The worst mental health killer you probably know nothing about (part 3)

This four-part series looks at a serious mental illness that is seriously neglected and heavily stigmatized.

In the first article (part 1) of this series, I told the story of my friend’s recent suicide attempts following a history of self-harm and volatile mood swings, and our belief that he has borderline personality disorder (BPD). In the second article (part 2) I discussed the diagnosis, causes, and treatment of BPD.

This article (part 3) exposes how BPD is a seriously neglected¹ and highly stigmatized² mental illness, including by mental health practitioners. It then looks at what can be done to remedy this disturbing situation, including actions that knowledge managers can consider.

In the preface of the second edition of one of the best-selling books on BPD, I hate you—Don’t leave me: Understanding the borderline personality³, Jerold J. Kreisman, MD lauds the advances in treatment since the first edition was published. But he then laments that:

…despite these advancements, it is disappointing to review the preface to the first edition and recognize that misunderstanding and especially stigma still run rampant. BPD remains an illness that continues to confuse the general public and terrify many professionals. As recently as 2009, a Time magazine article reported that “[b]orderlines are the patients psychologists fear most” and “[m]any therapists have no idea how to treat [them].”

Kreisman then goes on to reveal how BPD support is being seriously neglected, stating that in the United States:

…huge challenges remain, especially financial. Reimbursement for cognitive medical services is shamefully, disproportionately small. For one hour of psychotherapy, most insurance companies (as well as Medicare) pay less than 8 percent of the reimbursement rate allocated for a minor outpatient surgical procedure, such as a fifteen-minute cataract operation. Research for BPD has also been inadequate. The lifetime prevalence rate of BPD in the population is twice that of both schizophrenia and bipolar disorder combined, and yet the National Institute of Mental Health (NIMH) devotes less than 2% of the monies apportioned to the studies of those illnesses to research on BPD.

That a mental illness with such a horrifyingly high suicide rate could be so neglected and stigmatized leaves me dumbfounded. This state of affairs is a very sad reflection on humanity, and must be reversed as quickly as possible.

How BPD is seriously neglected and heavily stigmatized

In the first article (part 1) of this series, I discussed how a mental health hospital here in China had not correctly diagnosed my friend’s mental illness, and instead gave him a wide range of medication for a wide range of mental health problems including bipolar disorder, schizophrenia, and anxiety. The array of medications included lithium carbonate and Xanax that he would later use to overdose. While the Chinese Classification of Mental Disorders (CCMD-3) does not currently identify BPD, it does identify the apparently closely related impulsive personality disorder (IPD)⁴, which was a potential diagnosis.

The most typical suicidal behavior in BPD is an overdose of medication. Because of this, the misdiagnosis of BPD as other illnesses for which medication is the primary treatment, such as bipolar disorder, not only fails to effectively treat the BPD but also dangerously increases the suicide risk.

The first article (part 1) also discusses my friend’s disturbing visit to a second hospital, where staff were impatient and unfriendly and only a few minutes were allocated to an inadequate patient assessment. However, the problems of misdiagnosis and inappropriate patient care are in no way confined to China.

A misdiagnosis such as that experienced by my friend could just as easily have happened in a western country. For example, a study conducted in the United States found that patients “with borderline personality disorder had significantly greater odds of a previous bipolar misdiagnosis.”

People who do succeed in getting a correct diagnosis then have to deal with the next roadblock: BPD patient care worldwide is seriously lacking. For example, Joy Hibbins, who runs a suicide crisis centre, writes about how mental health services in the United Kingdom are failing people with BPD.

Hibbins lists a number of serious problems. National guidelines recommend the establishment of a specialist personality disorders service, but the plans have been shelved and the funds diverted elsewhere. Rather than delivering dialectical behavioural therapy (DBT) the way it was intended, it is being done from a book with a care coordinator, and this is being negatively received by clients because they aren’t actually receiving any therapy. Mental health practitioners and national guidelines emphasise that patients should try to resolve things and find solutions themselves, but this can be very difficult for BPD patients who are in a crisis situation. Patients are reporting that their hospital stays are too short, being based on their diagnosis rather than their individual needs. This is part of a wider problem of a lack of individualized care, which is at odds with the different and unique needs of each BPD patient.

Given all of these issues, Hibbins expresses her understandable frustration:

…guidelines confirm that people with BPD “are particularly at risk of suicide”. It seems incomprehensible that their needs are not being prioritised, and that mental health trusts are failing to provide the specialist services which they need.

