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28 December 2022

Are you mentally ill, or very unhappy? Psychiatrists can’t agree

As rates of diagnosis rise, a fierce debate rages in psychiatry. Are we experiencing a parallel pandemic, or having a rational response to a traumatic world?

By Sophie McBain

One afternoon in December 2004, Samantha* left her house in northern England and walked to the nearby river. She tried not to think about her five young children, alone at home. She wanted to plunge into the water; she didn’t know how to swim.

Alarmed by her mother’s absence, Samantha’s 11-year-old daughter dialled 999, and the police found her on the riverbank. She was transferred to a psychiatric hospital, where she spent four days curled up in a ball, crying. She was already known to social services: Samantha had a violent ex-boyfriend and had been abused as a child before being taken into care at the age of 12. It was difficult to know how to be a good mother when she had never been mothered herself.

Shortly afterwards a psychiatrist, asked by the local authority to assess her, diagnosed Samantha with borderline personality disorder (BPD). Last year Samantha read the report to me over Zoom. By then we had been speaking for three months. She was warm and solicitous – “But anyway, how are you?” she always asked – but now her voice was hard with rage. The report noted her “lack of a sense of personal responsibility” and “poor impulse control”; it accused her of “feigning a mental disorder while in hospital”.

“But that’s not me, that’s not who I am!” she remembers telling her solicitor, terrified. A social worker told her she needed to achieve greater “emotional stability”. (“If you could just close your eyes for a second and imagine someone taking your children away,” Samantha asked me, “how would you feel?”) But the psychiatrist deemed her disorder “untreatable”, and her children were removed.

During her family court proceedings, Samantha’s solicitor suggested she read the Philip Larkin poem “This Be The Verse” (“They f*** you up, your mum and dad…”). After that she read They F*** You Up: How to Survive Family Life by the psychologist Oliver James. Soon she was reading every psychology and self-help book she could find. As we spoke, one of her arms frequently disappeared into her Zoom background of pink hibiscus flowers and re-emerged with another book. Deemed ineligible for NHS therapy, she started paying for help privately.

In 2015, ten years after her children were taken from her, a psychologist gave her a new diagnosis: complex post-traumatic stress disorder (PTSD). It confirmed what Samantha was coming to realise herself: there was nothing wrong with her personality, her problems could all be linked to what had happened to her. “While it was a relief, I was really angry,” she told me. “Because that label [BPD] was used to hurt me and my children. It destroyed our lives.”

By then, she was back in touch with four of her children, who had often run away from their foster homes to be with her. She campaigned on mental health and was running a peer-support group. She had also joined Twitter, where she is an opinionated presence, and got into a conversation – well, an argument at first – with a psychologist who upended her world-view again. What if Samantha’s diagnosis of complex PTSD wasn’t quite right, either? She had been suicidal, yes: but who in her position wouldn’t have felt desperate? Had she ever been mentally ill?

Samantha had just stepped into one of the fiercest rows in British psychiatry.

[See also: What’s fuelling the rise in adult ADHD?]

In recent months there has been extensive coverage of an unfolding mental health crisis. Government figures suggest that, since the start of the pandemic, the number of adults with depression has doubled to one in five. Referrals for children have also doubled: 200,000 under-18s were referred to NHS mental health services in April-June 2021. Has Covid sparked a parallel wave of mental illness – or is such widespread suffering a natural response to the months of isolation, uncertainty and daily death counts? The debate in psychiatry is in part an argument over how we address this shadow pandemic: some argue that what looks like a health emergency is better understood as mass unhappiness.

The psychologist Samantha met on Twitter was Lucy Johnstone. She is part of a close-knit group of British psychiatrists, psychologists and patients who reject the idea of mental illness. They argue that diagnoses are scientifically invalid and harmful because they pathologise understandable reactions and falsely imply that there are medical solutions. “Mental illness is not a valid concept,” Johnstone told me – instead, we should be talking about “mental distress”.

