One of the biggest causes behind the apparent rise of mental health problems could be the way we identify and diagnose them, says author Dr Lucy Johnstone, who has spent many years working in the NHS as a clinical psychologist and is now an independent trainer.
To the uninitiated, the current (medical) diagnostic system is based on an American Psychiatric Association-published book called DSM 5, or to give its full, seductive name ‘Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition’.
There is a similar manual published by the World Health Organisation, known as ICD, or the International Classification of Disorders.
It lists all the mental health issues anyone could ever suffer from and helps psychiatrists match ‘symptoms’ to diagnostic criteria and, hopefully, treatment.
Diagnosis is the foundation of the psychiatric system, both theory and practice, and as you may have guessed, the latest edition of DSM is the fifth, with updates being developed every few years by a committee of psychiatric experts and senior mental health professionals.
Over 400 different mental health issues are listed in DSM 5 under four broad categories: ‘psychotic’ disorders (schizophrenia, bipolar, paranoia); ‘neurotic’ disorders (depression, anxiety, anorexia); ‘personality disorders’ (borderline personality disorder, psychopathy); organic disorders (dementia)
But, as Lucy asserted in her recent talk at the December 2018 Thrive Conference, many of these listed issues, some existing and others recently expanded upon in the 2013 DSM 5 update, are actually expanding the field of official ‘mental illness’ and contributing to reports of an alarming rise of mental ill health.
Even more worryingly, there is no reason to suppose that these are scientifically valid categories in the first place.
The problem lies within the criteria contained within the DSM manual. Rather than listing precise symptoms based on medical research and shown to link to biological dysfunctions or signs, most so-called ‘mental disorders’, such as Borderline Personality Disorder (BPD) are based on subjective judgements, although the distress is very real.
‘(The DSM 5 BPD diagnostic criteria) are a long way away from what one would normally think of as medical symptoms…this is not “I have a rash, I have a pain, I have a stomach upset” This is simply a set of social judgements describing certain aspects of thinking, feeling and behaviour,’ said Dr Johnstone, giving an example of the fallibility of the DSM system.
‘Add in the well-known fact that many people who have been given this label have histories of extreme trauma and abuse, and these reactions, although problematic, become understandable. It’s not surprising that people with a history of abuse are angry and distrustful.
‘So, the argument would be that although the process is dressed up in medical language. these are social, subjective judgements about unusual and, from somebody’s point of view, undesirable ways of thinking, feeling and behaving.’
Already flawed, the 2013 update to the DSM series was mired in controversy and elicited outcries from many mental health professionals who criticised it for the unscientific approach to mental health diagnosis that Dr Johnstone highlights. The quotes below are illustrative of the controversy that ensued.
‘What I saw happening on these committees wasn’t scientific – it more resembled a group of friends trying to decide where they want to go for dinner. One person says “I feel like Chinese food” and another person says “No no, I’m really more in the mood for Indian food” and finally after some discussion, they all decide to go have Italian’. Klein and Garfinkel, both quoted in ‘Cracked: why psychiatry is doing more harm than good’, James Davies, 2013)
Dr Allen Frances, Chair of DSM IV committee said: ‘DSM 5 will radically and recklessly expand the boundaries of psychiatry…There is no reason to believe that DSM-5 is safe or scientifically sound.’ And: ‘There is no definition of a mental disorder. I mean, you just can’t define it. It’s bullshit’
Dr Steven Hyman, former NIMH director : DSM is ‘totally wrong, an absolute scientific nightmare.’
The Division of Clinical Psychology of the British Psychological Society even had their say in 2013, when they published a Position Statement entitled Classification of behaviour and experience in relation to functional psychiatric diagnoses: Time for a paradigm shift which called for an end to the diagnostic model of emotional distress.
But DSM 4 sold over a million copies since launching in 1994 and DSM 5, despite these failings, is expected to
do at least as well. Tens of millions of people will be diagnosed and treated over the next decade or two using the criteria described in damming terms above.
So why is this a problem? Surely getting someone diagnosed is helpful for recovery? Not so to a large extent, Dr Johnstone finds.
‘There is a great deal of research to suggest that psychiatric diagnosis obscures personal meaning, it damages your sense of identity…being mentally ill is not a valued personal identity. It undermines your agency – ‘that’s why I’m like this and there’s not a lot I can do about it’ – and it takes away hope as many so-called mental illnesses are said to be life long.’
Add this to the fact that many existing interventions for issues such as those labeled as BPD are ineffective (we’ve written extensively on why many current treatments don’t work) and the appalling rise in people suffering mental ill health becomes understandable.
People are being diagnosed through an unscientific process, and then treated with drugs that are no better than placebo in many cases, leaving people trapped in a hopeless cycle that too often lasts years or decades.
Underpinning some of these diagnoses is also the long-discredited idea that there is a chemical imbalance in the brain or some dysfunction in the body that causes mental distress. These assumptions form the basis of the many mental health campaigns that are seen in the media. The implication of the ‘illness like any other’ messages is that you are different, you are biologically flawed in some way, you need to rely on expert advice.
These campaigns are of particular concern for Dr Johnstone. “There is a lot of research to show that, at some level, this message, which carries the theme that you are biologically different – your genes, your biochemistry – increases stigma and decreases hope for recovery. It doesn’t increase people’s sense of agency – it doesn’t move them forward.”
