Opinion: Borderline Personality Disorder - time to let go of the label

‘Borderline personality disorder’ (‘BPD’) is strongly associated with crisis: a subjective overwhelming experience which can include difficulties with emotions and perceptions, and may even lead to self-harm and attempted suicide. Frequently, it leads people to seek help from health, social care, and emergency services—however, people’s crisis care is not always what it should be.

‘BPD’ is a common but controversial psychiatric diagnosis applied to approximately 1% of the UK population, with previous estimates suggesting that between 4% and 10% of people with the diagnosis may die by suicide.  People diagnosed often experience difficulties such as becoming overwhelmed by their emotions, behaving impulsively, and having difficulties in relationships with others. These same people have often been hurt by the world, with ‘BPD’ strongly associated with experiences of trauma and adversity, including physical, sexual, emotional abuse, and neglect. Thus rather than seeing this behaviour as ‘difficult’, we can view it as understandable adaptive responses to adversity.  The horrific salt in the wound is that not only have people been hurt by the world, it is sometimes by those who should have cared for them.

When as a result people experience crisis and seek help, some have difficulty accessing care and are unable to get the help they need. Even when they do get help, they can have either positive or negative experiences; and there is a danger that they may be let down again—only this time, by the professionals who are paid to care for them. Research tells us that staff can lack sympathy for, and even dislike those with the diagnosis. Sometimes professionals hold beliefs that they are manipulative, time-wasting and attention seeking, and actively avoid them.  This chimes with my previous experience as a mental health nurse, often hearing colleagues sigh in frustration as people with the diagnosis were admitted to hospital.

"It can be argued that any ‘personality disorder’ diagnosis that locates the problem inside the person, and not with what happened to them, is not only inaccurate but unjust."

The first principle of all care should be do no harm, yet some people understandably feel very let down and upset by professionals. There are many human factors which can influence care. Services may not have adequate resources, professionals may have varied education and views, and differing opinions can lead to conflicts within staff teams about how best to provide care. Furthermore, it is understandable that staff themselves may experience distress while working with people who hurt themselves and want to die. Their very human anxiety can influence the care they deliver, sometimes being driven by their own fear and helplessness rather than what might be best for the person with the diagnosis.

A reflective space for professionals to support each-other, such as clinical supervision, is recommended but not always utilised or available. Staff need the appropriate education, understanding, resources and support to be able to deliver care effectively, and this is something for all care providers to review. As people with the diagnosis have often experienced difficult relationships, and good mental health care is all be based around creating therapeutic relationships, it is essential this is given appropriate consideration.

To improve crisis care, professionals need to understand the impact of the ‘BPD’ label on how care is delivered and appreciate those human factors which influence how they work. People describe ‘non-caring care’; being treated like a diagnosis, and responses overlooking their thoughts and feelings while focusing solely on their behaviour. This behaviour focus lacks the empathy and curiosity which can help people better understand themselves.  Though working with the risk of suicide is inherently complex, people can have their responsibility removed, e.g being detained under the mental health act, but sometimes with a paradoxical demand that they take more responsibility for themselves. Compounding all of these issues, is the fact that the label has a powerful negative stereotype attached, and people often experience stigma and discrimination. Whilst poor care may not be universal, it is certainly not rare.

"The fact this may not be every patient’s experience strikes me as a tragedy of the current mental health system."

Positive experiences however are not the result of elaborate interventions, but primarily based in humanism; having contact with professionals, sharing in decision making, being treated like a person, having care focus on their underlying emotional distress, which inspires hope in their recovery. Understanding what has happened to people in their lives helps us to make sense of the way they feel and the things that they do. It can be argued that any ‘personality disorder’ diagnosis that locates the problem inside the person, and not with what happened to them, is not only inaccurate but unjust.

While crisis interventions should all be trauma informed, professional responses need not be overly complex. Care can ultimately be broken down to relationships between human beings: one operating in the patient role—requiring help—and another in the professional role—to offer and give help.

The use of inverted commas in my writing around the ‘BPD’ psychiatric label is deliberate. It is used to acknowledge important debates. The distress people experience is very real, though it is not due to having a disordered personality. In terms of crisis care, as people have such different presentations of ‘BPD’ and subjective experiences, the diagnosis is actually of no use. Care should see the person and focus on their needs in the moment, moving beyond behaviour management to exploring and supporting people with their internal experiences, their thoughts, feelings and mental states. The best feedback I’ve received from people with the diagnosis has been about the simple human connection;  “I always felt like you cared” and “I felt like I was talking to you, not the NHS”. The fact this may not be every patient’s experience strikes me as a tragedy of the current mental health system.

If care always starts with empathy, and truly seeing people as human beings rather than labels, this would be an important first step. While it may sound simple, the fact this does not happen universally would indicate it is not. There is much work for everyone to do to improve crisis care for people diagnosed with ‘borderline personality disorder’, and useful progress will likely include letting go of the label altogether.