A significant obstacle to both diagnosis and treatment is stigmatization, including by mental health practitioners. My friend’s fear of stigmatization meant that he was for some time very reluctant to consider the possibility that he might have a mental illness, as I discuss in the first article (part 1) of this series. This fear of stigmatization is widespread.

Sonia Neale, who has been working to help people affected by BPD in Australia, discusses the situation in that country in an article titled “Why is Australia afraid of Borderline Personality Disorder?”. She alerts that:

A rising crisis and process of discrimination is largely being ignored in mental health within Australia. If people with mental illness are stigmatised within the general community, then people with Borderline Personality Disorder (BPD) are sometimes stigmatised and discriminated against within the mental health system itself.

A survey carried out by the Women’s Centre in Australia’s capital city of Canberra highlights the extent of the stigmatization discussed by Neale, and how it presents a barrier to those seeking treatment. The survey found that:

About 87 per cent of women with BPD surveyed said they had experienced some form of stigma when accessing mental health services. This was backed up by about 70 per cent of health service providers surveyed, who said they had witnessed some form of stigma towards people with BPD in other providers.

In a paper in the American Journal of Psychiatry⁵, John G. Gunderson, MD talks about how BPD is not only stigmatized, but that there is a general lack of awareness about it and poor funding support for research compared to other mental illnesses. He writes that:

Borderline personality disorder remains terribly and unfairly stigmatized. Most mental health professionals want to avoid—or actively dislike—borderline patients. Borderline personality disorder remains far behind other major psychiatric disorders in awareness and research. The difference between its reported prevalences in clinical settings (15%–25%) and in the community (1.4%–5.9%) indicates that a large number of people with the disorder are undiagnosed and untreated. Research on the disorder receives a total of only about $6 million annually in NIMH funds, less than 2% of the amount allocated to research on schizophrenia (which has a prevalence of 0.4%) and less than 6% of that for bipolar disorder (which has a prevalence of 1.6%).

Addressing the lack of BPD awareness and action

Two Australian initiatives are showing the way forward in reversing the current lack of BPD awareness and action.

The Project Air Strategy is a personality disorders strategy that aims to enhance treatment options for people with personality disorders and improve support for their families and carers. It represents a re-think of treatment approaches⁶, given “the high prevalence of the disorder, the challenges of providing sufficient resources to meet clinical need, the stigma and burden for those involved, and the cost-benefit of intervening effectively.” The Project Air Strategy endorses an integrative collaborative relational approach, and through this promotes a personality disorders-inclusive health service.

Further to this, a number of Australian clinical, community, and BPD organisations have come together to advocate a new national agenda for BPD. As part of the new national agenda, the first week of October each year has been declared as Borderline Personality Disorder Awareness Week, and a road map towards the development of a national strategy for BPD has been prepared.

Potential solutions being advanced in the Australian national agenda for BPD include:

• creating a national model of care for BPD

• creating a national tertiary training framework for BPD

• creating a national support framework for family and carers

• developing centres of BPD excellence in each Australian state and territory, such as Spectrum Victoria

• accrediting clinicians for treatment of BPD

• establishing a national registry of all accredited and evidence-based BPD treatment providers

• establishing a national centre for BPD research

• supporting the Australian BPD Foundation as the awareness raising and advocacy organization for BPD and provider of information about education and services to people with BPD and their families and carers.

The Australian BPD Foundation was launched in 2013:

The Foundation is committed to getting the past out of the present by dispelling the myths and negative culture that has developed around BPD. The Foundation aims to create a more realistic culture of hope and optimism based on the reality that with access to appropriate treatment and support, the prognosis is positive! People can and do recover and lead meaningful and creative lives.

However it is a journey that requires access to appropriate treatment, support and understanding from family, friends, mental health professionals and the community.

Knowledge management expertise can potentially assist the implementation of the Australian national agenda for BPD, for example through assisting the establishment of communities of practice and knowledge bases, or the facilitation of lessons learned processes. I encourage both the national agenda for BPD proponents and knowledge managers to consider this possibility.

Similar national agenda for BPD initiatives should be launched in all countries. The World Health Organization (WHO) could potentially coordinate and encourage this through the preparation of a global strategy for the management and treatment of BPD. Again. knowledge management expertise can potentially assist with this.

The development of a coordinated global strategy for BPD would be consistent with the international Sustainable Development Goals (SDGs). Goal 3 is to “Ensure healthy lives and promote well-being for all at all ages”, and includes the following target:

By 2030, reduce by one third premature mortality from non-communicable diseases through prevention and treatment and promote mental health and well-being

As part of the implementation of a coordinated global strategy for BPD, suicide prevention strategies need to be improved. Despite the significant suicide risk posed by BPD and this risk being greater than for other mental illnesses, the 2014 World Health Organization (WHO) report Preventing suicide: a global imperative refers only to the suicide risk of “mental disorders” in general. There is no mention at all of BPD in the report, and only one indirect mention of personality disorders in general. This is likely to act to reinforce the continued neglect of BPD in the community and among mental health practitioners.

