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 together with volatile interpersonal relationships, self-damaging impulsivity, recurrent suicidal threats or gestures and/or self-mutilating behavior” is how it’s described—all externalities. There’s no description of how low someone can feel, the extreme places to which a mood swing can take you.
Challenging stigma
The underlying stigmas still present even within mental healthcare settings are also evident. “Loss of control of aggressive impulses that may result in serious assault or destruction of property”—another description of what characterises BPD—sounds more like a police report than it does anything that belongs within a caring setting.This is key. The language we use around illness changes the way we experience it. It also, crucially, changes the way that we experience care. This isn’t just a matter of pure representation, the frustration of not seeing yourself adequately reflected. It also has a palpable impact on people’s lives, particularly when it comes to more severe or chronic conditions.
Personality disorders are still heavily stigmatised and official descriptions that focus only on apparently aberrant behaviours were reported to only strengthen that. Respondents with schizophrenia also noted that communicating with other people was completely ignored—vast swathes of their lives completely absent in official literature.
There’s also no focus on the positives. Of course, living with mental illness can be distressing; of course, it can make life more difficult. But there are, undeniably, positives: many mentally ill people report being more empathetic, of experiencing a more sincere sense of community, or of having peaks in creativity. There’s a temptation to treat mental illness with utter morbid seriousness, and while this has its positive in terms of understanding the impact it can have on someone’s life, it’s not quite accurate.
Lived experience often doesn’t speak for much when you’re going through the mental healthcare system: where you’ve been and what’s happened to you often proves completely insignificant to professionals who simply see you as an exercise in ticking boxes. Making descriptions both more accessible and more reflective of the felt experience would change that.
In reality, it should be at the heart of everything we do. From diagnosis to avenues of care to policy making, that old activist refrain holds true: there should be nothing about us without us.
