Psychosis (young people)

Andrew X

Male
Age at interview: 24
Age at diagnosis: 14

Brief outline: Andrew started to experience psychosis when he was 14. He has had many diagnosis but thinks the phrase “depressive psychosis” best describes his experience. He does not take any medication for his psychosis and manages his mental health day to day.

Background: Andrew is an elected local councillor. His ethnicity is White British.

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Andrew was 14 when he first experienced psychosis. School was frustrating and a struggle and he was bullied. Eventually he stopped going to school and became socially isolated. The first thing he remembers about the onset of his psychosis was believing that his thoughts were being broadcast to other people. He became paranoid about what others might think of him when they heard his thoughts, and felt that he had to stop himself from thinking.

Around the same time, he started hearing three distinct voices, which took on different personalities: the ‘good’ the ‘bad’ and the ‘ugly’. The ‘good’ would tell him he had to be good/angelic/perfect all the time, the ‘bad’ would tell him to do bad/horrific things and the ‘ugly’ was how he viewed himself, stuck between the other voices. These voices would keep him up at night, and the lack of sleep in turn impacted on his wellbeing. He also had paranoia and delusions that he was a sinner and had to punish himself, for example if he thought he had insulted someone he would punch himself in the head to let the stress and anger out. 

Over time this built up and eventually he had what he describes as a “psychotic breakdown” when his voices told him that Satan was going to kill him, so he jumped out of a window, and over a fence and ran “Forest Gump style”, until the police picked him up. He was given a Mental Health Act assessment. He remembers how frightening it was, at the age of 14, to have clinicians going over his life in detail and deciding whether he was going to be forcibly detained and medicated. Although he wasn’t sectioned, they did what he calls a “quasi section” where they told him they would section him if he didn’t do everything they said. 

Andrew was supported by CAMHS and EIP until he was 18. He describes the care he received, particularly from EIP, as amazing. The team were very dedicated and treated him like a human being. The transition to adult services, however, was poorly managed. He was basically left with no support. Although he describes having a good relationship with his social worker, the psychiatrist was not interested in him as a person and this ultimately had an impact on his mental health. For example, the psychiatrist at EIP was very engaged with monitoring the effect of his medication and took him slowly off risperidone (anti-psychotic) while introducing aripiprazole (anti-psychotic), along with fluvoxamine (SSRI) and melatonin for sleep. This worked well for some time. However, when Andrew transitioned to adult services the new psychiatrist did not monitor his medication and the combination was not suiting him anymore. Andrew took himself off the medications overnight and had a very difficult transition over two years, but became medication free. He says it was the worst and best thing he ever did, but if he had that time again he would have come off the medications more gradually.

Andrew has taken different types of medication over the years including lorazepam PRN (benzodiazepine), which helped with the acute episodes. When he was in hospital he was given a high dose of the anti-psychotic risperidone, which stopped the psychotic experiences and gave him the opportunity to use some of the other therapeutic services. However, there were side effects, such as weight gain, dribbling, twitching and muscle cramps, and it suppressed his thoughts: like a straight jacket for the brain. 

Andrew actively manages his mental health and works hard to regulate his emotions. He is very aware of how boredom, social isolation, lack of sleep, anxious feelings and stress affect his mental health. He describes a traffic light system whereby ‘green’ represents the times when he is managing his mental health, ‘orange’ means that there is no room for self-management, he experiences suicide ideation, starts isolating himself and he needs help urgently. When he gets to ‘red’ it is like going over a cliff edge and he will be very unwell for a long time. When he spots the signs of things descending towards ‘orange’, he knows that things can change for the worse very rapidly. Despite this awareness he says that there is very little support for him when he needs help. Adult mental health services are not good at responding if he presents himself to them when he needs their help. Although he knows that getting their help will prevent him descending into a crisis, they don’t seem to be interested until things are at their worst.  

For Andrew, a good mental health practitioner is one who is prepared to treat those he or she is working with as fellow human beings, and not as patients. He remembers one time when he called the police because he was in crisis and the person on the phone asked him what kind of music he liked. That simple question was so powerful, because it meant that the person was relating to him as a fellow human being. 

Andrew has found many ways to manage his mental health day to day. He finds that if he sets aside time in the day when he allows himself to ‘day dream’ – allowing his thoughts to flow in a natural way – then his thoughts are quieter at night when he needs to sleep. He uses other techniques to ‘interrupt’ psychotic symptoms, such as repeating a word over and over, which produces a sort of meditative state. He alternates between these and other techniques like mindfulness, and sometimes just needs a distraction – watching TV or playing on a video game for a while. 

Work is very important for Andrew. He finds that he needs to keep himself busy. He is very focused on work in the public sector and has been elected to serve as a local government councillor for two separate terms. Politics is a passion for him, as is mental health advocacy, and he is always very honest about his mental health. He feels that speaking out is important to end stigma. He is also currently studying to be a social worker.

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