"We're all mad here": Forgetting categorical diagnosis and remembering ourselves

“But I don’t want to go among mad people," Alice remarked.
"Oh, you can’t help that," said the Cat: "we’re all mad here. I’m mad. You’re mad."
"How do you know I’m mad?" said Alice.
"You must be," said the Cat, "or you wouldn’t have come here.
-Lewis Carroll, Alice in Wonderland

The proliferation of the Diagnostic and Statistical Manual of Mental Health Disorders (DSM), now in its fifth iteration, normalised thinking about psychological, emotional and existential problems in terms of diagnostic categories.  Borrowing the DSM from their colleagues in the medical community, psychological training institutions have focussed on teaching their trainees to think categorically about psychopathology.  In the mainstream of the profession, diagnosis forms the basis of formulations, treatment plans, and even therapists’ advertising around the kinds of clients they like to work with.  There are further financial and social implications, with diagnosis considered an essential key to unlock access to insurance, private and public health rebates, and other financial support for services for many people.

Patients themselves, in turn, have become increasingly literate in these categories, arriving in therapy with a (sometimes quite correct) report of their diagnostic alignments.  Those in the broader community with the good intention of normalising mental health struggles also borrow these terms, taking them as identifiers in the way that other groups suffering prejudice have reclaimed words like ‘fat’ and ‘queer’.  Recently, a friend of mine acquired a keyring that says ‘ANXIOUS’, bought from a company seeking to increase awareness of mental health issues.  In short, diagnosis is increasingly accepted as a natural thing, and life is organised in such a way that no one really remembers another way of thinking about ourselves.  

Research versus practice

In 2020, I was delighted to have the opportunity to hear Nancy McWilliams deliver a paper on a dimensional view of psychopathology, that is, the merits of conceiving of psychological inflictions across a spectrum, rather than categorically.  In her paper, McWilliams pointed out that the DSM was originally developed and intended for use as a research tool, with the express warning included in the first several editions that it should not be used in the treatment of individual cases.  In research, the categorisation of disorders can be useful and even necessary to enable the collection of quantitative data.  However, over time, in response to a cultural paradigm shift in favour of diagnosis as a mode of understanding human experiences, the warnings about the limitations of this model were removed and the DSM was added to the required reading lists of psychology students all over the Western world, who have been memorising its categories for several decades.  This shift has no doubt been influenced by the pharmaceutical industry and other corporate interests, who are heavily incentivised to maintain the popularity of this mode of conceptualising mental illness - a story for another day, but if you’re so inclined, Dr Jason Fung speaks at brilliant systematic length to this issue in this lecture. (I began this writing several years ago - the issue of pharmaceutical industry influence over concepts of illness has obviously grown far larger and louder in the wake of the COVID-19 pandemic.  It is still an issue outside the scope of this writing, but I thought it rather fragmenting not to at least acknowledge that here.)

Diagnosis can serve to provide a greater sense of coherence in our collective understanding of certain inflictions and the individual patient’s experience of what is happening to them.  It may provide a shorthand for the patient to explain particular experiences to others, and perhaps to themselves, in a way that is imbued with a pre-ordained sense of validity and coherence.  However, a diagnosis can also cause estrangement from oneself, a dissociation from the reality of the lived experience of suffering in favour of an outsourced notion of what is happening to us, and a consequential loss of agency and imagination around the pathway to a solution.  It is essential that we remind ourselves of the many things diagnosis is not, lest we succumb to a collective forgetting of who we really are and the complexity of what we are really facing.  

Description versus explanation

Psychological diagnosis is most fraught when it is provided as an explanation, as though it is a disease, a random intrusive visitor who arrived on the wind.  In reality, the DSM provides only a description of a set of symptoms, based on our current understanding of particular presentations which seem to occur in the world.  It offers no explanation of their conception, their birth or what keeps them alive. In the words of Jonathan Shedler, diagnoses are not things, only agreed-upon labels for a collection of experiences. 

While I know many people find great clarity, solace, and affirmation in receiving a mental health diagnosis, I realise I want more for my patients than this consolatory tag, so feeble, story-less and lacking in richness.  Even for therapists utilising a diagnostic model, the diagnosis of a particular individual’s difficulties is barely the beginning of our work.  We are highly trained, respected voices in our communities.  Patients can sometimes go to great lengths and make a considerable investment in seeking us out for treatment.  With this in mind, I believe they are entitled to the expectation that we serve them as guardians of a richer truth it is possible to know of them and their experiences than just confirming that their experiences match a certain checklist we have decided validates suffering.  It is our job, not to rest on the laurels of prepackaged ideas about the human experience, but instead show up deeply conscious and attentive to the threads that weave together into the complex story of each person who sits before us.  

