Displaying items by tag: schizophrenia

If there’s a central theme to the last five years for Cameron, it’s change.

He’s changed perspectives: there was a time when a diagnosis of schizophrenia eighteen years ago meant that his brain was ‘broken’.

In 2018 his participation in the SBS reality TV show How Mad Are You proved otherwise. Cameron was one of five people with a history of mental illness who was mixed in with five others for a panel of experts to observe. The aim was for the experts to observe and assess each person to determine who they deemed had mental illness. Cameron found the experience eye-opening.

“I thought that having schizophrenia meant that my brain was schizophrenic, but it’s not as cumbersome as that.”

How Mad Are You helped show Cameron – and the audience – that mental illness was not the whole picture to a whole person.

"Schizophrenia is just a part of my brain; my brain can function at a relatively normal level when it needs to. That’s something that’s given me a lot of confidence.”

He’s changed roles: becoming a dad brought with it new challenges and new rewards. Experiencing the happiness of being a family is a tangible reminder of what he has achieved.

Even so, life isn’t without its challenges.

“When you have a brain that is…against you 90% of the time it’s difficult to maintain your confidence. There's some very hard-wired difficulties with the way that my brain thinks that affect my confidence daily.”

One of the recurring troubles of complex mental health issues (CMHI) is the isolation. Finding others to talk with has been a challenge, and the fear of other parents finding out his diagnosis made the early years of fatherhood especially lonely.

“The isolation is a very difficult part of it and it doesn’t help when the illness rears its ugly head. And that’s just something that we have to get through as a family.”

This is when the SANE Forums can be most valuable. Something as simple as reading others’ posts can shorten that gulf of isolation and remind Cameron that there are other people out there whose experiences he can relate to.

More recently, Cameron’s changed minds. Induction as a SANE Board Director has brought with it the opportunity to go beyond telling his story. It’s meant having a seat at the table to say “this is what we should do”. This kind of lived experience engagement is a shift he’s noticed over the years.    

Ten years ago, it felt like people with lived experience of complex mental health issues were looking for ways to share their stories of mental illness in an effort to raise awareness and empathy in the wider community.

Nowadays, things have evolved to more than just sharing stories – it’s also about having the opportunity to create change. 

“It’s about more than the opportunity to say ‘hey this is what happened’. It’s about listening to us when we say ‘hey this is what we should do'.

We’ve come to a point where people aren’t just asking about how we can share our stories but about how we can change things.”

For Cameron, this is the new frontier for CMHI.

“The only way we're going to solve this and cure this is to go beyond people talking about their experiences…it’s about suggesting what we think might help people heal.”

When I was diagnosed with Schizophrenia at 18, I thought that I’d be sitting in a room for the rest of my life. I thought that I wasn’t going to be able to do anything I wanted to do. I felt so hopeless and like everyone around me was giving up on me too, like nobody expected me to get better.

People think that if someone’s really unwell at one point, they can never recover from that. But, they can. I’m living proof of that. Still, I often feel like I’m taking one step forward, ten steps back, but when I take a step back at look at the big picture, I can see how far I’ve come. A bit over a year ago, I couldn’t even really go outside by myself, and now I’m doing things I never thought I could ever be capable of. I almost can’t believe it. It’s hard to look at myself positively, but if someone else were me, I’d think they were amazing.

My battle with my mental health started in high school. I struggled with depression and anxiety, but towards the end of school, I started experiencing something different. I didn’t really know what it was, and I thought that I could just ignore it. I moved out of home and started uni. I thought that I could leave everything that happened during high school behind me – that if I could just ignore everything going on in my head and try to push through, it would be ok. But it didn’t turn out that way.

I’d never lived out of home before. I felt isolated and alone, and I just couldn’t handle the stress alongside everything else going on in my head. That’s when things really took a turn for the worst, and I experienced my first episode of psychosis.

I felt like I was being watched all the time. I thought that someone was watching me through a camera in the air conditioning. I was completely paranoid. I couldn’t focus on anything or do my uni work. I heard voices saying that everyone hated me, they didn’t want me around and they wanted me to die. I became totally isolated.

I knew that I needed help – and on one level I did want help – but I also felt like I didn’t deserve it.

I remember the day when they told me I had schizophrenia. I didn’t know much about it at the time. I just knew all the stereotypes surrounding it. I was thinking ‘Does that mean I’m dangerous? Does it mean that they’re going to lock me away’. They just said it like it was nothing. But for me it was this huge, life altering thing.

There’s just not enough understanding, and so much stigmatisation surrounding this illness. People get all their ideas from horror movies. They can be really flippant, calling people ‘psycho’ or ‘schizo’. It’s a pretty scary illness , but it doesn’t make the people who have it scary people. We’re human, just like everyone else. We all want the same things.

I still experience psychosis, but I can manage it a lot better than I used to be able to. I understand what it is now and why it’s happening. I’ve learnt ways to help manage it, and I know how important it is to talk to people about what I’m dealing with, rather than keeping it all to myself.

I’m so passionate about sharing my story now, because if people understand what Schizophrenia is, it will make it easier for people to get help early. I want my story to show others that it’s not the end of your life if you’re diagnosed with schizophrenia.

I’m living proof that you can keep going and live a full life.

