Home Latest Australia ‘Lucky to be alive’: The decade-long wait for a bipolar disorder diagnosis

‘Lucky to be alive’: The decade-long wait for a bipolar disorder diagnosis

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Source : Perth Now news

When psychologist Zsofi de Haan started suffering low moods in her early teenage years, it was put down to hormones, normal teenage stuff.

Over the next few years her depression continued and she experienced other adverse life events that were attributed to a major depressive disorder and post-traumatic stress disorder triggered by severe stress.

They were labels that masked what was really going on.

In her late teens and early 20s, Dr de Haan’s depression lifted and she presented like she had ADHD. She was elusive, found it hard to sit still, concentrate and complete tasks and acted more impulsively.

She was diagnosed and treated for ADHD.

“If you had spoken to either of one my parents, they were like, ‘She’s never shown signs of anything like that as a kid, she was always able to focus, was well-behaved, there was nothing that raised concerns at the time’,” she said.

“I started to have quite regular euphoric and racy episodes, and I was probably hypomanic pretty consistently for a year-and-a-half until I got formally diagnosed.”

It wasn’t until Dr de Haan had her first full-blown manic episode and was hospitalised that she was diagnosed with bipolar disorder a decade later.

A decade after being misdiagnosed with depression and PTSD, psychologist Zsofi de Haan suffered a full-blown manic episode and was finally diagnosed with bipolar II disorder. iStock Credit: istock

During those 10 years, the gifted student lost her sense of self and was unable to function at her usual level.

“I didn’t fit the criteria diagnostically at the time for bipolar, and the bad part about that, in terms of the dangers of a lack of early intervention and misdiagnosis, is that I was put on medications, which for me made things a lot worse.”

Doctors diagnosed Dr de Haan with bipolar II disorder when she was hospitalised during a crisis state at 25 years of age.

“Early intervention would have changed my life,” she said.

When her friends were graduating from university, working and starting families, Dr de Haan was finally being treated after a decade of taking medications that did not work for her.

She said it took about three years for her to feel like her old self again.

“For me to get well, it took about three years of trying to find the right combination of medication and for me learning how to manage with my disease,” Dr de Haan said.

“I had a good friend of mine who I’ve been friends with since school say when I got well, ‘Zsofi, it’s like you’re you again. I remember this is you from when we were in school. This is who you are. It’s like you’re you again finally, you’ve come back’ and that is exactly how it feels.”

Dr de Haan said the delay in diagnosis had progressively more impacts on her life, and an early diagnosis would have saved a decade of her life and a lot of heartache and distress for her family.

Dr de Haan said an earlier diagnosis of bipolar disorder would have saved a decade of her life. Picture: Supplied by Zsofi De Haan
Dr de Haan said an earlier diagnosis of bipolar disorder would have saved a decade of her life. Supplied by Zsofi De Haan Credit: Supplied Source Known

A new study has found a potential way to improve the prediction of early onset mania and hypomania earlier, reducing years of diagnostic uncertainty and suffering in people with the illness.

Diagnosing people with bipolar gives them more appropriate treatment pathways.

The illness is marked in people who suffer periods of low moods or depressive episodes and high moods or manic or hypomanic episodes, according to the Australian Psychological Society (APS).

The episodes impact a person’s relationships, education, work and day-to-day life and can last between three to six months every few years or shorter more frequent episodes over a year, the APS says.

The disorder is prevalent in about 1 to 3 per cent of the population and is more common in females.

People typically experience their first onset of the disorder as a depressive mood episode between the ages of about 15 and 25.

But like Dr de Haan, many people who develop bipolar experience manic or depressive symptoms that are below the threshold for a mood episode diagnosis, researchers found.

Diagnosing people at risk of bipolar is challenging because the early signs of a mental illness do not specifically predict the disorder. Picture: iStock
Diagnosing people at risk of bipolar is challenging because the early signs of a mental illness do not specifically predict the disorder. iStock Credit: istock

The University of Sydney’s Brain and Mind Centre report titled “Can We Improve the Prediction of Early Onset Mania and Hypomania in the Community?” stated identifying people at risk of bipolar was challenging because the early signs of a mental illness do not specifically predict bipolar disorder.

