It isn’t easy coming to a point in your career where you begin to question widely held beliefs about the nature of mental illness, and how it should be treated. Indeed it becomes starkly obvious that, no matter what you think and believe, even know in your heart to be true, the world runs along different lines. Sometimes I can be full of hope for change, but frequently it angers and frustrates; often I am rendered melancholic by the mountain that lies ahead. Let me explain.
These days I work in a psychosis rehabilitation clinic. In the patients’ notes I read these opening lines, repeated, through the years, like a mantra, “this x year old person suffering from schizophrenia.” I question each and every diagnosis. I almost feel fallacious telling you that, these days I’m not sure such a unified entity as schizophrenia exists. If I ask the right questions, follow the patient’s narrative carefully, it usually becomes apparent that many of the people attending the clinic, even the most chronic, have had traumatic childhoods or other traumatic experiences, many of which have never been addressed.
These experiences receive scant-mention in the notes. It is also quite common, when asking about the circumstances of the illness’s onset, to discover a time of great upheaval in someone’s life; be that relationship crisis; problems at work; or more often than not, a combination of severe life events, where coping mechanisms fall apart. Many mention a period of sleeplessness before the onset of psychotic symptoms. Alcohol or drug use are usually not far away. The person gets admitted to hospital, eventually goes home, decides to stop taking the drugs, relapses… and so the wheel of psychiatry turns. Eventually they get a diagnosis like schizophrenia or schizoaffective.
The diagnosis, of course, sticks, and all future behavior is interpreted in the light of that diagnosis. For example I come across descriptions of typical negative symptoms of schizophrenia. When I meet the patient I see someone desperately overmedicated or painfully full of shame. I often ask the patient if they think they have schizophrenia. I’m still surprised by how many say they don’t. This is usually recorded in the notes as evidence of lack of insight. I, on the other hand, see they frequently understand quite well, the origins and course of their own suffering.
It seems that the central aim of the whole enterprise of psychiatry is to get to the right diagnosis, thence to the right treatment. To get to the right diagnosis, one has to believe, at some level, in the actuality of the diagnosis, i.e. that the cluster of symptoms designating schizophrenia, has some underlying biological substrate. Why else would getting to the right diagnosis be important? Arthur Kleinman in his seminal Rethinking Psychiatry mentions McHugh and Slavney (1986), senior psychiatrists at an American medical school who describe psychiatric diagnoses as naturally occurring phenomena that can be observed and mapped in the same way a scientist observes ‘the stratigraphy of mountains, the structure of a cell, or the forms of diseased arteries, rashes and cancers.’
Readers of Mad in America will, however, be familiar, with an argument, well supported by evidence, which in actuality suggests: The diagnostic categories used today were cobbled together by a committee who had more conflicts of interest than you could shake a stick at; and despite decades of searching, no responsible gene, no replicable brain abnormality, no abnormal neurotransmitter has been found. Indeed, much of the pathology of schizophrenia being described appears to result from the iatrogenic effects of medicine. The image of Pooh and Piglet following their own tracks in the snow whilst hunting the Woozle comes to mind.
On the other hand, the evidence has been piling up for social etiological factors, not least of all, the experience of trauma (Varese et al, 2012), being behind psychosis. Bebbington et al (2004), for example, in a large survey found those suffering from psychosis, three times more likely to have been abused as children. This has been widely replicated. There is also demonstrated evidence of a dose response effect, with a much greater association for children being multiply traumatized (Larkin and Read, 2008). Richard Bentall (2010) has talked about conventional psychiatry’s convoluted attempts to explain this data away.
Likewise, in discussing this with colleagues, I’ve been confronted with some odd ideas. Some make a distinction between, what gets called, a process psychosis on the one hand and schizophrenia on the other. Others suggest only sexual abuse leads to psychosis, which certainly doesn’t fit with the evidence, though in my experience, child sexual abuse and severe bullying seem to be particularly potent. Others claim the ones who suffered from abuse aren’t schizophrenic but dissociative. It doesn’t take a great leap of imagination to see, at the very least, there is considerable overlap, at the phenomenological level, between dissociation and psychosis. I could go on.