National suicide strategies are little better. For example, Preventing suicide in England makes no mention at all of BPD, and personality disorders in general are mentioned only in the context of people in contact with the criminal justice system. This is not exactly helpful in overcoming the problem of stigmatization. The United States 2012 National Strategy for Suicide Prevention: Goals and Objectives for Action does have a subsection on BPD, but only limited information is provided, with the suicide risk of BPD in comparison to other mental illnesses not stated.

Addressing fear of stigmatization

A recent study⁷ highlights how relational situations influence the fear of stigmatization in regard to mental illness. People have been found to keep their mental illness secret to avoid intensifying family conflicts, because they fear rejection, or because they don’t want to burden their families with their condition.

An article in Science News, the magazine of the Society of Science & the Public, provides this advice on addressing the fear of stigmatization:

Local services stand the best chance of getting troubled individuals to see help-seeking as acceptable behavior with the potential to change one’s life for the better. Possible approaches include training pastors and other religious leaders in how to assist those with mental disorders and establishing public self-help groups and high school clubs devoted to open discussion and support. Local centers housing teams of social workers and counselors able to coordinate care for serious mental disorders would be a big advance.

Knowledge management expertise can potentially assist the implementation of such approaches, for example through assisting the establishment of communities of practice.

The article makes the important point that not only can stigma prevent people opening up about their mental illness because they fear fracturing frayed family ties, but that close family and community ties can also increase stigmatization:

Excessively close ties among a network of families can also stoke stigma … It can flourish in a wealthy, well-manicured community where everyone knows everyone else, if not in person than by word of mouth

Addressing stigmatization by mental health practitioners

In an article in PsychCentral, John M. Grohol, Psy.D. looks at why mental health practitioners stigmatize people with BPD, and how we should respond to this. He reports that:

…it’s no wonder people with borderline personality disorder can be challenging to work with. They will often “test” the therapist who works with them, by either engaging in impulsive, dangerous behavior (needing to be “rescued” by the therapist, such as committing an act of self-harm), or by pushing the professional boundaries of the therapeutic relationship into forbidden areas, such as offering a romantic or sexual encounter.

Most therapists throw up their hands when it comes to treating people with BPD. They take up a lot of the therapists’ time and energy (often much more than the typical patient), and very few of the traditional therapeutic techniques in a therapist’s arsenal are effective with someone who suffers from borderline personality disorder.

However, Grohol strongly expresses his disgust with negative therapist attitudes to BPD. He warns that:

The stigmatization and discrimination of people with borderline personality disorder needs to stop within the mental health profession. This bad behavior reflects poorly upon therapists who repeat the same inaccurate and unfair generalizations about people with BPD as others did about depression three decades ago. Professionals should know the local therapists within their community who are experienced and well-trained to treat borderline personality disorder. And if they find such numbers lacking, they should seriously consider it as a specialization of their own.

But if a therapist does nothing else, they should stop talking about people with borderline personality disorder as second class mental health citizens, and start treating them with the same respect and dignity all people deserve.

Dialectical behavior therapy (DBT) creator Marsha M. Linehan makes similarly strong comments in the introductory pages of her DBT Skills Training Manual⁸:

When I teach my graduate students—who work with complex, difficult-to-treat individuals at high risk for suicide—I always remind them that they can choose whether to look out for themselves or to look out for their clients, but they cannot always do both. If they want to look out for themselves at a possible cost to their clients, I remind them that they are in the wrong profession.

Backing up Grohol and Linehans’s perspectives, other professions, for example police, also face very difficult and challenging situations but don’t shirk their professional responsibilities. However, police officers typically have access to counselling, but who provides therapy for the therapists? This critical need is also being seriously neglected, with medical professionals themselves facing a shockingly high suicide risk.

Fortunately, the new Australian national agenda for BPD provides positive and proactive solutions to the issue of stigmatization by mental health practitioners, and similar initiatives could be launched in other countries.

Supporting a partner, family member, or friend with BPD

The final article (part 4) of this series provides information on how to effectively support a partner, family member, or friend with BPD.

Next and final article: The worst mental health killer you probably know nothing about (part 4). Information on how to effectively support a partner, family member, or friend with borderline personality disorder (BPD).

Header image source: Mic445 on Flickr, CC BY 2.0.

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