Madness, meaning and melancholy: is modern psychiatric diagnosis ethical?
"The mad things said and done by the schizophrenic will remain essentially a closed book if one does not understand their existential context" R.D. Lang, 1960, The Divided Self, p. 4
According to the ADHD foundation, there has been a 400% increase in people seeking diagnosis for ADHD since 2020. However, recently, I and other psychologists have seemed to be asking each other various iterations of the same question. I won't repeat anything verbatim, but here is a fictionalised example of the kind of dilemma we might bring:
"My client has approached me and asked me to assess and diagnose them for x. They may meet the criteria for this diagnosis, and having it may increase their access to valuable public resources; however, I am out of practice and I am hesitating because it may leave them permanently labelled with a stigmatised identity.
Since I began training, I vowed to diagnose sparingly. I believed psychiatric diagnosis to be unethical in principle due to the poor reliability and validity of diagnostic categories, as well as the prevailing social stigma that was unquestionably pervasive at the time.
However, the culture around diagnosis has since evolved. I am increasingly wondering if my commitment to this principle is causing my clients to be denied access to a privileged service which I can, in theory, with additional training and supervision, provide. This feels especially urgent in the current financial crisis when it could help them access vital benefits. What should I do?"
Before I tell you how I tend to respond to my colleagues when they ask such questions, I want to explore this more. Because, as it turns out, I have a lot to say.
Why do we seek diagnosis when we are distressed?
When we suffer, we often seek out an explanation for our suffering. This, to a large extent, reflects the human condition, or at least how humans have been conditioned. One of the most common reactions to diagnosis is the "paradoxical reassurance of sanity", which sounds a bit like this: "Oh my god, I'm not completely crazy for feeling and acting this way - there are other people out there like this too! Thank God this is a real thing and it's not just me". This effect is valid and important.
Other benefits of diagnosis may include:
A greater understanding of oneself.
Validation of one's suffering.
Credibility among family and friends.
Access to relevant information.
Access to belonging within a community that possesses a shared understanding.
Access to resources that would otherwise be "gatekept" by power, such as medication or therapies.
Finally, a diagnosis can sometimes bring greater access to compassion. With a diagnosis, there is often an increased chance that behaviours which would otherwise unfairly attract social judgment - such as fatigue, low motivation or forgetfulness- may be reinterpreted more sympathetically, both by the person and by people around them, as not my fault and out of my control. Worth noting, though, that it's a chance and not a guarantee.
So, what's the problem with diagnosis?
If diagnosis brings so many benefits, you might be wondering what the problem is. Well, diagnoses are not neutral labels. Their words have inherent social meaning, and that meaning often comes with a stigma. As humans, we divide people into categories by default: "mad" and "sane", "normal" and "abnormal", "desirable" and "undesirable", "reliable" and "unreliable", "neurotic" and "stable", "lazy and motivated", "dangerous" and "safe". Unfortunately, diagnoses function as markers of social meaning- and by social meaning, I mean stereotypes.
Moreover, diagnoses are not created equally. Whilst the meaning of diagnoses such as anxiety, depression and ADHD have evolved considerably through public normalisation and a collective rewriting of the narrative, especially with nonpathologising terms such as neurodivergence becoming a household name, others have been left behind. Take Schizophrenia, Bipolar and Emotionally Unstable Personality Disorder, for example. How would you feel if you were given any of these diagnoses in the morning?
The language of diagnosis matters
In medicine, it doesn't always matter if your rash is named after one guy or another. But when it comes to psychiatry, the language of diagnosis really matters. Let's compare two diagnostic categories: Post Traumatic Stress Disorder (PTSD) and Emotionally Unstable Personality Disorder (EUPD). It could be argued that PTSD is less unethical because its language locates the pathology in the trauma, outside the person, rather than in their personality, implying an inherent character flaw. Much controversy surrounds the causes of EUPD, but it is not controversial to state that the proportion of people with this diagnosis who have experienced relational trauma is staggering. In fact, there is considerable comorbidity (overlap) between the two diagnoses; 66% of people with EUPD meet the criteria for PTSD as well (Morris et al., 2021).
The question is: how does EUPD affect the identity of the person labelled with it? As psychologists, part of our job is to help people deconstruct the harmful "core beliefs" that keep them stuck. These core beliefs often take the form of, "I'm mad", "I'm bad", or "I'm different". When a diagnosis feels congruent with a person's identity, they may be more willing to accept it. But is it ethical to collude with a narrative which implies that a traumatised person is broken, or should we be helping them write a different story altogether? And can we ever successfully do both at the same time?
What does the research say?
You might have been shocked to hear my fictional colleague take such a strong stance against diagnosis. But when you look closely at the research we were trained alongside on the harm caused by some diagnostic labels, it's not hard to see why.
