Increasingly, mental health problems are labelled as an illness like any other. But can a focus on diagnoses, rather than experiences, harm as well as help?by Eleanor Morgan / October 16, 2019 / Leave a comment
What is mental health?
Despite the term’s omnipresence, there is very little consensus in terms of definition. In 2014, the WHO defined mental health as: “A state of well-being in which every individual realises his or her own potential, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to her or his community.”
The definition has been criticised by prominent clinicians for painting a prescriptive utopia. In reality, most people will not know what such a state of things looks like. Feeling pain, sadness and fear is a part of life. When any kind of pain is extreme, we need intervention to help us regain hope, self-worth and a sense of self. But can it really be that we are ‘ill’ if we don’t necessarily feel we are in a state of well-being at all times?
With this in mind, various studies have found that people are dissatisfied with current definitions that often focusing on a disease model; positioning distress as something ‘other’ that infiltrates our minds and changes how we function.
If we imagine a spectrum between ‘health’ and ‘illness’ and agree that the threshold lies towards the ‘ill’ end, the knotty issue of exactly where one draws the line remains. The criteria of ‘diagnosable’ psychiatric disorders in The Diagnostic and Statistical Manual of Mental Disorders (DSM) was developed with global data and structured interviews, but the reliability of psychiatric diagnosis remains controversial. No objective biological test exists to say someone is ‘depressed’, ‘anxious’ or ‘bipolar’; categorisation relies on subjective judgement.
The arbitrary nature of psychiatric diagnoses and how they are capitalised on by politicians and Big Pharma has long been questioned. However, when important research and planning of health services so often hinges on clearly-defined problems—diagnoses—the power of our governing systems and the language we seemingly must use to navigate them can feel intractable.
As someone who has experienced what I will call, as I always have, ‘anxiety’ for most of my adult life, there were times where the word ‘disorder’ made some sense to me. This inner, malevolent force, this thing that detonated my guts and poisoned my rational thinking, felt completely ‘other’ for a long time. My GP said ‘anxiety disorder’ and I bought it. Why wouldn’t I? At times, I didn’t know what physical or mental order was; my body was too much of a storm. I carefully use the past tense because once I began therapy—in my late 20s; shame can fill your shoes with lead for a long time—and started exploring what had happened to me in my life, rather than hanging onto narratives of what was wrong with me, my conceptualisation changed.
The anxiety has never disappeared. My bowels are still my emotional barometer. But in working, and it is work, to understand my embodied responses as precisely that—an understandable response to some very difficult experiences I’ve had—I have become more accepting of what makes me who I am. I trust the knowledge that no mental state is fixed. I do not subscribe to the idea that my life experiences have made me abnormal.
I am retraining as a psychologist and, now, when I interview people for my journalistic work or see clients who identify as living with problems like anxiety or depression, I notice that the overarching themes are traumatic experiences and shame. That our torture so often lies in fighting with the shame of what it means to feel terrible gives us a striking message about how we categorise our distress and why. (It must be caveated that I am a well-educated white woman who has, with the privilege therein, felt able to ask such questions.)
Considering the diversity of human experience, is it really so damaging to consider ourselves as disordered when we find we’re not coping with life very well? Is it not up to the individual how they define their pain?
Yes, is the simple answer. Everyone has the right to conceptualise their distress how they wish. When statutory mental health care often works on the provision of diagnosis, however, we must not assume that everyone has the knowledge or resources to make an informed choice. The belief that psychiatric labels are scientific and, therefore, that science will show us how to fix ourselves, is pervasive and seductive. And in some cases, labels do seem to be helpful. As a recent Lancet paper made clear, the context of a given diagnosis is important; if offered carefully with room for discussion, it’s more likely a person will view the experience positively. Yet scepticism about labels is not irrational. Someone who identifies as LGBTQ, for instance, may be much more cynical about diagnoses given that, until the 1970s, homosexuality was classed as a mental disorder.
Jonathan Tomlinson is a GP with a practice in one of the most diverse and deprived areas of East London. A worn, crimson-hued kilim hugs the diameter of his consulting room. “It’s for my Turkish patients,” he says. “It reminds them of home.”
Tomlinson is deeply interested in trauma. He has treated thousands of patients experiencing prolonged poverty and social inequality—the greatest causes of suffering on Earth. His interest reflects what he sees every day. I sit in his patients’ spot while he tells me that, in 20 years, he has “rarely encountered a patient with chronic pain who does not have a history of trauma.”
Tomlinson feels that a psychiatric diagnosis can sometimes help with social validation. “On an everyday, getting-by, explaining to people level about why you can’t manage work, it can be helpful.” He also emphasises that having a diagnosis is often “essential” in claiming benefits. (We agree on the inhumanity of having your mental health routinely assessed to deem whether you’re unwell enough to be helped by the state.)
To help his patients find hope, they work collaboratively to “shift the focus of attention away from ‘pathogenesis’ or the science of what makes us ill, to ‘salutogenesis’, the science of what makes us well, by looking at the body, our biology, mind and human relationships as a connected system.”
