On Monday, I had lunch with an old friend. It all started because of last week's newsmaking announcement about so-called new findings about the genetics of schizophrenia.
I sent my friend a piece in The New York Times by Nicholas Wade which seemed to me to put a sober perspective on all the hoopla that followed. Well worth reading. Rather than a major breakthrough – for nothing would delight psychiatric researchers more than finding a cause for a varied group of disorders described as schizophrenia – what was reported was a big deal about information that's been known for years. At best, a tiny little piece of the puzzle was confirmed by three new studies.
The mysterious causes of schizophrenia are linked to thousands of genes, not just a few. There's lots of work still to be done.
It was this study that reconnected me to my friend. He often remarks that the word "schizophrenia" really describes psychosis – or, to be more precise, a number of different psychosis with several widely varying classes of symptoms.
At 89 and utterly brilliant, he and I met while I was writing for The Toronto Sun on one of my extended forays into psychiatric research and we remain buddies, although I do not see him often enough.
Yesterday, we wandered along College Street until we could locate a Japanese restaurant to our mutual liking and had an enlightening and, as always, fascinating chat.
He is a rare bird in the realm of psychiatry. One of the only people I know who launched his career as a psychiatric social worker in 1948 – the year I was born – after graduating from the London School of Economics in Psychiatric Social Work and studying clinical psychiatry with William Mayer-Gross at the Crichton Royal Hospital in Dumfries, Scotland. Dr. Mayer-Gross authored a seminal text called Clinical Psychiatry published in 1954, before the advent of the earliest antipsychotic medications.
After finishing his training with Dr. Mayer-Gross at the Crichton Royal Hospital, my friend moved to Canada to become director of social work at the former Whitby Psychiatric Hospital. Then he was named advisor in social work in the mental health branch of the Toronto Department of Health before taking the post of Associate Director of Psychiatry at the Toronto Psychiatric Hospital, which became the Clarke Institute of Psychiatry in 1964 and part of the Centre for Addiction and Mental Health (CAMH) in 1998. He finished his career at McMaster University as a research scientist, Professor of Social Work and Associate Professor of Psychiatry before retiring in 1990.
His professional career in psychiatry spans 42 years from the pre-Chlorpromazine Age to the age of the atypical antipsychotics. He is one of the most knowledgeable and reasoned professionals I have ever known and this week, schizophrenia was on our minds.
My very first psychiatric diagnosis was schizophrenia. A rather dotty and dusty old-maid psychiatrist named Margaret McQuaid gave me that diagnosis back in 1960 when I was barely into my teens. I didn't know it then, but ah, those labels. How they stick!
About six years later, I found out about it in a brutal way. Another mad shrink at The Clarke Institute of Psychiatry – I cannot name him as he's still kicking around – decided he had cured me, so one day, he put me in a glassed-in cubicle on the eighth floor and handed me my chart to read.
There, in correspondence and other documentation, I discovered I had schizophrenia and then, a few years later, the word "catatonic" was added. Scary words for an 18-year-old to absorb. I remember riding home on the subway shuddering. I ran up to my room where my 1966 edition of the Random House Dictionary of the English Language sat above my desk and looked those two words up.
• "Schizophrenia – a psychosis marked by withdrawn, bizarre and somewhat delusional behaviour and by intellectual and emotional deterioration. Also called dementia praecox, which means premature dementia."
• "Catatonia – a syndrome seen most frequently in schizophrenia, with muscular rigidity and mental stupor."
I didn't recognize myself remotely. Why were these words applied to me, I remember wondering. Can you understand why I detest these psychiatric labels and why language is so important to me? Yet, for the next seven years, through Seneca College and Queen's University, in the back of my mind, that diagnosis was there, though never in my entire life have I ever been "withdrawn."
In 1975, that diagnosis was changed to manic depression.
"You know, this is the 100th anniversary of the word schizophrenia," my friend announced as we perused the $5.99 specials. His first statement has been well documented. According to an article in the American Journal of Psychiatry Paul Eugen Bleuler and the Birth of Schizophrenia, on April 24, 1908, Swiss psychiatrist Bleuler first coined the term "schizophrenia" at a meeting of the German Psychiatric Association in Berlin – as opposed to the earlier label, dementia praecox.
