Stigma hindering psychosis recovery for Christchurch man
Psychosis is more common than diabetes. But the stigma around the condition and limited mental health resources mean it's difficult for people to resume a normal life following a psychotic episode. CECILE MEIER reports.
When Callum* was first diagnosed with psychosis in 2012, his heart sank.
He thought he had a special connection with the spiritual world, that angels shielded him with their wings, that he could read minds.
Psychosis is a mental health condition with symptoms including delusions, hallucinations, mood swings and confused thinking. Stress, drug use or social changes can trigger symptoms.
"About three out of 100 people will experience a psychotic episode, making psychosis more common than diabetes," the Canterbury District Health Board website states.
It can happen to anyone, with young adults being the most affected, but is treatable. With the right medication and social support, most people recover and are able to lead normal lives.
But almost five years after he was first diagnosed, Callum is still struggling to lead a normal life.
His descent into a delusional world started around 2010 when he became involved with a church, which he describes in retrospect as a cult.
"I turned 20 and I felt like I was missing something in my life."
He started watching Christian channels on TV and a friend introduced him to his church.
"I had to get baptised the first day in order to be saved. They gave me these massive golden, clown-type pants and a golden robe, and baptised me."
Then the hallucinations started.
"I saw angels with their wings shielding me, kissing me on the forehead when I was lying down at night. It felt real."
At the same time, Callum became increasingly anxious at work. He was working in a supermarket and felt he could not keep up with the pace.
"I was getting paranoid and fearful of my bosses."
After the February 2011 quake, the supermarket had to be rebuilt so Callum lost his job and started a horticulture apprenticeship at the Botanic Gardens. He liked working with plants but by then had started losing touch with reality and could not cope with the training.
"I felt like I was having this connection with God, feeling like I didn't have to do anything and that he would provide for me."
Callum's father said he vividly remembered the day Callum was admitted into the mental health acute ward at Hillmorton Hospital.
"The door seemed to slam shut, my heart missed a beat and I felt like a failure.
"He was immediately allocated a room with wired windows and graffiti scrawls on the walls."
After five days in the acute ward on a light dose of anti-psychotic drugs, Callum improved and was moved to a day ward. He was out in three weeks.
His father said he was relieved at the time but it was "only the beginning to the next five years of hope, stress, and incredible frustration".
Over the following three years, Callum shifted through different accommodations with different levels of care.
He moved so often that at one stage he did not bother to unpack his clothes out of plastic bags.
"He was getting anxious about having to move all the time," his father said.
Callum saw many social workers over the years but only saw the psychiatrist about three times a year, which was not enough, he said.
He had to take daily medication, which he stopped taking when he ran short of benefit money and couldn't afford his doctor's visit for a new script, which led to meltdowns.
"He needed more monitoring. He always gave the impression he was better than he actually was and case workers did not pick up on his symptoms of relapse," he said.
"That's the trouble – so many people going through the system and so few doctors and caregivers."
Today Callum thinks and speaks clearly and is keen to work.
The 26-year-old knows his limits – he gets overwhelmed and anxious easily so he needs a low-stress job with an understanding boss. But in the almost five years since he was first released from Hillmorton, he has been unemployed.
From 2012 to mid-2016, he looked in vain for a job with the help of various community organisations.
He had supermarket and gardening experience but could not get past the interview stage.
"I lost count of the number of jobs I applied to," Callum said.
"Employers asked me if I had a mental health condition preventing me from doing my job and I felt I had to disclose it.
"I feel like people automatically turn me down because I have a mental illness.
"When I say 'psychosis' people think I must be really insane."
The stress of rejection after rejection combined with his unstable accommodation situation contributed to another psychotic episode in May 2016.
"When I get stressed out I become unwell, paranoid. I start hallucinating."
Callum started walked around shops in his togs, taking too many pills or not taking his medication at all and being delusional.
"I think it was a call for attention because I was so desperate to find a job and do something, anything," Callum says.
He had to stay at Hillmorton for a month.
Once he recovered, the job hunt and associated anxieties started again.
Callum has been living in residential care since he was released from Hillmorton in 2016.
There he feels supported, but he will have to move out in June.
He receives his medication through a monthly injection, which is easier to manage, and gets support once a week from a community organisation to find a job.
His father and grandmother have been a strong support for him since the start.
After months of looking, a rest home finally gave him a chance in February.
However, after a day in the job, Callum realised he would not be able to cope.
He had to organise trolleys of food for residents and felt overwhelmed with information about allergies.
"I struggle with comprehension and remembering information and I was too afraid I would make a mistake."
Senior lecturer in psychological medicine Dr Christopher Gale said rehabilitation was often a struggle for people who had suffered a psychotic episode.
"The amount of stress patients have around negotiating welfare, housing, jobs, affects their recovery.
"We can't take this away with medication."
Drugs were not enough; Support and rehabilitation were vital in the long run.
The stigma around the condition was a barrier "and at times leads to people with psychosis thinking they are not allowed or able to work or do things even when they are very capable of doing them".
"It's hard for them to be in jobs without support. They need understanding employers."
Callum's father said he was now "on an even keel and articulate".
"He doesn't take drugs, doesn't drink and is quiet and often attends church, yet can't seem to get the chance of a job because of the stigma of mental health."
Despite failing at the rest home job, Callum feels optimistic he has finally been given a chance. He is now taking anti-anxiety medication as well.
Working part-time in a simpler job with more support might help him succeed next time.
*Not his real name