Dr Steph Jones CMO
When I heard about schizophrenia awareness day I started to remember the patients I have met with this condition when I was working in the field of psychiatry. I strongly feel it is important for people to understand the true nature of this condition and I’m therefore (anonymously) sharing some of their stories.
Why is it important?
There are many misconceptions about people with schizophrenia. This is partly due to ignorance, as most people know very little about this condition. But mainly it is due to the way the term “schizophrenic” has been used inaccurately in the past, and the way that fictional characters with schizophrenia have been portrayed in films, creating false impressions of this condition and feeding the stigma around schizophrenia.
If you read our blog on the background to this condition, you may be surprised to learn that the worldwide prevalence of schizophrenia is more than 0.3%, which means for every 1000 people there will be at least 3 with this condition. Due to the nature of the illness in addition to the misconceptions and stigma, people with schizophrenia are at risk of social isolation, self-neglect and even suicide.
With the right support and understanding people with schizophrenia can live fulfilled lives, therefore it is important to improve awareness of this chronic condition.
Patient stories:
I want to share with you some of the stories from the patients I was privileged to meet during my time working in psychiatry. The names have been changed and some details were omitted to avoid anyone identifying them, but their stories are engraved on my memory.
John
John was one of the first patients I met in my first job as a Senior House Officer on a psychiatry ward. He had been a Youth Worker, and had demonstrated himself to be an intelligent, capable chap who had progressed to become a Group Leader. His favourite part of the job was taking groups of disadvantaged young people trekking up mountains to learn new skills, face their fears and return full of confidence. Then he started to manifest symptoms of schizophrenia. For John the main feature was paranoia. He experienced constant, overwhelming fear that he was being watched. He told me about a time when he had spotted a snail on his window, believed it to be a “bug” and was so scared he locked himself in the bathroom and was unable to come out for days. Someone in his family raised the alarm, John was quickly diagnosed and treatment was commenced. But that was not the end of this story. His employer changed his role so that he was no longer able to take out groups of young people, his favourite part of the job. John managed well for several months, but remained unable to feel emotions, which impacted his relationships with his friends and girlfriend, causing him to avoid them. His paranoia deteriorated, causing fear that the medication was part of a conspiracy until he was too scared to take them. His symptoms worsened, John withdrew from his friends and family and was absent from work, eventually losing his job completely.
Community psychiatric nurses (CPNs) supported him and eventually gained his trust enough to persuade him to accept injections, after which most of his symptoms resolved and he was able to return to oral medication. However, John remained unable to enjoy contact with his friends, he had lost his job and girlfriend, and eventually he made a comprehensive plan to kill himself. While he had been very unwell he had often referred to a plan to “throw himself off a mountain” but as his symptoms improved John spoke about this less and less, until everyone was convinced that he had stopped thinking about it.
Then one day John quietly packed a bag and set off up the mountain he loved. Luckily one of his family found the note John had left and alerted the CPNs. He was found and brought back to the hospital for treatment. He was really disappointed at first, but with some changes to his medication and extra support from friends and family, over time he began to see a future for himself. I was privileged to meet John and hear his fascinating story when he was attending an outpatient clinic for routine follow up some years later.
Hilda
I met this lovely, well-spoken lady when she was in hospital to treat a flare of schizophrenia. Her major symptom was almost unbelievable: she wrote notes for her future grandchildren. These notes were careful, neatly handwritten notes, mainly on sciences, researched through volumes of text books. Although on the surface this seems like a worthwhile endeavour and something all aspiring grandparents should consider, it became an illness for her.
When I met Hilda her latest episode had been quickly identified by her children before the symptoms had progressed too far. However, in the past Hilda had several episodes where she had started to become so engrossed in writing notes that she had neglected herself. While filling rooms with colourful binders full of beautiful, fully-referenced notes she forgot to eat, sleep or wash, became socially withdrawn and completely obsessed, compelled to finish them. But there was no end to the information and she felt despair. Hilda told me that when she was stable on medication she felt better, and the compulsion to write these notes completely disappeared. I was honoured Hilda admitted to me that this latest episode was triggered because she felt it had been such a long time since this had happened she thought she no longer needed medication and had stopped taking it.
Other patients:
Over the years I met people while they were experiencing psychotic symptoms and was amazed at how these episodes changed the way they thought, behaved and even their personalities. One woman had “conversations” when she was experiencing a flare, which involved talking to herself sat alone in a pub. I asked what these conversations were about and she revealed the most creative inventions, some of which have come to pass in the years since I met her, and others I’ve seen in science fiction (including contact lenses that act like a computer screen). I often wonder whether the screen writers overheard her in that pub. Sadly she was not the one to develop these inventions into life or films as she lost all of her creativity as soon as she was treated and returned to her life as a cleaner. Usually when speaking to people experiencing a flare of psychosis they are very distracted, reacting to sounds or movements around them that only they can perceive. They find it difficult to distinguish reality from hallucinations and can misinterpret everyday occurrences (e.g. traffic lights changing, something said on TV) as a signal designed specifically for them.
Once people with schizophrenia have found suitable treatments their symptoms settle and they return to their usual self. But because of the nature of this condition, and the stigma associated with it, they need our support to live a fulfilled life and achieve their goals.
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