Around 568,000 Australians live with bipolar disorder. In 2023, Bipolar Australia and Western Sydney University asked 566 of them what they need from treatment, care and the community. It is one of the largest surveys of Australians living with bipolar, and their answers offer healthcare professionals a rare view from the other side of the consultation.
“‘Susana, you are a lucky person,’ my psychiatrist told me. ‘I am 100% sure that what you have is bipolar disorder, and with the right treatment you will be able to recover.’ I trusted him completely and followed his instructions to the letter. It had taken me many years to hear those words.” – Susana Bluwol
On average, participants first noticed symptoms at around 20 years of age but were not diagnosed until around 33, a gap of almost 13 years. More than seven in ten (72%) were diagnosed with another condition first, most often depression (57%) or anxiety (26%).
For many, those years meant treatment that did not fit the full picture.
“In 1980, when I was 20 and studying in Washington DC on a scholarship, I had a psychotic episode and ended up in an emergency room. I was diagnosed with schizophrenia and medicated. I wish that doctor had known a psychotic episode can be part of bipolar disorder. Back home in Buenos Aires I became depressed and was diagnosed with depression and heavily medicated. I stayed in bed for nearly 12 months and gained 25 kg.” – Susana Bluwol
Asked what would improve treatment and care most, 29% of participants called for greater understanding of bipolar and more staff training, and some named misdiagnosis itself as a key barrier (7%).
Two in three participants (67%) had concerns about their medication at some point. The most common were general side effects (45%), weight gain (37%) and effects on thinking, memory and energy (26%). Nearly three quarters (72%) said there had been a time they wanted to stop, and side effects were the most common reason (53%).
These figures suggest that concerns about medication are the norm rather than the exception, and that open conversations about side effects may matter as much as the prescription itself.
“Once I was correctly diagnosed, I built a good rapport with my psychiatrist. He explained the condition, kept me fully informed about my medication, and I could discuss the few side effects that appeared with him. At 20, I had received no explanation of what was happening to me, and no information about the drugs I was prescribed.” – Susana Bluwol
Cost was the most frequently named barrier to good care (52%), followed by availability of services (37%) and stigma (36%). Asked how Medicare could better support them, participants most often called for a smaller gap for psychiatry (38%) and more funded psychology sessions (34%).
Participants rated their most recent public system care at 5.26 out of 10, compared with 6.93 for private care. Many described sitting in the middle: unable to afford private care, but not unwell enough, or too complex, for public services.
“Had I not had comprehensive private health insurance, I could not have afforded the nine months I spent in a good private mental health clinic, or the outpatient program I followed after I was discharged.” – Susana Bluwol
Participants rated their psychiatrist’s understanding of bipolar at 7.72 out of 10, and their GP’s at 6.94. Just over half (51%) of those who answered said their GP took a holistic approach to their care. Across the survey, “more understanding” was the change participants most wanted from society as a whole (35%).
“I have also been lucky to have a GP who understood bipolar. She knew how to talk to me, supported me through my recovery and monitored my medication. When an episode began, she knew how to manage it, and when it was time to contact my psychiatrist about an admission to the clinic.” – Susana Bluwol
Of all areas of life, participants were least satisfied with their health, diet and exercise (5.15 out of 10) and their social connectedness (5.43 out of 10). Asked what would help them stay connected, the most common answer was support and social opportunities, such as groups (32%).
The survey did not include carers and families, which is an important gap. Their experiences are the focus of our next stage of research.
“Education about bipolar is fundamental. After I was diagnosed, I attended as many courses and conferences as I could. When someone is diagnosed, their family also needs information about the condition and its treatment, so they can understand it and support the person through recovery. My ongoing attendance at a bipolar support group, for people with the condition and their carers was also an essential part of my recovery.” – Susana Bluwol
Across their answers, participants returned to five themes:
Bipolar Australia offers free online peer support groups for people living with bipolar and their carers, a free e-learning course, and resources including Coming Home with Bipolar, a booklet for families and carers of people who have recently been diagnosed. All are available at bipolaraustralia.org.au.
About the survey: 566 Australians with self-reported bipolar took part online between June and December 2023. Participants self-selected, and the sample was mostly female (78%), Australian-born (84%) and from NSW (48%), so findings may not represent all people living with bipolar.
Reference: Perich T, Kakakios K, Bipolar Australia. Needs of Australians Living with Bipolar Disorder.
Susana Bluwol is Founder of Bipolar Australia, a national not-for-profit peak body for people living with bipolar, their families and carers. She has more than 30 years of experience in mental health as an educator at universities, has presented at conferences in Australia and overseas, and has facilitated an inclusive support group for 15 years. Susana lives with bipolar disorder, and her own experience of a long road to diagnosis, recovery and peer support continues to shape the organisation’s work.
Catherine Villaflor is Operations Manager at Bipolar Australia, where she brings together events, partnerships, volunteers and data to keep the organisation’s support free and growing. With more than seven years in data and business intelligence, including at the impact-driven organisation Plastic Bank, she is committed to using data for people living with bipolar and the families who support them.
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