‘These are big, contentious conversations’

Nathan Filer's book on schizophrenia is out now. We asked him some questions and reproduce an extract from the book.

Nathan Filer is a qualified mental health nurse, and currently Reader in Creative Writing at Bath Spa University. Nathan’s first novel, The Shock of the Fall, about a man grieving the loss of his brother, won multiple awards including Costa Book of the Year. Here, Nathan tells us about his new non-fiction book, The Heartland: Finding and losing schizophrenia, which is out now. The extract below is reproduced with kind permission.

Why did you choose to focus on schizophrenia, rather than mental health more broadly?

I’ve used schizophrenia – or rather the unusual thoughtsfeelings and behaviours that are commonly called ‘schizophrenia’ as a point of entry into what I hope is a much wider exploration of the concepts of mental health and illness. 

Partly, this decision was made for me. At the heart of the book is a series of personal narratives. Some of these are the stories of people who read my first novel The Shock of the Fall (which is about a young man with a schizophrenia diagnosis) and who took the time to reach out to me in order to share their own stories – true stories – about living with this most unusual of human experiences.

Why is your book called The Heartland?

Schizophrenia was traditionally called ‘the heartland’ of psychiatry; the condition that all but defined the discipline. It’s an emotive, oddly territorial description. It’s not a phrase used today, but I think itremains apt to describe what is a highly emotive and proprietorial debate. Almost everything about schizophrenia – from causes to treatment, and indeed to whether it truly exists – is subject to fierce and frequently acrimonious debate.  

The heartland, it seems to me, has become the scarred battleground upon which the most entrenched ideological disputes over madness and its meanings are fought. So yes, I figured it’d make a decent title for a book on the subject. 

You talk about the issues with diagnosing schizophrenia: that the term can be misleading to patients, that it can get in the way of research, and that schizophrenia may not even exist. Do you think there is still use in this diagnosis?

I do say all of those things, don’t I? These are big, contentious conversations. I believe it’s best to always bring them back to real people and real experiences. 

In The Heartland I interview a woman named Clare. Her teenage son, Joe, had a diagnosis of ‘hebephrenic schizophrenia’ – as characterized by disorganised thoughts and flattened emotions. He was extremely disruptive and chaotic throughout his early adolescence, before his life was tragically cut short. He died when he was just nineteen years of age.

Clare told me how she had taken some comfort in Joe’s diagnosis because it helped her to make sense of his behaviours. Only here’s the thing: since Joe’s death, ‘hebephrenic schizophrenia’ has technically ceased to exist. It never made the cut for the latest edition of the DSM – psychiatry’s official taxonomy, commonly referred to as its ‘bible’. 

In 1973 homosexuality was officially a mental disorder. By 1974, thankfully, it was not. And it was the voice of feminism that won the argument against ‘pre-menstrual syndrome’ and ‘masochistic personality disorder’ (read: the domestic violence you’re suffering from is actually something that’s the matter with you) being classified as mental illnesses in the late 1980s.  

Determining which of our thoughts, feelings and behaviours are disordered and which are not is a social and political exercise as much as it is a scientific one. Indeed, Dr Steven Hyman, a former director of the US National Institute of Mental Health has stated that the categorical diagnoses of the DSM represent ‘an absolute scientific nightmare.’  

How we label people changes over time. Meanwhile, Joe remains dead. And Clare must live with that absolute and unalterable fact. These are the kind of things that I seek to explore in the book.    

You describe how institutional racism has led to disproportionate sectioning and medicating of black and minority ethnic patients. What should we be doing to counter this?

As a white person who has never been sectioned, I don’t suppose I’m especially well qualified to answer that. But I suspect that one area worth focussing on is staffing. In the UK, people who experience psychosis and so-called schizophrenia are disproportionately black and male, whereas clinical psychologists are disproportionately white and female. 

In a recent independent review of mental health services, it was noted that clinical psychologists do not necessarily have training in ‘transcultural therapy’ or a deep understanding of specific issues relating to racism and discrimination. 

