Influenced like many of my generation by the writings of Laing, Szasz, Illich, Jung and Freud, I studied medicine to do psychiatry. At the time research was becoming mandatory for anyone hoping to engage with the field. I chose to work on the serotonin system. But this was working on the mind as much as the brain; this was the serotonin system brought into view by LSD rather than the one that Prozac would later usher in. This was biology as a source of variation and individuality rather than standardization. This background made me acutely aware of an emerging biobabble, biomythologies, and the rhetoric in claims made by what later came to be called biological psychiatry.
Where did schizophrenia come from – or is this a stupid question?
I was newly perched at a laboratory bench in 1980, when the controversy blew up about whether schizophrenia increased in frequency in the nineteenth century. Faced with a clear increase in hospitalizations for insanity, Fuller Torrey in 1980 and Edward Hare in 1983 argued that an infectious or other trigger must have been at work. I instinctively took the opposite side – schizophrenia didn’t suddenly appear in the nineteenth century; surely we have always had it. German Berrios’ cautionary note about the changing meaning of mania rang true and I’ve spent a great deal of my career since dealing with the shifting meanings of terms like neurosis, psychosis, depression and mania (See Mania).
I have spent even more time supporting an argument put forward by Andrew Scull in 1984 in response to Torrey and Hare to account for the increase in hospitalizations, namely that health systems attend to our ailments to secure their own health.
But even the biological psychiatrists who displaced social psychiatry in the 1980s were inclined to see schizophrenia as emblematic of the human condition rather than a disease that might rise and fall. Tim Crowe argued the genes responsible for language gave rise to schizophrenia. Geneticists and neuroscientists have not been inclined to think schizophrenia could have recently appeared and might as soon disappear.
But for doctors and historians the rise and fall of diseases is almost central to the definition of a disease – or should be. When it comes to mental illnesses the rules seem to change.
An English experiment on the Irish
In the 1980s, prior to working on the history of psychopharmacology, I looked at annual reports from the superintendents of Irish asylums who, facing a tide of insanity that rose higher in Ireland than anywhere else in the world, for the most part dismissed claims that there was a real increase in insanity. Asylums were an experiment invented by the English. They thought it a prudent idea to try it out on the Irish first, and built the first asylums in Ireland and more there than anywhere else. Never a people to miss a chance, the Irish at least in part took to wintering in facilities put in place by the British. This all made sense to me. There had to be a mundane explanation like this to account for the fact that in the face of the highest rates of incarceration ever recorded, mental illness never featured in Irish literature, one of the richest in the world. Against this background it was clear there was no true increase in insanity or no way to tell if there was a true increase or not.
The madness of North Wales
In 1996 in North Wales we began working on a project that has turned all my ideas upside down. This research led to a series of articles demonstrating a disappearance of classic postpartum psychosis, showing that severe social dislocation can trigger schizophrenia like psychoses that in general have a very good outcome, that hospitalizations for severe mood disorders (melancholia) are declining in frequency and then the findings for schizophrenia. We hope to feature the research on a forthcoming website – The Madness of North Wales – along hundreds of records, music, literature, art and other material aimed at making North Wales live and allowing us to outline a series of dramatic and universal accounts of madness in all its varieties through some intensely dramatic personal and local stories. (See The North Wales Mental Health Research Project).
Get your hands off schizophrenia – it’s mine
All was going well with our research and publications, until we attempted to publish papers on schizophrenia. Over the same two decades I have published articles on the hazards of psychotropics drugs, with journals scared to publish for legal reasons, and companies possibly finding other ways to sabotage publication, but I have never had reviews as vituperative as some of the reviews for these schizophrenia articles.
The first of two papers offer the best figures yet on the issue of whether schizophrenia did in fact rise in frequency during the nineteenth century or not. The message in the paper is very much a good news message – as I will lay out in the next post – but one of the reviewers, a medical historian, was adamant that nothing we could do would permit him to recommend publication. The paper would have been rejected had the editor not suggested disregarding this review – something that no editor had ever done for an article of mine before.
We sent a second paper to another of medicine’s most prestigious journals which usually has an open review system but in this case the reviewers chose to remain anonymous. One of the reviewers argued that because some black males were incarcerated in US hospitals in the 1960s, we could never be sure any historical diagnoses from case records were correct. This might sound reasonable but was in fact lunatic in that we were not relying on the diagnoses in the records to make our diagnoses as the paper made clear. But the editor sided with the reviewers.
The question is whether the reviewers and editor were exceedingly twitched because of the paper’s findings which make it clear that compared to any other medical disease, uniquely patients with schizophrenia in many ways fare far worse now than a century ago. Faced with an absence of suicide in schizophrenia a century ago, an absence we can be very confident about, one reviewer suggested that this could have only come about because patients were permanently strait-jacketed and secluded. This self-evidently was not the case – the patients demonstrably spent 99% of their time on hospital farms or in sewing rooms or kitchens. But this cut no ice with editors or reviewers.
