Wednesday, 2 November 2011
Matters of Public Interest
Borderline Personality Disorder, Siblings Australia
Several weeks ago, on 5 October, I attended a special lunch in Adelaide to commemorate the first national Borderline Personality Awareness Day in Australia. In an era when many conditions and challenges are now recognised by their own day or week, this condition has remained unacknowledged and shrouded in shame for far too long. This is an illness which is much stigmatised but little understood. 'The Cinderella of mental illnesses' is how it was described that day by people who know the condition intimately—sufferers, carers and mental health professionals who have devoted their careers to help bring it into the light. That suggests only too well how devastating the condition can be when we consider that mental illness itself is hardly a glamorous condition. To describe a particular condition as 'Cinderella' shows the devastation that this condition can bring about. It is vital that this situation changes and the first national awareness day is an excellent start.
Borderline personality disorder, or BPD as it is often known, is a complex mental illness. Its common features include difficult and volatile personal relationships, unstable self-image and mood and impulsive behaviour. There is often fear of abandonment and rejection and also rapid fluctuations between confidence on the one hand and despair on the other. Suicidal thinking and self-harm are not uncommon. The results of the condition are very serious. People who have BPD have difficulty with their social and psychological functioning, their occupational functioning and their quality of life. They are particularly at risk of suicide. In fact, BPD has a similar suicide rate to that of schizophrenia.
Unfortunately, past attitudes towards people with BPD were extremely judgemental. People with the condition were seen as problem personalities, largely caused by parental abuse or neglect. They were labelled 'contrary' and 'wilfully oppositional'. Psychiatrists and therapists were reluctant to take on patients with BPD because they were considered difficult and hard to treat. Sufferers were left to battle with emotions and impulses they did not understand, while getting the message that it was essentially their own fault because they were just too difficult. It truly was the Cinderella of mental illnesses. Fortunately, thanks to the patient and persistent work of committed therapists and the strong advocacy of those with the condition and those who care for them, this situation is gradually changing. Due to improved clinical and scientific research, we now have a vastly enriched understanding of the pathology of borderline personality disorder. We understand that it is a brain disorder with a genetic basis. So some people are born with certain temperaments that predispose them to BPD, which can then be activated by stresses in life. They are then at risk, if certain life events occur, of developing BPD on a serious scale that makes it extremely difficult for them to function in the everyday world.
So what is it like to have BPD? People with borderline personality disorder are hypersensitive and impulsive, and because they are impulsive they tend to act without thinking about the consequences or even seek out dangerous activities. They are extremely sensitive to separations or rejections. They are often easily upset, angry, depressed and anxious. Attending the BPD lunch was a great opportunity for me to hear individual stories from people intimately acquainted with this condition. The words 'prejudice', 'discrimination' and 'neglect' came up time and time again as people shared their experiences. Bob Burke was the host for the day, a devoted father who shared with us the story of his daughter's battle with the misunderstanding and serious life challenges arising from the condition. Dr Martha Kent is an Adelaide psychiatrist who has long worked with people experiencing the condition and brought good news and hope about new treatment options, including cognitive behavioural therapies. While other members of her profession have tended to steer away from this difficult condition, Dr Kent's compassion and explanation that somebody needed to help these people—which is what has motivated her in her life's work—was truly impressive.
And there was Lyn English, a mature woman who had battled BPD since her teenage years through bouts of hospitalisation and trauma, and times when she wanted to take her own life. She spoke of the loneliness and despair that comes from a condition that will not be named and is not recognised, and the importance of respect. She said that the first time she met a therapist who really listened to what she was saying and treated her with respect was an epiphany for her. We know that respect is crucial in all human dealings, but it is particularly so when it comes to vulnerable people, who are not used to experiencing or receiving respect and need to be treated seriously, with compassion and understanding.
Lyn's story was inspirational—the fact that people are now acknowledging her condition and acknowledging the condition itself, the fact that she is now living a productive and happy life, and the fact that treatment is becoming increasingly effective. It is extremely heartening to think that borderline personality disorder, the Cinderella condition, is finally being recognised and may be about to go to the ball. I look forward to hearing even better news next year when I attend the annual event.
Still on a mental health theme, I would like to pay tribute to a very special national organisation which is also based in South Australia, Siblings Australia. It was developed by the committed and tenacious Kate Strohm, who has made it her life's mission to support the brothers and sisters of children with severe or profound disabilities or chronic illness. Illness and disability affect the lives of all family members. Surveys have shown that many family carers in Australia are severely depressed or stressed and this impacts on their children both those with special needs and those without.
The Australian Institute of Family Studies report, Thenature and impact of caring for family members with a disability in Australia, highlights the risk of siblings experiencing depression, especially when a parent has also experienced it, regardless of any caring role they may or may not play in the family. The recent Report of the Inquiry into the mental health and wellbeing of children and young people in Western Australia from the WA Commissioner for Children and Young People states:
The Inquiry recognises the needs of children and young people who are at greater risk of mental health problems due to challenging family or other circumstances. This includes those children and young people with a parent or sibling with a mental or physical illness ...
