Why what we think we know about schizophrenia is wrong | Books



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I remember the first time I forcibly medicated a person against his will. That was 13 years ago, shortly after my qualification as a mental health nurse, and I began my career working in a psychiatric ward to assess and treat acute adults with severe mental illness.

I'll call Amit (or a service user, a customer, a son, a brother or a friend, depending on your request). Amit refused any medicine for nearly three weeks and with good reason. The medicine we offered him contained a poison. He had been prescribed by a doctor who wanted to hurt him. In fact, this doctor – a consulting psychiatrist – had been struck off the medical register for abusing Amit during previous admissions and was therefore working illegally in the service. Several nurses knew and knew about it.

During the morning medication session, Amit stood at the door of the service clinic and watched me closely. He watched the movement of my hands on the medicine cart as I secretly replaced his usual tablets with harmful tablets.

He was wearing the same clothes he had slept on and a pair of old sneakers, one with a huge tear on the side. Amit knew that the water supply in her room was deliberately contaminated and had not been washed since her admission. I would try to talk to him later – to find the right words – but for now, at least, medication was the priority.

I checked the dose on his chart, put two tablets in a clear plastic jar and handed it to him. He watched it. We both did. I've tried a few words of comfort. "I know you have trouble trusting us right now, Amit. I understand that. We think this is part of your state of unease. He knew I was lying. "I'll take them to my room," he said. I knew that he was lying. "You know it does not work that way. I'm sorry, but I need to see you take them. "

He cautiously reached out and took the pot. He insulted the tablets inside. His fingers were soiled with dark yellow tobacco. "Nah. Everything's fine, "he finally said, placing the pot on the medicine cart and leaving the clinic, watching me all the time. While he was disappearing into the long hallway leading to his room, I wrote an "R" for "refused" on his medication chart. Of course, he refused. Why would not he refuse? If I were in his place, I would know it.

But I do not know if I would refuse with the same dignity he showed when later in the afternoon, the C & R team entered his room.

C & R. Control and restraint. The legal techniques (if controversial) in which mental health nurses are trained to make a person unable to respond. In subsequent years, this training will be renamed "Prevention and Management of Violence and Aggression", which is reasonable if a person destroys the room or threatens to hurt someone; but sometimes, like that, for my money, the first description seemed to me more honest.

At a team meeting, it was decided that it was the last day that Amit could refuse an oral medication before we used an injectable form. In the language of psychiatry: his mental state deteriorated every day; he was well known in mental health services; and it was a typical presentation and schema of his illness. If we could bring him back to a stable dose of medicine, he would probably respond well.

Amit was sitting on his bed, smoking and listening to the static sounds of a portable radio. He was talking to someone no one of us could see. He looked up. We were five.

"Should I beg you?" Asked he.

One of my colleagues explained his options as they were. But that's what stayed with me. Should I beg you? That's why I had a hard time shaking hands because he was finally kept on his bed and administered the injection. He did not fight. We did not prevent and manage violence and aggression. From Amit's point of view, I have no doubt that we are committing it. At that time, despite my good intentions, I knowingly participated in her suffering.

It was at this time that I started trying to write a novel. (There is a beautiful quote from Peter Cook that pretty much sums up my experience about it: "I met a man at a party. He said," I'm writing a novel. "I said," Oh, really? Me neither. "") I lived in a small apartment in downtown Bristol and, between two shifts in service, I sat for long hours at my office, imagining the life of a young man suffering from symptoms of a strange and often misunderstood illness (or illness or condition or trauma or phenomenon or curse or gift, depending on who you ask for), as well as the life of this man's family and friends. For me, understanding what this character was going through was an imaginative exercise. Or in other words: an act of empathy.

It's something that writing a novel and mental health care have in common. To do well each one of them, it takes a lot of empathy; to strive to understand the feelings of others. Of course, as a writer of fiction, I was also responsible for creating the problems with which I had to understand. However, thinking about Amit, I probably have done this a lot as a nurse.

I decided not to diagnose the character in my novel, but if it did, I would probably have had "schizophrenia". What word, huh? It is derived from Greek Skhizein, "To split", and phren, "spirit". It is therefore not surprising that the perception of a divided person with two or more distinct personalities has been so immutable in the public imagination. It's total nonsense.








"Psychosis is perhaps a major feature of so-called schizophrenia, but it is by no means the whole situation" … Nathan Filer. Photography: Sarah Lee / The Guardian

Let's be clear about this from the beginning: schizophrenia does not mean double personality. It does not mean multiple personality either. But to declare what it is not is much easier than to say what it is. There is a credible and often passionate debate between the fields of psychiatry, psychology, genetics, neuroscience and various mental health charities and campaign groups, ranging from causes and risk factors to categorization by the way by the treatments, and even to know if the diagnosis has passed its usefulness that has always been useful) and should be rebuilt from scratch or entirely abandoned.

If we take part in this debate temporarily, the first thing that will come out is that there is no language that can be controversial when we talk about mental illness – and that includes the term "mental illness". Overall, controversy around a term tends to relate to one's state of health. Take the collective name for people with access to treatment. If you use mental health services and subscribe to the idea that your distressing thoughts and feelings are an illness, presumably located in your brain, and essentially the same as any physical illness, you may prefer to consider yourself a "patient". ". After all, if you are the same patient as the one who receives care for bone fracture, pneumonia, cancer, diabetes and chest infections, why would you be called differently?

