How the stigma of schizophrenia can be harder than the condition

Phoebe Kingston was diagnosed with schizophrenia in her late 20s. She told The Feed that dealing with the stigma attached to the condition has been even more challenging than living with it.

SCHIZOPHRENIA

Glenn Jarvis (left) and Phoebe Kingston (right) have both been diagnosed with schizophrenia Source: Supplied

At 28 years old, Phoebe was diagnosed with schizophrenia and remembers the medical advice she received at the time as “traumatic” and “hurtful.”

“I was advised not to try and ever get a degree because of the stress. [I was told] it would be risky and I might end up with more hospital admissions,” Phoebe said.

“I look back, thinking, ‘wow... I'm now doing all that stuff. I'm actually doing all that stuff’.”

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Fourteen years on, Phoebe is an advocate for mental health organisation SANE Australia, as well as working several jobs.

PHOEBE
Phoebe is a peer ambassador at SANE. Source: Supplied


She’s also happily married, the mother of a four-year-old boy and spends her free time volunteering. 

“I think there is this view that we're struggling all the time and we're trying to just survive. But there's a lot of regularity in my life that is very similar to everyone else's,” she told The Feed.

May 24 is World Schizophrenia Day. Schizophrenia is a complex mental health issue that affects roughly 20 million people worldwide, according to a spokesperson at SANE· 

Estimates from the 2010 National Psychosis Survey showed 64,000 Australians aged 18–64 - or about 0.5 per cent of the population - experienced a psychotic illness and were in contact with mental health services each year. 

 

A spokesperson at SANE told The Feed schizophrenia, “can cause periods where people lose touch with reality.”

“Symptoms of schizophrenia can include... hallucinations, delusions, unusual or disrupted speech, disorganised behaviour, low energy, low motivation, or lack of emotional expression,” the spokesperson said.

“These symptoms cause significant difficulties in various areas of a person’s life, such as in social situations, at work or school, or with daily tasks of living, like shopping.”

Phoebe doesn't agree with the current mental health care that's provided to those with schizophrenia. She also prefers not to use clinical terminology.

While Phoebe exhibits some symptoms of schizophrenia, she believes the stigma associated with the condition is a much heavier burden.

“I have good days and bad days…. It's just that when I have a bad day, it can involve things that are more unusual, less understood and not experienced by most people,” she said.

“A lot of the challenges are actually the distress caused around the prejudice, the stigma and the discrimination that I have to wade through.”

In October 2020, SANE Australia published the exploring stigma and discrimination among Australians living with complex mental health issues. 

phoebe
Phoebe says living with the stigma of being diagnosed with schizophrenia has been difficult at times. Source: Supplied


Almost 70 per cent of participants said they had been most affected by stigma in relationships, while 43 per cent had been most affected in employment.

A SANE spokesperson said common misconceptions include the assumption that all people living with schizophrenia hear voices or have ‘split personalities’.

“There’s a strong public perception that people experiencing schizophrenia are likely to be violent, even though this isn’t true,” the spokesperson said.

“People living with schizophrenia are more likely to be the victims of crime than the perpetrators.”



Like Phoebe, Glenn Jarvis was in his late 20s when he was diagnosed with schizophrenia. He was working in London in finance when he suffered several psychotic episodes. 

His family brought him back to Queanbeyan in the ACT where he spent the next two years in and out of mental health units, and on and off medication while coming to terms with his condition.

“That was horrible. I did everything from getting capsicum sprayed to handcuffed to roughed up a little bit,” Glenn told The Feed.

“Plus all the delusions and hallucinations can be really nasty as well.”

Eventually, Glenn was released and found himself with no job, no money, few friends who understood what he'd been through and living in supported accommodation.

For Glenn, getting his life back while grappling with his diagnosis was initially “really difficult”.

He remembers being called names at his local bowling club and struggling to find employment.

“A lot of people have a really bad attitude towards people with schizophrenia,” Glenn said.

“It was really hard to find a job... because how do you explain to someone what you've been doing for the past two years when you’ve been in and out of psychiatric units?”

Two decades later, Glenn now works part-time as a support worker and is determined to improve the lives of those with mental illnesses. 

“That gave me direction and helped me slow down and appreciate my life more,” he said.

“I have a much richer life probably than I would have had if I didn't have schizophrenia.”

For Phoebe, her life is just as fulfilling as those of her friends who have not been diagnosed with mental health conditions.

“I go out party, dance, get drunk, have a great time like the next person. I've done some university studies.”

“If I had listened to that advice and never tried anything, my life right now would be pretty bland. Whereas right now, I'm having a wonderful, fantastic life.

“I believe that it's only when our society gets a lot more progressive and accepting that we'll see the type of society and mental health system that we deserve.”

Anyone in need of support for schizophrenia or other complex mental health issues can access our SANE Support Services. 

SANE has phone and online counselling and referrals from qualified counsellors. Call 1800 187 263.

Visit saneforums.org to receive peer support. It’s a safe and supportive space moderated 24/7 by health professionals.

Those needing mental health support can also contact Lifeline on 131 114 or Beyond Blue on 1300 22 4636.


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6 min read
Published 24 May 2021 at 9:56am
By Eden Gillespie
Source: SBS