The problem of diagnosis as gatekeeper

Therapists and patients are also not immune to the consequences of these issues as they occur in the medical community.  As many people returned to their GPs to gain access to the additional Medicare rebated sessions provided in the recent federal budget, it has become apparent to me what patients seeking these referrals can be subjected to.  The consultations patients attend to gain access to rebates can position the GP as an administrator and gatekeeper, rather than someone in a position to offer genuine support to the patient.  Doctors are forced to spend their time with the patient filling out a generic form to meet recording requirements, and the patient is often informed they must meet criteria for a DSM diagnosis to be eligible for a referral, almost with the expectation that the patient themselves is somehow responsible for knowing this criteria and proving that they meet it, as if they were proving their academic merit to apply for a university scholarship. 

Patients engaged in psychodynamic or insight-oriented therapy, like those I work with, can face additional admonishment from doctors whose clinical training instructed them that the only evidence-based therapy modalities for the disorder they have quickly diagnosed are those they have the option to tick on the aforementioned form.  I do not believe this is simply the fault of 'bad' doctors, but more seriously, the systematic misleading and cornering of even the most well-intentioned health providers into perpetuating an arrangement that makes accessing good treatment harder rather than easier.

Fear and forgetting

In the middle of one strange iteration of COVID-19 restrictions, I went with some friends to a restaurant which had recently implemented a system I'm sure by now is familiar to many of you - instead of speaking to a waiter to order their food, patrons at the restaurant did so via a QR-scanner on their mobile phone.  At some stage in the evening, I asked a waitress for a sparkling water, which was unavailable on the list of options in the mobile menu.  Upon hearing my request, she looked at me with sincere bafflement for several seconds.  A few weeks into being replaced by this new system and having a large portion of the human aspect of her job removed, it seemed she was struggling to remember how she might proceed in a world where someone placed an order with her directly.  What's more, my request also seemed to evoke in her some amount of fear; she radiated concern about how adhering to this once-very-ordinary request would mess up the functionality of the system she was now forced to operate in. 

Her experience (or at least my projection of her experience) highlights two of the dangers of outsourcing to systems, whether they be diagnostic or technological.  The first is that we truly forget how to think, and in doing so, become less alive, less present, and less creative.  In the context of psychotherapy, the outsourcing of understanding from the therapist's own mind and heart to a system of diagnostic categories has happened gradually at an institutional level, and has meant that we have become disconnected from the very aspects of psychotherapy that are its most powerful offering - the individualised, deeply creative, deeply personal examination, with fresh eyes, of one individual's particular troubles in navigating their human life, within a relationship with a reliable, present, highly knowledgable, but very human healer. 

The second, and perhaps even more insidious danger, is that we find ourselves actually afraid of our own experiences, responses, knowing and instinctual expertise.  I'm sure the waitress was perfectly capable of getting my drink, but perhaps afraid to mess up or defy the system.  The therapist, like the waistress, pressured to adhere to perceived 'evidence-based interventions' to specific diagnosis is left awkwardly holding back from sharing a novel formulation or silenced in a moment where a story or song or personal anecdote might provide the illumination of an important truth, out of fear that these organic interventions somehow don't fit within the system, fall outside the recommended guidelines for the treatment of the kind of person this patient has been categorised as.  I am not advocating here for reactionary involvement and self-disclosure, nor undermining the absolutely vital necessity of working from a coherent formulation of the issues and characteological structure of each person.  I wish only to defend creativity and true presence from the glorification pre-conceived categories of experience, which are not as relevant to two people in a room as we have been lead to believe. 

Remembering ourselves

The Australian Government Productivity Commission recently released a report following their Inquiry into Mental Health, recommending an overhaul of Australia's mental health services to align with a more person-centred mode of care:-

"Providers of clinical and community services too often deliver what they think consumers need, sometimes based on ill-informed assumptions about the decision-making capacity of the consumers and sometimes based just on the symptoms presented to them rather than a holistic view of the individual."

The antidote to this failure of service can only be a remembering.  We must first remember ourselves, as human creatures with instincts, our own embodied knowledge of what it means to suffer, and capacity to make contact with our fellow humans.  Specifically, we might even be served by remembering that "we're all mad here" - trials, symptoms and suffering are not some glitchy failure reserved for the unfortunate few, but a guarantee of admission to the human race.  If we can hold this knowledge in our hearts, then we will be far more ready to remember our patients as our human kin, sitting in rooms across from us waiting to be discovered.  If we can retrieve our right to think, feel and discover for ourselves, the diagnostic, philosophical and technical frameworks of our training can then be utilised in their right place, as faithful servants in a process of understanding and healing, rather than as gatekeepers of what we can know of reality.