It’s now easy to see how someone who has a diagnosis imposed on them can be sucked into a never-ending cycle of mental ill health and increasing lack of agency over their life, especially when mental health professionals, however well-intentioned, fail to question the diagnostic approach.
Plus, realistically, how many of us would feel able to challenge what a trusted therapist or doctor is telling us about ourselves? Not many.
In her talk, Dr Johnstone used a quote by survivor Beth Filson from a fascinating book about alternatives to current psychiatric models called Searching For a Rose Garden (Russo and Sweeney, 2016) to sum up broadly what we get wrong about mental distress, and what we can do change this.
“Until we are able to use our own words to tell our own stories, the context we find ourselves in – in this case, the psychiatric system – says our stories for us, and usually gets it wrong. In the context of the medical model, the story we learn to say is that we are ill.
“We begin to see ourselves as ill. We tell stories of illness, and the psychiatric system, and, by extension, society accepts illness as the story of our distress. Being able to tell your own story – not the illness story – sets a new social context – one in which mad people are seen in a new light….In part, healing happens in the re-storying of our lives..
“When he proclaimed…’You have a mental illness’, I’d responded, ‘I thought I had stories to tell.’”
In short, placing people into the diagnostic boxes outlined in DSM 5 doesn’t work in terms of helping them seek interventions that work, or helping professionals to choose the best way forward. Nobody wins.
However, one of the few areas in which a medical diagnosis can be useful is for those claiming benefits relating to time off work or disability. For these purposes, a diagnosis is almost always required and it can be tied to a long-term benefit, such as income support.
But the price to pay for these important practical purposes, a psychiatric diagnosis is the risk of giving the message that this problem is lifelong and defines a person’s whole identity.
With the flaws in the current system laid bare, what would Dr Johnstone propose to fix the way we understand mental health problems?
A new, non-diagnostic approach is needed, along with offering the public and profession new understandings so they can make better choices when it comes to mental health interventions.
A recent attempt to outline such an approach is described in the Power Threat Meaning Framework, which sets out the ideas shared and developed by Dr Johnstone and her colleagues, both professionals and survivors, over the past five years. The widely read publication was launched in early 2018 and is now being translated into several different languages (you can order a free copy via email@example.com).
It suggests a new framework – based on completely different principles to the DSM – with which to address psychological and emotional distress issues, restoring the link between what’s happened in someone’s life and the resulting ways we may attempt to survive it.
As Dr Johnstone regularly asserts: ‘We shouldn’t be asking “What’s wrong with you?’ We should be asking “What happened to you?”’
The framework moves away from medicalisation and the assumption that we can understand emotional distress in the same way as physical health problems. Instead, it explores the relationship between events in our lives, their meaning and our responses. It looks into the root causes of distress and suffering, both within people’s lives and relationships and further back in social norms, social inequality, and social injustice of all kinds.
‘We want to restore the sense of agency that diagnosis deprives people of,’ explained Dr Johnstone. ‘But we also want to put people’s distress in the context of their lives. It’s a fine line. Any approach that’s too individualistic runs the risk of implicitly blaming the person.’
The PTM Framework poses some key questions.
‘The Framework has attracted more interest than we could ever have hoped for ’ said Dr Johnstone. ‘It hit a nerve in a positive way, and in some quarters a negative way…’ she commented, referring to abuse and aggression from people who appear to feel threatened by these new ideas.
But, despite this, the framework is rapidly gaining traction because it offers a way of addressing the root causes of many mental health issues that psychiatric diagnoses do not. It really works as a way to help people think differently about experiences that may have been diagnosed as anxiety, personality or depressive disorders.
Dr Johnstone is also the author of an accessible, myth-busting 2014 book, A Straight Talking Introduction to Psychiatric Diagnosis, which outlines the controversies about diagnosis for people who are unfamiliar with the debates, empowering them to make their own choices about how they understand their difficulties. This addresses the knowledge gap between professionals and service users that so often results in the user accepting what they’re told without being aware of alternatives.
Another strand to the campaign is the series of workshops called ‘A Disorder 4 Everyone, featuring Dr Johnstone, psychotherapist Jo Watson and other speakers, both professional and survivor. It aims to explores the alternative to medical diagnosis and open up choices and alternatives. The results have been life-changing for many people. The events take place around the UK – check out the website for a full list and ticket details.
At The Thrive Programme, we’ve been very interested in the work of Dr Johnstone and her colleagues because of our experiences in treating mental health issues. With 30,000-plus people worldwide having been through our courses, we’ve seen the failings of the diagnostic model on a daily basis as helpless, disempowered people seek help for mental health.
They’re often desperate after years of being bounced around a system set on categorising and labelling what, as Dr Johnstone points out, are often simply social issues or judgements. They’re then given ineffective treatments that are no better than using a sticking plaster to mend a fracture wrist.
After this experience, the process of helping them understand their mental health and thoughts, feelings and emotions using evidence-based tools – addressing the root causes – is incredibly empowering and often enables the person to leave their diagnosis behind and begin to make significant progress in overcoming issues such as depression and anxiety.
We believe that the new direction proposed by Dr Johnstone is an important step in furthering a new understanding of mental health – and making sure everyone has access to interventions that really work.
It will undoubtedly save many lives as people find real ways in which to break out of the cycle of distress they feel trapped in, writing a new story about recovery and hope as opposed to the old narrative of being helpless in the face of ‘mental disorders’.
Thank you to Dr Lucy Johnstone for giving permission to use elements of her work in this article. Find out more about her work here.