In Australia, 200,000 young people under 25 have a severe or profound disability or chronic illness. Understandably, significant resources are spent on addressing the needs of these children. But many of these children also have brothers and sisters. It is reasonable to assume that many would have at least one sibling for whom there is currently little support. Although not all siblings will have difficulties many will undergo considerable stress. Many will experience a range of reactions to having a brother or sister with a disability or chronic illness, and these can vary over their lifetime. There are feelings such as isolation, resentment, grief, guilt and fear, and these are exacerbated where children lack the maturity to manage or understand these feelings. They may also experience shame and a sense of worthlessness. Some children also experience disability by association, such as the child who found that other children would not play with her because she had 'disability germs'. These experiences, coupled with feelings that they do not understand and cannot express, can lead to anxiety or depression that follows these children through life. As one older sibling reported:
I felt completely isolated. I thought I couldn't share any of that part of my life with my friends. They didn't understand and I felt alienated from them. Other kids never had the same responsibility.
These children often do not receive the help or attention they need because appropriate services are not available and because of the practicalities of family life. The needs of their brother or sister must take greater priority. Anecdotal evidence suggests that this increases the chance of siblings turning to risk-taking behaviour, including drugs and alcohol. The research also indicates that siblings are at greater risk of developing physical health problems.
Research shows that protective factors include open communication within the family and strong connections both with family and with friends. In addition, outside sources of support such as sibling support programs and school programs are highly significant. Many adult siblings say they wish they had been able to connect with other siblings when growing up, as this would have helped them enormously to cope with the situations they faced.
In 2005, the ABC's Four Corners made a program called 'The hidden army'. During the course of that program, they interviewed Felicity, who became a sole parent after the birth of her three children—two of them with special needs. It is interesting to note that separation and family breakdown is common where there are children with special needs. Felicity reflected that her third child was teased unmercifully at school because his brother and sister both had a disability. At the age of 11 he came to her crying, and asked, 'If I had a disability would you love me too?' She believed his inability to cope as a child led to his later drug and alcohol abuse and its associated criminal activity. He has now also acquired mental illness. Effective early intervention could have helped this family. Counselling could have helped the parents to deal with their grief and reconcile their different ways of coping, it could have helped strengthen the family relationships and a sibling peer support program could have helped the boy cope with family stresses, lack of parent attention and teasing from other students. He could have learned that he was not alone and some strategies to manage the challenges.
Siblings Australia is unique. It is the only organisation in Australia dedicated to addressing the needs of brothers and sisters of people with special needs. It raises awareness of the needs of siblings so that they and others acknowledge the challenges they face. It gives siblings an opportunity to connect with others and to learn skills to deal with their experiences so that they can become more resilient. The organisation has developed a national and international reputation for its work with families and professionals. Their work includes the peer support program SibworkS for children aged eight to 12 years, which has been taken up by providers around Australia. By sharing their experiences, these children learn that they are not alone, and that is such an important thing to understand when you are a child. One of them said, 'At least I have somewhere I can talk where no-one laughs at me.' They learn new ways to cope with difficult situations. Adult siblings talk about similar feelings of relief through connecting with others who can share their grief, guilt and isolation. Many say it would have helped them if they had been able to do that when they were younger, so they would not have felt so alone. Other siblings and parents have reported that peer support has strengthened their relationship with a brother or sister with a disability. Siblings Australia has also run online forums for adult siblings and workshops for parents and providers all over Australia and also in Italy, the UK, US and Canada. They provide many other services including a directory of sibling services around Australia for both parents and providers, extensive training for service providers, input into mental health initiatives in primary and secondary schools, and research and conferences.
In 2010 Families Australia and Siblings Australia together developed a national action plan which highlighted that the national effort to support siblings is currently uncoordinated, underfunded and fragmented. It called for urgent action by both state and federal governments to ensure the concerns of siblings were given the attention that they require. Unfortunately, to date the federal government has ignored these calls. Siblings Australia has continued to advocate for siblings but has been told repeatedly that there is no funding available for sibling support. Now the work of 12 years is at risk. Both FaHCSIA and DoHA state that siblings can access support through other services and they refer to the carer based programs that they run. But most of these are irrelevant to and inappropriate for siblings. Not all siblings are carers, but their needs are real and significant nonetheless. No one government department takes responsibility for this group of children. They fall through the cracks. A clear policy framework is needed to recognise the contribution that they make to the wellbeing of a person with a disability—their brother or sister—either through direct care or through social and emotional connection across a lifetime. We must recognise that this is a group at risk of mental health problems.
It is crucial that we have accurate data collection to establish who these siblings are and what they need. We need support services and workforce development so that professionals can respond to the needs of the whole family and a national resource centre to ensure effective coordination and collaboration amongst those who have an interest in sibling support and the development of best practice in this area. The work of Siblings Australia is crucial in highlighting this area of need and deserves to be supported.