Diagnoses can be vital. In the UK, in any given year, one in four people will experience a diagnosable mental health problem. Having a way to label ourselves can help us navigate a path to effective treatment – it’s no exaggeration to say that my OCD diagnosis saved my life. But years later, I find myself questioning the assumptions of our diagnosis culture, and the way we pathologise mental suffering.
Recently I visited the neuroscience lab of Dr Claire Gillan at Trinity College Dublin, as part of a research trip with mental health charity, MQ.
Dr Gillan is conducting big data studies into a range of personality and behavioural traits, across diagnostic categories, to try and establish a more individualised approach to mental health care. Her findings seem to blur the lines between diagnoses, prompting compelling questions about the stories we tell ourselves about mental health.
‘OCD is not a biological reality – that’s what the data are increasingly showing,’ Dr Gillan said at the top of our conversation. ‘There are many commonalities when we average across people with OCD. But they are: one, never applicable on an individual basis; and two, not unique to OCD versus other disorders. Inside a single diagnostic category, you see massive variability not only in presentation, but in aspects of brain structure and function.’
‘OCD is not a biological reality – that’s what the data are increasingly showing,’
Dr Claire Gillan, Trinity College Dublin
These findings do not chime which much lay mental health advocacy, which strives to equate mental illness with physical illness. I’ve advocated for that very thing myself, so I know it’s well-intentioned: the assumption that by depersonalising mental problems and calling them diseases, we alleviate judgement and de-stigmatise. But the more I scrutinise that idea, the more reductive it seems.
This isn’t to say there’s no link between biology and the mind. There is, of course. Neuroimaging studies on people with OCD, for example, broadly show increased activity in the basal ganglia, prefrontal cortex and anterior cingulate cortex. ‘But abnormalities in these regions are by no means exclusive to OCD,’ Dr Gillan explained, ‘a great many disorders show the same kinds of brain changes.’ It would certainly make the mind easier to understand if it could be catagorised discretely the way, say, cancer cells can be, but the definitions simply aren’t that clear.
‘Take schizophrenia’, Dr Gillan said, ‘where two people can have the same diagnosis but none of the same symptoms. Or depression, where you need five out of nine symptoms on a list of criteria to be diagnosed, meaning there are a couple of hundred combinations of symptoms that a person can present with. It’s one of the quirks and flaws in the system we’re using to diagnose people.’
I was especially fascinated by Dr Gillan’s research into those who have no diagnosed mental health problems. What she found in an online study of 2000 ‘mentally healthy’ people, was that many display a variety of traits typically associated with DSM diagnoses, such as compulsivity, anxiety and social withdrawal; which seems to break down the binaries of ‘well’ and ‘ill’ into a continuum.
Some people on this continuum struggle more than others, of course. Some to an excruciating degree, and their experiences must never be diminished or trivialised, or likened to mundane distress. But whether labeling those people as mentally ill is destigmatising or the opposite, is a hugely consequential question that’s worth staring down. As someone who was once diagnosable, who now finds themselves ‘well’, and who’s struggling to distinguish between those two versions of self, these findings were deeply resonant. What seems to be emerging from data is a spectrum of human suffering that massages out the binaries on which we’ve built our entire mental health system.
“The diagnostic model falls flat under closer inspection.”
But if not a concrete diagnosis, I still need a story – some way to make sense of what I’ve been through. So how else to conceptualise mental health? Perhaps not as a suite self-contained conditions, stacked in the past like shoeboxes, but something that’s still moving.
A shoal of fish: a million traits, experiences, impressions and impulses – washing past each other, interacting at innumerable points. Sometimes they align to create dark spherical masses which we call circles, or swirling vortexes which we call towers. Sometimes they wind tightly into giant arrows or daggers. Sometimes they dissipate and let the sunlight through. The lack of containment in this conception of mental health unsettles me.
To resist a neatly drawn distinction between personality and pathology is frightening – as a human being I want boundaries, some way to hem in and package up the nightmare. But in its fluidity it is also comforting. It lets me off the hook: no more need to put the bad bits in a trunk called ‘disorders’ and the good bits in a trunk called ‘me’.
There’s curious relief in the possibility that the same individual make-up that makes a person capable of so much misery, can also be what makes them capable so much joy. When the currents change, the shoal can unexpectedly swell into great cathedrals of shimmering space. The same little fish. The same little mind.
Whereas the diagnostic model falls flat under closer inspection, mental fluidity is undeniable to anyone who’s closely inspected their minds through meditation. This summer I did nine consecutive days of silent insight meditation, and when I looked into my mind I couldn’t find any lines or definitions, I couldn’t even find a self, just objects of consciousness – sounds, sensations, emotions – rising and passing away, rising and passing away. Destabilising? A touch, but freeing.