StigmaWatch received the following response from an editor after a StigmaWatch report let us know a journalist had referred to Melbourne weather as ‘borderline schizophrenic’.

“Yesterday I was made aware of the insensitivity of this comment and removed it immediately. Apologies as this is something I overlooked, but will be much more aware of this in future and inform the writer plus our team of writers about the use of such terms to do with mental illness. I will pass on these (mental health reporting) guidelines as well as I understand the importance of the issue and the damage it could cause if not reported on correctly. Sorry again and thank you for bringing it to our attention.”

James has a mission. At the age of 36, he found something that gave real purpose to his life – to educate young people about the dangers of drugs which can trigger mental illness.

Tentatively he sat down and began to write:

When I opened my eyes it was morning, but not your average start to the day. The distinctive voices of four friends I had not seen for months were talking to me inside my head.

He had taken himself back to the day he was admitted to Rozelle Hospital in Sydney when he was just 18.

Putting into words the experience of his drug-taking, mental illness and the long journey to reconstruct his life took James two years.

‘I found it very cathartic,’ he says. ‘I wouldn’t be able to remember it all now because I dealt with it by writing the book.’

He describes the process as healing not only for himself, but also for his mother, Victoria, with whom he lives in Sydney. She read everything he wrote each day. ‘It was horrendous,’ she recalls with a shudder. ‘It brought everything back.’

James relates his story with raw honesty and great courage. He started taking drugs when he was 15 because everyone he knew was doing the same.

‘I never thought about the damage,’ he says. ‘I didn’t know what Schizophrenia was before someone told me I had it. I went to one rave party called Psychosis 4 and I didn’t even know what Psychosis meant. Then all of a sudden I just messed my whole brain up.’

He wrote the book –  Escaping to Reality – ‘to stop people from ending up like me. I can’t even hold a part-time job at the moment.’

Since that day when he was first admitted to Rozelle, James has been hospitalised four times. Victoria has been there for him every day.

His mother had no idea James was taking drugs.

‘It has been a huge learning curve for me,’ she admits. ‘At the beginning when James became ill, I didn’t know what to do with him. We took him to Rozelle and the doctors were great, but watching him go into the locked ward was like a scene from One Flew Over the Cuckoo’s Nest.'

When James came home from hospital he would lie for hours on the settee in what Victoria describes as ‘his great big old coat’. She felt helpless and isolated.

'He had done so well at school.' she says, 'I was tempted to say to people that that is what James is really like – that this James is not him. Apparently mothers do this.'

Although she says she is over it now, Victoria’s anguish is still palpable.

At the start of James' illness, during the months before he was settled on the most helpful medication, he was, says Victoria, in a terrible state. At one point Victoria took him back to hospital, where doctors tried him on a new medication.

‘I hung around for hours,’ says Victoria. ‘Eventually they said I could go and see him. He was asleep so I shook his shoulder gently. He looked up at me and said, "Hello Mum." It was marvellous! He was back – just like that.’

Once his medication was working well, James started a traineeship in Star City Casino. He was sharing a house with friends and enjoying his work but unfortunately slipped back into the party scene.

He stopped taking his medication, started using ecstasy and wildly overspent on his credit card. He was soon unwell and back in hospital.

‘Once I got out of that place,’ he says, ‘there was no way I would ever touch drugs ever, ever again. I just didn’t want to destroy my whole life completely.’

James now lives quietly, taking each day as it come. He sees his psychiatrist once a month, takes his medication, and gets on with his life.

He enjoys a game of pool, rides his mountain bike in the bush, and practices on his beloved electric guitar. He would like to play in a cover band one day.

‘That’s not taking me back into a drug environment,’ he hastens to add. ‘I would be a damn fool to give up everything I’ve worked for.’

James still gets 'the horrors' every now and then – the voice in his head, severe paranoia and attacks of extreme anxiety. When that happens he takes sanctuary in his mother’s lounge.

‘I come and sit in here,’ he says, ‘It’s safe. I don’t want to talk to anyone – I can’t. It can last 20 minutes or all night. No-one can understand it. If there is a hell, that is what it is.’

James is careful to avoid what he calls bad stress. ‘Caffeine will do it,’ he says. ‘Alcohol, or even being in a crowd.’

Writing and publishing his book has given direction to his life. He had an edition printed privately and is keen to bring it to the attention of Year 10 students in schools.

He is particularly thrilled by a message he received from a friend of his father’s, whose son had read a copy of Escaping to Reality.

He sent James an email saying his son had stopped taking marijuana, stopped smoking cigarettes and turned his life around at school.

‘Your words have made a difference,’ he told James. ‘You helped my boy and I thank you.’

‘If I had had this book at 16 or 17, things would have been very different for me too,’ he says quietly. 

When publisher Ian Syson read the manuscript of Sandy Jeffs' autobiography, Flying with Paper Wings, he was blown away by it. ‘It’s a story of survival,’ he says. ‘When I read it, I thought, how does she live with this?'

Sandy admits she found the five years it took to write the book extremely difficult. ‘I struggled for my sanity every day,’ she says.

She continues to grapple with the hallucinatory voices she hears, a symptom of the Schizophrenia she has lived with for over 30 years.

