The people who want to get rid of the term ‘personality disorder’

Mental Health: Beyond Awareness is a five-day campaign asking what we can do for mental health issues beyond "raising awareness". Young people are more aware of mental health issues than ever, but our services are broken, the internet is stressing us out, and self-medication is on the rise. Who is campaigning for change? And how can we help ourselves? This week, Dazed is aiming to find out. 

Borderline Personality Disorder is characterised by emotional instability: changes in mood, frequent feelings of emptiness and despair, an unstable self-image, fear of rejection or abandonment, and a tendency to engage in risky, impulsive behaviour and self-harm. One in ten of those diagnosed with BPD will die by suicide, and survivors live on average 19 years fewer than the average population.

Despite the seriousness of the diagnosis, mistreatment is rife and well-documented. Accounts from survivors have exposed the stigma of a personality disorder diagnosis, and the resulting discrimination and distress – and this is particularly true for those diagnosed with BPD. In one 2018 report, MP Norman Lamb described the treatment of those with a personality disorder diagnosis as “appalling”; patients said they felt ignored and excluded, passed from pillar to post by professionals regarding them as attention-seeking or manipulative.

Survivors have long campaigned for better treatment. But now a growing group of activists is seeking not only improved access to services and reduced stigma from mental health professionals, but the wholesale abolition of the term “personality disorders” – the symptoms of which many argue are more to do with trauma and society than they are a traditional medical (and individualised) diagnosis.

“People within mental health services typically don’t have much of a voice, but those who get labelled with ‘personality disorder’ tend to be even more silenced”, explains Keir Harding, an occupational and dialectical behavioural therapist. Harding has worked for 10 years in specialist services for those with personality disorder diagnoses – and he believes that “people aren’t treated seriously when they ask for help”, instead characterised as manipulative or attention seeking.

“One of the worst notes I read in hospital was: ‘She was self harming because of her diagnosis’  – as if the label someone has leads to them cutting, rather than some powerful needs, emotions or urges that it seems can't be thought about,” he says.

“It’s been known as the ‘dustbin diagnosis’ since the 1970s...It positions everything about the person as disordered, which is why so many people describe it as the ultimate character slur” – Jay Watts, psychologist

Outside of discrimination and stigma attached to the label of BPD, the diagnosis itself is also under scrutiny. “As a disorder, it lacks all the normal criteria for scientific validity and reliability, a fact that is near-universally recognised”, says clinical psychologist Jay Watts. “That’s why the new editions of both international diagnostic bibles have admitted the drastic need for change”.

Watts points out that it is “predominantly women” who are labelled with a BPD diagnosis – and that this essentially labels them “‘too much’ in some way”. “‘Too clinging’, ‘too attention seeking’ – judgements seeped with misogyny”.

“It’s been known as the ‘dustbin diagnosis’ since the 1970s”, she says. “It positions everything about the person as disordered, which is why so many people describe it as the ultimate character slur.” Watts claims that “clinicians treat people labelled with this diagnosis as unsavoury, not taking suicidal thoughts seriously, questioning their moral character...I don’t think stigma is a strong enough word. I call it discrimination. I call it structural violence”.

It’s in this landscape of distress and discrimination that a number of survivor-led groups are fighting for more rights for those diagnosed with personality disorders. And, for the most part, their aim is to completely abolish the label.

“It’s all about where we locate the problem: within the individual or within society” – Mental Health Resistance Network

“The main thing we want to change is to remove the category of personality disorders altogether”, explains the group Personality Disorder in the Bin. PDinthebin, which is survivor-led, describe themselves as a “collective resistance to the ideology behind the label ‘personality disorder’”.

“Many of us have been treated appallingly within mental health services,” PDinthebin write. “Denied and actively excluded from services simply because this label has been applied to us at some point”. They describe the diagnosis as “dehumanising”, encouraging a “system and society that seeks to blame us for our own reactions to distressing life circumstances”.

There are alternatives to diagnosis – one example being the formulation-based trauma-informed response, an attempt to make sense of a person’s distress in a wider context.

“The slogan used by the trauma-informed approach is instead of asking ‘what’s wrong with you?’, you ask ‘what’s happened to you?’”, psychologist Lucy Johnstone explains. Johnstone is the author of A Straight Talking Guide to Psychiatric Diagnosis, and helps organise a series of events, A Disorder for Everyone, both of which attempt to show people “that there are alternatives (to diagnosis), and that you have a right and need to know about them”.

“When people break down and experience extreme difficulties, that distress is very real. But they experience that for reasons,” she says.

We already know that things like bullying, neglect, or sexual abuse can have an impact on someone’s mental health. But Johnstone also points out that this can extend to “living in deprived communities, being socially excluded, racism, discrimination...all those kinds of difficult life events and circumstances” – the wider social pressures and expectations of capitalism, in other words.

The movement is emphatically political. “We need people to explicitly link what is happening to people, three quarters women, in psychiatry, with #MeToo and intersectional feminist activisms”, Watts says. Another group, the Mental Health Resistance Network, takes a similar approach. “The decontextualisation of any form of mental distress is always a political act”, they tell me.

“It’s all about where we locate the problem: within the individual or within society. This is why we use the term ‘mental distress’ rather than ‘mental illness’ – we believe that it is largely caused by trauma, and by the dysfunctional society we live in. It’s another way of saying we see capitalism as a powerful contributing factor in the cause of mental distress.”

Some survivor-led groups are also critical of so-called “recovery”, which they believe should also be placed in a political context. One prominent group, Recovery in the Bin, say they are “fed up with the way co-opted ‘recovery’ is being used to discipline and control those who are trying to deal with their mental distress. There are core principles of recovery that are worth saving – but these principles cannot be found in a one-size-fits-all technique.”

The tide may be turning: BPD as a subdivision of the ‘personality disorder’ diagnosis is set to disappear from the 11th edition of the ICD, a diagnostic tool which classifies conditions, due out in June. Johnstone points out that “if Norman Lamb is saying we need to drop this label, (dropping) it is officially on the agenda”.

“There's a whole bigger agenda, about dropping all diagnoses. That would be my ideal long-term aim,” she says. “But in the short term, in a sense it is easy to drop one diagnosis from the whole system.”

“You do need a diagnosis for some things – access to benefits and services for example. But we should honestly admit that the BPD diagnosis is nonsense and damaging. I feel like that step has become closer.”

We still have more work to do when it comes to understanding what ‘recovery’ might look like for those of us experiencing distress – and when it comes to the way those same people are characterised by medical professionals, peers, and the wider community.

“More and more, we are seeing conformity and compliance to a particular way of life, one that furthers the political agenda of a free market, as being the goals of mental health treatment,” the Mental Health Resistance Network told me. “This must be challenged.”

“We don’t exist to serve an ideologically driven economy. Our politics and economy should exist to serve us.”