In 2005, a research team led by Crumlish in Ireland examined the outcomes for those with schizophrenic symptoms who were deemed to have "psychiatric insight"; in other words, those who accepted their diagnosis of "schizophrenia" rather than rejecting this. To their surprise, they found that those who accepted the label were four times more likely to take their own lives than those who rejected it (Crumlish et al., 2005).
This might be because in qualitative studies many people described feeling ashamed, othered and hopeless about the future when they received such a diagnosis. One participant vividly spoke about the process, saying she felt as though she had been relegated to, “the social garbage heap” (Gallo, 1994, p. 407).
In the 1980s, the World Health Organisation undertook a robust study spanning 18 countries which has since been statistically re-verified (Lin & Kleinman, 1988; Hopper & Wanderling, 2000). The study found that people who heard voices that other people could not hear had significantly better outcomes in poorer, developing countries (where their experiences were more likely to be understood through a spiritual framework of meaning) than in developed countries where they had access to what was considered at the time to be vital medical care.
Anthropologists suggest that this is because, in some cultures, voice hearing is deemed as normal and impermanent as the common cold, so it does not compromise people’s identity or sense of belonging. In some communities, it even exalts people to the higher status of shamanic healers, giving their life status, purpose and meaning (McGruder, 1971, Cumes, 2013).
In 2006, London researchers John Read and colleagues conducted ground-breaking studies on social stigma that would lead them to warn against the well-meaning "mental illness is an illness like any other" campaigns. In their study, they divided people into two categories and gave them the same fictional vignette of a man who was suffering with his mental well-being. They gave one group a compassionate story about his background: it explained how he was abused by his parents and raised in foster care. They gave the second group a medical explanation for his distress, for example, a diagnosis of bipolar disorder or schizophrenia. They found that the group given the social story showed warmth, empathy and compassion towards the man. In contrast, the group given the diagnosis showed far less compassion. Instead, they showed fear and a desire to seek distance from him. The authors observed that:
"Belief in categories that are discreet, immutable and invariably rooted in biological abnormality promote the view that sufferers are categorically different rather than sharing our common humanity" (Read et al., 2006 pp. 316-7)
Let's also not forget that until 1974, "homosexuality" was a legitimate psychiatric diagnosis in the Diagnostic and Statistical Manual (DSM). Let's never forget that.
So which diagnoses are less stigmatized?
Research on adults’ experiences of being diagnosed with ADHD stand in stark contrast (Young et al., 2008, Watters et al., 2018). For example, Susan Young and colleagues found that the only difficult emotions described by participants in their study resulted from anger due to not having been diagnosed sooner. ADHD allowed them to locate their challenges outside of themselves and thus reduced their shame. It also opened a path towards treatment, resulting in optimism. As one participant put it: “Whereas before I was just stumbling through, I can now look at what I can and can’t do” while another said, "“I can see a brighter future basically” (Young and colleagues, 2008, p. 6).
In 2020, a French study compared self-stigmatization in patients with Borderline Personality Disorder, Bipolar and ADHD and found that rates of self-stigma ranked from highest to lowest in that order. Moreover, they found a positive correlation between internalized stigma and distress and negative correlations with internalized stigma and quality of life as well as rates of employment. What we must learn from this is that the language of diagnosis can cause serious harm; therefore, we must take our responsibility very seriously (Quenneville et al., 2020).
So what's the alternative?
Systemic psychology, social constructionism and activist-led movements have argued for non-medicalising approaches to understanding distress which locate the reasons for suffering outside of individuals. They argue that the psychiatric paradigm is not fit for purpose; that a biological symptom is considered to have a linear cause and to be stripped of social, cultural and existential meaning, whereas symptoms of the mind are made of inherently different stuff (Bracken et al., 2012).
The alternative offered by psychology is "formulation", a narrative-led story about why someone has developed their symptoms which makes sense of their suffering in the context of their history, their culture, their traumas, and the meaning they themselves make of their experience. One example of a formulation model is the Power, Threat, Meaning framework (Johnstone & Boyle, 2018) which considers distress in terms of these three dimensions. As activist and researcher Eleanor Longden puts it, instead of asking, "what's wrong with you?", it asks, "What happened to you?"
However, this can feel unsatisfyingly woolly, and it won't fit everyone, such as neurodivergent people. More to the point, we would need to wave a wand and make everyone magically more understanding and compassionate for this to work. At the moment, some families ask, "Is she not tidying her room because she's lazy or because she's mentally ill?" This sort of othering, superficial sympathy given by such family members to a loved one with a diagnosis is often partial. Still, we cannot magically instil in them the kind of nuanced patience, compassion and trauma-informed or neurodivergence-informed understanding that would plug the gap if we took the diagnosis away.