She argues that the medicalised language of disorders and symptoms creates a false distance between a person’s feelings and the cause of their distress, whether it’s trauma, abuse, poverty, or even unrealistic cultural expectations.

Johnstone, who is in her fifties, with a clipped, no-nonsense manner, is frequently infuriated by the way we talk about mental health (the phrase itself can elicit a groan: she prefers “feelings”.) After we first spoke on Zoom, she sent me a link to an article reporting the rise in mental illness among those who had lost income during the pandemic. The government responded by affirming plans to invest in mental healthcare; Johnstone’s view is that it should tackle the root problem – poverty, not illness. She would emphasise that people in distress deserve support – but that mental illnesses do not exist in the same way physical ones do. “If you tell someone, as an established fact, ‘You have bipolar disorder, you have schizophrenia, you have a personality disorder,’ really, you’re telling them something untrue. And that has consequences for people’s identity, life, insurance, relationships. It’s the major crisis of our time in some ways.”

Johnstone grew up in Lincolnshire and describes herself as a “classic example” of someone from a stable, middle-class family who was nonetheless deeply unhappy as a child. She started reading psychology books at 12 and studied the subject at Oxford University in the 1980s. There, she was inspired by the work of anti-psychiatrists such as RD Laing, the 1960s countercultural icon who described insanity as a rational reaction to an insane world. Throughout her career in adult mental health, Johnstone has frequently clashed with colleagues and peers. On Twitter, these debates now rage in public view.

The UK is in many ways an international pioneer in mental health: it has an active survivor community (a network of current and former patients), a history of radical thinking, and a healthcare system that is receptive to non-medical approaches. It has also become engaged in a bitter culture war – between those who want to abandon psychiatry’s disease model (the “critical” psychiatrists and psychologists) and those who do not.

Social media has given patients a louder voice, enabling them to communicate directly with professionals. It has also fuelled vicious polarisation. Prominent figures accuse one another of endangering patients, engaging in pseudoscience and bullying and cyber-mobbing their critics. Several interviewees advised me against writing this piece: the subject was too controversial, they said; nothing good could come from kicking this hornet’s nest.

The debate is fierce because there is much at stake. It concerns not only professionals arguing over the validity of their careers, but people trying to make sense of the darkest chapters of their lives. There are those who argue that psychiatry has coerced them into mind-altering, life-shortening treatments and imposed stigmatising labels. And there are those who say it saved them.

[See also: Why I’m wary of the ADHD industrial complex]

Psychiatry’s model for classifying disease owes much to Emil Kraepelin (1856-1926). A contemporary of Sigmund Freud, he aimed to create a taxonomy of mental illness in the same way that his brother, a naturalist, could classify animals and plants. Kraepelin believed that all mental illness was genetic or physiological in origin, and his Compendium of Psychiatry (1883) became the discipline’s foundational text. Problems such as heartbreak or overwork were not the reason people became mentally ill: they were only symptoms.

We have since made disappointing progress in uncovering the neurobiological basis for many mental illnesses. We have found explanations for degenerative diseases such as Alzheimer’s or Parkinson’s; but no medical test can confirm a condition such as depression or schizophrenia. Instead, psychiatrists often go on what their patients tell them, or what they observe. They make diagnoses with reference to the Diagnostic and Statistical Manual of Mental Disorders, now in its fifth edition (DSM-5), or a similar textbook compiled by the World Health Organisation, which both group disorders according to clusters of symptoms. The books are deliberately neutral on the causes of disorders.

“When we use the word ‘diagnosis’, people imagine you’re identifying a cause,” the psychiatrist Sami Timimi told me. Timimi is a member of the Critical Psychiatry Network, which was founded in Bradford in 1999 and now has a membership of around 350 psychiatrists, most of whom are in the UK.