Why these findings count
Such has been the resistance to the findings that like them or not, it would seem that the responses to the findings must be telling us something important. There is resistance to any undermining of the idea of progress. There is a fundamental disagreement about the nature of disease and in particular mental disease. When many hear the message that schizophrenia is rapidly declining in frequency it seems they in fact hear that insanity is vanishing. It is as though the message that tuberculosis is declining in frequency were heard as respiratory disorders are vanishing, when the only way respiratory disorders will ever vanish is if we no longer have respiratory systems. Even though schizophrenia may have risen and might now be falling, as long as we have brains we are almost certain to create new and perhaps equally as bad mental diseases in the future.
The rise and fall of schizophrenia that will be outlined in the next post may give some clues as to how we produce insanities – and some of the steps we can take to prevent them. As long as we refuse to concede a disorder like this might rise and fall in frequency, we are never going to look for the things we could change that might make a difference. This is why the issue counts.
David, I mention this because it is beyond western social parameters, but I noted a similarity between circumstances of people who sustained schizophrenia. One was a Sydney girl who was a 1970s nurse when abortion became a ward issue; she had parents who were strict Catholics, and a husband who treated her badly. He was also unfaithful. Another was a traditional Aboriginal man, who was a political representative (National Aboriginal Consultative Committee), and was caught between ancient traditional religion, and evangelical Christianity. he suspected his wife was unfaithful. A third was an urban part Aboriginal man, who was fixated by the music of one rock musicion, to the exclusion of all others, was in love with a white nurse (reciprocated for a long time), and lived the bridge between his white father and traditional Aboriginal mother. There were many other examples but you see the pattern… each victim was torn in three opposite socio/emotional directions; and each victim suffered the emotional trauma of loss of the focus of their sexual love. My point is that, in our society of the past half century, ALL traditional value systems are under sustained attack or stress, denying the victim reality bedrock upon which to anchor. Unsurprisingly, they become adrift in a sea of emotional-psychological terror which pervades all perceptions. I think disparate factors colour their behaviour. Add to this random factors such as vaccine adjuvants, food preservatives and colours, pharmaceuticals, interic systems toxins due to counter-bacterial colonisations enabled by antibiotics, and whatever; and we have mental illness. In other words, I am suggesting a broad and constantly changing cocktail of toxins which vary with fashionable usage, and current scientific arrogance. Reinforcing my opinion is the emerging similar pattern of multiple causal factors incidence of autism on one hand, and cot deaths on the other.
This posting makes me immediately aware of the profound difference between incidence/prevalence of a disease and the incidence/prevalence of its diagnosis. It is analogous to the increasingly stated “fact” that “dementia” is increasing exponentially throughout the world. What becomes apparent is that those who make this statement, when push comes to shove, really mean that they believe that Alzheimer disease is increasing, “dementia” now having come to be regarded as synonymous with AD. Nothing could be further from the truth. AD in the context of all of the dementing illnesses and deliria is relatively rare and physicians are very unskilled at diagnosing it in the early stages, a feat that is, in fact, quite straightforward. We then decide that any person over 65 (or younger and “presenile”) who has an apparent amnestic disorder is demented = Alzheimer disease, providing an even larger market for the drugs that don’t actually help anyone who really does have AD. Schizophrenia, psychosis, or whatever is needed, is essential in order to sell the massive numbers of antipsychotics that Big Pharma has to unload.
Excellent article. Looking forward to next.
Thank you for this article, that appropriately draws attention to an interesting and important topic. I look forward to the next instalment. Will you refer to (or have you incorporated) the lucid summary of the issues & positions on this point by Edward Shorter, in his History of Psychiatry, esp. pp. 60-64?
What I find interesting about this post is the quality of thought it produced in this reader. Schizophrenia as emblematic of the human condition rather than a disease probably best describes it and other mental health conditions. To think that the community lost so much ground in the last 30 years is criminal and I lay it at the door step of greed. But really who cares about that the real issue is not placing blame but learning from history. Yes I feel as a consumer of mental health services that I have been sold a bill of goods and would have been better off with a snake oil sales man. But what is really at the heart of matter is that so many experienced their mental health medical team as mere pushers of the psychopharmacology industry and not professionals. Who got rich – I don’t really care – who go high the consumer. What happened after the 80’s was a case of teams trying to treat the medication side effect of the medicines they were dispensing and the patient was lost in a drug induced high. But I digress.
Great blog very thought provoking.