However, if many people, including health professionals, share the opinion that even the most alarming of your thoughts, the most extreme changes in your mood and your most unusual behaviors are not so much symptomatic of a disease. a natural response to unrelieved trauma or painful events in life, or even poverty, and then summed up in a medical language that begins with the fact that you become a "patient" can seem to you to be seriously problematic. It was during my own nursing education that the term currently used as a "service user" gained ground because it was deemed more neutral. But what about people like Amit? People who are detained in hospitals and medicated against their will? Does the service user's collective name really cut it for them? Can we consciously say that they use mental health services? Probably not.

Today, a growing minority of people who avoid both terms and collectively identify as "survivors", while the Royal College of Psychiatrists' board recently reiterated its commitment to "wait." And if all this seems complicated and loaded with politics, it's because it's absolutely the case.

As in any passionate debate, there are almost certainly prejudices on all sides. That said, it would be a serious mistake to dismiss all this unimportant. Yes, it's a dispute over the language. But in the world of mental health care, language is everything. A simple truth, which is not widely understood, is that the vast majority of mental health diagnoses are not solved by blood tests, brain scans or anything else. They can not be. These tests do not exist. Rather, these are the words that people say – or do not say – as interpreted by the professionals, who determine the diagnosis as much as possible.

And the language of diagnosis, for better or for worse, has the power to profoundly change people's lives. If something as innocuous as the word "patient" is the subject of such controversy, we can now begin to imagine the dark storms of debate that revolve around the truly immense subject of schizophrenia".

This mysterious diagnosis with a misleading name has always been considered the heart of psychiatry; the condition that defines discipline. This center is also the battleground on which the fiercest ideological conflicts over folly and its meanings are disputed. Believe me when I tell you that these disputes are fierce. Curiously, much of this acrimony exists between two professional guilds that work closely together and that many people assume to be the same thing. I am speaking here of the distinct but related disciplines of psychiatry and psychology.

But among all of the "psychological" words, the most heavily laden word of popular misconceptions is psychosis – generally considered a feature of so-called schizophrenia. Although the term is not particularly precise, the broadest and most simplistic psychosis describes the phenomenon of loss of contact with reality – or, in any case, of contact with what most people perceive as a reality.

It is not considered an illness or disease in itself, although it can certainly be symptomatic of the disease. This is a typical feature of most forms of dementia, for example. Many of us will experience psychosis at some point in our lives; we can even actively pursue it. This is the effect sought by many recreational drugs. If you try LSD and it does not radically distort your experience of reality, then I suggest you find a new reseller.

Importantly, what we call psychosis can also be an answer to extreme stress or trauma. For many people, this could be understood as a kind of psychological adaptation, a coping strategy that went wrong or a form of storytelling performed in the mind in response to unbearable events in life. Whatever its cause, psychosis is usually experienced through hallucinations and delusions. Amit's belief that we are conspiring against him could be described as an illusion. It could also be described as an understandable answer to what was happening to him.

Most people diagnosed with schizophrenia experience this kind of detachment from reality. Often, even if it is not always the case, it is deeply distressing and can lead to strange behavior, as the person tries to navigate and survive in his changed and hostile world.

Psychosis is perhaps a major feature of so-called schizophrenia, but in no way is it the whole picture. Other symptoms may include: disintegration in the thought process; disorganized speech; disorganized behavior; flattened or incongruous emotional responses; impaired attention and significant social withdrawal. In a popular TED talk, Elyn Saks, a mental health specialist who lives with a diagnosis of schizophrenia, says: "The schizophrenic mind is not divided, but broken." It's also a surprisingly common phenomenon. A statistic cited for years is that it affects about one in every hundred people in the world.





"It's not always possible to find the right words, but you can still participate in the conversation. We can walk a little with people, sit with them, hear them. "



It is not always possible to find the right words, but you can still participate in the conversation. We can walk a little with people, sit with them, hear them. Photography: Stephen Burke / The Guardian

Nine years later, I sat in front of my computer to desperately look at a blank page, my novel, The shock of the fallwas – by a miracle – finished. At that time, I had left front-line nursing to work in mental health research at Bristol University. I also had a daughter, got married, and wondered if maybe I should try to write another book someday. Then the emails arrived.

They were people I had never met but who had read my fictitious account of a young man living with "schizophrenia" and had taken the time to share their own stories. Many were overwhelming, others full of hope. They rarely had the kind of perfectly designed beginning, middle, and end that, as a novelist, gave me the luxury of creating. A truth about the strange phenomenon we call mental illness is that it is chaotic and chaotic; This can be extremely difficult to understand, but that does not mean we should not try. Everyone's mental health is fragile. It serves us all to be part of the conversation.

I realized that I needed to think more about concepts such as stigma (and why anti-stigma campaigns might miss the point); psychiatric diagnosis (and why the science behind this is deeply imperfect); the causes of "mental illness" (and how sometimes what needs to be "repaired" may not reside in the individual); delusions and hallucinations (and how these are part of all our lives, all the time); and psychiatric medications (including flaws in the evidence behind current prescribing practices).

On my first day of work in a psychiatric hospital, I spent most of my time sitting in a sad smoking room drinking tea with "service users". Someone took a long puff of cigarette and told me that before coming into the common room, they did not know that such places really existed. I did not know what to say, which, by chance, meant that I had probably done the best thing. I listened. It is not always possible to find the right words, but you can walk a little with people, sit with them, hear them.

The Heartland: Finding and Losing Schizophrenia is published by Faber (£ 14.99) on June 6th. To order a copy, go to guardianbookshop.com or call 0330 333 6846. Free UK postage from £ 15 (online orders only). Minimum telephone orders of £ 1.99.

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