And what about schools? And hospitals? And insurance companies? It's unlikely they would all accept lovely compassionate letters from psychologists with stories of people's trauma and resilience. No, for now, diagnosis continues to make the world go round.
Nonetheless, I can't help but think that some of our archaic, blaming and pathologising diagnoses should not have followed us into the 21st Century. Perhaps some diagnoses need to be done away with, others need to be rewritten, and others, such as ADHD and autism, need to be de-coupled from psychiatry altogether?
From top down to bottom up
Historically, diagnosis has been "done to" a patient, but I think this should change. Ultimately, only the person themselves can tell us the meaning a diagnosis would make to their life. This is why, before and after a diagnosis, I ask questions such as: "What difference would a diagnosis make to the size of your shame?", "Okay, so you'd be happier to have it - out of curiosity, if you could give it a different name, would you? For example, if it were called Reactive Relational Trauma Condition and not Emotionally Unstable Personality Disorder, would you take this instead? Why?" "How does taking daily pills affect your identity?", "How is your life better since you got your diagnosis?" "Are you worse off in any way?" "Have your family treated you differently?" "If you were to draw your diagnosis in a picture that includes you, would you draw it inside your body or outside?"
Gaining a rich understanding of a person's relationship with their diagnosis, or potential diagnosis, has never been a fruitless line of questioning. Usually, that relationship, like all relationships, contains ambivalence. Often, it is still worthwhile.
The bottom line
Whether it is ethical to diagnose should be determined through engaging with meaning, context and, where possible, collaborative dialogue. Whilst several diagnostic labels, such as schizophrenia and EUPD, are often stigmatising, other diagnoses, such as ADHD and PTSD, can undoubtedly improve people's lives. The social context is ever-evolving, and psychologists need to evolve with it. We may hold legitimate, ethical concerns about the roots of the diagnostic system and its intersection with our social world. However, deciding that diagnosis is bad for all people in all systems at all times could be oppressive and withholding of positive power, too. Ultimately, we must be pragmatists who live in the real world rather than a hypothetical one full of unicorns, endless compassion, boundless resources and socially grounded formulations. If a person meets the criteria for diagnosis, wants the diagnosis, and we believe through thoughtful, collaborative consideration that it will help them more than it will harm them, then it is likely ethical to diagnose if we are appropriately trained and qualified to do so. It should be possible to hold both positions, if uneasily; to be critical of the medical model of distress and yet willing to use our positive power within a flawed system for good when we are called to do so.
But can we all just agree that the time has come to set the DSM alight and start over?
*Important note: whilst psychologists can in theory diagnose, this is not a primary tool of our profession and not all psychologists can diagnose all conditions. For example, in order for a psychologist to have the competency to diagnose autism, they would need additional training, supervision and experience in assessing and diagnosing autism with evidence based diagnostic tools. Therefore, if your psychologist tells you they cannot assess you for a particular condition, it may be because it is outside their area of competence and they may direct you to a more appropriately trained psychologist.
If you want to learn more about non-medicalising approaches to therapy, check out my therapy values and options page.
References and sources
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Cumes, D. (2013). South African indigenous healing: how it works. Explore, 9(1), 58-65.
Crumlish, N., Whitty, P., Kamali, M., Clarke, M., Browne, S., McTigue, O., ... & O'callaghan, E. (2005). Early insight predicts depression and attempted suicide after 4 years in first‐episode schizophrenia and schizophreniform disorder. Acta Psychiatrica Scandinavica, 112(6), 449-455.
Eleanor Longden: The voices in my head | TED Talk
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Johnstone, L., & Boyle, M. (2018). The power threat meaning framework: An alternative non-diagnostic conceptual system. Journal of Humanistic Psychology, 0022167818793289.
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Morris, D., Webb, E. L., Fox, E., Holmes, J., Reynolds, K., Head, M., ... & Kamath, S. (2021). Examining the prevalence of complex PTSD in an inpatient DBT service for females with a primary diagnosis of EUPD. Abuse: An International Impact Journal, 2(1), 79-95.
Quenneville, A. F., Badoud, D., Nicastro, R., Jermann, F., Favre, S., Kung, A. L., ... & Richard-Lepouriel, H. (2020). Internalized stigmatization in borderline personality disorder and attention deficit hyperactivity disorder in comparison to bipolar disorder. Journal of affective disorders, 262, 317-322.
Read, J., Haslam, N., Sayce, L., & Davies, E. (2006). Prejudice and schizophrenia: a review of the ‘mental illness is an illness like any other’approach. Acta Psychiatrica Scandinavica, 114(5), 303-318.
Topping, A. (2023). ADHD services ‘swamped’, say experts as more UK women seek diagnosis. Guardian. ADHD services ‘swamped’, say experts as more UK women seek diagnosis | Attention deficit hyperactivity disorder | The Guardian
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