Borderline personality disorder (BPD), also known as emotionally unstable personality disorder (EUPD) has long been subject to stigma in health and social care settings. Much like poorly understood physical health problems, such as chronic pain, fibromyalgia and irritable bowel syndrome, BPD has often been referred to as a ‘dustbin diagnosis’.
BPD affects just under 1% of the UK population according to the National Institute for Health and Care Excellence (NICE). But a 2018 study found that owing to the risk of self-harm and reported impulsivity in this cohort, people with a BPD diagnosis represent a fifth of emergency presentations to hospital, and more than a quarter of in-patient presentations.¹
BPD was introduced in the Diagnostic and Statistical Manual of Mental Disorders (DSM) in 1980. Just eight years later a paper co-authored by renowned British psychiatrist Louis Appleby, ‘Personality disorder: the patients psychiatrists dislike’, argued that psychiatrists regarded patients with a personality disorder (PD) diagnosis as ‘manipulative, attention-seeking, annoying and in control of their suicidal urges and debts’, and proposed that it be abandoned.
Nearly 40 years later the diagnosis persists – the International Classification of Diseases (ICD) has only just stopped distinguishing between types of PD, dropping the categorisation of ‘types’, including borderline, in its 11th edition. In response, NICE now says in its guidance on PD that it is ‘currently exploring whether the existing recommendations can be amended in line with ICD-11 or whether we need to withdraw this guideline’.
A long-standing concern in the mental health profession is that women are at greater risk of diagnosis than men. As widely reported by NICE and others, BPD is predominantly diagnosed in women, by as much as 75%.² Although the latest NHS statistics on PD diagnosis published Ellie Broughton asks whether a borderline personality disorder diagnosis prevents clients and especially women from getting the help they really need Time to dump the ‘dustbin diagnosis’? in 2016 found that ‘differences between men and women did not reach statistical significance’,³ women remain overrepresented in the numbers of those living with a BPD diagnosis, thanks to historic trends.
Experts are now concerned about the possibility of misdiagnosis in neurodivergent women.⁴ Last year clinical psychologist and author Dr Jay Watts called for colleagues to pursue differential diagnoses for patients experiencing emotional lability with self-harm, ‘especially women and transgender people’ in the International Journal of Psychiatry in Clinical Practice.⁵ In the same year a paper in Brain Science called for further research into the nature of the overlap between BPD and autism, particularly ‘in light of a gender-specific approach’.⁶
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Children
Personality disorders came under the spotlight earlier this year after the former Health Minister Norman Lamb and more than 1,000 professionals wrote an open letter calling for an end to PD diagnoses for under-18s,⁷ as NICE guidance still leaves room for psychologists and psychiatrists to do so in the UK.⁸
The letter, aimed at the Government and Royal College of Psychiatrists, cited the higher rates of diagnosis among women. Authors argued that ‘until there is conclusive proof that this diagnosis does not harm children’, children should no longer be diagnosed in the UK.
14 How many times more likely people with a BPD diagnosis will have experienced trauma as a child12
One signatory is Dr Sami Timimi, a child and adolescent psychiatrist and psychotherapist and author of A Straight Talking Introduction to Children’s Mental Health Problems (PCCS Books). Although he says he accepts PD diagnoses in practice, in general he is critical about their use and abuse: ‘When people come to me who’ve already got those labels, I don’t get involved in an argument or a discussion about whether the labels should exist or not. What I do want to do is to prevent them from absorbing an idea that the label is something definitional about them in a negative way.’
He cautions colleagues against suggesting a BPD diagnosis in referrals to Child and Adolescent Mental Health Services (CAMHS) due to the risk of labelling a person based on their behaviour: ‘We sometimes get referrals from counsellors and therapists who say, “I think they may have a personality disorder”, setting these ideas in motion in the first place, and it’s often because the client is not making any progress. It seems counterproductive to me because it may then make the client feel that they failed in therapy because they have something more serious that therapy can’t help.’
