Diagnosis Dilemma: On Identifying as Ill

What is mental illness? This is the question that has been raised by the recent publication of the new edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM), its first major update in twenty years. Often referred to as the psychiatrist’s Bible, this guidebook of the American Psychiatric Association lays out the classifications and diagnostic criteria for all mental disorders recognised by the U.S. healthcare system, defining patient groups and framing understanding of illness, disorder and what is ‘normal’ across the Western world. Yet the guide has long since been controversial and never more so than the most recent edition. Many commentators, including contributors to former editions, have expressed unease at its tendency towards ‘diagnosis inflation’, claiming that an ever-increasing number of recognised  disorders with lowered thresholds will medicalise normal experiences, emotions and behaviours, inappropriately expanding the boundaries of psychiatric concern. Others, such as the National Institute of Mental Health (NIMH), have challenged its scientific legitimacy, arguing that psychiatric diagnoses as specified in the DSM rest too strongly on functional assessment, which is ultimately subjective.

       Yet despite their strong opposition, both the positions of DSM-V and its prominent critics in fact represent fundamentally the same ideological approach to mental illness; pathologising variations in behaviour, decontextualizing responses the extrinsic, social problems and designating mental illness as something abstract from general life experiences.

       Much of the criticism of the supposed diagnostic expansionism capitalises on the stigma severe mental illness whilst dismissing and delegitimising genuine suffering. Many have expressed alarm that 46% of the US population now meet the criteria for mental disorders as designated by the DSM, yet this complaint rests on the assumption that mental health is fundamentally different to physical health; the preserve of an aberrant minority, far removed from most people’s experiences, rather something that affects us all, in varying intensities and manifestations, over the course of our lives. As Ronald Kessler, Professor of health care policy at Harvard Medical School, states “Here’s something even more shocking: 99.9 percent of the U.S. population has had a physical health problem in their lives. …There are all kinds of stuff that count as physical illness. That doesn’t mean you’re at death’s door.” Other commentators have warned against an inappropriate extension of psychiatric attention to those who would not formerly have been considered to warrant it. Some have suggested that “temper tantrums become disruptive mood dysregulation disorder (DMDD); grief becomes major depressive disorder (MDD)” and “overeating becomes binge eating disorder; keeping too much junk, a hoarding disorder; a bit forgetful could be mild neurocognitive disorder”. The implication is that that the problem lies in an epidemic of fragility, a ‘therapy culture’ rendering people unable to cope with the demands of everyday life that would have been endured in a more psychologically robust age. Yet for all the problems of the profession, it is unlikely that clinicians would apply these definitions so uncritically, and more importantly, doubtful that people would seek help simply because they believed themselves to fit with abstract criteria, were they not feeling genuinely limited and distressed by their condition.

       The problem with the DSM’s expanded formulation of mental illness lies not in an extension of concern to the underserving, but that it looks at the problem the wrong way round, considering more of us to be ‘ill’ rather than questioning why so many people feel fundamentally at odds with society. Mental distress is not an objective phenomenon, but a struggle between ones circumstances and capacity to cope with them, with both sides of this equation subject to many influences; social, personal and biological. The connection between mental illness, traumatic experiences and marginalised identities is well known, and even conditions that are not seen as having such a strong reactive component, such as schizophrenia or bipolar disorder, are thought to be triggered by stressful life events. This medicalised framework is also applied to those whose beliefs and behaviour is considered to stand outside of those accepted and condoned by wider society, whether or not distress is experienced.  By rendering what may be understandable, even healthy responses to an unhealthy situation an organic problem, it individualises the nature of the suffering rather than questioning the social structures that created it. This approach to understanding emotions and behaviour can have profound social consequences, and be used control difference and dissent and perpetuate systemic oppression. For example, the compilation of DSM-II in 1968 coincided with the peak of the civil rights agitation, leading to a new understanding of Schizophrenia; formerly this had been considered a non-threatening condition primarily experienced by white, middle class women, but became associated with anger, rebellion, and specifically black masculinity. This classification has had profound implications that can still be felt today. In most Western countries, including the UK, people of African Caribbean backgrounds are considerably more likely to be diagnosed with schizophrenia, with some studies suggesting a phenomenal eight times more, than the general population, as well as being much more likely to be subject to coercive treatments under the Mental Health Act. As the recent Schizophrenia Commission Report states, “These high rates are not  found in the Caribbean, indicating that it is not being black that increases the rates but being black in Britain.”  Similarly, it is well known that homosexuality was only removed from the DSM in 1973, and whilst the most recent edition will see the removal of ‘gender identity disorder’ and it’s replacement with the less marginally less controversial ‘gender dysphoria’, being transgender will remain a psychiatric condition nevertheless, the language used still pathologising and invalidating. As supposedly objective psychiatric diagnoses can reflect the socio-political climate and cultural values and anxieties in such powerful ways, this raises the question how this may play out today in the context of on-going global recession, instability and unrest, given already emergent tendencies to pathologise poverty and protest.