Identifying a cause isn’t always the focus in general medicine (take, for example, a condition such as migraine) but it’s often the goal: it’s why you might feel relief, on presenting with chest pain, to know that you are suffering from acid reflux rather than a heart attack. “But in psychiatry, diagnosis is just a descriptive term. And it’s a poor descriptive term. So I don’t think we can make any progress until we get rid of the phrase ‘diagnosis’,” Timimi said.

The sense in psychosis: the anti-psychiatrist RD Laing described insanity as a rational adjustment to the world. Photo by Ben Martin/Getty Images

During his training, Timimi looked at the way Western doctors have exported their psychiatric models overseas; a British-Iraqi, he noted how the field was often shaped by racist and eugenicist beliefs. Multiple studies have shown that in developing countries, where psychiatric care is limited, patients who are diagnosed with schizophrenia are more likely to make a full recovery than those in the West. Researchers speculate this may be due to cultural differences: people in countries such as the UK tend to view psychosis as a disturbing, potentially lifelong illness. When Timimi came to specialise he chose child psychiatry, because in the 1990s it was unusual to prescribe medication or give diagnostic labels to under-18s. He then watched “in horror” as child psychiatry became more medicalised, too.

When people say mental illnesses are just like physical ones, they often mean well – they want to say that mental suffering should not be minimised. But consider the similarities between depression and high blood pressure: both can be caused by stress and disproportionately affect those living in poverty; the exact point at which healthy blood pressure becomes unhealthy is somewhat arbitrary, just as there is no scientific point at which persistent sadness becomes depression.

The difference is that a machine can diagnose the former, while most psychiatric diagnoses require a subjective judgement. If someone meets all the criteria for depression but has lost a child, are they better understood as simply grieving? In 2013, the DSM-5 removed the “bereavement exclusion” so that doctors could diagnose depression for those in mourning.

That psychiatrists frequently disagree is evidence of such subjectivity. The patients I spoke to who were most opposed to diagnosis had been given multiple labels and could recite them like a shopping list. “Bipolar, schizophrenia, treatment-resistant schizophrenia, psychosis, psychotic depression,” said one young woman. “Then suddenly it changed to borderline personality disorder.” The diagnoses felt meaningless to her – they kept changing but she was the same.

The most complicated factor to consider is what it feels like to be told you have a mental disorder. As Timimi puts it: “The object of study, which is the mind, is not the same as the object of study when it’s a kidney. The kidney doesn’t worry about the future. The kidney isn’t going to abandon me if I read out a set of kidney results.” He observed that the language psychiatrists use can have a huge impact on a person’s self-perception: there’s a big difference, for instance, between being told that you are ambitious and being told you are suffering from delusions of grandeur.

[See also: There is no such thing as the self]

Psychiatry’s disease model has never been uncontested, but the influence of critical movements has fluctuated. The anti-psychiatrists of the 1960s and 1970s developed their ideas in opposition to the oppressive nature of psychiatry then, with its terrible asylums. From the 1980s more biological approaches became resurgent. A new generation of anti-depressants such as Prozac raised hopes of a “chemical cure”; the US Congress declared the 1990s the “Decade of the Brain”, investing billions in research aimed at solving mental ill-health.

Today’s critics point to the failure of this research, and to the way successive editions of the DSM keep widening the scope of diagnosis. The argument against mental illness is also an argument against psychiatry’s mission creep: once, only the most desperate were seen as mentally ill but if, as the charity Mind reports, one in four Britons experience a mental health problem in any one year, are we now mischaracterising the challenges of living?

When the most recent edition of the DSM was published in 2013 (the next is due in March 2022), it was met with a strong backlash – especially in the UK. The British Psychological Society (BPS), which has 50,000 members, condemned diagnosis altogether. Lucy Johnstone co-wrote a BPS “position statement” with ten others, demanding a “paradigm shift… towards a conceptual system that is no longer based on a disease model”.