Timimi warns that there is now a move among some corners of psychiatry to diagnose under-18s with an ‘emerging personality disorder diagnosis’ – something he is strongly against: ‘It’s something that I and an increasing number of others are trying to object to, but I suspect that it might well come along in due course, despite the objections of many of us.’⁹
Ideal care
Although not everyone who gets a BPD diagnosis receives ideal care, NICE advises that they are given:
- Written material (or a video) about different types of psychological treatment to discuss with the clinician so they can make an informed choice
- Treatment from a service with ‘an explicit and integrated theoretical approach’, again shared with the service user
- Mid- to long-term interventions, with brief (sub-three-month) interventions explicitly discouraged.¹⁰
NICE also explicitly recommends that ‘for women with BPD for whom reducing recurrent self-harm is a priority, consider a comprehensive dialectical behaviour therapy programme’. Dialectical behaviour therapy (DBT) is a modality developed by lived experience expert Marsha Linehan. Linehan has now retired from speaking on DBT but her legacy lives on in DBT practitioners around the UK and worldwide.
Dr Sami Timimi
Professor Michaela Swales is the Programme Director for the North Wales clinical psychology programme and the postgraduate diploma in DBT at Bangor University, the only one in the country. She is also Director of British Isles DBT Training, the only licensed provider in the UK for Linehan’s modality. She was part of the working group for the classification of personality disorders, reporting to the International Advisory Group for the revision of ICD-10, the committee that consolidated PDs in the ICD-11. Swales is agnostic on the question of whether gender inequality prevails in BPD diagnosis. ‘Men are socialised in a different way to women, and so they may be more likely to express their emotional distress in different ways,’ she says. ‘Those sorts of socialisation processes change, and so then you might see changes over time. It could be that there’s a change in the expression of mental distress that then would lead to these changes in diagnosis or in the statistics.’
On the subject of gender, earlier this year Swales co-authored a paper on how people with lived experience could better inform a research agenda for personality disorders.¹¹ One of five key themes identified by lived experience experts, researchers and clinicians was gender dysphoria.
Unsurprisingly, Swales says she would be in favour of getting rid of the BPD label in the UK because of the stigma attached to the diagnosis, and sees people with a BPD diagnosis as being grouped around common challenges. ‘I don’t think personality disorder is a thing like a broken leg or heart disease,’ she says. ‘Experiences that people have, challenges they have in interpersonal relationships – those are the things that need to be studied.
‘For example, interpersonal sensitivity is a phenomenon experienced by many people with PD labels. Studying the factors that contribute to that, things that exacerbate it, what can help with it – those are important. I would be glad if we could just study them not like a symptom but as a process or a phenomenon. That would take us a long way. We don’t need a diagnosis to do that. Marsha Linehan ended up studying BPD because she wanted to develop a treatment for people who were chronically suicidal, and at that time you had to specify a diagnosis.’
Survival adaptations
Despite their caseloads, grassroots DBT practitioners can also be critical of BPD diagnosis. Jaclyn Everitt is a psychotherapist who worked in the NHS for 10 years before moving into private practice, including five years at a specialist NHS personality disorder service. She now works as a DBT therapist at Mind-Reframed in London. Everitt says she would like to see the personality disorder diagnosis either generalised, as it is in ICD-11, or replaced by something else that doesn’t convey that there is something wrong with the individual’s personality: ‘These behaviours are survival adaptations which are maladaptive and have arisen out of early developmental ruptures and trauma.’
Mind-Reframed sees about 85 clients a week, 70 of whom receive both individual and group therapy with skills practice, what’s known as ‘fully-adherent DBT’. Clients are a mix of privately funded and insured, with a small proportion funded through NHS or social care personal budgets. Usually, around half of clients are female, a fifth male and the rest non-binary. Many people at Mind- Reframed receiving DBT or skills training do not have a BPD diagnosis at all.