It’s not too hard to understand why your studies of schizophrenia over the past 100 years have been hot-cargoed by so many journals. They suggest that the cutting-edge treatments celebrated in the rest of the journal are leading to more death and disability than those of the 1890’s, not less. It’s been much the same with the World Health Organization’s repeated findings that people with schizophrenia fare BETTER in “underdeveloped” nations like India or Nigeria than in the US and Western Europe. The studies credited the social connectedness of people with the illness, living with their families in their native towns, often working and even getting married — and as a result, using far less medication and sometimes none at all. Western psychiatrists simply refused to believe it, for some not too mysterious reasons:
“Pharmaceutical companies, which control the scientific production of research at universities, are not interested in saying, ‘Social factors are more important than my drug,’ ” said Jose Bertolote, a WHO psychiatrist. “I’m not against the use of medication, but it’s a question of imbalance.” Western doctors cannot write prescriptions for stronger family ties, Bertolote said. But Indian psychiatrists, unlike their Western counterparts, dispense not only drugs but also spiritual advice, family counseling — even matchmaking services.”
For anyone who hasn’t heard about these studies, here’s a link to Shankar Vedantam’s excellent article for the Washington Post:
http://www.washingtonpost.com/wp-dyn/content/article/2005/06/26/AR2005062601091.html
For that matter, the fact that 1890’s patients spent much of their time in kitchens, fields and sewing rooms probably gave them a real edge in recovery. Not to romanticize the old asylums … but at their best they may have offered people more of a “real life” with something approaching real adult roles than either the current short-term hospitals or the long-term limbo which most people with schizophrenia endure “in the community.”
I believe you are on to something here. What is missing is ever day life. Again I blame TV for the disruption of the pursuit of the mundane. Tell a college you want to just go home to a small home and engage in housework for a few hours on a Friday night, the response is often flat and one of disappointment. I do not believe you are romanticizing the old system I think you are honoring the ability of people to contribute. Thank you for your insight.
A Scottish mental hospital, deep in the heart of rural Argyll, is where I was sent after eight weeks off Seroxat, suffering from ‘manic psychosis.’
I begged to go to a hospital realising I was very ill, from abrupt discontinuation from this ssri. I really did not expect a mental hospital
I was ill, I was acutely psychotic, from eight weeks off Seroxat. I drove myself to this hospital; I arrived. I was stripped of all my belongings, and it was all written down. They took my packets of Seroxat. They questioned me aggressively, from a list of questions from a clipboard. This guy was Chinese. He asked me how many ‘cups of tea I had in the mornings’. I said I didn’t know, he became aggressive and said ‘I must know’. This sort of mental battering went on. He didn’t know about Seroxat; he didn’t know, my gp had lied about not giving me Fluoxetine. He was doing his job.
I was nowhere. I begged Diazepam. I got it. I went to sleep for a week; I did not particularly get on with the inmates.
I used to be a proud, confident, successful, individual, but all this was stripped from me.
Was this the 1890s or was this the 21st century?
What was I doing there?
Why did my gp lie about drugs?
Why did the psychiatrist and gp go to their unions?
Why did the surgery tell me they ‘were too busy to read my complaint?’
What did I do to deserve all this?
Why do I have no recourse?
Just a wee thought about psychiatrists. I have seen three or four during my sixty years, why, I am not too sure. I think I wanted to clarify my thoughts, I think I wanted somebody nice to perhaps point me in a better direction than I was going in, I think I expected too much.
If a person becomes a psychiatrist, I think it is pretty vital that they are a worldy, up to date with drugs, empathetic sort of person.
My medical records clearly and concisely show a story of psychiatric lack of empathy, lack of thought, lack of a reasonable diagnosis. How is an aged man in a suit going to know about my life in a twenty minute interview. He is doing his job, he hasn’t a clue, he gives me dangerous drugs.
He is protected from anything going wrong by the National Health, by the National Health Authorities, by the MHRA, by the Medical Health Council, by the Health Ministers and probably, by the Prime Minister.
Before being given Seroxat, by a young man, I was with my dog on the beach, and I was good, and I was not looking forward to seeing him.
During three hours, in my house, he reduced me to tears, he said I had problems he could not help me with (this is the point, I had problems he could not help me with) out of his depth, no empathy, no understanding, a tool of psychiatry.
So, I get the pill, left for dead, and you cannot see this young man for dust.
He is getting on with his job, oblivous to the total destruction, carnage, he has brought to my life.
“mental illness never featured in Irish literature”
Gotcha! – Murphy, the third novel by Samuel Beckett (Nobel Laureate) has sections set in a lunatic asylum (where the protagonist envies the patients, and wants to join them in madness).
Hello Annie,
Having experienced a side effect from a prescribed medicine and recovered, I am fairly new to this website.
I read your note and hope you are on your way to recovery.
Your side effect was no fault of your own and you are still the proud confident person you remember before it sent you reeling into a space where you acted responsibly and sought help –
It is unfortunate that there are people employed within the hospital service who do not have the empathy or understanding to work in the environment thay have chosen, there are also alot of very good ones. Try to see the funny side of it, it was you who recognised what they had done wasn’t necessarily the right approach, and this can leave a feeling of sheer frusration.
It does leave alot of questions , I know, and I agree there is room for improvement within the service – 21st century as you so rightly say.
I do hope you are recovering/recovered.
You are still the person you were, probably stronger>
Gill