‘I don’t hear them during the day, but every night when I go to bed they persecute and denigrate me and now I wake up to them as well which is a real pain in the arse,’ she says. ‘I think to myself, I just can’t do this any more.’

At times, she has been tempted to end her life. But Sandy resists. She keeps going for the sake of her friends, for her public work, for ‘the stuff I do’, and to feel connected to the world.

Sandy has good friends who support her. She remains warm, funny and enthusiastic while battling demons few of us could imagine.

Difficult days that feel insurmountable, she breaks down into increments: 15 minutes for breakfast, half an hour to check emails, set times for washing clothes and doing dishes. She fills gaps by playing CDs or listening to the radio.

‘Schizophrenia is a horrible housemate,’ Sandy says. ‘You have to learn to understand its moods and the way they affect you. It might be through voices. It might be negative thoughts. It might be delusions. Living with that is hard work.’

Exercise is important for Sandy. For many years she has played with a local tennis group, and at the age of 47 joined a hockey team. Quite apart from the social and health benefits, the camaraderie, she says, is intoxicating.

Through her public presentations Sandy has discovered that she is a powerful communicator. It fills her with wonder, especially when she gets a standing ovation.

Ian Syson is not surprised at her success. (Flying with Paper Wings was short-listed for The Age Book of the Year, and received the SANE Book of the Year Award, and a Commendation in the Australian Human Rights Awards.)

‘She is a remarkable person,' says Ian. ‘People hear her story and want to read the book. It’s selling as well as anything I’ve ever published.’

Sandy shares a house in the country with friends, Robbie and Dido, who don’t hold back when they feel ‘tough love’ is needed.

‘They’ll say, “You’re hearing voices, aren’t you?” And my voices are going, "Don’t tell them, don’t tell them!" And they say, "We know – we can tell by your face so don’t lie to us."'

The publication of her first book, Poems from the Madhouse, changed Sandy’s life. ‘I entered my forties with no future, identity or self esteem, and left that decade with success, hope, and a much stronger sense of self.’

Four more volumes of poetry, and now her memoir, have given Sandy a significant public profile. Her capacity to write with honesty and humour about the realities of living with Schizophrenia touches people’s hearts. ‘I feel as though I am speaking for those who have been silenced by the illness,’ she says.

Sandy’s autobiography has achieved even more. As she writes: ‘It has allowed me to delve into the darkness, to return with truths and lost dreams, and turn them into poems.’

There is a great deal of love in Kylie's family. It is plain to see as she chats with daughters Emma-Leigh and Madeline, the three of them laughing warmly together.

The girls also listen attentively as Kylie recounts the tough times she has experienced as a single mother with Schizophrenia. Their faces beam when she acknowledges how crucial they have been in her recovery.

As Kylie tells her story, it becomes clear that her resilience and good parenting have played a big part in Emma-Leigh and Madeline being so mature and well-balanced.

Kylie became unwell at a stressful time in her life: a relationship breakdown was followed by the death of her mother and then the birth of her second daughter. Within six months, Kylie was diagnosed with Schizophrenia.

For some years she was unemployed and lived with the girls in sub-standard housing, always lacking for money and battling the effects of her illness.

‘The ill-fitting curtains showed my poverty like a banner,’ she says, ‘but I was too ill to care.’

These were hard years for Kylie who, in spite of her illness, held the family together. ‘No child protection issues came up with us which is rare for someone as sick as I was,’ she says.

Like many children who have a parent with mental illness, Emma-Leigh had learning difficulties at school and was bullied for a time. Her teacher was unsympathetic.

In desperation, Kylie approached a Catholic primary school in the country town where she lives. The Principal agreed to take both girls, and the support of the school made a profound difference to all their lives.

At school, the girls’ extraordinary qualities are now appreciated and acknowledged. Their reports regularly comment on their unusually high level of concern for others.

It was Kylie’s concern for her daughters which led to her giving up smoking a few years ago.

‘Smoking did not make me feel better,’ she says. ‘It was a crutch. There are far better coping strategies for mental illness than smoking, not to mention the cost and the effects on my health.’

Kylie had developed a permanent bad cough, and she came to realise that smoking was controlling her, rather than the other way around.

‘I found out more about the effects of smoking – the addictive nature of it, the damage to my health,’ she says. ‘I then used patches to help me quit and asked friends never to offer me a cigarette. The girls were my inspiration.’

Shocked at the cost of nicotine patches, Kylie spoke out in support of SANE's campaign for the Government to subsidise their cost, to help people on a low income to quit. She was delighted when the patches became available on the Pharmaceutical Benefits Scheme.

Determined to lead as full a life as possible, Kylie attended a number of rehabilitation groups run by a local community health service and stayed on as a peer support person.

This led to a Diploma of Welfare in TAFE and a demanding job as a Community Support Worker with a PHaMs (Personal Helpers and Mentors) Program which has a strong emphasis on recovery.

The people I work with are socially and geographically isolated by mental illness,’ she says. ‘We see people in their own homes, helping them to re-connect with their communities.' Kylie later become a member of SANE's Board of Directors where her personal and professional experience brought an invaluable perspective to discussion of SANE's work.

She recognises that clinical health services treated her symptoms well when she was unwell, but also stresses that she only started to recover and grow as a person after attending rehabilitation programs and thinking about getting back to study and work again.

