Centring patient experience has the potential to transform mental health care. Photo: PA

Navigating the mental healthcare system can be a curious experience. On one hand, to be ill is a profound thing, bodily and existentially: it fundamentally changes how you move through the world. To characterise mental illness as a purely internal struggle is wrong. It’s far more tangible than that.

In the consulting room, things look very different. A gap appears between you-as-patient and you-as-person—and in this transformation, something is lost. The often messy scramble of mental illness is neatened up: your symptoms are collected and studied and filtered into checkboxes. What to you feels like a monumental shift in being turns into a mere quantification: did I feel hopeless and down for more than half the days over the last week, or just several?

New research, published this week in Lancet Psychiatry, bears this dislocation out. Service users want diagnostic descriptions to “better reflect what it feels like” to live with mental illness, it says, and recommends that the ICD, the World Health Organisation’s classification of diseases, be where this recalibration starts.

What the research found

Patients with schizophrenia, bipolar disorder, depression, anxiety and personality disorders were asked to look at the latest revision of the ICD—its eleventh—and compare its descriptions of their diagnoses with their own experiences of illness. As you might expect, the two didn’t always resonate.

There is obviously a logic behind the sometimes-distant language of medical diagnosis. Being told what might be happening to you gives you a fighting chance of getting the correct treatment; grouping symptoms together and listing them is a logistical benefit in an increasingly stretched system.

But when it comes to actually representing what it is to live with mental illness, these criteria don’t even come close. Navigating this system, as anyone who has will tell you, can be incredibly alienating, and diagnostic descriptions that bear no relation to your internal world can only make that worse.

Take borderline personality disorder (BPD). Those with the diagnosis often speak of the intense despair they feel; it can be an incredibly distressing thing to experience, with many having intense mood swings and severe bouts of self-hatred.

But look at the ICD 10 description of the condition and you’d never know. “A disorder characterized by an enduring pattern of unstable self-image and mood…

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