This approach echoes the principles of the Biopsychosocial Model—the model for “good medicine and good doctors”—and its emphasising that psychological influences of health problems do not fit the narrow parameters of the medical, disease-focused model. Now there is a wealth of evidence for how we embody emotional pain, the dualist idea that mental and physical health are separate is increasingly being left behind. We know that our minds stem from, and are wholly determined by, our bodies, complicating the idea of “ordered” and “disordered” mental states. But what language do we use, if not that of disorder?
Paula J Caplan served on the committee overseeing the development of DSM-IV in the late 1980s, later resigning on moral and ethical grounds. She has written the foreword to Drop the Disorder!: Challenging the Culture of Psychiatric Diagnosis, a new book edited by psychotherapist and activist Jo Watson. Made up of a series of contributions from psychologists, therapists and service-users, the book tries to answer the question of why psychiatric diagnoses hold such power and posit how they can be challenged. Caplan writes: “…[p]eople often express alarm about what to do if diagnoses were not used. They often begin with the question, ‘What do we call emotional suffering and other problems if we are not going to give them psychiatric labels?”
In the UK, there is a movement trying to bring combat this. In 2016, Watson hosted an event called ‘A Disorder for Everyone!’ in Birmingham. Along with Clinical Psychologist Dr Lucy Johnstone, they explored the culture of psychiatric diagnosis in mental health. Providing a space for people to continue talking after the event, Watson set up a Facebook group called ‘Drop the Disorder!’ which now has over 10,000 members. Watson, along with other professionals and activists, regularly put on events across the UK under the ‘A Disorder for Everyone (AD4E)’ banner, encouraging debate on a central question: how and why do psychiatric diagnoses hold such power and how can we positively challenge them?
A contentious arm of the debate is whether the abundance of anti-stigma campaigns is having an inverse effect on wellbeing. Last year, there were 700,000 referrals of children and young people into mental health services—a 45 per cent increase in two years.
It is often suggested that increased referrals to mental health services shows that young people, equipped with new language, are feeling more empowered to express mental distress. The snowball effect of it becoming more socially acceptable to talk is very real, but in addition to the “talk to someone” aphorism falling flat if systematic cuts of mental health services mean there’s no one to talk to, many senior clinicians now feel what we are saying to young people needs to change.
In a recent Dispatches film on the ‘crisis’ in mental health among young people, the NHS psychiatrist Sami Timimi, who works with children and teenagers, said young people are too readily diagnosed with mental illness. “We’re promoting the idea that we should talk about things more often and it’s OK to have a mental health problem, but it’s made us afraid of emotions,” he said. “It’s as if, when you experience intense emotions, that’s a sign that you’ve got a mental health problem, that’s a sign that there’s something wrong with you.”
If we are readily putting young people’s (often intense) emotions into the bracket of mental illness, Timimi and other clinicians feel that diminished emotional resilience is the cost. A psychiatric diagnosis can change how a person views their normal ups and downs in life. With young people, at the relative beginning of navigating the obstacle-strewn business of being an adult human, it seems not just compassionate but invested in long-term wellbeing to think about how we can move away from medicalising all distress.
‘Personality disorders’ are a good example. ‘Personality disorders’ are constructed as being characterised by emotional turbulence, anger, unpredictability, unstable relationships and profound fear of abandonment. BPD has always been synonymous with the ‘difficult patient’ in psychiatric-speak. Deliberate self-harm is common in people with the diagnosis, yet when they are seeking treatment for self-inflicted harm, including drug overdoses, they have been shown in research to be seen as ‘difficult’ or indulging in ‘bad behaviour.’
Many clinicians reject the BPD diagnosis—and why there is such a growing network of ‘survivors’ of the diagnosis itself—because evidence shows that around 80 per cent of people diagnosed have a history of trauma. This in itself can make working within such a diagnosis challenging. As the psychiatrist Bessel Van Der Kolk writes in The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma, his now hugely influential book exploring the lifelong cost of burying traumatic experiences: “As long as you keep secrets and suppress information, you are fundamentally at war with yourself.” Some practitioners even feel that ‘borderline personality disorder (BPD)’ or ‘emotionally unstable personality disorder EUPD)’ are modern-day versions of ‘hysteria’; not least because three out of four BPD diagnoses are given to women.
I spoke to 26-year-old Jenny Carter who lives in Tottenham, North London, works for the council and has been diagnosed with a personality disorder. After the cognitive analytic therapy sessions she was offered as part of her complex care team came to an end, she says, she asked her GP to be re-referred because she still didn’t feel she was coping well. After three unsuccessful attempts, Carter made a complaint.
When the CCT re-accepted her into the service, Carter received a letter about the “difficulties in the context of her personality.” She was referred to a personality disorder service. “I was grateful that it was something,” she says. “Personally, I prefer to describe what I find difficult than any labels. But I need a label to access my PIP benefits.”
Carter recalls looking around the room during a group session—part of the introductory process to decide whether she can go into the full 18-month treatment programme—and realising that “everyone was young and female.” During a recent review, Carter wondered whether the diagnosis fitted her. “I told them I identify with the distress but not the label and they were really funny about it. They kept asking, ‘Do you not accept it?’ And said that if I didn’t identify with it then the service might not work.”
