Heart of the matter

Erica, a young journalist, is convinced that her coil is in fact a camera used by MI5 to track her. Amit refuses to take his prescribed medication, believing it contains a poison, so Nathan Filer has to forcibly medicate him. Brigid is obsessed with a statue of the Virgin Mary, which she believes to be moving. As her mental health deteriorates, lack of support pushes her and her children into poverty. These are just some of the powerful accounts which make up Filer’s first non-fiction book, The Heartland: Finding and Losing Schizophrenia, which delves into the complexities and paradoxes of a diagnosis of the mental disorder.

Working at a psychiatric hospital at the beginning of his career in mental healthcare, Filer found himself writing the word “psychotic” without fully grasping what it meant; his only understanding came from films, books and TV featuring characters in asylums and madhouses. These portrayals flooded the discourse about psychosis with harmful misconceptions. It’s these misrepresentations that Filer challenges through storytelling to change the way we view mental illness.

Psychosis, put simply, is the loss of contact with reality. One in 100 people will experience psychosis at some point in their lives. It can come with taking recreational drugs, but it can also be a response to trauma. Losing touch with reality is experienced through hallucinations and delusions like we see in the stories of Erica, Brigid and Amit, who believes the water supply to his hospital room is deliberately contaminated. But psychosis is only one possible feature of so-called schizophrenia. Filer uses the term “so-called” to remind us of the debate surrounding this diagnosis and its lack of a fixed definition.

Readers of the Costa first novel award-winner got in touch with Filer and shared their own experiences of living with the condition

After reading the fictional account of schizophrenia in Filer’s debut novel The Shock of the Fall – although the protagonist’s condition remains undiagnosed – readers of the Costa first novel award-winner got in touch with Filer and shared their own experiences of living with the condition. Some were different, some were similar, but “they rarely had that beginning, middle and end that novelists have the luxury to craft”, he says. The Heartland is a product of these conversations and the relationships that started to form as a result.

“Hearing these stories raised more and more questions for me and non-fiction felt like the way to handle that. I think the two forms have a lot in common. Essentially I’ve approached The Heartland as a story-teller – to tell the stories of the people who were so generous in coming to me and sharing those stories.”

In the book, Filer sensitively portrays the “whole person” rather than a “limited case study” so that he can “create a situation where the reader would have an intimate relationship with them like we do with characters in novels”.

It’s the synthesis of intimate story telling and Filer’s unobtrusive presence in his discussions with experts and the people he meets that makes the book so powerful. “When you meet with somebody and you spend hours and hours talking with them and hearing their story, you essentially become a part of that story.”

He refers to a passage in the book where a mother, whose son was diagnosed with schizophrenia, gave Filer a box of paperwork related to his death. Filer uncovers photographs and school certificates and shares them with her.

“At that point, as the writer, I became part of the story and so I appear on the pages, but for the most part I wanted to step back and not be an intrusive presence, so you would feel very close to the people whose story I’m telling.”

“Today mental health diagnoses can start to feel a little bit like brands, with the more ‘popular’ brands, such as depression and anxiety, being marketed and monetised to a far greater extent.”

Developing empathy, as we do when reading The Heartland, “is central to understanding the kind of distressing experiences that we call mental illness”, Filer says. He draws the comparison between his work as a mental health nurse and novelist – “both demand a great deal of empathy to put ourselves into the experience of somebody else… If you pick up a book of maybe 300 pages, you invest a lot of time into walking alongside somebody who maybe in real life you might cross the road to avoid.”

Filer says psychosis and schizophrenia are often ignored in mental health awareness and anti-stigma campaigns. “Today mental health diagnoses can start to feel a little bit like brands, with the more ‘popular’ brands, such as depression and anxiety, being marketed and monetised to a far greater extent.

“This results in the publication of huge numbers of self-help books and the development of new therapies, while less marketable brands such as the so-called personality disorders suffer from diminished investment – and so yet another inequity is forged.”

He stresses: “When I say ‘popular’, I don’t mean desirable, I just mean they get more public attention and more sympathy and resources go their way. It’s great that we’re talking openly about the kinds of things that lead to the diagnosis of depression and anxiety but we’ve probably got a way to go before people are so happy to talk about psychosis and so-called schizophrenia. Although interestingly of course they do still exist on this same continuum.”

