolescents, 1994 to 2001.
So, while researchers who study the cardiac death risk profile of antipsychotic drugs are advocating “sharp reductions” in the use of these agents- doctors are ignoring this advice and are steadily increasing the number of antipsychotic drugs prescribed each year. These patients, who are often children and teens without true schizophrenia, will somehow have to deal with several chronic health conditions that will not only shorten their lives, but decrease the quality of a life already made more difficult by mental illness.
Fountain House is about the power of community. It was created to relieve the loneliness and stigma that affect so many people who are living with serious mental illnesses, like schizophrenia, bipolar disorder, and major depression. Serious mental illness disrupts lives - people lose their jobs, they drop out of school, they alienate their families and friends, and they end up alone.
Visit the Fountain House Blog
[Article of Interest] “Stigma” of Mental Illness a Setback for Patients, Society
As posted on CBSnews.com
We don’t know what drove the gunman in Newtown to kill, and the fact is 95 percent of violence is committed by people who are not mentally ill. Even so, the shooting has put a spotlight on mental illness. All too often, the stigma attached to it keeps people from getting diagnosed and treated.
Four years ago, Zac Pogliano was a fun-loving teenager. He had plenty of friends and played in a rock band. His mother Laura remembers when he suddenly became paranoid.
“I would come home and bang on my own door after work every day, ‘Please let me in. It’s your mom. It’s your mom.’ And finally, I would crawl through my window,” she says.
“He would lock me out. And then one day, horribly, literally, he opened the door to me and I could tell by the look on his face that he did not know who I was.”
Eventually, Zac made a confession.
“He said, ‘Did you know I’ve been hearing voices for a year?’ … I said ‘My darling, why would you not tell your own mother? I would never turn away from you.’ He said, ‘Because no one wants a crazy person.’”
Zac’s fear of telling anyone about the voices delayed his diagnosis. He had schizophrenia. He still loves music, but the disease has forced him to put his life on hold. He’s been hospitalized several times.
Zac says the voices were criticizing him. “I can tell you it was a man voice and woman voice, picking on me,” he says.
Schizophrenia usually strikes young adults between the ages of 16 and 30. Not only can they hear voices, they may also suffer from visual hallucinations, delusions and extreme paranoia.
Zac can appear robotic and emotionless. Those are symptoms of the disease. The medication he takes can worsen those symptoms and also cause weight gain.
Zac agrees that there is a stigma attached to mental illness. “People will judge you, especially after someone gets assaulted by a crazy guy. I could be that crazy guy,” he says. Zac has never been violent.
While about 95 percent of violence is committed by people with no serious mental illness, those with schizophrenia are two to four more times more likely to commit violence than the average person. Studies have shown that proper treatment significantly lowers that risk.
Five days a week, Zac goes to an outpatient treatment program at Johns Hopkins Bayview Medical Center in Baltimore.
“We need to look at Zac every single day, we need to make sure that he’s taking medicine because that makes him think clearly,” says Krista Baker, his therapist. “The longer that we can get Zac to be doing well, the better the prognosis he has.”
Zac says he feels like he’s on the right track.
”I’m a 21-year-old man and I would like to have a steady life with a job and maybe a family some day.”
His mother, Laura, says her biggest misconception was that she could “fix it. That if I tried hard enough, he would regain his health. And he would be exactly like he was; and that’s very hard to accept.”
The stigma attached to mental illness continues to be a huge barrier and delay to early diagnosis and treatment.
[Article of Interest] I’m Elyn Saks and this Is What It’s Like to Live with Schizophrenia
By George Dvosky
Elyn Saks first started noticing that something was wrong when she was 16. One day, and without reason, she suddenly left her classroom and started walking home. It turned into an agonizing journey in which she believed all the houses in her neighborhood were transmitting hostile and insulting messages directly into her brain. Five years later, while attending law school at Oxford, she experienced her first complete schizophrenic break. Saks struggled over the course of the next decade, but she came through thanks to medication, therapy, and the support of friends and family.
