This Book Will Change Your Mind About Mental Health Read online

  Nathan Filer is a qualified mental health nurse. The Shock of the Fall, his novel about the life of a young man grieving the loss of his brother, was a Sunday Times bestseller and has been translated into thirty languages. It won the Costa Book of the Year, the Betty Trask Prize, the National Book Award for Popular Fiction and the Writers’ Guild Award for Best First Novel. He has written for the Guardian and the New York Times. His BBC Radio 4 documentary, The Mind in the Media, which explored portrayals of mental illness in fiction and journalism, was shortlisted for a Mind Media Award. He lives in Bristol with his wife and two children.

  Further praise for This Book Will Change Your Mind About Mental Health:

  ‘Schizophrenia has been called the heartland of modern psychiatry because the quest to understand and treat it has come almost to define the discipline … Absorbing … Filer does a brilliant job of bringing order and humanity to a seemingly chaotic scene.’ Paul Broks, Literary Review

  ‘A hard-hitting and thoughtful account of contemporary mental health practices … Mental health is “messy and chaotic” but that doesn’t mean we shouldn’t keep trying to make sense of it. This impressive book advocates that we all need to be part of the conversation.’ Ian Critchley, Sunday Times

  ‘I find Filer’s evenhanded efforts to navigate difficult terrain appealing and impressive. I have rarely learnt so much from a book so short on definitive answers. Filer’s humility for himself and his professions seems fitting … The tone remains questing and buoyant even as we move through lives devastated by so-called schizophrenia. I hope it will be widely read and discussed.’ Cathy Rentzenbrink, The Times

  ‘Through a distinctive style of writing that is at once conversational, confiding and challenging, he helps us open our minds to new ways of thinking about mental health, about each other, and about our own selves … It reminds us that, in many respects, when it comes to what goes on in our heads, we are all on the same human continuum.’ Bookseller Book of the Month

  ‘This moving, endlessly quotable, and extremely thought-provoking book will hopefully do just that … It feels like a gift to us all, a gift whose importance cannot be exaggerated, and whose potential we all could help to realise.’ Bristol 24/7

  ‘These true stories are fascinating, harrowing and widely varied in their outcomes … His argument is humane, cogent and, well, sane.’ Charlotte Moore, Oldie

  ‘In his first-person stories, Filer brings his novelist’s eye for detail into play … The stories are all the more compelling as they are enriched by Filer’s own personal experience as a nurse.’ Rachel Kelly, The Tablet

  To S.R.C

  Contents

  Title Page

  Dedication

  A note on confidentiality

  The Language of Madness (and the beginning of our conversation)

  THE JOURNALIST

  Insight

  Stigma and Discrimination

  THE SOLDIER

  Diagnosis

  THE MOTHER

  Causes

  THE COMMUNITY

  Delusions

  Chemical Treatment

  THE KEYHOLDER, THE NON-KEYHOLDERS AND THE VOICES

  Leaving the Heartland

  Acknowledgements

  About the Author

  Also by the Author

  Copyright

  A note on confidentiality

  SOME OF THE PEOPLE you will encounter in this book have not been anonymised and no details of their stories have been changed. Others have been anonymised to greater or lesser degrees. Sometimes a name change was all that was requested. Elsewhere, I’ve altered locations, dates and other identifying details. These decisions were made by the people whose stories I recount. – NF

  The Language of Madness (and the beginning of our conversation)

  I REMEMBER THE FIRST TIME that I forcibly medicated a person against his will. It was thirteen years ago, not long after I’d qualified as a mental health nurse, and I had started my career working on a psychiatric ward providing assessment and treatment for adults in acute phases of serious mental illness.

  There was a patient (or service user or client or son or brother or friend, depending on who you ask) whom I’ll call Amit. Amit had been refusing any medication for nearly three weeks and with good reason. The medicine we were offering him contained a poison. It had been prescribed by a doctor who wished to harm him. In fact, this doctor – a consultant psychiatrist – had been struck off the medical register for his abuse of Amit during previous admissions and so was now working illegally on the ward. Many of the nursing staff knew this, and were in on it.

  During morning medication round, Amit stood in the doorway of the ward clinic, watching me closely. He watched the movement of my hands over the drugs trolley as I secretly replaced his regular tablets with harmful ones.

  He was wearing the same clothes that he’d slept in and a pair of old trainers, one with a huge split down the side. Another patient (or colleague or mother or teacher or daughter) had recently complained about Amit’s smell. Whenever he sat in the TV lounge, she said, it made her feel physically sick. The problem was that Amit knew the water supply to his room was deliberately contaminated and so hadn’t washed since he was admitted. I would try to talk to him about that again later – to find the right words – but for now, at least, the medication was the priority.

  I double-checked the dose on his chart, put two tablets into a clear plastic pot and held it out for him to take.

  He stared at it. We both did. I tried some words of reassurance. ‘I know you’re finding it hard to trust us at the moment, Amit. I do understand that. We think that’s all a part of you being unwell again.’

  He knew I was lying.

