This is life with schizophrenia
Guy (pictured) trained to be a mental health social worker with Think Ahead. He shares this rare insight into living with schizophrenia with thanks to the people he’s worked with who were able to contribute.
I am a social worker in a community mental health team supporting people with a chronic and enduring diagnosis of psychosis. My colleagues are some of the most passionate and knowledgeable people I have met but it is the people that I support who have taught me the most about mental health. With years of living with and surviving mental ill health, they have become experts through experience with powerful insights to share.
The pandemic has challenged us all to be more mentally aware and I hope one outcome of it will be to continue honest and open conversations. Conversations help us look past the stigma, shame and even fear of a mental illness label, to listen and engage with the person underneath.
Seeing the person, not the label
These are some personal accounts from people I’ve been privileged to work with about their experience of schizophrenia and what has helped or hindered their recovery journey. They hope that their stories will challenge you to think differently about them, seeing the person not the label.
I still have psychosis. It never lets me go. Some nights I can’t sleep, and I see images of the devil.
John has been under mental health services for 23 years. Over that time, he notes that services have changed considerably – mostly for the better.
‘I remember going for a pint of beer with a nurse once – you can’t do that now! My diagnosis has changed over the years, but I still have psychosis. It never lets me go. Some nights I can’t sleep, and I see images of the devil.’
I asked about his experience with professionals and what we could learn. ‘There are a number of unsung heroes who have helped me over the years. Most of my experiences with staff are really good. I remember PB who gave me an extra 30 minutes each day on the ward. It really helped me. Feeling you are noticed and appreciated, and not alienated is really important. Society has got better as well.’ His final thoughts to professionals were, ‘Don’t be a rescuer, be open minded, and don’t think you know it all – because you don’t!’
One of the first people I worked with was Arnold. In the middle of a conversation, only a few months into my work with him, Arnold stopped, turned to look at me and said, “Mania and psychosis are linked by two words: unfathomable and unpredictable! This is my experience of mental health.”
For Mark, my calls and visits provide the reassurance he needs to keep going. He is not always sure what is real or what is not, and he says it helps when I talk over the noises he hears. A short conversation can prevent sleepless nights filled with anxiety. We’ve recently started to tackle his overgrown garden, clearing out brambles and choking ivy. It’s a good metaphor for our relationship. Prickly at first and hard to reach, working together over the last year has helped create a shared space for light-hearted banter. In time, we will clear a safe and calm space for Mark to enjoy.
It’s important to listen to people so that through understanding, you can build up trust.
I have been working with Stephen on and off for nearly two years. He is almost prescient in his analysis of current affairs and has a sharp wit to go with it. He’s lonely and wryly commented that the paperwork doesn’t seem to help him that much. He described how frustrating it is to be quizzed for information rather than having a conversation. He also like lots of smiles because, he says, “If you can’t find something to be cheerful about, what hope have I?”
He remembers a day from years ago when he was upset and sobbed for nearly an hour. He can’t remember why but can remember that his social worker was with him for the duration, maintaining a quiet, comforting presence. In contrast, Stephen remembers an incident when a nurse refused to let him have matches for a smoke in case he set fire to the hospital. He felt, “totally belittled” and 36 years later, the memory of that day still damages his trust in our service.
I supported Clare when she was going through a difficult period. We used to meet for walks in the local park and talk about art, design and mental health through the lens of spirituality. She reflected that she finds it challenging that her understanding of mental health is at odds with the national story.
“It’s hard because the general public gets this idea from the media that every schizophrenic chases people down the street with a knife, but we are much more likely to hurt ourselves.
“You don’t want to talk to people about your experiences straightaway. I’ve found it helpful to talk to people in hospital because they share an understanding and its confidential, although it can be intimidating attending the formal ward rounds, particularly when you are unwell. It’s important to listen to people so that through understanding, you can build up trust. Your mental health worker has to really engage by listening to you. They can then form a continuum of positivity, but they can’t do that without trust.”
Matthew describes his mental health identity as, “unconventional and contradictory”. He talks about how self-doubt has robbed him of close relationships and he is now determined to make the most of his life. He is learning to move past the negative feelings that hold him back. This is difficult as many come from damaging personal events.
A few years ago, a former care coordinator arranged a Mental Health Act assessment because he was too busy to engage with her when she called. He was unwell and needed support, but what really angered him was her statement that “only her opinion mattered”. Matthew strongly recommends that professionals listen and not judge. He would prefer to be treated for the symptoms of his psychosis rather than on the basis of a vague diagnosis that can be a dehumanising and makes him feel like an outsider. “People often don’t appreciate the magnitude of a diagnostic label.”
Practitioners need to understand that when they say, ‘I’ll call you for support’, it makes it impossible to continue because I’ll hear 20 voices talking over the top.
Matthew has found the Covid lockdown very difficult but has pushed himself to connect with other people, particularly online. He thinks social workers should encourage people to find activities that they enjoy as this can lift your mood. He enjoys walking, music and art. When he feels depressed, Matthew reminds himself of these activities, and seeks them out as he knows they will help.
I’ve got to know Calley through the service user network. Calley explained to me how their personal experience of psychosis can be really bad. At their worst, the external voices last all through the day and night. They sound like real people and they talk over everyday conversations including phone calls.
“Practitioners need to understand that when they say, ‘I’ll call you for support’, it makes it impossible to continue because I’ll hear 20 voices talking over the top. It is much more helpful if they text me.” Calley recommends SHOUT which provides a free 24/7 text service for mental health support: https://giveusashout.org/.