Kylie finds the best way to maintain her own health, apart from medication and sound sleep, is having a routine in place. She thrives on the daily rhythms of school and work. She notices a dip in school holidays.

Emma-Leigh and Madeline support Kylie in every way they can. They help with the housework and cooking, remind her to take her medication and ensure she gets enough rest. Schizophrenia has cost her the ability to sleep naturally.

‘At the weekend, Mum is tired and needs to catch up on her sleep,’ says Madeline. ‘We help out at home – I like to clean the kitchen, feed the animals, clean out the fish pond and rabbit cages.’

The girls are surprisingly cheerful about their weekend routine. ‘We make it fun,’ says Madeline.

If their mother starts to hear voices – auditory hallucinations – the girls curl up beside her and sing into her ears to drown them out.

From her own experience and through her work, Kylie is well aware of the potential difficulties facing children who have a parent affected by mental illness.

‘Young carers like Emma-Leigh and Madeline often slip under the radar,’ she says. ‘They have big responsibilities at home which can affect their performance and behaviour at school – yet this often isn't recognised.’

Kylie has a strong support network of relatives, friends and neighbours who watch out for her daughters in case she becomes unwell, and the girls have also attended support groups specially for young people in their situation.

In the midst of a busy day, Kylie is often reminded of the close bond with her daughters. She might open her work diary and find a note saying: ‘Hi, hope you have a good day. Madeleine.’

She might also find herself gazing at the picture on the wall of her office. It shows the head and shoulders of a woman cut into pieces but then stuck together again. Emma-Leigh made the picture when she was seven years old. She says she did not consciously draw her mother but when Kylie saw the picture she immediately identified with it.

She was amazed, she says, that a series of symbols Emma-Leigh had drawn around the head, including rainbows, were all symbols of recovery and hope.

Evan 'has always wanted help other people', says his wife, Tammy. ‘And this is what he's doing now – he touches many lives.’

Evan's job is to help give a voice to people with mental illness who come from non-English-speaking backgrounds. His formal title is 'Culturally and Linguistically Diverse Mental Health Consumer Advocate'. He and five colleagues, whom he mentors, talk to people affected by mental illness in ethnic communities about their experience and how they can be helped better. They also give talks to local social and sporting groups to raise awareness of mental health issues.

Evan was born in Egypt. The family migrated to Australia when Evan was six and he grew up speaking Arabic and Greek (his mother's tongue) as well as English. After a happy childhood, life changed for Evan in his late teens.

‘I started to giggle and laugh a lot and did not want to interact with people socially,’ he says. ‘I also became paranoid, thinking people were following me and that my thoughts were being broadcast.’

Evan's parents realised something was wrong and turned to their Greek Orthodox priest for help. He prayed over the young man.

After a while the symptoms became more severe and Evan's parents took him to their family GP, who said it was mild 'nerves', and put him on sedatives. This made no difference.

‘My parents were confused and worried,’ Evan says. 'Their English wasn't as good as mine and they didn't know what to do. Eventually they took me to a hospital emergency department, and I was admitted to the psychiatric ward for three months.’

He was told he had Schizophrenia – but that it was an illness which could be treated.

‘Doctors can provide medication. They can give you recreational activities and advice. But the desire to get better has to come from you.’

Evan educated himself about his Schizophrenia, took his medication, made an effort to stay socially active and eventually married and had two children. While that relationship ended after twenty years, he has since met Tammy and the two have been married for five years.

‘My mum got me back to the Greek Orthodox Church after a long break, and there I met Tammy, who not only shared the same interests, background and beliefs, she also had Schizophrenia.’

‘I found him kind, gentle, quietly spoken and caring,’ Tammy says. ‘I fell in love with him.’

‘It was a double bonus: someone who understood the illness and someone who shared my beliefs and values.’

Tammy and Evan also watch out for each other. ‘We understand each other's symptoms when they flare up,’ he says.

Tammy takes special note of the times Evan is tired, restless and flat. ‘I tell him he has to look after himself, that work can wait,’ she says. ‘It's quality that matters.’

Evan admits he has a tendency to do too much, as his work has become a passion.

He was studying for a science degree when he first became ill and his goal was always to do work which would help others. He never finished the course but he has achieved his dream in other ways.

Today he helps other people experiencing the baffling and often frightening symptoms of mental illness – and provides an example to show it is possible to come out the other side, to manage them, and to be happy.

As well as his work with ethnic communities, Evan writes articles for the media and speaks on SBS radio, highlighting the availability of interpreters for people concerned about mental health problems when talking to health professionals or helplines.

He is well aware that ethnic families, although strongly supportive of each other, often lack confidence in speaking English and may not understand the importance of early intervention with mental illness.

Evan also sits on a number of boards and committees including the Royal Australian and New Zealand College of Psychiatry (RANZCP), Victorian Mental Illness Awareness Council, and Advocacy Disability for Ethnic Communities (ADEC). He runs statewide mutual support groups for people with mental illness as well as a local group called Spectrum of Cultures. Yet another role is conducting community education classes for GPs.

Now in his 50s, Evan has returned to study and is doing a Leadership course linked to the RMIT Community Development Diploma at RMIT University. Evan has also completed a Certificate IV course to educate himself on how to deal with people with all kinds of disability.