As I discuss in the book, this may result in black and minority ethnic people being less likely to engage in – or to be offered – the kind of therapies that can reduce distress and mitigate against enforced hospitalisation and medical treatments.

The book ends with a call to arms. What would you like us – psychologists and non-psychologists alike – to do?

A couple of interviewers have told me that it ends with a call to arms, so perhaps it does. But I wasn’t really aiming for that. What I was aiming for was a call for people to take a seat in the conversation. 

It’s brilliant that conversations about our mental health have become that much more prominent in recent years – especially those around depression and anxiety. There’s now less stigma associated with having those kinds of feelings. 

But I worry that this discourse has gotten broader without getting deeper. I hope that The Heartland will encourage people to think a bit more deeply about the phenomenon that we call mental illness, and to explore different ways of understanding it. 

I want everyone to be part of this conversation: for each of us to feel brave enough to speak, and brave enough to listen.

The Heartland: Finding and Losing Schizophrenia by Nathan Filer is out now (Faber & Faber ltd, £14.99). 

Photo: Emily Parker 

Stigma and Discrimination

IT HAD MADE ME FEEL SO SAD to learn that upon seeing the word ‘psychotic’ in her medical notes (during what should have been a routine smear test) Erica began to question herself, to wonder if she might be a bad person, might even be capable of harming her baby if she became a mother. Not because she’d ever hurt anyone before but because she associated the word so strongly with acts of violence. 

Then when she was eventually diagnosed with paranoid schizophrenia she believed her life to be as good as over. That she would never get a boyfriend or a job or live independently ever again. 

I’m not immune from the myths,’ Erica explained to me. ‘And the things I’d read in the paper, I kind of believed. It wasn’t until later on, until I’d settled down on medication, started speaking to other people and reading more mental health-savvy literature that I started to think: hang on, maybe this isn’t correct, maybe this isn’t the truth.’Even then, as she began to educate herself, Erica still had to deal with the prejudices of her family and her employers. It’s an uncomfortable truth that for some people diagnosed with ‘serious mental illness’ the reactions of the people around them are more distressing than the condition itself. 

Before we go on then, this seems a good time to make it clear that the overwhelming majority of people diagnosed with schizophrenia are not violent. On the contrary, their vulnerability puts them at a significantly greater risk of being the victims of violence. One American study revealed that people diagnosed with schizophrenia were fourteen times more likely to be the victim of aviolent crime than to be arrested for one.The common perception of people with schizophrenia being a danger to society is wholly inaccurate. 

This is also a good time to stress that what we call schizophrenia needn’t be a life sentence. There are complications in pinning down the exact rates of recovery, not least because recovery is a concept that means different things to different people. For some, it might mean a complete remission of ‘clinical symptoms’. For others, it will be a journey; a subjective improvement of wellbeing and growth, and of staying in control of life. This might involve the attribution of meaning to experiences over time, rather than returning to an earlier mindset. There are also those who reject the very concept of mental health recovery on moral and philosophical grounds. Such is the position of the user-led campaign group Recovery in the Bin, who argue that the term has been co-opted by the mental health system as a means to further discipline and control people. They believe that autonomy and self-determination, at the heart of any true recovery, cannot be calibrated by outcome measures.3

All that said, if we decide not to reject the term, then by any metric so far proposed – be it clinical or more deeply personal – meaningful and sustained recovery from so-called schizophrenia can and frequently does happen.4

‘Popular knowledge about mental illness’, writes Graham Thornicroft, ‘is a potent cocktail of profound ignorance and pernicious misinformation.’5

I first met Graham when I was making a radio documentary about mental health and the media. He is Professor of Community Psychiatry at King’s College London and a world-leading expert on the subject of mental health stigma. 

I’ll lay my cards on the table. When I first set out to write this book, I decided that I’d try and get to the end without mentioning stigma at all. 

I find it a bit troubling how the subject of stigma has come to dominate so much of our discourse on mental health, especially via social media. A lot of this is led by (granted, well-meaning) high-profile individuals and celebrities who talk and tweet and post messages about mental health stigma and the problem with stigma and the need to reduce stigma. And the whole time we might just be looking in the wrong direction. 