One of the most high-profile critics of the DSM-5 was Allen Frances, the American psychiatrist who oversaw the development of the DSM-4. In 2013, Frances published a book called Saving Normal, which argued that for decades the DSM (and Big Pharma) had driven rampant diagnostic inflation. (He wrote that he had tried to be conservative when working on the DSM-4, but that it nonetheless triggered “epidemics” of certain illnesses: ADHD diagnoses tripled in its wake; autism diagnoses increased 20-fold; and, among children, bipolar disorder diagnoses increased 40-fold.)

Nonetheless, Frances has little time for critical psychologists, dismissing their statements as “pie-in-the-sky stuff with no real-world foundation”. When we spoke on the phone, he said that the DSM’s flaws are not reason enough to abandon diagnosis. Psychiatrists need these criteria to help determine if a patient’s problems are the result of a physical illness, he said, or a reaction to illegal or prescription drugs, and to guide treatment.

But he will admit that the manual is a crude tool: “I don’t trust people who worship the DSM as a bible. That’s a reductionistic way of looking at things. As Hippocrates said 2,500 years ago, it’s more important to know the patient who has the disease than the disease the person has,” he said. In Frances’s view, critical psychiatry would be better thought of as a complementary rather than a contradictory position: “Conceptually, it doesn’t take a genius to say we should have a model that stands on four legs: biological, psychological, social and spiritual.”

What would it look like if we abandoned the idea of mental illness? In 2018, Lucy Johnstone and the psychologist Mary Boyle published a model they said could provide an alternative to diagnosis: the “Power Threat Meaning Framework” (PTMF). Developed with former patients, it is based on inter- related questions, such as: how is power operating in your life? What kind of threats does this pose? Instead of symptoms, the framework invites people to think of “threat responses”; instead of disorders, there are “general patterns” of behaviour.

Samei Huda, a Scottish consultant psychiatrist, told me it was “fantastic” that some people found the PTMF helpful, but didn’t think it was a substitute for diagnosis. “It’s not ready for prime time,” he said, pointing to a lack of evidence and data. “We don’t have enough evidence yet for what problems it can help with, how helpful it will be and that it can give us information on outcomes.”

The PTMF does not preclude medication, though it does suggest a different attitude to drugs. In this, Johnstone is influenced by the British psychiatrist Joanna Moncrieff, who is fiercely critical of the way psychopharmaceuticals have been researched and sold. She believes we should think of them not as “treatments” but as blunter substances that may have useful effects (such as improving sleep) alongside harmful ones. In this sense, they are closer to a drug like alcohol: a few drinks might ease your social anxiety, but at a cost.

Medication remains a contentious area. The American psychologist Nev Jones has noted that, within activist communities, “pill-shaming” is not uncommon. Jones, who is based at the University of Pittsburgh, suffered psychosis over a decade ago when she was in her late twenties and studying for a PhD in philosophy, and was diagnosed with schizophrenia. It took years to recover, but when she did, Jones decided to devote her career to studying psychosis. Mental health professionals seemed not to grasp its diversity and strangeness, she thought, and assumed the same treatment would work for everyone.

When we spoke over Zoom, I asked Jones what had aided her recovery. She didn’t hesitate: “empowerment”. The worst part of falling ill had been becoming a psychiatric patient. “The problem wasn’t: ‘You’ve got schizophrenia, or you’ve got psychosis’… The deep thing was losing all meaning in my life, all social value. And the healing thing was being able to enter into conversations as an equal.”

It wasn’t Jones’s first experience of schizophrenia. A relative had been diagnosed with it, too, and for much of her life has been unable to communicate. It angered Jones that those critical of diagnosis and medication did not consider the most intractable cases. “You have to acknowledge that there’s a biological component here. These patients are not self-manufacturing the extreme disorganisation and association-clanging that psychiatrists would describe as the hallmarks of really severe thought disorder.”