To bring some balance into his life, Evan power-walks, reads, gardens and enjoys Zumba dancing exercise classes in his 'spare time'. He has been a soccer coach and a well-known referee for Soccer Australia for many  years.

Tammy's love and support have transformed Evan's life but the success of his work is deeply rooted in his personal determination to find healing through what he calls self-advocacy.

‘Self-advocacy is about learning to stand up for yourself before you can stand up for others,’ he says. ‘It is about building your confidence and self-esteem. It takes time.’

As Evan knows from his own experience, it does take time but he is a sterling example of how it is possible to get there, happily and well, in the end.

TW: This article mentions suicide. 

Jock is a fit, healthy man. A man who runs marathons. A public speaker. A man filled with the joy of life, and yet only a few years ago he was barely functioning as a human being.

Jock's mother, Dianne, describes him in those days as ‘overweight, depressed and lethargic, sometimes sleeping 20 out of 24 hours’.

‘It was a desperate, awful time,’ she says. ‘Jock probably weighed about 170 kilos. He was bloated, and looked terrible. He had no social life or social skills, and had trouble taking anything in or communicating. We were in despair.’

In his early twenties, Jock had been diagnosed with Schizophrenia, Obsessive-compulsive disorder and Anxiety. The years passed, and Jock showed no signs of improvement. His mother, two sisters and brother were beside themselves.

‘Whenever I called the clinic over my concerns, they just increased the dosage of Jock's medication,’ Dianne says.

Dianne, a strong and remarkable person, knew there must be an answer somewhere. She refused to listen to well-meaning people who told her Jock should go into an institution.

It was then she discovered a local community organisation, ERMHA (Eastern Regional Mental Health Association) which supports people with mental illness in a number of ways. Dianne persuaded Jock to go to their drop-in centre a few days a week.

‘It was a huge step,’ Dianne says.

While he was at ERMHA one day, Jock had a blackout and wandered off. He ended up in hospital. A neurologist was horrified at the amount of medication Jock was taking. Tests showed there was nothing neurologically wrong with Jock and that the cause of many of his symptoms was the excessive amount of drugs he was prescribed.

Dianne took Jock back to the clinic where he had been given the medication and saw a psychiatrist who read Jock’s history and threw out all but one of his tablets.

‘Within three months of the change in his medication, Jock took over his own life. He didn’t look back.’

At the same time, Jock’s GP referred him to a psychiatrist to deal with the Obsessive-compulsive disorder. ‘This worked brilliantly,’ says Dianne.

Jock started to feel alive again.

The combination of symptoms and side-effects of medication had given him a craving for caffeine, cigarettes, alcohol and junk foods. He decided to lose weight, quit smoking and drinking and improve his diet.

‘I did this myself,’ he says, ‘but got fantastic support from my family.'

He asked his brother-in-law Jason to help him get fit. They started with a run round the block. ‘We did about half,’ says Jock. ‘I was so out of puff it wasn’t funny.’

At the time Jock recalls thinking, ‘I don’t know if I can do this’. But he made himself take what he calls baby-steps – boxing practice or a short run – every day, and set himself the seemingly-impossible goal of running a half-marathon within a year. Amazingly he did it, and he and Jason raised $10,000 for SANE. They were among the top four fundraisers out of more than 17,000 participants.

On tough days Jock thought of his friend Pete who had ended his life. ‘He had Bipolar disorder and his death was a terrible shock. I knew he’d be happy about how I was going and it kept me on track.’

At the same time as he was getting stronger physically, Jock was enriching his life via ERMHA.

He took a couple of catering courses there and was accepted for the 20-week ‘Life Skills’ program run by the MadCap Café, a non-profit organisation helping people with mental illness re-join the workforce.

Jock now has a permanent part-time job there and loves it.

‘For years I found it difficult to communicate,’ he says, ‘but working with customers, especially, means my confidence has really soared.’

Jock was invited to speak at the official opening of a new MadCap Café. He shook with nerves but afterwards felt good.

‘I would like to speak in public more often,’ he says, ‘I want to help people who are in the same position I was, because if I can change my life around, anybody can.’

To overcome his nerves Jock has joined Toastmasters and to his delight has been asked to speak at the opening of a third MadCap Café.

Jock has taken up yoga and meditation, which he finds therapeutic, and keeps up his physical fitness by cycling and going to the gym.

Dianne now sees herself as a backstop in Jock’s life and is thrilled. 'I give him a good home base and support the decisions and choices he is making,’ she says.

She believes if he had stayed on the unnecessarily heavy doses of medication he might be dead by now. ‘As it is, he is now this lovely, intelligent, bright, beautiful person.’ She says.

She points out that Jock’s sister Julianne – Jason’s wife – is 14 years younger than him and only ever knew him as unwell. ‘She keeps looking at him and says she now has a wonderful big brother in her life.’

‘His other sister Andrea knew Jock before he became sick,’ she adds, ‘and tears well up in her eyes when she sees him with her kids.’

For the family, Jock’s transformation is a miracle. As he says himself, ‘I used to exist but now I have a life.’

Where to from here?

• For 24/7 support if you're stuggling, contact Lifeline on 13 11 14 or Suicide Call Back Service on 1300 659 467. 
• To chat with a supportive online community who get it, head over to our Lived Experience Forum. Start connecting today. 