It’s a conclusion reached by Graham Thornicroft, too. ‘The trouble with stigma’, he explains, ‘is that it’s such a vague, fuzzy concept and it hasn’t left us able to do anything to reduce social exclusion.’ He reflects on a story from his own life. When he was just three years old, his mother sank into a painful depression. Graham went to live with his grandparents while she was given a series of treatments. The drugs didn’t help her at all, he says, but she was eventually given electroconvulsive therapy (ECT), which did help her a great deal, and a year after his mother first became unwell the family was reunited. Graham’s mother was employed as a district nurse but for the whole time that she was undergoing those treatments she never told anybody at her work about what she was going through, or why she needed time off. She was afraid that if she did she would be treated as damaged goods, that her position at work would become precarious. That was over fifty years ago, yet it’s a fear many people still have today, and not without foundation. Every year in the UK three hundred thou- sand people lose their jobs due to mental health issues.6

‘People’s life experiences are being limited,’ says Graham Thornicroft, ‘because of public and occupational perceptions.’ 

So now we have something to tease apart because what we’re really talking about mightn’t be stigma at all. 

Stigma refers to a person’s feelings of shame, disgrace or inadequacy due to their circumstances. Getting sacked from work could certainly lead to such feelings. So too could being shunned or ridi- culed by those around us. But in these scenarios stigma is the result, not the cause. The psychologists Anne Cooke and Dave Harper argue that stigma individualises what may in fact be issues of prejudice and discrimination. 

‘We don’t talk about the stigma of being a woman, or of being black,’ they explain. ‘We talk, quite rightly, about sexism and racism.’7 

Why then are we so quick to internalise matters where our mental health is concerned? Well, one theory is that the current raft of public education and anti-stigma campaigns actively encourages us to think in this way. 

In 2016, the BBC ran a season of programming on its flagship BBC One channel called In the Mind. Announcing this schedule, James Harding, Director of BBC News, said: ‘This is a moment when we stop and reflect on one of the big issues of our time, one that touches all of us. We will report and examine – with all the BBC’s expertise, insight and understanding – on what’s really happening in mental health.’There were documentaries, a mental health-related story-line on EastEnders and a series of other news and talk-show items. One of the most high-profile programmes in this schedule was a documentary presented by the celebrated actor, comedian and all-round national treasure Stephen Fry, entitled The Not So Secret Life of the Manic Depressive: 10 Years On. This was a sequel to the 2006 Emmy award-winning documen- tary Stephen Fry: The Secret Life of a Manic Depressive, in which Fry talked about his own painful difficulties in experiencing very high and low moods. 

The sequel begins with footage of Stephen Fry in 2012 in Kampala, Uganda, where he was filming another documentary, interviewing the Ugandan Ethics and Integrity Minister, Simon Lokodo – who in Fry’s inimitable words was ‘a foaming, frothing homophobe of the worst kind’. He had proposed a bill to make homosexuality a capital offence. In the footage we see Lokodo jabbing a threatening finger towards Fry, a gay man, and shouting him down, stating that he will be arrested if he tries to promote his homosexuality or recruit others, and so on. All vile, nasty stuff. Fry is visibly shaken as he leaves the interview. 

Cut to the present day and Stephen Fry is in the office of his psychiatrist, Dr William Shanahan. Together they recount the events that followed that distressing encounter. Fry recalls how he returned to his hotel feeling the lowest he had ever felt. ‘I paced around trying to analyse what it was that had disappeared from me. It seemed as though the whole essence of me had disappeared. Everything that was me was no longer there. Just some feeling came over me that this was the end.’ 

He had vodka and also pills of some kind in his room. ‘I just carefully lined up I don’t know how many of those damned pills,’ he says, ‘and drank all the vodka that there was there with the pills. The next thing I remember was that I’m on the floor, [and] an embarrassed member of the hotel is looking down at the carpet in the doorway [saying], “We’ve just got to get him to a hospital.”’ 

Back in the UK two days later, Fry decided he needed to see a psychiatrist. ‘I have a dim memory of arriving here,’ he says, at which point Dr Shanahan takes over: ‘When you arrived, let me remind you [you were] sorry that you were still alive. And wanting to die. And feeling that you should have died.’ 