Schizophrenia as a health condition is as neglected as it’s misunderstood. People tend to get squeamish when it comes to mental illness, convincing themselves that it’s not a wide scale problem, or that people who suffer from it are lost causes. At the same time, many people cling to outdated notions about the disorder.
Indeed, schizophrenia is not as rare as some people think. It has been estimated that anywhere from 0.3 to 0.7 percent of the population is afflicted with it. For a country like the United States, that’s anywhere from 940,000 to 2,200,000 people. And the costs are enormous, estimated at $62.7 billion per year in the U.S. alone. Yet, schizophrenia receives only a small fraction of the amount of medical research dollars that go into other serious diseases and disorders.
It’s also commonly mistaken for multiple personality disorder, what’s now referred to as dissociative identity disorder (DID). These two conditions are distinct, though some crossover exists; DID patients sometimes exhibit psychotic symptoms. Also, both DID and schizophrenia can be triggered by traumatic experiences. But that’s where the similarities end.
Another common misconception about schizophrenia is that people who suffer from it are extremely violent.
“And that’s just not true,” says Saks. “Most people with schizophrenia are less violent, but are more likely to be victimized.” The big, violent folks, added Saks, tend to be teenage males and substance abusers.
There’s also a misconception that all people with schizophrenia can’t hold down a job, and that they lose the ability to work in any kind of meaningful way. Or that they can’t live independently, that they need some kind of supervised living arrangement.
Like many other psychological disorders, schizophrenia follows along a spectrum in terms of its severity. While many people can become incapacitated by their symptoms, Saks argues that most of them could benefit from drugs and therapy.
And indeed, Saks is convinced that there are more “high functioning” people with schizophrenia than is typically assumed. To that end, she, along with her colleagues at UCLA and USC, designed a study to recruit high functioning people with schizophrenia in the LA area. Specifically, they were looking to study professionals, a group that included MDs, PhD candidates, teachers, CEOs, and full-time students.
“I mean, we got 20 subjects fairly quickly,” she told me, “I started to suspect that I wasn’t unique, that there were many other people like me. It would interesting to know what the stats are on how many people with schizophrenia are so-called “high functioning” professionals.”
Moreover, Saks is convinced that, with proper resources, nearly everyone can live up to their potential — regardless of their situation or status.
“There are going to be some people who you do everything for and they still won’t be able to thrive,” she says, “But I think many more people can do better than we give them credit for — but instead, we prematurely tell people to lower their expectations.”
Indeed, antipsychotic medications have revolutionized the treatment of schizophrenia — and they work startling well. “A lot of people get on medication and they completely recover and never require therapy,” says Saks. But there are some people who don’t respond to medication — and that, she argues, is where therapy and social support could potentially help.
“The best evidence with major mental illness shows that the most effective strategy is to use a combination of meds and a therapy for choice,” says Saks. “For me, I know I need the therapy and the medication. I need both of them. If one of them were to go away I would probably be really compensated.”
Saks is currently in psychoanalytic treatment, where she attends sessions five days a week. And by doing so, she’s going against the grain; conventional wisdom says psychoanalytic treatment shouldn’t work for people with psychosis. But she’s convinced it’s helping.
Saks told me about several aspects of psychoanalytic treatment that have been tremendously beneficial for her — and they’re not typical things that psychoanalysts do.
For example, because stress is particularly bad for psychiatric illnesses, Saks has been taught to identify her stressors and avoid them. Or cope with them at the very least. She has also learned to bolster her “observing ego” — that part of her brain which allows her to step back and observe her mind, feelings, and thoughts in order to understand them and not get swept up.
“It’s also a place where you can bring your thoughts,” she says. “A lot of therapists have a rule where their patients cannot articulate their delusions or hallucinations — but to me you need to have a place where you can do that, where it’s safe. It’s sort of like a steam valve. I don’t have to do it in my outside world, I have a place where I can do it in therapy.”
Another important thing, says Saks is insight.
“People have different theories about psychotic symptoms,” she says. “Some people think they’re just the random firing of neurons that don’t have any meaning. But I think they have meaning and that they tell you some truth about your psychological reality. So, when I say I’ve killed hundreds of thousands of people, it’s really an archaic way of saying I feel like a very bad person. But even though it’s meaningful in this sense, it doesn’t help patients in the moment of the psychotic symptoms that they interpret.”