       The reductive, biological-determinist ‘disease model’ is no less sinister. The NIMH has stated that it will no longer base its research priorities on DSM-V definitions, as unlike many physical diseases and disorders which can be determined by an “objective laboratory measure”, psychological conditions rely only on “clusters of clinical systems”, thus ‘lack validity’. Instead they will focus research on examining neurobiological functions. By reducing the complexity of human condition to biological processes, the NIMH locates distress yet more closely in the individual’s mind and away from its social precipitators. As the categorisation and understanding of mental illness is highly culturally subjective, this raises the question how something that is socially constructed can possibly be objectively observed. Furthermore, this hyper-medicalised approach implicitly favours an over-emphasis on pharmaceuticals and invasive procedures to alter brain chemistry, which have historically been associated with abuses of liberty and are of questionable validity alone. For example, the Schizophrenia Commission Report found that talking therapies can prove highly effective, yet are generally side-lined in favour of medication. Most importantly, the valuing of ‘objective’ measures over perception and experience could be used to dismiss distress where these indicators do not appear to be present, and inappropriately pathologise those who may show such ‘abnormalities’ yet consider themselves to be functioning nevertheless.

       Fortunately, there are some in the psychology profession who are disillusioned with all these approaches that over-medicalise experience. In its recent statement in response DSM-V, the Division of Clinical Psychology (DCP), part of the British Psychological Society, has called for a fundamental paradigm shift in our understanding of mental health, emphasising experience and needs over the language of disease, disorder and diagnosis. The DCP argues that the dominant approach to psychological distress that the DSM epitomises “minimises psychosocial causal factors in people’s distress, experience and behaviour while over-emphasising biological interventions such as medication”, and decontextualizes diagnoses, “obscur[ing] the links between people’s experiences, distress and behaviour and their social, cultural, familial and personal historical contexts”. Furthermore, the DCP recognises that there is a strong ethnocentric bias in psychiatry which favours Western, capitalist, heteronormative beliefs and behaviours, stating that, “psychiatric diagnosis is embedded in a Western worldview. As such, there is evidence that it is discriminatory to a diverse range of groups and neglectful of areas such as ethnicity, sexuality, gender, class, spirituality and culture”.

       However, whilst on a political level I strongly agree that we should move away from a medicalised, diagnosis-driven model of mental health, personally I am conflicted. Whilst many find diagnoses to be in itself stigmatising and damaging, and that they can cause them to internalise a mental health service user identity in a way that is limiting and harmful to recovery, I find that it is the symptoms and manifestations of my ‘illness’, not my diagnoses, that are most damaging. Given this, my diagnoses to some extent even help to ‘excuse’ my faults and failures that arise from my condition. Things that have happened to me in recent years – losing my job, dropping out of my degree, being unable to work for six months and still only being able to manage part time work, the financial problems this has created, the times I have been publicly broken down and had to go home because normal daily tasks were just too stressful, the two occasions in my life when I have become so distressed I have had to be escorted home by police, who then stayed with me all night because they didn’t trust I would be safe on my own (and here I must acknowledge my great privilege; if I was not white and passing as middle class it is unlikely I would have even been able to talk them out of taking me to the hospital or police cell) – these, not my diagnoses, are the source of my great shame. Indeed, on realising that I do not respond to medication in any significant way, my only fear greater than that I was too unwell to be helped was that I was actually not unwell at all, as what am I without my diagnoses? Lazy and weak, dramatic and difficult? I of course acknowledge that there are many others with much more severe problems, who feel more profoundly limited by them, but I tend to suppose that they have much more compelling, valid circumstances that led them to become ‘unwell’. Indeed, with its emphasis on individual, biological factors over the psychosocial, the disease model of mental health helps to restore some level of parity – we have the same diagnosis so our pain is the same – which makes me feel less guilty about my problems when there are so many who have suffered much worse oppression and trauma than I have.

        Indeed, we have made some progress in terms of ending stigma against mental illness notionally; in nominally progressive circles, one can be open about having a mental health diagnosis and will be accepted, even commended as brave for talking about it, yet to appear distressed, disturbed or delimited by it remains a source of great suspicion and unease. Calls for acceptance if often appear conditional on people not behaving in a way that is unusual, suggesting that we should not discriminate against people with mental health problems because actually they act just like ‘normal’ people. Likewise, we praise the strength for those who have achieved great things in spite of their mental health conditions, rewarding those who are not too visibly affected by it. But what of those of us (all of us?) that do sometimes behave in ways that would be considered unusual or inappropriate, or are not always strong? Are we letting the side down by perpetuating a ‘negative’ stereotype of the mentally ill?

       If a social, ‘post-psychiatry’ approach to mental health is to genuinely empower and affirm, this must be combined with a concurrent shift in how we think about behaviour, emotions, success and wellbeing more broadly. As the DCP statement identifies, this approach can only work if combined with measures to safeguard access to health and welfare services that are currently based on medical measures, but also we must promote ‘access to understanding’ that is not diagnosis-dependent. Only by accepting variations in behaviour and beliefs, and questioning whether our own are the only legitimate ways of being, can we overcome fear, derision and ridicule of those who behave unusually. If we see someone in distress, we must consider what circumstances could have led them to have such responses, and extend human compassion rather than moral disgust. Likewise, we must question ideas around lifestyle, life courses and success; for example, I often find it can be very difficult to disentangle the extent to which I feel genuinely unhappy and inadequate about my working life, and to what extent I have internalised a capitalistic conception of success that does not value work that is not lucrative or even paid, and rules that everybody has a duty to be optimally ‘productive’. Only by recognising the great variety in human experience, the difficulties we each face and how these play differently in individuals, and overcome rigid conceptions of culturally condoned ways of living and being, can we genuinely overcome the shame of mental distress.

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