So a truly horrible experience for a person to suffer. And we learn that Fry was admitted for a short stay in hospital.

‘At the age of fifty-six,’ a narrator tells us, ‘Stephen got a formal mental health diagnosis of cyclothymia, mood swings that lead to disturbed behaviour. But with the diagnosis came the medication and that immediately made him feel much better.’ 

End of scene. 

Watching this documentary at the time, it seemed odd to me that no airtime was given over to the psychiatrist discussing the possibility with Stephen Fry that his plummeting mood and desperate cry for help were likely to be connected to the terrible thing that had just happened to him. 

He had been thousands of miles from the safety and security of his home, on a presumably gruelling work schedule, and was forced to try to defend his very existence to a hideous and powerful man, who from the comfort of a ministerial office took delight in humiliating and threatening him, and – let’s not fuck about here – ultimately wished him dead. 

Now possibly none of that is enough to fully explain why Stephen Fry drank the vodka and took those pills, but I would argue that it almost certainly played a part. 

We have no idea what private conversations were shared between doctor and patient when the cameras weren’t rolling. Quite probably they did talk at length about such things. I hope so. My point is that the BBC TV programme did not. 

Following its broadcast there was some criticism levied against the BBC. An open letter written to the broadcaster by Peter Kinderman, Professor of Psychology at Liverpool University, and over one thousand other signatories – including high-profile academics, mental health professionals and mental health service users – stated that although the Fry documentary and other programmes in the In the Mind season were clearly well intentioned, they made the mistake of taking for granted the contested view that mental health problems are necessarily a manifestation of biological illness. 

The letter criticised: 

. . . a failure to acknowledge that the origins of problems, and the things that keep them going, are often not simply in the brain but in the events and circumstances of people’s lives – including poverty, urban living, migration, childhood abuse, bullying, racism and other forms of victimisation. This has been confirmed by a vast volume of research, and the evidence is in fact stronger than for the involvement of biological factors. Educating the public about this would not only increase understanding: research suggests that this kind of approach reduces stigma and, in many cases, is more helpful for those affected.9

Needless to say, fewer people have read the letter than watched the TV shows. 

‘Look at the politicians and policy makers shouting loudest about anti-stigma,’ says psychologist and author Dr Lucy Johnstone. ‘They’re the very people who are reinforcing the policies that are driving people crazy.’10

Like many people who have made mental health their life’s work, Lucy Johnstone experienced more than her fair share of dis- tress as a child and adolescent. She’s the sort of person whose way of coping with that was to lock herself away in her bedroom and voraciously read. This was the late 1970s when the anti-psychiatry movement was at full throttle. An idealist at heart, she was still in her twenties and a recently qualified clinical psychologist when she wrote her first book, Users and Abusers of Psychiatry. She’s been writing and working in the field ever since. I meet with her in our shared hometown of Bristol, where our talk quickly turns political – because if it’s impossible to speak about mental health without talking about stigma, it’s equally impossible to seriously consider stigma without talking politics. 

‘Every single government seems to have leapt on the anti-stigma campaigns,’ argues Johnstone. ‘Theresa May among others. But what are they doing to stop people being targeted by the benefits office? To the huge increase in inequality? The rise of zero-hours jobs? These are the things that drive people mad. It’s no kind of answer to say that as long as we’re happy to say we’ve got schizophrenia we’re making progress. It’s absolute nonsense. It’s insulting. And it’s politically motivated. Does the current government or the previous one want to talk about discrimination? No, they don’t. Do they want to make themselves look very well-meaning by talking about anti-stigma? Yes, they do.’

Since 2007, the Department of Health in England has provided funding for the Time to Change initiative: a national programme to reduce mental health stigma and discrimination, led by the charities Mind and Rethink Mental Illness. I’ve been involved in some of their work myself over the years, including the annual Time to Talk Day – encouraging more public conversations about our mental health and wellbeing. 

That’s got to be helpful, right?