The point is, nothing is very clear when you go looking for something that doesn’t have any valid, objective existence. To my mind the only thing that can save this situation is to stop looking for this fictitious disease and start from the person’s experiences. Jacqui Dillon, chair of the UK Hearing Voices Network, in a presentation I heard her give, put it like this: The important question is not, what is wrong with you? But rather, what has happened to you? It may well be that trauma doesn’t always lie behind psychosis, and certainly not all trauma leads to psychosis. There is huge variance. I believe, only by taking an approach, which isn’t focused on getting to the right diagnosis, will we be able to map the many pathways both into and out of psychosis. It may be, that one day we will be able to describe a cohort of people for whom the classical description of schizophrenia holds true, but I am not holding my breath.
When it comes to psychosis care and treatment there are good examples of non- or low medication interventions. I wasn’t long into my reading before I came across Open Dialogue. If one searches Finland + Psychiatry through Google, the first things to come up are about Open Dialogue. Let me first dispel any myths that Open Dialogue is widely practiced in Finland. It isn’t. When I first read about it I was amazed; here is Finland with a well-organized and, seemingly, effective family therapy intervention for early psychosis, yet one, which seems most remarkable, by its absence in local clinical discourse. I also became angry. Why had I never heard about this? In all my years of training, alternatives like Open dialogue or Soteria got scant mention or were quickly glossed over.
This will give you an idea of the prevailing hegemony of mainstream psychiatric education. Why wasn’t this more widely available or recognized in Finland? With outcome studies like these, you’d think that professors and politicians would be falling over themselves to investigate further and validate the studies. As a politician, wouldn’t you see the potential for this to save the state money, through better functional outcomes and getting people back to work? Wouldn’t it be possible, with a bit of investment, to make Finland the world leader in psychosis care, as it is with education?
In trying to answer some of these questions I have learned that there are other places in Finland where Open Dialogue is happening, but Keropudas hospital in Tornio is probably where it is best established, researched and consistently practiced. Indeed, withinin our local early intervention psychosis service there is access to Open Dialogue but it comes alongside a big package of other interventions. I have heard through a colleague, who attended a meeting, where the outcome studies were first presented, that on being invited to comment, psychiatrists stood up and said that it was unethical to withhold psychiatric drugs because we now know schizophrenia is a brain disease. This is, of course, hearsay but it wouldn’t surprise me if it were true.
I have had the privilege of hearing Jaako Seikula talk on two separate occasions in medical conferences. I liken it to hearing the sound of running water in a desert. On both occasions he concluded by saying that, in his experience of working with families and psychotic patients, he has come to the conclusion that “Love is the force.” How often do you hear that in a medical conference? I find it profoundly moving. At one of the meetings where Jaako Seikkula spoke, there was a prominent Helsinki professor of Psychiatry also presenting.
My question to him was this: Why isn’t there more investment in Finland in Open Dialogue, even at the level of further research? He could only reply that there wasn’t enough money around to fund this sort of research. I’m not entirely convinced that this a money issue. I think it has more to do with political will. I have noted the growing interest in Open Dialogue outside Finland of late, with many training opportunities being organized in the UK, as well as Mary Olson’s and Sandra Steingard’s, (amongst others’) work in the USA. I can see Open Dialogue spreading around the world before being taken up properly in Finland.
Within psychiatry the biggest obstacle to change is the prevailing biological dogma, which is so pervasive. It extends to all areas of our lives. The media often discusses these issues unquestioningly, and as a result everyone ends up believing in this discourse of disordered brain chemicals and brain diseases. I’ve had friends and relatives look slightly aghast when I suggest there is not a shred of evidence for the chemical imbalance theory. Social security systems and health insurance premiums are built on this model, where different diagnoses attract different tariffs.
Pharmaceutical companies have a vested interested in promoting this model and are some of the most successful and influential companies in the world. The share prices of big pharmaceutical companies help keep the global economy propped up. They use their money and power to influence research, doctors, academic journals, the media, governments and ultimately consumers. However wrong at the moral and epistemological level, I can’t see the whole bio-psychiatric enterprise rolling over and letting us tickle its tummy any time soon. So it may be some time before a more enlightened view of psychosis becomes mainstream and Open Dialogue comes home to roost.