The study followed a sample of young Australians from childhood and tracked which individuals developed bipolar disorder by young adulthood.

The study found that the best way to sort individuals into higher versus lower risk of developing bipolar disorder was to combine indicators including genetics, family history and clinical risk, such as depressive symptoms.

But the authors note there is still disagreement among experts on the best ways to identify the risk of developing the illness in scenarios with lower transition rates.

About 5 per cent of children with parents who have bipolar will develop the disorder over their lifetime and have a 55 per cent risk of developing another mental illness.

Research found mood symptoms and syndromes may exist below a threshold and before the onset of hypomanic, manic or depressive episodes reached an indexed threshold.

Psychotic symptoms may also be reported by people who develop bipolar disorder.

Dr de Haan said combining the right biomarkers with clinical assessment, recognising that bipolar disorder can exist before it meets a formal diagnostic criteria, and listening to young people and their families could enable earlier diagnosis and improve long-term outcomes.

A combination of biomarkers could potentially predict bipolar disorder onset. Picture: iStock
A combination of biomarkers could potentially predict bipolar disorder onset. iStock Credit: istock

“I kept failing. I didn’t understand why it deeply affected my self-esteem,” she said.

“It’s not just about the symptoms of the illness but also their impacts on who you are, the life you can live and your loved ones.

“I’d gone from being this really switched on, high achieving, classified as gifted young person who was accelerated through school to barely being able to function, yet I had hopes and dreams that for me were just going down the drain.

“What got me through is for some reason, and it’s not like this for everyone, I just didn’t give up and I had people who kept believing in me.

“The difficulty was through that whole period, I didn’t know that there was something wrong. I knew that I was struggling but I didn’t understand why or why I had changed.

“I didn’t know it was bipolar.”

Dr de Haan said this new research discussed how using family history, genetic and clinical markers together, with the right approach, could potentially predict bipolar disorder onset in adolescents and young adults in the peak range of onset for mood and psychotic disorders.

“To diagnose bipolar, you typically have to meet the criteria for hypomania or mania, otherwise, it’s depression,” she said.

“The difficulty is that you often have to get really sick before you get diagnosed.

“We shouldn’t be waiting until a young person develops hypomania or mania, by then it’s typically destroyed their life to an extent.”

Dr de Haan said in most areas of medicine, waiting a decade to diagnose and treat a serious illness would be considered unacceptable, but many people with bipolar disorder waited this long or longer for an accurate diagnosis.

Things can turn for the better with the right diagnosis. Picture: Supplied
Things can turn for the better with the right diagnosis. Supplied Credit: Supplied

“Delays in diagnosis miss opportunities for earlier, more appropriate care, and ultimately the ability to live the life you want with joy, meaning and purpose,” she said.

“By then, for people with bipolar, their life has often fallen apart.

“Quality of life is often significantly impacted, some people even die. It’s no different for those living with undiagnosed, untreated or incorrectly treated bipolar disorder.

“A decade is a long time to be sick, to not know what’s wrong, to have all of that stuff impact you. I genuinely feel lucky to be alive given this delay and don’t think I would still be here had that continued.

“You don’t get some of those years back. I can’t get them back at all and it has knock-on effects.”

Dr de Haan said with the right intervention, life could change for the better.

“I’m a living testament to this,” she said.

“After my treatment was optimised seven years ago, I’ve been thriving and loving life.

“I’ve been able to complete multiple higher education degrees, build a wonderful career in private practice and research and have a family – things I never would have thought possible in my younger years.

“I now know I will be able to live that life I always dreamt of. I have hope again.

“With the right diagnosis and treatment, things can get so much better. This essential research is helping us find a pathway to making this happen for young people sooner.”