‘In all the people I work alongside there are developmental ruptures in early relationships, and if not that then trauma,’ she says. ‘Due to trauma and developmental experiences this population is much more sensitive to any kind of stimuli – meaning their reactivity is much quicker than someone who wouldn’t have been exposed necessarily to that history. I would much prefer they got a diagnosis under an umbrella of attachment-related trauma as opposed to personality disorder.’
After decades of studies into the link between BPD and adverse experiences, a 2020 meta-analysis from researchers at Manchester University found that people with a BPD diagnosis were nearly 14 times more likely to report experiencing trauma as children compared to people without it.¹²
Professor Michaela Swales
Trauma
Jo Watson is a psychotherapist, supervisor, trainer and activist with 30 years’ experience of working with people who have faced trauma and adversity. The founder of the Facebook group Drop the Disorder! and a cofounder of A Disorder for Everyone (AD4E) (adisorder4everyone.com), which runs events on psychiatry and therapy including an annual conference, she is also the editor of the recently published Drop the Disorder + Do Something!: activism to change the culture of mental health (PCCS Books). Watson is against the diagnosis and the medical model of distress as a whole.
‘The diagnosis is so invalidating, and is then the explanation for somebody’s distress, somebody’s struggle in the world,’ she says. ‘Their story becomes, in the worst cases, totally negated, invalidated and erased. I’ve spoken to so many women who have almost forgotten about the importance of the abuse story because of their personality disorder diagnosis – their story’s been left behind. That’s also a massive convenience for abusers because we’re giving them a cop-out situation where they’re not directly to blame for this person’s distress.’
75% of BPD diagnoses are in women2
In her experience a diagnosis always follows trauma, whether the person with the diagnosis discloses it or not. ‘It wouldn’t be that anybody ever develops BPD – they go through life and attract the diagnosis because they tick the boxes that need to be ticked,’ Watson says. ‘It’s unusual for people to tick those boxes and to get that diagnosis before quite significant trauma – it’s just that trauma might not have been expressed or talked about.’
She advises therapists looking beyond the diagnosis to focus on validation: ‘In terms of being a safe therapist, it’s about being able to offer a relationship that remodels safe attachment, that validates their stories, bears witness to those experiences but also honours and celebrates what that person has done to survive, even when society is saying that it’s bad or that it’s disordered.’ That includes using the terminology that your client uses themselves or has asked you to use. ‘Referring to “a diagnosis of BPD” instead of a “person with BPD” is a simple thing that makes a world of difference – it acknowledges that they’ve got a diagnosis but that doesn’t mean that it’s their identity.’
Jo Watson
New approaches
With so many practitioners calling for the abolition of BPD diagnoses for children, and some calling for its abolition in full, alternative models of psychiatric classification are gaining traction. Dr Lucy Johnstone is a psychologist and co-author of the Power Threat Meaning Framework. In the framework, published in 2018, Johnstone and co-author Professor Mary Boyle proposed an alternative method of classifying what we now categorise as psychiatric disorders as ‘general patterns’.
Today Johnstone is puzzled at how long the personality disorder diagnosis has survived. ‘Medical categories evolve and we drop some of them,’ she points out. ‘We don’t diagnose people with dropsy anymore or “railway spine”. To be consistent with scientific progress we’d say, well, this particular category of personality disorder isn’t well validated, doesn’t seem to reflect anything very useful and is actually, for some people, unhelpful. But there seems to be extraordinary resistance to doing so.’
Johnstone wrote about gender disparity in BPD diagnosis in her book, The Straight Talking Introduction to Psychiatric Diagnosis (PCCS Books) and feels that the disorder is the latest in a long line of examples of medicalised sexism. ‘The argument is that certain ways of expressing your distress are less acceptable in women than men,’ she says. ‘Part of the criteria for BPD are angry outbursts, for example – those reactions are often less acceptable in women than men, and that’s a pertinent argument. We’ve always had diagnoses that disproportionately label women for experiencing or expressing things, like hysteria. In the 16th century you’d be called a witch – now, we’re much more sophisticated, we tell you that you have a personality disorder.’