Saks believes that extreme and exaggerated ideations are a defense mechanism — which in some circumstances can make a person feel better or safe.
Saks closed our conversation by noting that, outside of medications and drugs, it’s people who can make the greatest impact.
“It’s so important to have a benign, smart, caring, non-judgmental person that accepts you — not only for the good — but for also the bad and the ugly,” she said, “That is incredibly empowering.”
By Bruce E Levine, Truthout
Starting with results of the Nazi elimination of diagnosed schizophrenics, Levine re-examines the evidence for the heritability of mental illness and offers some suggestions about Western civilization and our shared humanity.
If a nation murdered and sterilized an estimated 73 percent to 100 percent of its diagnosed schizophrenics, yet a generation later that nation had a higher rate of incidence of new cases of schizophrenia than did surrounding nations, shouldn’t we have questions about the claim by the mental health establishment that schizophrenia is highly heritable?
Moreover, since people diagnosed with schizophrenia and other “seriously disabling mental disorders,” like bipolar and major depression, have markedly lower reproductive rates compared with the general population, but the prevalence of these disorders throughout the industrialized world has increased, shouldn’t we also be asking questions about heritability?
When we begin to question, we discover that (1) scientifically flawed research has been used to promote ideas around mental illness and its heritability, and (2) instead of focusing on nature vs. nurture causes of mental illness, it’s time to consider whether certain phenomena are really symptoms of pathology, or instead are inextricable aspects of our humanity.
However, with the pharmaceutical industry’s antipsychotic drug bonanza now more than $18 billion annually in the US (orchestrated primarily by increasingly pathologizing behaviors), and with financial dependency on pharmaceutical companies by the psychiatric establishment, including by the American Psychiatric Association (publishers of the Diagnostic and Statistical Manual of Mental Disorders (DSM), the psychiatric diagnostic bible), it is increasingly unlikely that truths about normality, pathology and heritability will get out to the general public.
Schizophrenia and Western Civilization
What causes schizophrenia? The surprising answer that biological psychiatrist E. Fuller Torrey argues for in his book Schizophrenia and Civilization is Western civilization. Torrey concludes, “Between 1828 and 1960, almost all observers who looked for psychosis or schizophrenia in technologically undeveloped areas of the world agreed that it was uncommon.” Torrey writes, “There was a steady stream of studies from African countries noting the relative infrequency of schizophrenia,” and he offers other evidence for his thesis from the South Pacific, Tibet, Australian aborigines, and indigenous peoples in Brazil. And Torrey’s own 1973 New Guinea study shows contact with Western civilization is highly correlated with schizophrenia.
For the biological psychiatrist Torrey, what’s problematic about Western civilization is something biological. He writes, “Viruses in particular should be suspect as possible agents.”
However, what appears to be most problematic about Western civilization - in contrast to many societies with little or no schizophrenia - is Western civilization’s discomfort around people who display certain behaviors outside of ordinary experience. This discomfort results in objectification, coercion and other forms of violence - emotional and physical.
The behaviors that characterize people diagnosed with schizophrenia (delusions, hallucinations and disorganized speech) are certainly outside most people’s ordinary experience. And in Western civilization, unlike other civilizations with little or no schizophrenia, there is a strong tendency to label behaviors outside ordinary experience as pathological and to attempt to forcibly control these behaviors. That’s why homosexuality was an official American Psychiatric Association mental illness until the 1970s for which “treatments” were administered - this before psychiatry and society began to become more comfortable with homosexuality.
Does Hearing Voices Make One Mentally Ill?
Psychiatrist Dan Fisher, director of the National Empowerment Center, was diagnosed with schizophrenia and hospitalized on three occasions, but has long recovered primarily with peer support, and he today rejects the term schizophrenia in favor of the non-disease term “lived experience.” Dutch psychiatrist Marius Romme also believes that schizophrenia is a harmful concept, and that hearing voices and other so-called “symptoms” of schizophrenia are not evidence of an illness.
