Borderline personality disorder is a hurtful label for real suffering – time we changed it

Standing in the cold, dark bathroom, she hacked into her wrist with a razor blade and quietly stared at the blood that flowed from the cut. She told herself she was a bad person and deserved the pain.

A part of her felt reassured by the sight of the blood – it showed she was alive – since she felt so dead and empty inside. As she stared at her image in the bathroom mirror, she thought, “I have no idea who that person is staring back at me.”

Such deliberate self-harm is very common in people diagnosed with borderline personality disorder. It takes many forms, including intentional overdoses of tablets with excessive alcohol, risky sexual behaviour, as well as physical self-punishment.

Other symptoms of the disorder include identity disturbances, feeling “dead” inside, rage responses or difficulty regulating emotional reactions to situations, mood swings, constant anxiety and panic, poor self-esteem, memory blanks, dissociation (“out of body" or feeling “unreal”) experiences, problems with concentration, feeling invalid, and fear of being abandoned.

A bad cycle

Between 2% to 10% of the population have some degree of borderline personality disorder, which puts them at high risk of suicide. While it’s poorly understood, we know that it predominantly impacts women.

There’s no medication that specifically treats borderline personality disorder, and it’s associated with a great deal of stigma among both health-care professionals and the general community. Research shows people seeking treatment for self-inflicted harm, including taking medication overdoses, are often seen as “difficult”, a “nuisance” or just indulging in “bad behaviour”.

Rage or diffuse anger is another symptom of borderline personality disorder that’s poorly tolerated by family and health professionals. If the person with the condition repeats self-harming behaviour, frustration among family, friends and health professionals increases and may lead to decreased care.

Since people with the disorder crave reassurance that they are worthy, valid and deserving of care, this rejection sets up a dangerous spiral of increasingly harmful behaviour that’s intended to attract care.

Origins in trauma

About 80% of people with borderline personality disorder have a history of trauma. They may block out recollections of early life trauma, but the impact of their emotional, physical or sexual abuse as a young person is profound and present for many years afterwards.

More specifically, people who were sexually abused as children often feel – wrongly – that they did something wrong, that they are to blame for being abused and that they’re bad people. At a deep level, they believe they deserve punishment; their self-harm acts out this belief.

The rage of people with borderline personality disorder, which often occurs in response to apparently small issues, may actually be a totally justified – a delayed expression of anger with the perpetrator of their abuse. And their memory blanks and out-of-body responses to stress may be attempts to repress recollections of abuse and to escape from trauma.

Not all traumas stem from physical or sexual abuse. Emotional neglect or deprivation can also be difficult for people to identify and define. They can, nonetheless, leave a mark for years to come. About 10% to 20% of people who have borderline personality disorder have no known history of childhood trauma.

Difficult diagnosis

The biology of this poorly understood condition includes the hypothesis that abused or neglected children produce high levels of stress hormones (cortisol) and remain on “high alert” – watching and waiting for the next abusive episode. These stress hormones impact brain circuits and centres that determine anger or emotional control and higher learning.

Deliberate self-harm is very common in people diagnosed with borderline personality disorder.Rachel Collins/Flickr, CC BY

Women with this condition can also have cortisol-induced cyclical reproductive changes, leading to menstrual cycle-related depression, obesity, diabetes, high blood pressure, increased facial hair, infertility and ovarian cysts. All these long-lasting mental and physical symptoms appear to have their origins in a history of early life trauma with biological brain changes.

There are effective psychological treatments, such as dialectical behavioural therapy, for borderline personality disorder but health professionals have to recognise and explain the condition before appropriate care can be provided.

And many health professionals find it difficult to recognise the condition because different symptoms come and go over time. An overall view of the person’s life is needed to correctly make the diagnosis.

Ill-fitting name

As a diagnostic term, borderline personality disorder not only fails to capture any of the underlying issues and mechanisms involved in producing its symptoms, it also denigrates. In contrast, major depressive disorder describes a serious condition with the key feature of depressed mood explicit in the diagnostic term.

The word “borderline” was used in the 1930s by psychoanalysts to describe patients whose symptoms were on the border between psychosis and neurosis. But today the most common interpretation of the word is that the condition “borders” on being a real illness.

In effect, there’s an invalidation of the illness in its name. This mirrors – as well as possibly enhancing – the feeling of invalidation the person with the condition already suffers.

And all this is not helped by the next word either. To suggest there’s something about someone’s personality that’s disordered – especially as personality is, collectively, the intimate and unique qualities that describe a person – is a devastating blow. And it cuts further into the already diminished self-esteem that people with this condition have.

Why it matters

Diagnostic labels carry a great deal of weight. They describe symptoms, attempt to answer the question of “what is wrong” and lead to a treatment plan. A diagnostic label such as borderline personality disorder with its stigma and propensity to invalidate the person’s suffering clearly has many negative impacts.

A name that captures the origins of the condition, such as complex trauma disorder, could shift the focus from seeing the person as “behaving badly” or not having a “real” illness, to recognising them as a survivor of trauma or abuse. Such a change could improve outcomes for them and their families.

Of course, what’s also urgently needed is clinical research that creates better understanding of the condition, and the development of tailored, effective treatments. But ultimately, prevention of early life trauma would make the biggest difference to the development and expression of this disorder.

In the meantime, changing the label borderline personality disorder to something more sympathetic, even if just informally, may start shifting negative attitudes to people with the condition.

Jayashri will be on hand for an Author Q&A between 11am and noon AEST on Tuesday, July 20. Post your questions in the comments section below.

Jayashri Kulkarni receives funding from the National Health and Medical Research Council of Australia and educational plus clinical trial grants from pharmaceutical companies that manufacture psychotropic medications.