Quick facts 

• Antipsychotic medication can help manage symptoms of psychosis. 
• Antipsychotic medication can be helpful for some, but may not suit everyone. 
• It can take time to find the best medication and dose for you.  
• It is important to talk to a doctor about different options, side effects, and how to use medication. 

• About antipsychotic medication 

  Antipsychotic medication refers to a few types of medication that can reduce symptoms of psychosis, like hallucinations and delusions. They also help prevent those symptoms from returning. 

  These medications work on brain chemistry – neurotransmitters that influence thoughts, mood and emotions. 

  Antipsychotic medication is often used for the treatment of schizophrenia spectrum disorders, but can also be used as part of treatment for other mental health issues. They can be used alongside other forms of help such as psychological therapies or community support. 

• When are antipsychotic medications used? 

  Antipsychotic medication can be life-changing for some people, although it may not suit everyone. It is ok if you need, or want to try, medication for your mental health. 

  Antipsychotic medications are considered a front-line treatment for psychosis. They can be prescribed for an episode of psychosis, or as part of longer-term treatment. They help reduce symptoms such as delusions and hallucinations, and can also help with mood, memory, planning, and other thinking problems. Antipsychotic medication can also be helpful in the treatment of other mental health issues, such as bipolar disorder and depression. 

  They are not addictive, do not make you euphoric, or change your personality. All antipsychotic drugs are designed to do the same thing — reduce psychotic symptoms and keep them away. However, they’re known to affect people in different ways, so your experience of taking them will be unique to you. 

  Antipsychotic medication can be prescribed alone, or with other medications. Many people use antipsychotic medication to feel more stable and find it helps them engage with other support services. People often use them alongside other forms of help like psychological therapies, support with housing and employment, physical and occupational therapy, and more. 

• Is antipsychotic medication effective? 

  Antipsychotic medication is generally effective. Most people with psychosis have fewer symptoms after starting medication. 

• What treatment with antipsychotic medication involves 

  Initial consultation and prescription 

  Antipsychotic medication is prescribed by a medical doctor (a GP or a psychiatrist). A doctor can discuss options for you, and prescribe you a dosage that they feel matches your symptoms and circumstances.  

  Different medications work for different people; you and your doctor can talk over to help decide which is most likely to be right for you. While there is usually a period of trial and adjustment, there are some things that can be worth discussing to help decide on a treatment plan: 

  • The impact and severity of symptoms. 
  • What different types of medication are available  
  • What your doctor recommends, and why 
  • How long it might take to start working 
  • How long you will need to take it for 
  • Any side-effects and how to manage these 
  • What to do if you wish to stop taking the medication 
  • Any allergies or physical health problems you may have 
  • If you are pregnant or planning to become pregnant 
  • Any other medications that you are taking, or have taken previously 
  • How and when to take the medication  
  • How to store medication safely 
  • Other factors such as foods which may need to be avoided. 

• Taking the medication 

  There are two ways to take antipsychotic medication: by mouth or as a depot (sometimes called a ‘long-acting injectable’).  

  • Medication by mouth usually means a tablet. It is important to take medication as directed.  
  • Medication by depot is a regular injection, meaning you don’t have to remember to take it. It is a slow-release medication, so it lasts a lot longer than a tablet. 

  Depots are used if there are challenges swallowing medication. They are also used if there’s a risk of forgetting or stopping taking medication, which can lead to a rapid worsening of symptoms. You can choose to take medication by depot. There are also circumstances where a doctor can legally require someone to take medication by injection, even without consent. That’s only done rarely, and always with health and safety in mind. 

  It can take several weeks, or even a few months, after the first dose of medication before it has an effect. Checking in with your doctor over time can help keep an eye on how you’re going, and monitor any side effects.  

  If you have any challenges – such as struggling to remember to take medication – it important to raise these with your doctor. 
   
  Choosing the best medication is not always straightforward because the way people respond to medication is different. This means that finding the right one for you may involve trying one or more types, or making adjustments. 
   

  Coming off the medication 

  Antipsychotic medication is often long term. Many people with psychosis need to take medication as prescribed on an ongoing basis to ensure their symptoms don’t return. 

  When medication starts working and symptoms reduce, people can be tempted to stop taking it. Some people may also want to stop taking medication due to side effects. Others might find that memory problems, or the symptoms of psychosis interfere with their decision-making.  

  Before stopping or reducing any medication it is important that you discuss with a doctor. They can help with decisions about the best path forward. Stopping antipsychotic medication suddenly can cause problems, and lead to a return of psychosis. So any changes need to be done step-by-step under your doctor’s supervision.  

• Types of antipsychotic medication 

  There are two key types of antipsychotic medication available:  

  • A newer group known as ‘second generation’ or ‘atypical’ antipsychotics 
  • An older group, known as ‘first-generation’ or ‘typical’ antipsychotic medications. These are generally only prescribed if the second-generation medications aren’t working for you. 

