060. ENCOUNTER DARWIN’S WONDERLAND
Borderline personality disorder is one of the most neglected, misdiagnosed, and misunderstood mental health issues in New Zealand. How do we lift the veil on the suffering it causes and best help those who are living with the condition?
Lisa Llewellyn’s mother was 63 when she poured methylated spirits on her nightie and set herself on fire. She’d been arguing with Llewellyn’s stepfather and threatening to burn herself, but when she flicked the lighter to scare him, the fumes caught alight. He smothered the flames as best he could, but she suffered third-degree burns to 33 per cent of her body.
After this dramatic event, Llewellyn’s mother was diagnosed with borderline personality disorder (BPD). For decades, she’d drunk to excess, exhibited a volatile temper set off by the slightest provocation, attempted suicide and locked herself in her bedroom for days on end.
In her happier moments, she also made beautiful school lunches, helped with homework, attended parent/ teacher meetings, and encouraged Llewellyn and her brother in sports and other extra-curricular activities. But the family constantly walked on eggshells, waiting for the next mood swing to occur.
SEARCHING FOR ANSWERS
Llewellyn had been desperately seeking answers for years over her mother’s cries for help, but the doctors she saw tended to dismiss her symptoms or attribute them to depression.
Unfortunately, the length of time it took for her mother to be diagnosed with the illness is neither uncommon nor surprising. Borderline personality disorder entered the official Diagnostic and Statistical Manual of Mental Disorders in 1980, but is still not well known or understood.
It is characterised by nine diagnostic criteria, including extreme mood swings, fear of abandonment, intense anger, self-harm or selfdestructive behaviour, and volatile relationships. To qualify for the diagnosis, a patient must satisfy at least five of the criteria.
The causes of borderline personality disorder remain uncertain, but seem to be a combination of genetics and social or environmental factors such as trauma or neglect. The statistics indicate 10 per cent of sufferers will die by suicide. Those with BPD can present with vastly differing behaviours, much of which is often concealed behind closed doors.
The devastating effect on relationships with friends and families is a common thread to the illness.
Those close to someone with BPD report experiencing manipulation, rejection, abuse, episodes of rage, and gaslighting. It can be difficult to remember this is the disorder, not the person trapped by it, when dealing with these behaviours – and a BPD sufferer’s family can develop illnesses such as anxiety, chronic stress and post-traumatic stress disorder in reaction to the strain.
Clinical psychologist Dr Lillian Nejad says people with BPD find it difficult to manage their lives effectively. “They tend to experience one crisis following another, before the previous one has been fully resolved. Without knowledge of the disorder, or the reason for these difficulties, both they and other people in their lives find it very difficult to cope, which can add further to the problems.”
People with BPD can get so caught up in what they’re feeling, they lose all sense of perspective and the ability to recognise anyone’s needs other than their own. According to Dr Nejad, this is due to the difficulties BPD sufferers face with managing their emotions. “A core problem for people with BPD is emotional disregulation. They tend to have difficulty identifying, understanding and effectively managing their emotions. They tend to experience emotions very intensely, they are likely to react and respond very quickly to perceived stressors, and it can take a long time to settle down.”
Llewellyn remembers witnessing this with her mum: “I’d be talking to her and it just wouldn’t sink in. She couldn’t see anything else. She couldn’t see that she was hurting anybody or that there was anything going on except what was in her world. It’s like they have blinkers on and they just see this world of pain they’re in and everything happening to them and no one else matters.”
Finally being able to put a name to her mum’s illness was an immense source of relief and meant she was able to research the illness for her own understanding, provide context to her mother’s medical professionals, and discover tools to help manage her mum’s symptoms.
POOR UNDERSTANDING
Those diagnosed with BPD report feeling misunderstood, discriminated against, and stigmatised by the health system and society at large. Certain other personality disorders have significant overlap with BPD, and there is some debate in the medical community about whether it should be renamed “emotionally unstable personality disorder” (EUPD) or classified under a related mental illness such as post-traumatic stress disorder to reduce the stigma.
“Disorders commonly associated with BPD are depression, anxiety disorders, PTSD, substance use disorders, and other personality disorders,” explains Dr Nehad. “There is a great deal of overlap between PTSD and BPD, both in history and in symptoms, and there is some contention among clinicians that BPD is not a separate disorder, but rather a more complex and severe presentation of PTSD caused by a history of chronic or repeated trauma and/or abuse.”
For now, PTSD and BPD are listed separately in the diagnostic manual for mental health, and patients will often be diagnosed with both conditions. Borderline personality disorder can also be mistaken for bipolar disorder, or for a psychotic illness such as schizophrenia. Further complicating matters, gender bias may be skewing the number of people diagnosed with BPD compared with other illnesses. “More women are diagnosed with BPD than men. This may be due to a bias that men who behave in a similar way are instead diagnosed with antisocial personality disorder where the attention is on the destructive behaviours more than the emotional disregulation,” says Nejad.
CALM AFTER THE STORM
In Australia, while only a small portion of the population is living with BPD, Nejad says they make up 20 per cent of patients in mental health services and use up to 40 per cent of service resources. But the good news is treatment options are available for those with BPD, primarily dialectical behaviour therapy (DBT). “There are effective psychological treatments for people with BPD. One such treatment, DBT, includes individual therapy and group skills training, and focuses on developing skills to manage emotions, decrease distress, and improve interpersonal relationships.”
Provided people with BPD receive an intensive, proven treatment option for one to two years, Dr Nejad says the prognosis for alleviating BPD is excellent, with research showing a remission rate of at least 88 per cent.
Dialectical behavioural therapy involves an hour of individual treatment, plus two hours of group training, each week for a minimum of 12 months. Unfortunately, not all patients have ready access to this treatment due to the expense.
“Ten sessions a year of Medicare rebates for psychological interventions only really covers people with mild to moderate problems and disorders,” says Nejad. “If we are going to address the needs of this population effectively, they need to be able to afford this treatment. At the moment, the cost for treatment in the private sector is prohibitive and there are not enough well-resourced treatments in the public sector to meet the demand.”
“MORE WOMEN ARE DIAGNOSED WITH BPD THAN MEN.” DR LILLIAN NEJAD, PSYCHOLOGIST
In the meantime, Nejad recommends finding a GP or other health professional with a good understanding of mental health issues, particularly personality disorders, and maintaining regular contact.
With support available, Llewellyn recommends carers for those living with BPD find out as much as they can about what the diagnosis means, connect with others who have had similar experiences, and practise self-care so they have energy left to help their loved one through the tough times. “Do your research, join one of the many forums out there and look after yourself.”