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How big data made me rethink my mental health story, and the way we diagnose people

Diagnoses can be vital. It’s no exaggeration to say that my OCD diagnosis saved my life. It gave me a tag with which to search for therapy, a language with which to speak to like-minds, and a frame through which to view my experiences. That’s why, as I contemplate the concept of diagnoses in this piece, I do so with unwavering respect for the practical utility of diagnostic categories, and for every person’s right to identify with them.  

Aside from OCD, I’ve been diagnosed with six other mental health conditions over the years. I barely noticed the drip-drip-drip of labels as they happened: bulimia, tic disorder, generalised anxiety disorder, major depression, premenstrual dysphoric disorder, obsessive compulsive personality disorder. But when I looked back over my medical notes as part of a research project recently, and counted them on my fingers, I instinctively rejected them. 

Why, when I’d welcomed an OCD diagnosis, did these others, taken together, feel over-medicalised and bullshitty to me? Perhaps because, when piled up like this, they are messy, not neat. Too numerous and discreet. Six separate bolt-ons to my personality? Where had one ended and the others began? I couldn’t make narrative sense of it. And perhaps this points to the chief value and attraction of a single diagnosis – it helps us make sense of ourselves.  

OCD gave me a way to chapterise my life. When I wrote my book Pure, and later started producing the Channel 4 adaptation of it, I spoke as though my experiences were an aberration, set apart from the ‘me’ of today, who is happy and strong. But the more I learn about the fluidity of the mind, and the arguable arbitrariness of so many diagnoses, the less I feel able to put that part of my life in a box under the bed. I feel a creeping, in-my-bones resistance to the way I’ve tried to compartmentalise my own experiences. 

What if there was another way to think about mental health? One that didn’t involve (what to me feels like) the tricky business of carving up a mind with labels? Recently I visited the neuroscience lab of Dr Claire Gillan at Trinity College Dublin, as part of a research trip and podcast recording with 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. 

Rose and Lucie in a podcast recording
Rose Bretecher and Lucie Horton, MQ Open Mind host, recording the podcast

‘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 and compare them to people without 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.’ 

These findings do not chime with a lot of mental health advocacy, one of the chief aims of which is seeing mental health diagnoses discussed and treated as illnesses, just like physical illnesses. I’ve advocated for that very thing myself, so I know that it comes from a good place: 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.’ Though many advocates cleave to ‘depression is cancer of the mind’ type narratives, we don’t have anywhere near the kind of accuracy that distinguishes different types of cancers. We may wish it so, and it would certainly make mental health easier to understand and treat, 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.’

Rose and Claire walk and talk
Rose Bretecher and Dr Claire Gillan discussing OCD and diagnoses in Trinity College Dublin

I wonder if this huge variability could be one reasons why some people diagnosed with anxiety disorder cite medication as their saving grace, whereas I always loathed it (SSRIs always made me feel much worse, flattening my emotional range until I didn’t recognise myself – I’d never self-harmed until I was put on them as a teenager). That’s exactly the kind of scenario that Dr Gillan’s research is trying to prevent. She’d like to see doctors more accurately predicting how a person will respond to treatment, based on a map of individual traits, not a blunt diagnosis.

I was especially fascinated by Dr Gillan’s research into people who have no clinical mental health problems. What she found in an online study of 2000 people in the general population, 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 struggle more than others, of course, some to a truly excruciating degree, and their experiences must never be diminished or trivialised, or likened to mundane distress. But whether labelling 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 among the ‘mentally healthy’, and who is struggling to put a Rizla between those versions of self, these findings were deeply resonant. They’ve made me reflect on how the chief traits I demonstrated with my OCD – rumination, highly visual thoughts, aversion to uncertainty, tendency to form habits – were the same traits that cut across all of my separate so-called disorders. And, indeed, the same traits that are still a part of who I am. For me, it feels far less stigmatising to think of my mental health history as a range of personal traits that found expression in different behaviours and cognitive experiences, than as a set of distinct illnesses.

Claire at her desk working on data
Dr Claire Gillan in her lab working on big data research into mental health 

As I continue to tentatively move forward in the mental health space, I’m trying to find ways to translate these ideas in my work. I’m a director at Intrusive Thoughts (so-called because we know, from data, this is the phrase people google when they’re first trying to find out what the hell’s going on – they lead with a description of their experiences rather than the name the DSM assigns them.) At the moment we’re writing and developing what we think will be the world’s first OCD chatbot. But we don’t introduce the term OCD until half way through the journey, at which point we present it as a label that some people find helpful, rather than a defined illness with non-porous edges. Because as useful as diagnoses can be, they can also be preclusive. ‘Mental health exists on a spectrum’ as Dr Gillan said. At Intrusive Thoughts, we don’t want to preclude anyone on that spectrum.

All this being said, at a personal level, I still need to make sense of what I’ve been through. I need a concept. I need a story. 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 (which, to quote its language back at it, has ‘burdened’ me with six diagnoses) 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.

Listen to Claire and Rose in our MQ Open Mind podcast: 

Last updated: 28 November 2017

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