Even though Schizophrenia Awareness Day is limited to May 24th, Canadians are exposed to education about schizophrenia all year long. Every time they read a gruesome news article about it, or have a difficult encounter with someone with an untreated psychosis, they receive confusing knowledge. It creates the kind of image of severe mental illnesses that crusaders against stigma would like them to forget.
In the absence of any kind of national public education campaign about psychotic disorders, and the sensible mental health policies that are needed to treat them, this grim form of education will continue. Concerned citizens can quickly cover the basics about schizophrenia by visiting the website of the U.S. National Institute of Mental Health.
Education about psychotic disorders, which afflict three per cent of the population, would certainly help the many families who are thrown into upheaval every year when their children begin to experience bizarre symptoms. This education could decrease the dangerous delays that often hinder people from connecting to the early psychosis intervention programs that exist in some parts of the country.
Also valuable would be detailed first hand accounts of what it's like to live with schizophrenia. Until recently, these accounts have been hard to find in Canada. Now two Vancouver writers have written memoirs that let people intimately experience this agonizing brain disorder.
Sandra Yuen MacKay was one of the first people in Vancouver to share her personal story with schizophrenia over 10 years ago. Through the B.C. Schizophrenia Society's partnership education program, she has spoken to numerous groups of students. Vancouver Coastal Mental Health Services regularly employs her to sensitize new staff to the hard reality experienced by their clients. Her memoir, released last year, however, provides a much fuller picture of how a well-loved teenage girl can slip into psychotic chaos. Her book, My Schizophrenic Life, The Road to Recovery from Mental Illness, helps us understand why it can take years and multiple hospitalizations for someone to finally accept that she needs anti-psychotic medication to achieve stability.
Erin Hawkes, in her newly released memoir, When Quietness Came: A Neuroscientist's Journey Through Schizophrenia, also reveals the many years it took her to accept her need for medication. Her journey was made more difficult by the shifting array of psychiatrists who, with limited knowledge of Erin's history, kept changing her medication.
Following a psychiatrist's poor decision to lower her dose of her anti-psychotics, Erin reports that her returning voices tell her, "Pills, let them go....You are Ours...Quit them." Without medication, Erin returns to a delusional world where rats gnaw at her brain, and people on the streets appear to be decapitated or as ghostly versions of themselves.
Both Sandra and Erin, despite their long, harrowing ordeals and their ongoing challenges, are very fortunate. Daughters of the Canadian middle class, they are blessed with keen intelligence and many talents. Both graduated from university after the onset of their illnesses. However, even with these privileged backgrounds, their accounts of the treatment they have received, both in hospital and in community care, overflow with examples of mistreatment.
It's a credit to the strong foundation and ongoing support provided by their families, and the stalwart partners who entered their lives that Sandra and Erin have survived their ordeals. These, and other families like them, confront many obstacles in the mental health system when they try to be involved in caring for their ill relatives.
Also crucial to Sandra and Erin's recovery is the B.C. Mental Health Act which allowed them to receive the treatment that they sometimes didn't understand they needed. This act is under siege by groups, often funded at taxpayers' expense, that see involuntary treatment as a human rights violation. In Canada, unlike the U.S., people with illnesses who want to be treated in the event of future relapses are not represented by any groups.
These fascinating memoirs offer the public a chance to immerse themselves in the gruelling journey that many people with schizophrenia have travelled. Equally important, the stories show that people with schizophrenia really can build productive, meaningful lives. Both women work part time at jobs they like, and have enjoyed years of stability.
Until the public develops a basic understanding of psychotic disorders informed by current neuroscience, they won't insist that the mental health system develop appropriate policies and resources. These two memoirs, richly informative as they are, will have a hard time representing schizophrenia in the public mind. They have to keep competing with the stories of untreated psychotic illnesses.
Dr. Williams has personal experience struggling with his own psychosis, which has led him to some very different ideas about how best to treat it. Different from Susan Inman's ideas, that is.
In 1967 he was invited to Johns Hopkins University as a clinical and research fellow and to the research unit of Spring Grove State Hospital in Baltimore, Maryland, where he continued his psychedelic research. In 1969 he was offered the position of chief of psychiatric research at the Maryland Psychiatric Research Center and of assistant professor of psychology at Henry Phipps Clinic. The research team he headed systematically explored the value of psychedelic therapy in neurotics, alcoholics, drug addicts, and terminal cancer patients.