Yes. Obviously, I think so or else I wouldn’t get involved. But I’m also concerned that the emphasis of such campaigns too often seems to begin and end with raising awareness, while doing little to improve knowledge. Sure, it’s a good thing if someone feels less inhibited about disclosing to a friend or colleague that they’re having difficulties. But if those difficulties are extremely serious – if they’re feeling hopeless, if their life feels unlivable, if they can see no way out – then it’s no easy thing for their friend or colleague to know how to respond, let alone how to get the right help.*

Even so, Time to Change almost certainly does help some people who are experiencing mental health difficulties by improving the attitudes of others. It’s tax-funded so it needs to prove its worth. On its website it reports: ‘Our national surveys show the overall attitude trend between 2008 and 2016 was positive with a 9.6% change – that’s an estimated 4.1m people with improved attitudes.’11 That sounds pretty good. Though I’d suggest that a single number valuation assigned to a variable as nuanced as ‘improved attitudes’ demands a bit of unpacking. 

If we dig into some of the surveys underpinning this figure, as Professor Graham Thornicroft and colleagues have done, we will see that no distinction is made between more common mental health diagnoses and less common ones. So we should not assume, for instance, that any changes in public attitudes apply equally to something as culturally laden with damning stereotypes as ‘schizophrenia’ as they do to more commonly experienced and talked about mental health problems such as ‘depression’ or ‘anxiety’.12

In fact, the It’s an illness like any other and you wouldn’t tell me to pull myself together if I had cancer/a broken leg/diabetes message (which forms the bedrock of almost all mental health anti-stigma campaigns) may actually increase prejudice against people with a schizophrenia diagnosis because although we’re less inclined to blame people for their strange behaviours if we believe they’re suffering from a brain disease, we’re also more likely to fear and avoid them and to see them as dangerous and unpredictable.13

It’s for these reasons that many people (including, I would imagine, many of the thousand-plus signatories of the BBC complaint) reject the standard government-endorsed anti-stigma message, along with its biological and medical assumptions. There are also plenty of reasons why the government might be rather keen to stick with it. Aligning themselves with the bio- medical model of mental distress means that they’re not stuck with the irksome problem of how to deal with bizarre and disturbing behaviour that doesn’t fall under the remit of criminal law. More convenient, perhaps, to label it as a ‘medical problem’ (just like cancer and diabetes!) and so effectively remove it from governmental jurisdiction.14

It’s a complicated situation that cannot be adequately communicated with a simple, celebrity-spearheaded soundbite. 

The truth is that schizophrenia isn’t remotely like a broken leg. 

However, we should be cautious not to throw the biological baby out with the sociopolitical bath water.**The physical/mental health analogy mightn’t be completely flawed. 

As the psychiatrist and blogger Dr Alex Langford explains, a diabetes comparison to mental health problems is actually pretty useful so long as we focus on Type 2 diabetes. He compares this to depression: 

Whereas Type 1 always involves the same underlying problem – destruction of pancreas cells leading to a lifelong need for insulin – Type 2 is a more variable biological state, just like depression. In Type 2 diabetes, high sugar levels are primarily caused by the body not being as responsive to insulin as it should be, but insulin levels are often low as well. Other hormones like glucagon and incretin are out of kilter too. This is akin to depression, in which we know that it’s not just serotonin that’s important at the biological level. Other neurotransmitters like noradrenalin and dopamine (and many others) are all involved . . . Also, neither Type 2 diabetes nor depression have one simple cause. Both are caused by a collection of individually small risk factors. With diabetes the big dangers are things like obesity, high cholesterol, poor diet and sedentary lifestyle, whereas with depression it’s things like recent adverse life events, a tough childhood and a lack of social support. Diabetes and depression both have a huge genetic component, but neither has a single-gene cause.  

So there are certainly some similarities. 

Also, by considering depression and diabetes in this way Langford notes the irony of some people still insisting that those of us with mental health issues should pull ourselves together. He comments, ‘It’s probably easier to shift your Type 2 diabetes by avoiding junk food, exercising and losing weight than it is to ease your depression by taking away life stressors like a busy job and magically undoing an abusive childhood.’15

But what to do about mental health stigma?