• Risks and side effects of antipsychotic medication 

  If you’re taking antipsychotic medication, it’s very likely you will experience some side effects. Work is being done to improve medications, but at the moment it’s often necessary to weigh up the benefits of medication against how side effects might impact you 

  They vary from person to person, but can include: 

  • drowsiness 
  • weight gain 
  • unusually dry or watery mouth 
  • restlessness 
  • trembling, especially in the limbs 
  • muscle stiffness 
  • dizziness 
  • eyesight problems 
  • moving more slowly 
  • changed interest in sex, or problems having sex 
  • nausea 
  • constipation 
  • increased sweating 
  • pain or irregularity in menstruation. 

  It’s important to tell a doctor about side-effects as soon as possible, and discuss any concerns.  

  For some people, it can take months to find the right medication — that’s normal. 

  If the side-effects of the medication you’re taking are too severe, or if your psychotic symptoms don’t subside, it might be possible to try other options. 

• Finding out more 

  To learn more, a GP or psychiatrist can provide a personalised discussion about whether antipsychotic medication is the right option for you.  

• Resources 

  • 1300 MEDICINE (1300 633 424) – Medicines Line 
  • Schizophrenia and Psychosis (SANE Fact Sheets) 
  • The patient-psychiatrist relationship: it's a matter of trust (SANE Blog) 
  • Stopping and switching antipsychotic drugs - NPS Medicine Wise 

• References

  1. 4329.0.00.003 - Patterns Of Use Of Mental Health Services And Prescription Medications, 2011’ Abs.gov.au. Australian Bureau of Statistics, 2017. Accessed 17 March 2017.
  2. Galletly et al (2016) ‘Royal Australian and New Zealand College of Psychiatrists clinical practice guidelines for the management of schizophrenia and related disorders.’ Aust NZ J Psychiatry, Vol. 50(5) 1-117

Quick Facts

• Schizophrenia impacts a person’s thoughts, perceptions, emotions, and behaviour.
• A key symptom is psychosis, which can involve periods of false beliefs and hallucinations.
• People living with schizophrenia can benefit from self-care strategies, medication, psychological therapies, and community support.
• It is possible to live a full and meaningful life even if a person has experienced schizophrenia.

• About schizophrenia

  Schizophrenia involves changes in how a person perceives and interacts with the world. It can involve sensory changes and distortions, such as seeing hearing, smelling or feeling things others do not. It can also involve having unusual thoughts or beliefs that others do not share. These may occur episodically, or may persist for longer periods.

  Schizophrenia is part of a category of diagnoses called 'schizophrenia spectrum disorders' or 'psychotic disorders'. These disorders share similar symptoms, especially psychosis. However, they have some differences in symptoms and how long they last. Other schizophrenia spectrum disorders include schizophreniform disorder, schizoaffective disorder, and brief psychotic disorder.

• Symptoms of schizophrenia

  Symptoms of schizophrenia usually develop in the late teens or early 20s – though they can appear later in life, especially in women (1).

  One of the main symptoms of schizophrenia is psychosis. A person experiencing psychosis finds it hard to tell what is real from what isn’t. Psychosis is usually experienced in episodes — short periods of intense symptoms.

  Symptoms vary from person to person — not everyone experiences the same symptoms – and can also change from episode to episode. To meet a diagnosis of schizophrenia, a person must experience two or more of the following over at least one month:

  • Delusions: false beliefs that can’t be changed, even by evidence.
  • Hallucinations: hearing voices, or seeing or sensing things that aren’t there.
  • Disorganised thinking: unusual or disrupted thoughts and speech.
  • Disorganised behaviour: unusual, inappropriate or extreme actions.
  • ‘Negative symptoms’: such as low motivation, fewer expressed emotions, feeling less pleasure in everyday life, or difficulties with attention or memory.

  Overall, symptoms must appear over at least six months (though this may include periods of wellness in between episodes) (1).

  A small number of people living with schizophrenia may act aggressively at times, due to their symptoms. However, it is important to note that people living with schizophrenia are more likely to be survivors of violence than they are to be perpetrators. And, importantly, the vast majority of violence in the community – around 96% – is perpetuated by people who do not experience complex mental health issues like schizophrenia (2).

  A person living with schizophrenia is likely to also have trouble managing at least one major area of their life such as work, relationships, or self-care.

• Recognising schizophrenia

  Schizophrenia frequently begins with general changes to someone’s thinking, emotions and behaviour that are hard to pin down. Examples might include preoccupation with a particular subject, withdrawing from relationships or hobbies, or behaving in a way that seems reckless, strange or out of character. These thoughts tend to come and go, but if left untreated, get worse over time.

• Causes of schizophrenia

  There isn’t a single cause of schizophrenia. Genetics play a big role in the risk of developing schizophrenia, meaning people are more likely to develop it if they have a family history (3).

  But there are other factors that can increase chances of experiencing schizophrenia. These include early developmental challenges, a person’s brain chemistry, stressful social circumstances, and trauma (particularly in childhood).

  There is also a link between substance use and schizophrenia, but this relationship is complex (4).

• How common is schizophrenia?

  Schizophrenia affects roughly 20 million people worldwide (5). In Australia, schizophrenia affects around 2.4 per 1000 people. It is slightly more common in men compared to women (6).

