One of the most misunderstood mental health conditions, schizophrenia is continually vilified. As the conversations around mental health advance, schizophrenia should come to the forefront.
Schizophrenia. It is a word and diagnosis that may illicit preconceived ideas of how you expect someone with the condition to act or behave.
However, it is likely that this understanding is shrouded in the stigma that, unfortunately, continues to plight schizophrenia as a mental health condition.
People can experience positive symptoms, which includes hallucinations or delusions, and negative symptoms, where a person can lose the ability to do certain tasks.
For Ashley, on the day of her university exams, she began to experience delusions, and was later diagnosed with psychosis.
“It was quite a scary experience at the time,” recalls Ashley. “It was a shock because I was experiencing delusions and I didn’t know about delusions and I hadn’t experienced them before.”
Like many young people, Ashley’s life was incredibly fast-paced with university, part-time work, socialising and learning how to drive, leading to Ashley experiencing a breakdown. But, receiving a diagnosis of schizophrenia was a blow.
And Ashley is not alone. Theresa is a carer for her brother, who started presenting symptoms of schizophrenia in his late teens. Despite being aware of his change in behaviour and the term schizophrenia, the diagnosis was never discussed.
“Effectively, there is a stigma that surrounds schizophrenia as a diagnosis. I remember always knowing there was something going on, but never being told,” explains Theresa.
“As an adult, I know that he was experiencing problems internally but externally it came across as someone really challenging with very upsetting behaviour.”
Theresa’s brother did manage to live independently, even obtaining two postgraduate degrees, but the need to keep his diagnosis secret was a large burden. In recent years, discussions around mental health conditions such as depression and anxiety have heightened – conversations now need to encompass other mental health conditions, too.
Ashley emphasises: “People need to understand that schizophrenia affects people in different ways. For me, it got to the stage where I wasn’t experiencing hallucinations but nightmares.
“That was something I didn’t know: that you could experience nightmares, especially if you have had traumatic experiences.
“It is all about showing schizophrenia in a positive and realistic way,” Ashley continues.
And Theresa fervently agrees: “The depiction in popular culture is someone who s very violent and scary, or someone who has a multiple personality disorder.
Even the language that is used is really unhelpful for people who have a condition that is quite common.
“Schizophrenia is a silent shared experience,” adds Theresa. “It is not the diagnosis of schizophrenia that ruins lives, is is the stigma.”
Changing the conversation around schizophrenia to remove the thought of violence to others is vital for the improved awareness of the condition, and also the care people receive.
Having been admitted into medical care under the Mental Health Act 1983, Ashley emphasises the importance of person centred care for those already going through a fearful experience.
“In terms of the mental health care when you are detained, especially with psychosis, the individual needs to have more of a say in their treatment when they are feeling better,” explains Ashley.
“The times when I was in hospital, the voices said quite violent things to me. The voices, in my case, made me feel vulnerable and I felt that I didn’t want to respond with violence, I wanted peace and I didn’t want to be in this situation.”
As a secondary carer for her brother, Theresa supports him with claiming benefits, thinking through large decisions to being his emotional support after treatment has left Theresa’s brother with no social network.
Taking time to come to terms with the fact she is a carer, Theresa has faced hurdles to ensuring her brother is cared for whilst protecting her own mental health.
“When you tie up caring and the stigma of schizophrenia then I can become protective of the fact that I care for a brother with quite a serious mental health condition,” reveals Theresa.
“There are other challenges, including guilt. There is guilt I am not doing more. I feel guilt for living my life when he is lonely with very limited choice and autonomy. There is a lot of guilt there. Guilt that I can’t fix his condition.”
Through discussions, improved awareness of schizophrenia and assistance from charities – such as Rethink Mental Illness which both Theresa and Ashley volunteer for – or loved ones, people living with schizophrenia or carers can overcome stigma.
Ashley enthuses: “You don’t have to struggle alone. There is not shame in having schizophrenia, we need to have these conversations – there is nothing to be ashamed of.”