Well, Dr Lucy Johnstone has a pretty radical suggestion: ‘The quickest and easiest way of getting rid of stigma is to get rid of psychiatric diagnoses.’ 

So we should probably talk about diagnosis…

 

* If you are concerned that someone you know might be considering ending their life by suicide and you don’t know what to say or do about it, there’s an excellent training resource created by the Zero Suicide Alliance. It’s free to do. It takes twenty minutes. You can find it on their website: https://zerosuicidealliance.com/

** I always bathe my children in sociopolitical bath water. It’s surprisingly gentle on the skin and makes bathtime conversations infinitely more interesting. 

 

Notes

1     This quotation from Erica, along with my reflections on how her story made me feel, formed part of the BBC Radio 4 documentary The Mind in the Media. https://www.bbc.co.uk/programmes/b08hl265

2     Brekke, J. S., Prindle, C., Bae, S. W., and Long, J. D., ‘Risks for Individuals with Schizophrenia Who Are Living in the Community’, Psychiatric Services 52 (2001), 1358–66. doi: 10.1176/appi.ps.52.10.1358

3     You can find out more about Recovery in the Bin at their website: https://recoveryinthebin.org/

4     For a readable discussion of these figures, see the Living With Schizophrenia website: https://www.livingwithschizophreniauk.org/ information-sheets/can-you-recover-from-schizophrenia/. For a more robust meta-analysis on recovery look at: Jääskeläinen, E., Juola, P., Hirvonen, N., McGrath, J. J., Saha, S., Isohanni, M., Veijola, J., and Miettunen, J., ‘A Systematic Review and Meta-Analysis of Recovery in Schizophrenia’, Schizophrenia Bulletin 39:6 (2013), 1296–1306. https://doi.org/10.1093/schbul/sbs130

5     This quotation is from Graham Thornicroft’s book Shunned: Discrimination against People with Mental Illness (OUP, 2006). The subsequent quotations are from my own interview with him in February 2017.

6     Statistic from ‘Thriving at Work: a Review of Mental Health and Employers’, commissioned by the UK government and published in 2017.

7     This full essay by Anne Cooke and Dave Harper can be found at http://discursiveoftunbridgewells.blogspot.co.uk/2013/05/when-ads-dont-w...

8     Quote from: https://www.bbc.co.uk/mediacentre/latestnews/2016/in-the-mind

9     A copy of the full letter can be found at: http://peterkinderman.blogspot.co.uk/2016/02/open-letter-about-bbc-cover...

10  The quotations from Dr Lucy Johnstone throughout this book are taken from my interview with her in February 2018.

11  Time to Change statistics from: http://www.time-to-change.org.uk/about-us/our-impact

12  Henderson, C., Robinson, E., Evans-Lacko, S., Corker, E., Rebollo- Mesa, I., Rose, D., and Thornicroft, G., ‘Public Knowledge, Attitudes, Social Distance and Reported Contact regarding People with Mental Illness 2009–2015’, Acta Psychiatrica Scandinavica 134 (suppl. 446) (2016), 23–33.

13  Kvaal, E. P., Gottdiener, W. H., and Haslam, N., ‘Biogenetic Explanations and Stigma: A Meta-analytic Review of Associations among Laypeople’, Social Science and Medicine 96 (2013), 95–103; Angermeyer, M. C., Holzinger, A., Carta, M. G., and Schomerus, G., ‘Biogenetic Explanations and Public Acceptance of Mental Illness: Systematic Review of Population Studies,’ British Journal of Psychiatry 199 (2011), 367–72.

14  This argument is made by Joanna Moncrieff in A Straight Talking Introduction to Psychiatric Drugs (PCCS Books, 2009). This is one of a series of Straight Talking Introductions to Mental Health Problems edited by Richard Bentall and Pete Sanders. I recommend them as an accessible way into critical thinking about psychiatry and mental health. We’ll meet Dr Moncrieff in person later in this book.

15  The full post, which includes more clinical details than I’ve quoted here, can be found at https://psychiatrysho.wordpress.com/2015/06/10/is-depression-really-like...

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