* * * * *
Bebbington, P. et al. (2004). Psychosis, victimization and childhood disadvantage: Evidence from the second British National Survey of Psychiatric Morbidity. The British Journal of Psychiatry, 185, 220-226.
Bentall, R. (2010). Doctoring the Mind. Penguin Books. London.
Kleinman. A (1988) Rethinking Psychiatry. Free Press. New York.
Larkin, W & Read. J (2008) Childhood trauma and psychosis: Evidence, pathways, and implications. SYMPOSIUM: VIOLENCE AGAINST CHILDREN AND WOMEN. Vol. 54, issue 4, 287-293
Varese. F, Smeets. F et al (2012) Childhood Adversities Increase the Risk of Psychosis: A Meta-analysis of Patient-Control, Prospective- and Cross-sectional Cohort Studies. Schizophrenia Bulletin. doi: 10.1093/schbul/sbs050
Negative symptoms of schizophrenia is the greatest scam there is. Is it so difficult to imagine why a person who is experiencing this kind of emotional turmoil and cognitive confusion plus societal rejection combined with psychiatric abuse is not the happiest, most motivated and sparkling person in the room?
A friend of mine has jokingly “diagnosed” himself with all the negative symptoms of schizophrenia when he was in a period shortly after his wife got a premature baby and had to stay in a hospital and he had just started a new job and was chronically stressed and tired. I’m sure has he not shared my opinion about psychiatry and gone to a good professional to seek “help” he would end up with some sticky label and a bunch of mind numbing drugs to go along with it.
Btw, a really good and thoughtful article I wanted to say :).
Anyone in treatment is going to suffer from negative schizophrenia, I can’t imagine it otherwise – the medications create a form of Parkinsons ( or shall I say, they did with me).
An end to treatment for me – resulted in an end to chronic disability.
And you’re right about the article B, it is really insightful.
Hi B, hi Fiachra,
I did not have the time to research this, but I would not be surprised if the so-called negative symptoms of “Schizophrenia” became more prevalent in the official psychiatric “diagnostic” scheme during the time the first-generation major tranquilizers began to take hold as the “first-line” treatment option for “Schizophrenia” in the early 1950s.
Yet another instance of re-labeling so-called adverse effects of drugs as “symptoms” of a “mental disease”. Apart from the fact that the whole schizophrenia-concept (1908, Eugen Bleuler) was originally primarily based on a then unknown virus infection of the CNS, encephalitits lethargica – turned ‘dementia praecox’ turned “schizophrenia”… and now, over a century later, the schizophrenic ghost of Christmas Past ist still with us – how did this happen?
B, hope you don’t mind the ‘Du’. 🙂 Haste das Buch von Strate zum Mollath-“Fall” schon gelesen? Good stuff, me thinks.
I’ve not read the book yet, thanks for the recommendation :). His case is so illustrative of so many problems with psychiatry and their impunity it’s stunning :(.
I meant Mollath’s case…
I was practically parlysed when I was on the stuff.
Dr. Where may I ask do you hail from, and are you taking patients?
I’m in Finland. Currently don’t do any private work.
“Negative symptoms of schizophrenia is the greatest scam there is. Is it so difficult to imagine why a person who is experiencing this kind of emotional turmoil and cognitive confusion plus societal rejection combined with psychiatric abuse is not the happiest, most motivated and sparkling person in the room?”
You just summed up the last 10 years of my life.
There are no words to express how much that means.
Btw, another interesting thing out of Finland:
Yeah, Go PKN!
I really applaud you for facing up to the BS in psychiatry. As one who is completely frustrated with the medical system in general for various reasons, I can’t thank you enough for doing this.
Speaking of political will, I noticed that in medicine general, practices occur because of this even when it is dangerous to the patient. Very frightening and frustrating.
“Indeed, much of the pathology of schizophrenia being described appears to result from the iatrogenic effects of medicine.”
