People talked about the start of their mental health problems. Some first noticed problems as teenagers – though a few said they were children at the time – others first had problems much later in life, in their 30s and 40s. Before people experienced psychosis many had had a period when they felt anxious or depressed. Some people could remember a particular moment when they started hearing voices or odd things happened (e.g. seeing skulls in walls), whilst others thought that everybody heard voices and only noticed them more when they were loud or distressing. When people looked back on their lives, they could identify experiences that they didn’t think were important at the time (e.g. such as being a ‘loner’ or always feeling ‘different’). People also had views about what caused their mental health problems; these ideas are covered in
‘Views about causes and triggers for mental health problems‘.
First Signs
Before experiencing any ‘psychosis’ (e.g. feeling they were being taken over by demons, being told by a voice to cut off their cat’s tail), many people started to feel slightly paranoid or felt that their behaviour had gone ‘out of control’. Others couldn’t explain strange things that were happening to them, or felt physically very unwell.
Jenni felt as though she had been ‘hit on the head’, whereas Janey felt that at the time when she was enjoying herself at university she also felt she was ‘losing control’. Some people seemed to hear voices apparently for no reason, whereas others related their experiences clearly to traumatic childhood events such as sexual abuse or bullying (see
‘Childhood and life before diagnosis’).
Many people heard and saw hallucinations only as adults; but a couple of people described these beginning when they were younger.
First episode of ‘psychosis’
Most people we spoke to could describe a time in their life in which one or more of the following happened to them’ seeing, hearing, feeling or seeing things that weren’t there (e.g. Freddy Krueger sitting in the back of their van); feeling extremely paranoid; having bizarre or implausible ideas not shared by others around them (such as that ‘the day of judgment’ was imminent), or feeling as if they were ‘out of their body’ (for more on these kinds of experiences, see
‘Hearing voices, seeing things and unusual beliefs‘). When these things happened for the first time, nearly everyone reacted by feeling terrified, as people didn’t know what was happening to them. Others just felt puzzled and confused.
Some people felt as if they disappeared into a dark world (e.g. with evil all around) – with one person describing this as like being sucked into a vortex; others kept trying to make sense of strange things that were happening to them such as television presenters talking to them, voices coming from phones or electronic devices. At the same time many people stopped caring for themselves properly, didn’t wash or brush their teeth, and couldn’t work.
People described the onset of an episode of psychosis as having ‘racing thoughts’, feeling ‘elevated’ or just ‘skew-whiff’. Many people remembered that an episode of psychosis followed not being able to sleep, whilst other people felt that it was the voices and racing thoughts that prevented sleep.
For most people the first experience of psychosis was the most frightening. Some were so unwell during the onset of psychosis that they were taken to see a doctor, and even kept in hospital involuntarily (i.e. ‘sectioned’ – held under a section of the Mental Health Act. See ‘Hospital treatment and compulsory care‘). Many felt that if they experienced psychosis again, they had developed better strategies to cope or at least understood a little more what was happening. Many people say they now concentrate on things which help them stay well; for more on this see the ‘Strategies for everyday coping’and ‘Recovery‘ topics.