  ‘I’ll take them in my room,’ he said.

  I knew he was lying.

  ‘You know it doesn’t work that way. I’m sorry, but I need to see you take them.’

  He cautiously reached out and took the pot from me. He prodded at the tablets inside. His fingers were stained dark yellow from tobacco. ‘Nah. You’re all right,’ he said at last, placing the pot on top of the drugs trolley and backing out of the clinic, watching me the whole time. As he disappeared down the long corridor towards his bedroom, I wrote an ‘R’ for ‘Refused’ on his medication chart. Of course he refused. Why wouldn’t he refuse? If I were in his position, I know I would.

  But I don’t know if I would refuse with the same dignity he showed when later that afternoon the C & R team entered his bedroom.

  C & R. Control and Restraint. The legal (if controversial) techniques that mental health nurses are trained in to render a person unable to fight back. In subsequent years, this training would be rebranded as Prevention and Management of Violence and Aggression, which is reasonable if a person is smashing up the ward or threatening to hurt someone, but at times like this, for my money, the first description felt more honest.

  It had been decided in a team meeting led by the consultant psychiatrist that this was the last day Amit could refuse oral medication before we would use an injectable form. In the parlance of psychiatry: his mental state was deteriorating daily; he was well known to mental health services; and this was a typical presentation and pattern of his illness. If we could get him back on a stable dose of medication he’d likely respond well.

  Amit was sitting on his bed, smoking and tuning through the static on a portable radio. He was talking to somebody that none of us could see. He looked up. There were five of us.

  ‘Do I have to beg you?’ he asked.

  A colleague of mine explained his options, such as they were. But that’s the bit that stayed
with me. Do I have to beg you? It’s why I struggled to keep my hands from shaking as he was eventually held down on his bed and I administered the injection. He didn’t put up a fight. We weren’t preventing and managing violence and aggression. From Amit’s perspective, I don’t doubt we were perpetrating it. In that moment, however good my intentions, I was knowingly participating in his suffering.

  *

  It was around this time that I began to write a novel. I was living in a small shared flat in inner-city Bristol, and between shifts on the ward I would sit for long hours at my desk – or more often pace the floorboards in the hope that the physical movement of my body might somehow dislodge some inspiration from whatever stone in my brain it was hiding beneath.

  I was imagining the life of a young man who was suffering from the symptoms of a strange and commonly misunderstood illness (or disease or condition or trauma or phenomenon or curse or gift, depending on who you ask), and also the lives of this man’s family and friends. This was a work of fiction but it was fiction that drew upon my very real feelings about working in mental healthcare, as well as many of my personal childhood experiences. I reckon that’s where imagination comes from. Whether consciously or unconsciously, we dig up memories of our experiences – what we’ve seen and done and read and felt and hoped and fucked up and desired and regretted and all the rest of it – and then we reshape them a bit here, a bit there, until they resemble something entirely new. For the protagonist in my novel, though, experience and imagination had become inseparably tangled so that he no longer knew what was real and what was happening only inside his head. For me, understanding and responding to what this character was going through was principally an imaginative exercise. Or put another way: an act of empathy.

  This is something that writing a novel (and reading one) and mental healthcare have in common. To do each of them well requires bucketloads of empathy; of striving to understand and share the feelings of other people. Of course, as an author of fiction, I was also responsible for creating the very problems that I then had to empathise with. Though, thinking about Amit, I probably did that as a nurse quite often too.

  *

  So my protagonist was having a hard time.

  I decided not to diagnose him in the novel, but if I had, I’d have probably landed on schizophrenia.

  Schizophrenia

  What a word, huh?

  I wonder if you might consider trying something for me? Say the word ‘schizophrenia’ out loud a few times. Not beneath your breath. Really say it. Say it loud enough that you feel self-conscious; that you worry someone will hear. Say it loud enough that someone might hear.

  Feel the shape of it. Stay with it. Think about what that word evokes in you. What thoughts does it arrive with? What feelings?

  Okay. That’s the interactive part of this book over with. I promise I’ll just let you read now. But please remember this as you do so: whole lives have disappeared beneath that word.

  Schizophrenia is derived from the Greek skhizein, ‘to split’, and phrēn, ‘mind’. Small wonder then that the perception of a divided person with two or more distinct personalities has endured so immutably in the public imagination. It’s utter nonsense though.

  Let’s be clear about this from the start: schizophrenia does not mean split personality. Neither does it mean multiple personality. But declaring what it isn’t is a good deal easier than asserting what it is.

  There’s credible and often heated debate across the fields of psychiatry, psychology, genetics, neuroscience and various mental health charities and campaign groups over everything from causes and risk factors to categorisation and treatments, and indeed as to whether the whole concept of the diagnosis has outlasted its usefulness (if it ever was useful) and should be rebuilt from scratch or abandoned entirely.

  If we tentatively take a seat in this debate the first thing that will become clear is that there is no uncontroversial language when talking about mental illness – and that includes the phrase ‘mental illness’.