How can any psychiatrist not see a client’s worsening state as due to the drugs he prescribes? I have my psychiatrist’s records and over and over the man writes how perplexed he is about me getting more “symptomatic” as the poly drugging gets out of hand. Looking for drug reactions should be any prescribing physicians first investigation. I hope who reads the articles on MIA realize this (client/physician) and re-thinks where they are drug wise.
You had me at Woozle.
Drawing from the last century of artistic and literary richness is very needed. There is so much wisdom there. So many messages in bottles thrown out by those who were ground to splinters by modernity.
I seek refuge in Rilke, in Dr. Seuss, and in a thousand other bright lights who came before. Whose shoulders we stand upon.
This is a great post. I’m so pleased to see that the internet traffic to this site has increased. It is badly needed.
Please keep writing.
Please keep fighting the good fight.
Dr Seuss’ The Road to Solla Sollew is about the most sensible advice I know.
Thank you, Jeremy, for pointing all of this out, I’m very grateful. I, too, appreciated this part, “much of the pathology of schizophrenia being described appears to result from the iatrogenic effects of medicine. The image of Pooh and Piglet following their own tracks in the snow whilst hunting the Woozle comes to mind.” I personally think the psychiatric industry has voted into existence a DSM book of “mental illnesses,” which is actually a book of the iatrogenic illnesses caused by their drugs, at least that was my personal experience.
And your pointing out that there is a problem with the medical community claiming concerns or symptoms of child abuse are psychosis is absolutely true, Read points out that 77% of children admitted to hospitals with symptoms of child abuse get labeled psychotic in one of his articles. Symptoms of a crime are not a life long incurable brain diseases in the victims, however.
I personally had concerns of child abuse, bullying by the child abusers, disgust at 9.11.2001, all worsened by the now well known withdrawal symptoms of the “safe smoking cessation med,” Wellbutrin, misdiagnosed as “paranoid schizophrenia,” “bipolar,” and “depression caused by self” all within three weeks. The DSM is neither valid, nor reliable.
I was prescribed .5 mg of Risperdal, a typical child’s dose, and this small amount of Risperdal sent a grown adult into a terrifying psychosis within 2 weeks. It was confessed to be a “Foul up.” But rather than being taken off the neuroleptics all together, I was switched to more neuroleptics. And I’ve recently read that the psychiatric industry is still promoting the importance of keeping patients who do not respond well to the neuroleptics on the neuroleptics.
I truly hope the psychiatric industry gets out of the business of claiming symptoms or concerns of child abuse are life long, incurable, genetic mental illnesses. And learns their drugs create chemical imbalances in the brains of healthy people faced with real life difficult situations.
The central symptoms of neuroleptic induced anticholinergic intoxication syndrome are almost identical to today’s definition of schizophrenia:
“Agents with anticholinergic properties (e.g. … neuroleptics …) may have additive effects when used in combination. Excessive parasympatholytic effects may result in … the anticholinergic intoxication syndrome … Central symptoms may include memory loss, disorientation, incoherence, hallucinations, psychosis, delirium, hyperactivity, twitching or jerking movements, stereotypy, and seizures.”
My personal theory is that I am not alone in having the central symptoms of neuroleptic induced anticholinergic intoxication syndrome fraudulently claimed to be a life long incurable genetic mental illness.
I agree, the Woozle analogy is awesome. Every time around the tree, they find more and more “evidence” that they are on the “right track”, when in the end, all they are doing is chasing their tails. The big difference is that Pooh and Piglet are humble enough to see their foolishness when it is pointed out to them, whereas Psychiatry will continue ’round the spinney until they wear a 10-food trench into the ground.
They also considerably cuter and thefore forgivable for their foolishness. Jeffery Lieberman probably wants to manufacture Hug a Psychiatrist T shirts!
Blade Runner (1982)
Holden: You reach down and you flip the tortoise over on its back, Leon.
Leon: Do you make up these questions, Mr. Holden? Or do they write ’em down for you?
Holden: The tortoise lays on its back, its belly baking in the hot sun, beating its legs trying to turn itself over, but it can’t. Not without your help. But you’re not helping.
Leon: [angry at the suggestion] What do you mean, I’m not helping?