• Managing life with schizophrenia

  Some people living with schizophrenia find that the following strategies can help prevent episodes of psychosis, help them feel better in between episodes, or feel more in control:

  • learning more about schizophrenia
  • finding an individual definition of recovery, whether it’s reducing symptoms or working on other parts of life like relationships or employment
  • looking after physical health including getting regular check-ups
  • improving sleep
  • developing a support network of trusted family or friends
  • accessing peer support
  • learning strategies to minimise stress
  • developing a Relapse prevention plan including identifying early warning signs, what to do when these occur, and who to contact (and making sure family and a trusted health professional have a copy)
  • advance care planning may also be an option for times when a person doesn’t have decision-making capacity. The nature of these statements varies between states.

  Every person will need to find what works for them and it’s normal for this to take time. Check out our lived experience tips for managing life with schizophrenia.

• Treatment and support for schizophrenia

  The best place to start in getting a diagnosis is a GP. They can make an assessment and provide a referral to a psychiatrist for full diagnosis and treatment if needed.

  Schizophrenia takes time to diagnose – some people might receive a predicted diagnosis of schizophrenia quickly, but it can take six months or longer to be confirmed. A diagnosis may also change over time. For example, after new information or experiences are identified. This is normal.

  Early intervention can be helpful. Although the process can be scary, it can be very useful to identify a risk of developing schizophrenia early to develop a care plan. This may include case management, support for families and carers, group programs, and minimising disruptions to school and work (7).

  If someone develops schizophrenia, antipsychotic medications are usually a first line of treatment. Psychological therapies can also be beneficial, including cognitive behavioural therapy, psychodynamic therapy, and open dialogue (8). Community support programs are also available to help with social connection, physical health, accommodation, and work or school.

  It is important that people experiencing symptoms of schizophrenia collaborate with their healthcare providers and are empowered to make their own treatment choices, wherever possible. Though not always easy, sticking with treatment and medication is important, especially for people experiencing paranoia.

  Some people will receive support to manage schizophrenia over many years, often with a team of health professionals. Over time, treatments may be altered to reduce the type or intensity of treatment, improve the results, and reduce side-effects.

• Help for family & friends

  The family and friends of someone with schizophrenia need care and support too — it’s okay for family and friends to prioritise their own mental and physical health while they support someone.

  There are many other people out there who share similar experiences, and many services designed to help carers of people with mental health issues. Check out our Guide for Families and Friends for more info.

  Effective medical, community, and psychological treatment is available and a person who experiences schizophrenia can live a fulfilling life.

  To connect with others who get it, visit our online Forums. They’re safe, anonymous and available 24/7.

  VISIT FORUMS

• Resources and Support

  • Lifeline – 13 11 14.
  • SANE’s free counselling service  – phone and online support for people concerned about complex mental health issues.
  • For more in-depth information about managing life with schizophrenia, read SANE’s Schizophrenia guide.

  • Early Psychosis treatment guide – Orygen.
  • Resources for family and friends: Mental health first aid for psychosis, SANE Friends, Family & Carers Forum; Mental Health Carers Australia (formerly ARAFMI).

• References

  1. American Psychiatric Organization. Diagnostic and statistical manual of mental disorders (DSM-5®). American Psychiatric Pub; 2013.  

  2. Varshney M, Mahapatra A, Krishnan V, Gupta R, Deb KS. Violence and mental illness: what is the true story? J Epidemiol Community Health [Internet]. 2016 Mar 1;70(3):223 LP – 225. Available from: http://jech.bmj.com/content/70/3/223.abstract 

  3. Chou I-J, Kuo C-F, Huang Y-S, Grainge MJ, Valdes AM, See L-C, et al. Familial aggregation and heritability of schizophrenia and co-aggregation of psychiatric illnesses in affected families. Schizophr Bull. 2017;43(5):1070–8.  

  4. Blanchard JJ, Brown SA, Horan WP, Sherwood AR. Substance use disorders in schizophrenia: Review, integration, and a proposed model. Clin Psychol Rev [Internet]. 2000;20(2):207–34. Available from: https://www.sciencedirect.com/science/article/pii/S0272735899000331 

  5. Anderson JS, Crump D. Borderline Personality Disorder: A View from the Trenches, with Special Attention to its Impact on Family Transition. J Fam Stud [Internet]. 2004;10(2):254–72. Available from: http://ezproxy.acu.edu.au/login?url=http://search.ebscohost.com/login.aspx?direct=true&db=psyh&AN=2004-21148-008&site=ehost-live&scope=site 

  6. Morgan VA, Waterreus A, Jablensky A, Mackinnon A, McGrath JJ, Carr V, et al. People living with psychotic illness in 2010: The second Australian national survey of psychosis. Aust New Zeal J Psychiatry [Internet]. 2012 Jun;46(8):735–52. Available from: http://dx.doi.org/10.1177/0004867412449877 

  7. Henry LP, Amminger GP, Harris MG, Yuen HP, Harrigan SM, Prosser AL, et al. The EPPIC follow-up study of first-episode psychosis: longer-term clinical and functional outcome 7 years after index admission. J Clin Psychiatry. 2010;71(6):6560.  

  8. Cooper RE, Laxhman N, Crellin N, Moncrieff J, Priebe S. Psychosocial interventions for people with schizophrenia or psychosis on minimal or no antipsychotic medication: A systematic review. Schizophr Res. 2020;225:15–30.

  SANE factsheets provide brief, introductory information about mental health. For more in-depth information, read SANE’s Schizophrenia guide.