In 2011, Behavioral Healthcare (“So, What’s Wrong with Hearing Voices?”) described the work of a growing international organization, the Hearing Voices Network (HVN), developed around work by Marius Romme and voice hearer Patsy Hage. HVN has grown to encompass hundreds of chapters worldwide. The group’s mission is to nonjudgmentally gather and share information among those who hear voices or experience other extreme phenomena.
Two “voice hearers” who had been previously diagnosed with serious mental illness (and who also prefer the term “lived experience”) are Daniel Hazen, now executive director of Voices of the Heart, Inc. and Oryx Cohen, now the Technical Assistance Director for the National Empowerment Center. Both Hazen and Cohen believe what was helpful for them was to “de-pathologize” experiences like hearing voices (see Cohen and other voice hearers talk about their experiences in trailer for the movie Healing Voices).
Cohen notes that phenomena psychiatry proclaims as symptoms of psychosis are actually reported by 1 in 10 people at some point in their lives, making an individual’s likelihood of experiencing them “about as common as being left-handed.” Cohen adds that it is not uncommon for people after the death of a loved one to hear that voice again, and adds that for many of these hearers, “that voice is experienced as a very reassuring thing.” However, vulnerable people who experience such phenomena can become dangers to themselves and create havoc for others when they have become terrified. And being told that such phenomena are evidence of a disease can be extremely frightening. But bolstered by security and support from other voice hearers, Cohen says, “The hearer can come to the conclusion that he or she does not have to listen to the voice.”
Learning to live with voices, but not being enslaved by them, is actually the strategy used by Nobel Prize-winning mathematician John Nash that helped him to return to functioning after being diagnosed with schizophrenia for many years. Nash, made famous by the film A Beautiful Mind, is glad the movie gave families of those diagnosed with schizophrenia hope of recovery; but he is troubled by many inaccuracies in the movie, including its claim that medication was important to his recovery, when in fact he rejected medication.
If we accept that hearing voices is not evidence of illness, but actually within the normal range of human experience, then, just as in the case of homosexuality, depression and life-sacrificing altruism, neither genocide nor lower reproductive rates will affect its prevalence.
In other words, if phenomena are inextricably part of our humanity, to eliminate such phenomena, all human beings must be eliminated.
By Elyn R. Saks, law professor at the University of Southern California and the author of the memoir “The Center Cannot Hold: My Journey Through Madness.”
Thirty years ago, I was given a diagnosis of schizophrenia. My prognosis was “grave”: I would never live independently, hold a job, find a loving partner, get married. My home would be a board-and-care facility, my days spent watching TV in a day room with other people debilitated by mental illness. I would work at menial jobs when my symptoms were quiet. Following my last psychiatric hospitalization at the age of 28, I was encouraged by a doctor to work as a cashier making change. If I could handle that, I was told, we would reassess my ability to hold a more demanding position, perhaps even something full-time.
Then I made a decision. I would write the narrative of my life. Today I am a chaired professor at the University of Southern California Gould School of Law. I have an adjunct appointment in the department of psychiatry at the medical school of the University of California, San Diego, and am on the faculty of the New Center for Psychoanalysis. The MacArthur Foundation gave me a genius grant.
Although I fought my diagnosis for many years, I came to accept that I have schizophrenia and will be in treatment the rest of my life. Indeed, excellent psychoanalytic treatment and medication have been critical to my success. What I refused to accept was my prognosis.
Conventional psychiatric thinking and its diagnostic categories say that people like me don’t exist. Either I don’t have schizophrenia (please tell that to the delusions crowding my mind), or I couldn’t have accomplished what I have (please tell that to U.S.C.’s committee on faculty affairs). But I do, and I have. And I have undertaken research with colleagues at U.S.C. and U.C.L.A. to show that I am not alone. There are others with schizophrenia and such active symptoms as delusions and hallucinations who have significant academic and professional achievements.