Filer admits he wanted to avoid mentioning the issue of stigma in the book, because it dominates so much of the conversation about mental health. “I think that anti-stigma campaigns have done really good work in broadening the conversation but I do think they do have a tendency to internalise what is often a social issue.”

In The Heartland he quotes from a book by psychologists Anne Cooke and Dave Harper. “We don’t talk about the stigma of being a woman, or of being black… we talk, quite rightly, about sexism and racism.”

Filer says: “Over the past three or four decades there has been a trend towards pathologising more and more human experiences, resulting in a staggering proliferation in official psychiatric diagnosis. It’s no coincidence that this started under Thatcher and Reagan and the rise of the capitalist neoliberal agenda that began to redefine citizens as consumers and characterise poverty as the fault of the poor.”

Mental wellbeing has become entangled with politics, he says. In the book he writes that it is easier to diagnose a panic attack in a young person “who’s falling apart while struggling to pay two thirds of their increasingly precarious salary to rent a mouldy room in a shared house… than countenance the possibility that the real sickness is located elsewhere”.

But the anti-stigma message “can be seen to serve the interests of people in positions of political power because it tends to equate mental health experience with physical experience. Whatever we call these experiences, if you want to give them medical names, we know that the distress is real.”

In the book’s chapter on causes, Filer explains that one of the strongest predictors of psychosis is relative poverty. The world’s most unequal nations, such as the UK and the US, have the highest prevalence of mental illness.

He says: “I think there’s a really important political message there because certainly the people on the bottom rungs of the economic ladder suffer most cruelly, but inequality is a source of mental stress and anguish for everyone living in unequal societies, regardless of their personal living standards… There are no winners where we allow for there to be losers. It’s in all of our interests to tackle those issues of poverty – it will be better for all of our mental health.”

It’s overwhelmingly clear from the accounts of so-called schizophrenia in the book that every individual experience is different. The heterogeneity of human experience is also seen in the experience of psychosis. For example, James, a soldier, believes he is a messianic figure – which is what a mental health professional may call a grandiose belief. But delusions aren’t always like this. Therefore, psychosis resists a panacea.

The medication debate is a very complicated and heated issue,” Filer says. Of course, anti-psychotic drugs have been great for some people. But it’s not always the case. “There’s no doubt that we medicate a lot sooner than we used to even 10 or 15 years ago – this is definitely a funding issue.”

A major message from the book is that as a society we need to make significant changes to support those who experience psychosis

Where anti-psychotic medication is prescribed too readily, it can have long-term damaging effects. Indeed, James believes the side-effects he experienced from anti-psychotics far outweighed any benefits. But it is favoured as a quicker, cheaper alternative to talking therapies, such as cognitive behaviour therapy; rather than eliminating psychosis, CBT changes a person’s relationship with it, “so the experience of hearing a voice is less frightening”.

A major message from the book is that as a society we need to make significant changes to support those who experience psychosis. A schizophrenia diagnosis, on average, shortens a person’s lifespan by 20 years. This is largely down to prejudice and social exclusion. Adjustments in our approach to schizophrenia would limit the number of deaths.

Filer says we have to broaden the conversation so mental illnesses “like schizophrenia aren’t seen as these big scary, alien concepts, but just as a different way of being human. There’s not a them and us – there’s only us. If we can really appreciate these kinds of experiences, like delusions and hallucinations, they’re not things that are only being experienced by people with serious mental illness. These are part of all of our lives all of the time. We all go through life with various delusions and fixed unshakeable beliefs. Many of us experience hallucinations of some sort or another, whether it’s hearing voices in our head or hearing our phone buzz in our pocket when actually no one texted. This is a continuum of human experience. And of course there are people at the more distressing end of that experience but they’re not fundamentally different in any sense.

“I do think conversation is the starting point because as these things become more important to people, they understand them more and they become more empathetic. The issue moves up the general agenda of public discourse, and eventually that starts to shape politics.”

He admits he’s “not a big planner” when it comes to his next writing venture. After all, it was the welcome response to his first novel that compelled him to write his second. “For whatever reason, for a number of years now, writing has always pulled me back. One creative project often just leads to another, so I’ll just be open to what might come.”

The Heartland: Finding and Losing Schizophrenia is published by Faber