Carter was accepted, and begins her treatment programme next year. Of course, there will be thousands out there like her who feel they have no option but to go with what is presented to them. But given the huge incidence of trauma in those given a personality disorder diagnosis, we must think about how difficult it is for those who have experienced damage from another person to form trust, and what harm a label that enables further bad treatment might do.
Wanting to actually do something about this kind of injustice—rather than comment in frustration—for the last five years Lucy Johnstone, other senior psychologists and service-user campaigners have been developing The Power Threat Meaning Framework as an alternative to traditional psychiatric diagnosis.
When I met Bristol-based Johnstone in London, the evening before a talk she was giving, the fact she has spent her career listening to people was clear from her open, focused manner. “The diagnostic model is enormously powerful. It has many tentacles that reach way beyond services,” she tells me. “People often come into this profession and start to doubt it. They look into it and the whole thing unravels.” This does chime with my own experience. “We must respect people’s right to come up with a description of their distress that makes sense to them,” Johnstone says. “But they also deserve access to alternative sources of information. I feel it is my duty to explain, on a professional, scientific and ethical level, that there are limitations to these labels.”
She is “extremely worried” about how “contagious” diagnostic terms seem to be among young people, going as far as saying that anti-stigma campaigns and the spread of medical language are “brainwashing” an entire generation. “We want to move away from the idea that there is a thing that needs naming and, instead, look at people’s attempts at various levels of consciousness to survive.”
Instead of working from a traditional mental health perspective of ‘symptoms’, her model uses the term ‘threat responses’, asking how we make sense of difficult experiences and how the information we take in from wider society can exacerbate feelings of shame, guilt, fear, isolation and self-blame. The approach can be summarised by four questions that can be applied to the individual, a family or a social group: 1. What has happened to you? 2. How did it affect you? 3. What sense did you make of it? 4. What did you have to do to survive?
The framework has implications for clinical work as well as social policy. It may, for instance, be used to help people create more optimistic narratives about their lives instead of viewing themselves as weak or ‘mentally ill’. This is not to say that someone won’t already be asked these important questions by a doctor or therapist, but Johnstone is interested in “going a layer up” and applying ordinary, non-medical language to someone’s distress from the outset.
Johnstone has, along with other ‘critical’ voices in psychology—those who look towards social change as a means of preventing mental distress, instead of seeing people as fundamentally disordered—been attacked for her position both publicly and privately. She has been called a polemicist—as critical professionals often are—while The Framework’s 400-page document has been labelled as both anti-science and anti-psychiatry. Johnstone acknowledges that her position makes her “an outsider,” but the increase in large-scale research questioning diagnostic validity, as well as the fact that some European Health Councils are actively advising against using DSM categories, means one must think about what ‘science’ is supposedly being rejected.
Then there’s the fact that the criticism directed at her often veers into the personal. I recall seeing an eminent male clinical psychologist referring to Johnstone and other women behind the framework as “women of a certain age.” Johnstone says she has been “astonished by the misogyny involved” and has taken a step back from Twitter. Behind such petard-hoisting comments is a universal truth, however: women “of a certain age” are powered by years of discontent and covert discrimination.
The battle over diagnosis has been real since the inception of psychiatry, but the issue is far bigger than dissent among mental health professionals. Social scientists have long argued that those who perceive themselves to be ill are easier to manage than those who feel their distress is a result of societal injustice—a theme explored accessibly by Nikolas Rose in his influential book Governing the Soul: Shaping of the Private Self. If we are interested in debunking myths and challenging orthodoxy when it comes to how we describe our pain, we don’t have to rely on academic journals. In terms of mainstream books, although Jon Ronson’s The Psychopath Test was criticised by some for lacking journalistic indignation, his interview with Robert Spitzer—the editor under whose charge the DSM expanded to its astonishing thickness—provides essential context to the debate: when Ronson asks if Spitzer ever wonders whether he has created a world in which normal emotional responses can be so easily thought of as mad or abnormal, he replies,“I don’t know.”
Rigorous-yet-compassionate challenges to the diagnostic model do exist in the mainstream. Published in June this year, the extraordinary The Heartland: Finding and Losing Schizophrenia, by former mental health nurse Nathan Filer, weaves poignant and often funny stories of people whose lives have been affected by what Filer refers to as “so-called” schizophrenia—a diagnosis once considered to be psychiatry’s ‘heartland’—with essays and interviews that touch on diagnostic invalidity and the “dark art” of psychopharmacological research (more widely explored in Ben Goldacre’s Bad Pharma). Flier’s central question is far-reaching: who gets to decide what any diagnosis of mental illness actually means?
While the ‘depression is just like any other (physical) illness’ narrative may be helpful for some, for others it reinforces the idea that they’re different from those who are ‘well’. The idea that there is a name for your distress, rather than it be coming from ‘nowhere’ or be something totally out of your control, can be very comforting. But in an age where speaking truth to power seems more important than ever, making room for open dialogue around this unbelievably powerful—and increasingly shaky—prism through which we explain our emotional lives feels like part of the fight.