He has published more than ninety papers in professional journals and is the author of Realms of the Human Unconscious, The Human Encounter with Death, LSD Psychotherapy, Beyond the Brain, and The Adventure of Self-Discovery. He was also editor of the volumes Ancient Wisdom and Modern Science and Human Survival and Consciousness Evolution.
http://www.amazon.com/Surviving-Schizophrenia-A-Memoir-ebook/dp/B0057P6M46
I favor a holistic approach, which means not putting all one's eggs in psychiatry's basket. I have found many approaches that have moved my son forward - music therapy being one, Family Constellation Therapy another, and lots more. The one approach that I am highly skeptical of and that did not produce results, is the medication at all costs approach. The Treatment Advocacy Center (TAC) funded by the Stanley Medical Research Institute and spearheaded by Dr. E. Fuller Torrey whose research is cited in the link you provided, has an agenda (like all organizations do). Its agenda is to advocate for forced treatment of people who don't want to be treated. Of course, he calls it “agnosognosia” which is a fancy way of saying that the patient won’t do what the doctor deems is in his best interests. In order to advocate, Torrey has to produce "scientific" evidence of brain disease. About half the population is enthralled with neuroscience and thinks that the pretty images that MRI scans produce actually mean something. Torrey will happily satisfy the public’s thirst for interesting pictures in order to advocate for his pet project - forced treatment. I am only guessing that his research into untreated brains is fairly recent and is an attempt to respond to the critics that the research has been largely conducted on medicated brains. I guess you can surmise that I don’t trust Torrey’s motives. I'm posting a brain scan warning from The Guardian in a second comment.
In response to questions: I have no connections to the pharmaceutical industry.
Here are my relevant beliefs:
I believe that Big Pharma engages in many dangerous practices. These include efforts to medicalize normal human conditions and treat them with medications. I oppose the growing number of diagnostic categories. I don’t believe that 1 in 5 people have a diagnosable mental illness.
I do believe that 3 % of the population live with psychotic disorders and most of these people need to use medications, imperfect as they are, in order to rebuild their lives. Once people aren’t psychotic, they can participate in useful psychosocial rehabilitation activities.
I believe that involuntary treatment of psychotic people is sometimes necessary if we don’t want to let people deteriorate in untreated psychosis.
Some commenters say that there’s no evidence that there are brain differences in people with schizophrenia. Since over 100 studies exist documenting these, I assume these people must not be looking.
Some people who don’t believe that psychosis exists, point out that science hasn’t pinpointed an area involved in lack of awareness of being psychotic. Now this research has been done in a peer reviewed brain imaging study; this widely published recent French study can be found at
http://www.ncbi.nlm.nih.gov/pubmed/22498076
Susan
The presence of mental illness is still based on the subjective opinion of the examining doctor and voted into the DSM by majority vote. Studies that don’t support pharma’s desired outcomes are suppressed and studies are done almost exclusively on patients who are already taking antipsychotic medication.
In his book Blaming the Brain, Dr. Elliot Valenstein writes: “It is well established that the drugs used to treat a mental disorder, for example, may induce long-lasting biochemical and even structural changes [including in the brain], which in the past were claimed to be the cause of the disorder, but may actually be an effect of the treatment.”
Dr. Nancy Andreasen, reversing her long held position that antipsychotics protect the brain said “The big finding is that people with schizophrenia are losing brain tissue at a more rapid rate than healthy people of comparable age. . Another thing we’ve discovered is that the more drugs you’ve been given, the more brain tissue you lose.” She goes on: “Well, what exactly do these drugs do? They block basal ganglia activity. The prefrontal cortex doesn’t get the input it needs and is being shut down by drugs. That reduces the psychotic symptoms. It also causes the prefrontal cortex to slowly atrophy.”
You may not realize that vast numbers of studies have been done on the brains of people with schizophrenia who are treatment naive, that is, they have never received treatment for their illness. These studies are important because any evidence of brain changes after the use of anti-psychotics could be interpreted as arising from the use of medications.
You can find a bibliography and a discussion about some of these findings in this article:
Schizophrenia Changes Brain Structure: A Review of Studies of Individuals with Schizophrenia Never Treated with Antipsychotic Medications
The article can be seen at:
http://www.mentalillnesspolicy.org/medical/brain-change-schizophrenia.html
We see psychotic disorders very differently. If what I read is accurate and if I remember correctly, you have believed that shamanistic music therapy was the best option and now are thinking that intergenerational family therapy, where people consider the emotional pain of their ancestors, is a viable approach.
I believe that better access to good psychiatric care and the use of anti-psychotic medications to get people out of psychosis provides the foundation for recovery from schizophrenia.
My article, to which you responded, is about the memoirs of two women with schizophrenia whose lives were filled with psychotic chaos until they realized they need anti-psychotic medications. They have each now been very stable and productive for many years.
Susan
By the way, isn't this the same Dr. Andreasen who was awarded a national medal of science, chairs an academic psychiatry department, and was a long-time editor in chief of the American Journal of Psychiatry?
Great work.