It is nice to read of someone who has similar experiences to me. The author wrote, “If I ask the right questions, follow the patient’s narrative carefully, it usually becomes apparent that many of the people attending the clinic, even the most chronic, have had traumatic childhoods or other traumatic experiences, many of which have never been addressed.”
I have often sat in cafe’s with people diagnosed with varieties of psychosis to find they disclose horrific events in their past which the services know nothing of.
The number of rape, domestic violence, and childhood abuse victims I’ve encountered professionally who were diagnosed as “bipolar” is quite astounding. I’ve even heard psychiatrists argue that trauma didn’t really cause their suffering ‘because not everyone reacts to trauma that way, so their brains must somehow be different.’ As if there is a right way to react to being raped!
It does seem that the child abusers all know that the psychiatric industry is in the business of defaming victims of abuse with major mental illnesses. I was actually declared to be “bipolar,” based upon lies from the people who abused my child, according to my medical records. I had no idea psychological and psychiatric services were nothing more than gossip masquerading as medicine.
It’s way too easy to do, since there is no way to refute their nonsense. Of course, everyone has “mood swings,” especially when you have been or are being traumatized, but if you speak up and complain, well then you’re “irritable” and that’s another mark against you. Then they give you drugs to “help” and create more “symptoms” which reassures them that they were right all along, even though they created the “symptoms” themselves! It is an incredible scam.
I have mentioned our experience with my son last summer before…after he went 5 nights without sleep, we spent two weeks supporting him through what he now feels was an existential crisis that could also be called ‘psychosis.’ I am happy to report that he continues to do fine…he now wants me to mention our experience in my work so people “know that it is not a brain disease.” Although we did not have access to a full Open Dialogue model, I am familiar with the model and have studied alternatives for years…Keeping him out of the hospital and the system was my biggest motivator…we found an Open Dialogue trained psychiatrist and got through the two weeks he spent feeling very distressed.
It works…People can and do go through extreme experiences without neuroleptics…he used a few nights of Benzos to get back on track with his sleep and that was it…eight months later, he is fine, doing well in college and I am so relieved that he stayed out of our psychiatric system…
Thank you for your article!
Yes sleep is the key, and you’ve got to wonder how many people are getting labelled and medicated after having a period of sleep deprivation whilst in crisis? I mean what a high price to pay for having a period of not sleeping properly, getting a lifetime of visits to misinformed, patronising doctors and neurotoxic drugs.
Oh please, don’t go there. I find it really distressing to talk about patronising doctors (and social workers, CPN’s, Key Workers, day centre manager and whatever else they are employed to do) and neurotoxic drugs.
It’s tranquilisers and neglect and if you are lucky a patronising chat from a social worker/cpn once a fortnight – FOR THE REST OF YOUR LIFE.
It makes me sick.
Regarding “…a period of not sleeping properly, getting a lifetime of visits to misinformed, patronising doctors and neurotoxic drugs.”
“Love is the force.” Indeed, it is, and unfortunately, ‘love’ is as vastly interpreted and for some, as confusing, as is the concept of ‘psychosis.’
This article–and especially that quote–prompted me to reflect on the energy of ‘love.’
What is love?
That has many answers, but to me, it all boils down to feeling and navigating life with our hearts, which is, in reality, what fuels our thoughts, perceptions, and actions.
So how do we inspire love in others?
First, we have to know what love feels like in our own hearts. Betrayal of trust, living in a fear-based world, and other traumas, constrict our hearts and instead of love, we feel fear. These two cannot exist in the same space, as they are antithetical to each other. Fear is the absence of love.
When we feel love, we know how to trust our hearts, and this becomes our inner guidance, which is uniquely our own. When we feel love, we know there is, in reality, nothing to fear. Whereas when we are not feeling love, our perception is different, and even kindness can appear as a threat, as in the response “What do you want from me??” Fear, panic, and paranoia is what come from lack of love, because it is lack of trust.
To me, love is trust and is what connects absolutely everyone on some level, and to all that is. Sadly, our hearts have been so wounded, collectively, that it can be really hard to feel love, and this universal connection, and trust can be hard to come by.