Over the last few years, my colleagues, including Stephen Marder, Alison Hamilton and Amy Cohen, and I have gathered 20 research subjects with high-functioning schizophrenia in Los Angeles. They suffered from symptoms like mild delusions or hallucinatory behavior. Their average age was 40. Half were male, half female, and more than half were minorities. All had high school diplomas, and a majority either had or were working toward college or graduate degrees. They were graduate students, managers, technicians and professionals, including a doctor, lawyer, psychologist and chief executive of a nonprofit group.
At the same time, most were unmarried and childless, which is consistent with their diagnoses. (My colleagues and I intend to do another study on people with schizophrenia who are high-functioning in terms of their relationships. Marrying in my mid-40s — the best thing that ever happened to me — was against all odds, following almost 18 years of not dating.) More than three-quarters had been hospitalized between two and five times because of their illness, while three had never been admitted.
How had these people with schizophrenia managed to succeed in their studies and at such high-level jobs? We learned that, in addition to medication and therapy, all the participants had developed techniques to keep their schizophrenia at bay. For some, these techniques were cognitive. An educator with a master’s degree said he had learned to face his hallucinations and ask, “What’s the evidence for that? Or is it just a perception problem?” Another participant said, “I hear derogatory voices all the time. … You just gotta blow them off.”
Part of vigilance about symptoms was “identifying triggers” to “prevent a fuller blown experience of symptoms,” said a participant who works as a coordinator at a nonprofit group. For instance, if being with people in close quarters for too long can set off symptoms, build in some alone time when you travel with friends.
Other techniques that our participants cited included controlling sensory inputs. For some, this meant keeping their living space simple (bare walls, no TV, only quiet music), while for others, it meant distracting music. “I’ll listen to loud music if I don’t want to hear things,” said a participant who is a certified nurse’s assistant. Still others mentioned exercise, a healthy diet, avoiding alcohol and getting enough sleep. A belief in God and prayer also played a role for some.
One of the most frequently mentioned techniques that helped our research participants manage their symptoms was work. “Work has been an important part of who I am,” said an educator in our group. “When you become useful to an organization and feel respected in that organization, there’s a certain value in belonging there.” This person works on the weekends too because of “the distraction factor.” In other words, by engaging in work, the crazy stuff often recedes to the sidelines.
Personally, I reach out to my doctors, friends and family whenever I start slipping, and I get great support from them. I eat comfort food (for me, cereal) and listen to quiet music. I minimize all stimulation. Usually these techniques, combined with more medication and therapy, will make the symptoms pass. But the work piece — using my mind — is my best defense. It keeps me focused, it keeps the demons at bay. My mind, I have come to say, is both my worst enemy and my best friend.
That is why it is so distressing when doctors tell their patients not to expect or pursue fulfilling careers. Far too often, the conventional psychiatric approach to mental illness is to see clusters of symptoms that characterize people. Accordingly, many psychiatrists hold the view that treating symptoms with medication is treating mental illness. But this fails to take into account individuals’ strengths and capabilities, leading mental health professionals to underestimate what their patients can hope to achieve in the world.
It’s not just schizophrenia: earlier this month, The Journal of Child Psychology and Psychiatry posted a study showing that a small group of people who were given diagnoses of autism, a developmental disorder, later stopped exhibiting symptoms. They seemed to have recovered — though after years of behavioral therapy and treatment. A recent New York Times Magazine article described a new company that hires high-functioning adults with autism, taking advantage of their unusual memory skills and attention to detail.
I don’t want to sound like a Pollyanna about schizophrenia; mental illness imposes real limitations, and it’s important not to romanticize it. We can’t all be Nobel laureates like John Nash of the movie “A Beautiful Mind.” But the seeds of creative thinking may sometimes be found in mental illness, and people underestimate the power of the human brain to adapt and to create.
An approach that looks for individual strengths, in addition to considering symptoms, could help dispel the pessimism surrounding mental illness. Finding “the wellness within the illness,” as one person with schizophrenia said, should be a therapeutic goal. Doctors should urge their patients to develop relationships and engage in meaningful work. They should encourage patients to find their own repertory of techniques to manage their symptoms and aim for a quality of life as they define it. And they should provide patients with the resources — therapy, medication and support — to make these things happen.