Without recounting all this history of labels, let's just say that the term schizophrenia simplified what had been a grab-bag of other labels. Too bad. I've always thought that huge catch-all categories are more dehumanizing than specific ones.
According to former Boston Globe investigative reporter Robert Whitaker, in his book Mad in America – Bad Science, Bad Medicine, and the Enduring Mistreatment of the Mentally Ill, "Throughout the nineteenth century, physicians had conjured up a wild profusion of insanity types. Medical texts told of such ailments as "old maid's insanity," "erotomania," "masturbatory psychosis," "pauperism insanity," and "chronic delusional disorder."
Whitaker adds, "There was no rhyme or reason for these terms, and they provided little insight into what the future held for the patient." German psychiatrist Emil Kraepelin classified them into two streams – manic depression for those with psychosis and emotional disturbances, and dementia praecox for those with lack of emotion. The second group were given a less hopeful prognosis.
In 1908, Eugen Bleuler came up with the term "schizophrenia" which he viewed as a milder form of dementia praecox, according to my friend.
Bleuler wrote a paper about his new term "schizophrenia" in 1911, so my friend considers 1909 – a point in between – as the true birth of the schizophrenia.
Still, not much is really known about its causes today – probably because there are so many. I seriously doubt any one cause will ever be discovered.
My friend announced that back in the 1940s and 1950s, close to 50% of patients who were diagnosed with schizophrenia went into spontaneous remission – complete recovery – with humane care and no medication. There were no antipsychotics back then.
"The prospects of lasting spontaneous remission are greatest during the first two years of illness," my friend quoted in an email from page 267 of Clinical Psychiatry (Cassell, London, 1954), co-authored by Wilhelm Mayer-Gross, Slater and Roth. "After five years of continuous illness they become negligible. If a series of patients whose illness have lasted a year are followed up, about half are found eventually to remit; if the illness lasts two years, the proportion is still about 45%. Thereafter it quickly declines."
My friend notes that with "effective community support, many former patients with longstanding schizophrenia were able to live satisfactory lives without or later with medication."
Having a diagnosis of schizophrenia is not an easy one to live with and today, what we know about psychosis, no matter what you call it, is that early intervention is the key – especially for young people.
This also explains why so many leaders in the modern recovery movement – psychologist Patricia Deegan, Dr. Daniel Fisher and British psychologist Rufus May are three examples of countless people who have fully recovered from serious cases of schizophrenia and now live meaningful lives without medication. Others have succeeded brilliantly with psychoanalysis and medication, like law professor Elyn R. Saks, PhD.
The question is, what about the other 50% who don't spontaneously remit? Why? And what about the standard contemporary biomedical approach that involves prescriptions of newer, very powerful atypical antipsychotics? Do they promote spontaneous and permanent remission? Or are they harmful?
A great deal in psychiatry has changed in the last 40 or 50 years, but not a great deal more is known about the causes of schizophrenia. Genetic testing and brain imaging will be studied in about 100 people with schizophrenia, bipolar disorders and depression at CAMH, the first hospital in the world to explore these newer avenues of therapy.
We should be able to use all possible tools available for recovery. And recovery should be the goal. Not a belief that this condition is chronic.
The word "schizophrenia" carries enormous baggage. The media hasn't helped. But, I think it's interesting to learn from the past. If many people diagnosed with schizophrenia, experiencing abnormalities in perception, hallucinations, delusions and disorganized thinking have fully recovered with humane support and care – that, to me is a reason for hope. And an approach to be seriously considered. Not isolation, hospitalization, drugging and other inhumane treatments. Instead, inclusion, respect, education, accommodation, empowerment and nurturing. Give people a chance!
Schizophrenia is probably not chronic brain disease, as so many people would have you believe. It involves the mind and the soul, the whole of a human being. There is no scientific proof that it's a disease of the brain.
Trauma can play a part in the development of the symptoms that suggest a diagnosis of schizophrenia, as can genetics, intrauterine factors, early childhood environment, psychology, neurobiology, social and cultural influences – even drug abuse.
Until we have more information, the jury is out and anything is possible, including recovery! It's time to rethink our knee-jerk reactions to this condition. See it not just a medical context but in an historical context. In a post-psychiatric context, too, and in the context of the recovery movement.
Madness, a word I prefer to all the others, has many meanings. Love. Anger. Insanity.
Let's open our minds to all them.