Why is Australia afraid of Borderline Personality Disorder?

Article by Sonia Neale, Hocking Fellowship Award Recipient, SANE Australia
 

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. 

BPD is a disorder of emotional dysregulation, inappropriate anger responses, lack of impulse control, interpersonal relationship difficulties with rejection and abandonment issues, paranoia, dissociation, self-harm and suicide ideation.  It is widely estimated internationally that 2-6% of the population have BPD and of this 10% go on to complete suicide.  Surely this qualifies as a matter of national urgency that we need to do something about?

According to the Diagnostic and Statistical Manual V, fulfilling five out of the nine symptoms qualifies for a BPD diagnosis giving a combination of at least 256 presentations.  Often there is a misconception that all people who suffer from BPD are low functioning.  In fact, there are some high functioning people in the professional services whom you would not suspect have a BPD diagnosis.  Outward appearances can be very deceiving because with enough stress and pressure their internal thought processes and sense of self and the world can fragment and disintegrate without any external actions or behaviour.  There are also people who find it difficult to function outside a hospital setting; as well as everyone else in-between.  No two BPD presentations look alike yet we mostly hear described the ‘acting out’ type of BPD presentations.  

BPD can be perceived as an untreatable, incurable and unrecoverable disorder.  Anecdotal evidence suggests psychiatrists baulk at diagnosing patients because it is thought to be too stigmatising and unhelpful.  This is not a supportive, respectful or dignified response as it can be most enlightening and a great relief to find there is a name for this condition.  There is also a world-wide movement to change the name of BPD to Complex Trauma or Emotional Regulation Disorder which is felt to be a better descriptive formulisation.  

Even if people receive a diagnosis there are very limited services.  Aside from Dialectical Behaviour Therapy delivered by clinical psychologists, there are no support groups, no self-help groups and no NGO service programmes.  In Victoria, there is Spectrum, Project Air Strategy and the BPD Foundation, all innovative and creative services that have helped many people.  For the greater majority though, a clinical psychologist seen through Medicare Better Access is the only option.  Unfortunately only ten sessions a year is allowed, and this is nowhere near enough for long term stabilisation and recovery.  

Last month, I was awarded the SANE Australia Barbara Hocking Inaugural Fellowship.  My application was based on my personal lived experience of BPD, my passion for establishing non-existent BPD services and self help groups, education, advocacy, destigmatisation, research and my goal to eventually link this all together to serve the Australian BPD population.  I intend to travel to America, Canada, Ireland and the UK to research best practice.  A rapidly growing demand for information, education, services, treatment and programmes exists for BPD within Australia. SANE Australia’s most active page on their website is the BPD factsheet, yet there is little recognition and reflection of this debilitating disorder in the general mental health community.  

Some NGO organisations and health services refuse to accept people with BPD onto their mental health treatment programmes.  While there is some online information, what is sorely needed as well as service provided programmes is peer and consumer led offline real-life support and self-help groups.  Specific programmes need to be developed by people with a recovered lived experience.  BPD paid peer advocates need to be situated in all emergency departments to mediate between presenting patients and emergency department staff.  This can go a long way towards reducing stigma and discrimination.  Education programmes in schools, hospitals, universities, NGOs and other health organisations is vital for assisting the public to understand that this is a treatable, recoverable disorder.  As well, early intervention programmes for mothers with BPD and their babies and adolescent BPD services should be the Australian Department of Health’s top priority.

There is a widely prevalent mistaken attitude that people with BPD always present a chronic risk management, however those who suffer from BPD can and do enjoy long periods of stability in between episodes of debilitating symptoms.  There needs to be a huge cultural shift towards embracement and inclusion because with the right support, the right programmes and the right treatment, it is not only possible to recover from BPD; it is also possible to live a highly productive, creative and enjoyable life.

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Article contributed to the newsletter Perspectives - August 2014. Please note that this article is from an individual contributor and does not necessarily reflect the views of Mental Health Australia

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