The Power Threat Meaning Framework aims to tackle existing social problems, such as misogyny, by bringing them out of the background and into the person’s history. ‘It’s not just about an individual but connecting the person’s expression of distress with their life and looking at it in a broader social context,’ says Johnstone. ‘What is the context in which so many women may be expressing their distress in this way? Then you get on to the prevalence of abuse in women’s and girls’ lives, and the degree to which women are still marginalised and denied a voice, and the degree to which they’re not treated as equal with men. You can’t do any of that while the diagnosis is uncoupling those things.’ Johnstone doubts the likelihood of NICE following the ICD’s lead on personality disorder: ‘I don’t think this ICD-11 fudge has too many implications for NICE. I guess that they might not feel they have to do anything too drastic.’
Even if BPD was abolished, Johnstone warns, under the medical model people who might formerly have faced diagnosis might still be subject to stigma and iatrogenic harms under another label. ‘People would just be shunted sideways to another diagnosis like bipolar disorder,’ she says. ‘We know it’s unusual to go through the system and only acquire one diagnosis.’ After all, she continues, a BPD diagnosis arguably has little to do with the therapists’ day-to-day work with them. ‘It is my position that counsellors and therapists should not be using diagnostic categories anyway,’ she says. ‘Therapists are there to offer a different, nonmedical way of understanding. Of course, any decent therapist and counsellor would respect their client’s right to describe themselves as they want, but the counsellor themselves should not, in my view, be offering that perspective. They’re there to do something different.’
Dr Lucy Johnstone
Rosie Cappuccino
Sandra Dean
References
1. Lewis KL, Fanaian M, Kotze B, Grenyer BFS. Mental health presentations to acute psychiatric services: 3-year study of prevalence and readmission risk for personality disorders compared with psychotic, affective, substance or other disorders. BJPsych Open. 2019; 5(1): e1.
2. National Institute for Health and Care Excellence. Scope – Borderline Personality Disorder: treatment and management (guidance document). 2 March 2007. bit.ly/3BAOHtJ
3. Moran P, Rooney K, Tyrer P, Coid J. Personality disorder. In: McManus S, Bebbington P, Jenkins R, Brugha T (eds). Mental health and wellbeing in England: adult psychiatric morbidity survey 2014. Leeds: NHS Digital.
4. Sholinghur H. Misdiagnosis in young females – autism versus borderline personality disorders. European Psychiatry 2024; 67(S1): 119.
5. Watts J. Engendering misunderstanding: autism and borderline personality disorder. International Journal of Psychiatry in Clinical Practice 2023; 27(3), 316-317.
6. Dell’Osso L et al. Comorbidity and overlaps between autism spectrum and borderline personality disorder: state of the art. Brain Science 2023; 13(6): 862.
7. Lamb N. Children should not be diagnosed with a personality disorder in the UK. Open letter. [Online.] 17 April 2024. bit.ly/3ZMih9v
8. NICE. Borderline personality disorder: information for the public. [Online.] London: NICE; 1 January 2009. bit.ly/47WaXdG
9. Royal College of Psychiatrists. PS01/20: Services for people diagnosable with personality disorder. London: RCPsych; January 2020. bit.ly/3XMujgC
10. National Institute for Health and Care Excellence. Borderline personality disorder: recognition and management. Clinical guideline CG78. London: NICE; 2009. NICE.org.uk/guidance/ cg78/chapter/Recommendations
11. Renneberg B et al. Towards an informed research agenda for the field of personality disorders by experts with lived and living experience and researchers. Borderline Personality Disorder and Emotional Dysregulation 2024; 11(1): 14.
12. Porter C et al. Childhood adversity and borderline personality disorder: a meta-analysis. Acta Psychiatrica Scandinavica 2019; 141(1); 6-20.