“Every person has a unique gift or unique self to bring to the world,” said one of our study’s participants. She expressed the reality that those of us who have schizophrenia and other mental illnemesses want what everyone wants: in the words of Sigmund Freud, to work and to love.
[Excerpt] In older adults, antipsychotic drugs are commonly prescribed off-label for a number of disorders outside of their Food and Drug Administration (FDA)-approved indications - schizophrenia and bipolar disorder. The largest number of antipsychotic prescriptions in older adults is for behavioral disturbances associated with dementia, some of which carry FDA warnings on prescription information for these drugs.
In a new study - led by researchers at the University of California, San Diego School of Medicine, Stanford University and the University of Iowa, and funded by the National Institute of Mental Health - four of the antipsychotics most commonly prescribed off label for use in patients over 40 were found to lack both safety and effectiveness. The results were published in The Journal of Clinical Psychiatry.
The study looked at four atypical antipsychotics (AAPs) - aripiprazole (Abilify), olanzapine (Zyprexa), quetiapine (Seroquel), and risperidone (Risperdal) - in 332 patients over the age of 40 diagnosed with psychosis associated with schizophrenia, mood disorders, PTSD, or dementia.
“Our study suggests that off-label use of these drugs in older people should be short-term, and undertaken with caution,” said Dilip V. Jeste, MD, Estelle and Edgar Levi Chair in Aging, Distinguished Professor of Psychiatry and Neurosciences, and director of the Stein Institute for Research on Aging at UC San Diego.
Results of the five-year study led by Jeste, who is also current president of the American Psychiatric Association (which was not involved in this research), showed that within one year of treatment, one-third of the patients enrolled in the study developed metabolic syndrome (medical disorders that can increase the risk of cardiovascular disease or diabetes). Within two years, nearly a quarter of the patients developed serious adverse effects and just over half developed non-serious adverse effects.
Because of a notably high incidence of serious adverse events, quetiapine had to be discontinued midway through the trial. The researchers found that there were significant differences among patients willing to be randomized to different AAPs - thus, treating clinicians tended to exclude olanzapine and prefer aripiprazole as one of the possible choices in patients with existing metabolic problems. Yet, the different AAP groups did not appreciably differ in most outcome measures.
“When these medications are used off-label, they should be given in low dosages and for short durations, and their side effects monitored closely,” said Jeste. “Clearly, there is also a critical need to develop and test new interventions that are safe and effective in older people with psychotic disorders.”
The list links out to comprehensive neuroscience-focused definitions, treatment options, research endeavors, organizations, and more.
[Article of Interest] Mind-Pops More Likely With Schizophrenia
By Ia Elua, Keith R. Laws, Lia Kvavilashvili
Excerpt: Mind-pops are those little thoughts, words, images or tunes that suddenly pop into your mind at unexpected times and are totally unrelated to your current activity. These involuntary ‘mind-pops’ have become a topic of scientific study only recently even though they were described long ago by novelists such as Vladamir Nabokov.
Almost everyone reports experiencing mind-pops at some time or another, but some experience them more than others according to research conducted by the University of Hertfordshire. In the paper to be published in Psychiatry Research, findings suggest that mind-pop experiences are related to hallucinations in those people suffering from schizophrenia.
[This study] found that all 100% schizophrenia patients reported experiencing mind-pops, compared to 81% of the depressed patients and 86% of the mentally healthy individuals. In addition, schizophrenia patients experienced mind-pops significantly more frequently than depressed patients and mentally healthy people. Professor Laws added: “Mind-pops were more common both in patients who had experienced hallucinations in the past and in those who were currently experiencing hallucinations.”
[Documentary of Interest] Crazy Art
Synopsis: The documentary explores how art can be used by someone experiencing psychotic, depressive and manic symptoms to reduce and manage those symptoms. It also explores how, in the history of art, as with van Gogh, creativity can reach brilliant heights when psychiatric symptoms are peaking, and how that same creativity, when intensified, can itself increase madness..
The role of art as a form of distraction or meditation to tame the savagery of mental illness is discussed by the three featured artists. The “identity journey” — from madman to Artist— forms a focus in seeing how recovery can be constructed bit by bit.