Although I always know it’s in there somewhere, when I either feel unloving or feel this from others. Usually there’s some negative crud to get out of the way, and to me, that’s what healing is all about, clearing the energy of our hearts.
Dialogue can be challenging with those whom do not feel love, because words can be interpreted cynically, through pure negative projection. Usually, it’s like having a ‘chip on your shoulder,’ an unresolved conflict that spills into every aspect of the dialogue, inhibiting clarity and real progress, making it all personal, rather than taking ownership of our experience. It can get messy, but sticking with it, mindfully in present time and with trust in the process, can lead to light and truth, and a lot of healing for all concerned.
However, dialogue can be hard to tolerate when there is no love, which, I think, is why people end up forced medicated. The receiver of the client’s information is not in their heart. That can be a huge and even disastrous problem for the client, if they are unsuspecting and vulnerable.
The paradox is that when we have been in the habit of not feeling love, it can be hard to receive it, and in fact, when it comes to us, we don’t recognize it, and in fact, reject it as something threatening. That’s a distortion of thought based on post traumatic stress and fear.
When we feel true and authentic love (you know it when you feel it), we have clarity and peace of mind, as this is the inner voice with which to dialogue for internal support, inner guidance, and to achieve self-respect and personal sovereignty over our lives. At least, this has been my experience, in its totality.
To heal from so-called ‘mental illness,’ I had to feel love in my heart, first, by addressing all the wounds head on and working through them diligently, including at least an attempt to dialogue with those by whom I felt betrayed. Then, I forgave absolutely everyone on that list, including those within the mental health industry that gave me a ridiculously and unwarranted hard time, that almost cost me my life. Doesn’t necessarily heal the relationship, as most people don’t want to hear this, and don’t even care about being forgiven, but it does heal our own fear, and brings us great courage and confidence. Releasing resentment allows love into our hearts.
This created a loving relationship within myself that no one can sabotage, because I know what love feels like in my heart, that’s my guidance, so it’s always my priority when I face conflict with anyone. Certainly my heart can constrict if triggered just the right way, as with anyone, but my first order of business is always to align with my heart again, feel the inherent love that is me and everyone, and THEN go back to the discussion–or not, if I feel it’s really hopeless and only draining to me at that point. That’s a matter of discerning my own feelings and intuition about the relationship at hand.
Once I got this, my path lit up with clarity and it led to my healing, integration, and newfound wholeness. My purpose in life now is to give back, which I do every day. I know my heart and I know love, so that goal is met for the rest of my days.
Once we connect or re-connect with the love that is inherently within us–all of us–then it is an infinite resource of loving support, personal wisdom, and spiritual abundance. From this perspective, it seems that heart healing is essential for the human spirit to thrive. Without it, I shudder to think–the evidence is already all around us.
Lack of love = fear = violence; Love = inner peace = world peace. Perhaps not to everyone, but to me, these equations ring totally true, so the answer would seem clear. But that’s just me…
Thank you Alex. Very well put. Increasingly I see fear as the problem not the other stuff like voices or delusions. Helping people conquer the fear is what mental health services should be doing.
Absolutely agreed, 100%! We all have interesting/bizarre phenomena occur to us from time to time that can be disorienting and confusing. When we explore the unknown with trust (and even excitement) rather than fear and shame, the outcomes are inevitably much, much better–pretty much black & white, in fact.
Thank you so much for your perspective. Personally, I think it’s the ticket to healing, universally.
Years ago, the prosecution of rape was widely considered the second victimization of the person who had been traumatized because, at that time, the victim’s character was on trial for no other reason than that they had had the gall to both be raped and report it. After 32 years of psychiatric treatment, I have yet to meet a person considered “seriously mentally ill” who has not, in some way, been traumatized. Whether that trauma is real or perceived doesn’t really matter, because even imagined trauma is trauma to the person who went through it. The question is no longer if the medical model works; the question is how long can they continue to support it when it has failed so completely? Certainly, the numbers of reported mentally ill are not dropping. They aren’t even at a standstill. If “insanity is doing the same thing over and over and expecting different results,” psychiatry in it’s current state is quite insane.