Many psychiatrists would agree that it is wrong to conclude that biology is never the underlying cause of mental illness. But perhaps what causes most harm is when a professional imposes their world-view on a patient. Some activists told me they felt that critical psychiatry overlooked (and even patronised) people who found a diagnosis and medical treatment helpful; some feared the academic debates ignored the bigger issues faced by those in crisis – discrimination, poverty, the struggle to access any kind of care. Already, some psychiatrists say they will ask their patients if they find a diagnosis useful and follow their lead. What looks like a science question – an investigation into the nature of illness – might ultimately be more about power.

[See also: What online discourse gets wrong about therapy]

Brett Lee, a young car mechanic from Whitstable, suffered a mental breakdown six years ago. His behaviour became so erratic that his parents and sister worried that he would be sectioned. A mental health crisis team was called to their home several times, but the arrival of strangers asking odd questions, scribbling in their notebooks, trying to get him to take pills, only fuelled Lee’s paranoia. After a few weeks, he was hospitalised in Canterbury.

This hospital trust was participating in an NHS-supported pilot of Open Dialogue, an approach pioneered in Finland in the 1980s. This is compatible with diagnosis and medication, but can also use neither. The principles are simple: the person in crisis, those close to them, and a small group of support staff work together to address the problem. Staff do not discuss patients in their absence, and at meetings every perspective is given equal weight. Research in Finland has suggested that people supported in this way spend significantly less time in hospital, require less medication, and are less likely to relapse.

At Canterbury, Lee met Yasmin Ishaq, the hospital’s Open Dialogue lead. Ishaq has worked as a psychotherapist and social worker for 26 years, and no longer uses the word illness in relation to the mind: she prefers “distress”. She said she was influenced by people like Johnstone, and by her own experience of caring for her brother, who suffers from serious mental health problems. It infuriated Ishaq that, when he was hospitalised recently, the staff did not listen to her until she told them she was a psychotherapist. Ishaq felt that being his sister was expertise enough.

Ishaq invited Lee to join a meeting with his family, a doctor and social worker. Together they explored questions such as whether Lee should take medication: he had been reluctant, but his family saw that the pills were helping him sleep, and when he slept something of the old Brett returned. They persuaded him to continue. They did not seek a diagnosis, and avoided words like “psychosis” or “paranoia”. Lee talked instead about the anxiety he had worked so hard to conceal, which had been driving his workaholism. When he left hospital after ten days, the meetings continued – weekly at first, and then less frequently as Lee reduced his medication and, over the next two years, returned to work. There were bad days, but he felt stronger than before. It helped to know that he had been the architect of his own recovery.

[See also: The voice in your head]

Soon after the Power Threat Meaning Framework was published, Samantha decided to apply it to her own life. It was the first time she’d been prompted to tell her own story. She wrote about the abuse she had suffered, and how she had formed “a subservient relationship with a controlling psychiatric system in order to access support”. One of the PTMF questions was: “What are your strengths?” No one had asked her that. She wrote of her “intelligence and resilience”, and her “beautiful family”.

When we spoke, Samantha’s grandson was often with her. He was born in 2010, and she remembers her daughter handing him to her when he was just three days old. “Because my children had been taken away, I was terrified of attaching to anyone or anything. But he just looked at me and gave this little ‘yap’ and that was it.” He taught her how to love.

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Samantha no longer believes in diagnosis and rejects the idea she has complex PTSD; trauma had affected her deeply, she acknowledged, but so had her experiences of inequality. Even well-intentioned campaigns such as Mental Health Awareness Week irritate her: could we not talk instead about how diagnoses can harm people, she asked me, by erecting barriers between the “sick” and the “well”?

Clinically vulnerable, Samantha rarely left home in the first 18 months of the pandemic, and when she did, often felt anxious. She still speaks to her therapist often, but they use a different language now. “I don’t have symptoms,” she told me. “I am a normal person who is responding and reacting in an understandable way. It makes me feel human again.”

*Some names have been changed

[See also: I’m a public health doctor – I know austerity is why people are struggling]

This article was originally published on 09 February 2022.

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This article appears in the 09 Feb 2022 issue of the New Statesman, Sunak's Game