Research projects

The impact of living with bipolar disorder

Principal Researchers

Nicole J Highet

Bernard McNair

Institution

beyondblue: the national depression initiative

beyondblue’s blueVoices

Funding

$30,000

Project completion year

2002

Project brief

The research sought to explore the lived experience of bipolar disorder and gain a level of understanding of the impact of bipolar disorder on individuals, family and the community. The research also sought to identify factors contributing to the burden imposed by bipolar illness, as well as opportunities to improve the lives of those affected by the disorder.

Focus-group discussions involving 51 people diagnosed with bipolar disorder were held in Melbourne, Sydney, Canberra, Hobart, Brisbane, Adelaide and Perth.

Key findings

Below is an outline of the consistent themes derived from the research:

Lack of Awareness

There is a lack of awareness and understanding about bipolar disorder in the community, among health professionals and those with the disorder. While most people are familiar with the term manic depression and its features, few in the community recognise it to be the same as bipolar disorder. Many people have no conception of what bipolar is, leading most to conclude that it is a different mental illness altogether.

Inability to detect or recognise symptoms

There is a lack of awareness about the symptoms of the illness, preventing recognition of the disorder. Early symptoms are frequently ignored and/or wrongly attributed to other causes such as personality traits or adolescence, delaying access to healthcare.

Wrong diagnosis and wrong management

When seeking professional help, people are frequently diagnosed incorrectly and not given the right treatment. The impact can be profound. Individuals are often at increased risk and more likely to require hospital admission creating distress for themselves and their families. Over time and without treatment, the illness is likely to become more severe. This increases the risk of crisis events, including suicide, which is reported to be significant for this population group.

Social isolation

Isolation also increases over time as the disorder gets worse. Not only is the person with the illness likely to withdraw from others due to feeling alienated, but the lack of understanding about the illness and/or its features may also cause others to maintain a level of social distance – minimising the individual’s opportunities to receive support during times of need.

Substance abuse

It is not uncommon for people to combat isolation and the symptoms of bipolar disorder by using drugs and alcohol, further increasing the severity and burden of the illness. The stories told by participants in the research show how isolation and substance abuse, together with the day-to-day experience of living with the untreated illness, can lead to a downward spiral of events, as key elements of a person’s life begin to unravel.

Implications of the illness

Inappropriate and extreme behaviour that may result from acute stages of the illness (mania for example) can leave an individual with feelings of shame, guilt, embarrassment and humiliation. The involvement of police and emergency services in times of crisis compounds these feelings and may result in legal and financial repercussions.

Breakdown of relationships

Relationships and the family unit are often threatened. Partners, family and friends may become estranged from the individual who is unwell. As the disorder is usually not identified for many years, behaviour is likely to be misconstrued and not considered part of an illness. This causes confusion, significant ongoing strain, and can eventually erode relationships leading to reported high levels of divorce and separation from family and friends. In some instances, children may also be removed from parental care, causing considerable and ongoing distress for parents – and further impacting on their mental health.

Stigma

There is a significant level of stigma associated with the illness. For some, finally receiving a diagnosis of bipolar disorder offered insight and hope, but others felt devastated and were further isolated. This reflects not only the individual’s own perceptions about the illness, but also community perceptions. Not only does this stigma contribute to alienation from family and friends, but it extends into other settings including workplaces where discrimination can result in unemployment and financial debt, contributing further to the burden of illness.

Implications for policy and practice

The research highlights the need in Australia to increase awareness about bipolar disorder, both within the community and among health professionals. This would:

  • improve detection and diagnosis
  • assist in the provision of prompt and appropriate treatment
  • lead to a reduction in untreated illness.

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