  On the whole, the controversy around a term tends to relate to how medical it feels. Take the collective noun for people accessing mental health services. It was during my own nursing training that the word ‘patient’ fell almost entirely out of favour and we were encouraged instead to adopt ‘service user’ – to the confusion of many service users, granted.

  In fact, the term had been a long time coming. It was the fruit of decades of campaigning by people who had themselves been ‘patients’ within the psychiatric system and who roundly rejected the medical connotations of the term: that it implies a doctor-knows-best passivity, compounding feelings of disempowerment. The term ‘service user’ was preferred because it defines a group by precisely that – its use of services, rather than by a sick role.

  So already we can see the beginnings of an ideological split. If you’re a user of mental health services and believe that your distressing thoughts and feelings are an illness, presumably located within your brain, and essentially the same as any physical illness, then you might well prefer to think of yourself as a patient. After all, if you’re the same as those patients receiving care for broken bones and pneumonia and cancer and diabetes and chest infections then why should you be called something different?

  However, if you’re of the view – shared by many people, including many mental health professionals – that even the most alarming of your thoughts, and the most extreme changes in your moods, and your most uncharacteristic behaviours are not symptomatic of illness so much as a natural response to undischarged trauma or painful life events, then to see this wrapped up in the medical language of diagnosis that inevitably begins with you being declared a ‘patient’ might feel seriously problematic.

  ‘Service user’ was generally considered the more neutral term and so gained traction. But what about people like Amit? People who are detained in hospitals and medicated against their will? Does the collective noun of service user really cut it for them? Can we in all conscience say they are using mental health services?

  Probably not.

  Today there’s a growing minority of people who eschew both terms and collectively self-identify as ‘survivors’, while the Council of the Royal College of Psychiatrists recently recommitted to ‘patient’. And if all this sounds complicated and fraught with politics it’s because it absolutely is. We’ve barely scratched the surface.1

  It might be tempting to roll our eyes at this point.

  To quote the protagonist of my novel, upon him hearing the term ‘service user’ for the first time:

  They have a bunch of names for us. Service Users must be the latest. I think there must be people who get paid to decide this shit.

  I thought about Steve. He’s definitely the sort to say Service User. He’d say it like he deserved a knighthood for being all sensitive and empowering.2

  (Steve, incidentally, is a mental health worker inspired by what I felt to be my own worst professional traits.)

  I offer the quote because I think it’s no bad thing to uphold a little cynicism. As with any impassioned debate, there are almost certainly elements of self-interest and prejudice on all sides. That said, I also believe it would be a grave mistake to dismiss any of this as unimportant. Yes, it’s a dispute about language, but in the mad, mad world of mental healthcare language is everything. A simple truth, which we will confront in more detail later, is that the overwhelming majority of psychiatric diagnoses aren’t arrived at by looking at blood tests or brain scans or anything of the sort. Rather, it is the words people say – or do not say – as interpreted by professionals, that as much as anything else will determine a diagnosis.

  And the language of diagnosis, for better or worse, has the power to profoundly alter people’s lives.

  This brings us back to the word we were speaking out loud a few moments ago. And if something as seemingly innocuous as a simple word like ‘patient’ is the subject of such controversy, we can now begin to imagine the dark storms
of debate swirling around the truly immense subject of ‘schizophrenia’.

  It is with this in mind that I want to make a commitment. From this paragraph forth the terminology in this book will either directly reflect that used by the people I meet (or whose writings I quote from) or else will strive to acknowledge that the most commonly used terms, as adopted largely from the world of medicine, represent only one way of thinking. To this end, schizophrenia will become so-called schizophrenia and a mental illness, a so-called mental illness. Or else I will use inverted commas or some other indicator to keep us mindful that there exist alternative narratives.

  The novelist in me is cringing at the unwieldiness of this (while some other part of me doesn’t especially enjoy being perched on this decidedly splintery fence), but I hope it will be seen for what it is: a genuine attempt to be respectful to both those who find comfort in the language of medicine and those who have been injured by it.

  Okay. Let’s try it out.

  The controversies surrounding so-called schizophrenia are as old as the ‘illness’ itself.

  There. That wasn’t so difficult.

  *

  Now, as to precisely how old so-called schizophrenia is, needless to say, there’s some debate.

  On the whole, its discovery – or invention – is credited to the German psychiatrist Emil Kraepelin (1856–1926). He was the first physician to describe a ‘precocious madness’ that he observed in psychiatric patients and incorrectly hypothesised to be an early onset brain disease causing cognitive disintegration. He named this ‘dementia praecox’. Then, during a lecture in Berlin on 24 April 1908, Kraepelin’s contemporary Eugen Bleuler (1857–1939) made the successful case for a rebrand: ‘schizophrenia’ was born.

  What Kraepelin and Bleuler could not have anticipated was that their mysterious new disorder with its exotic-sounding name would in time come to be seen as the very heartland of psychiatry; the condition that defines the discipline.3 Such is the seriousness and complexity of the disorder that to understand it, so this theory goes, is to understand mental health.