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Spending time with, and sharing experiences with people who have also experienced psychosis can be life changing, and made a huge difference for some people...
Some people we spoke to had family and friends who were there for them during the psychotic experiences but others had difficult relations with family members and friends.
Having good relationships with family and friends could be a huge support, but it could also feed into people’s psychotic experiences. For example, Joe has multi-sensory hallucinations about people he cares about being hurt. Some also pushed people who they cared about away when they were unwell themselves. Peter, who has self-critical intrusive thoughts, said he has “distanced” himself from people and has found it harder to trust people.
In our interviews people talked about their relationships with parents, brothers and sisters, grandparents and other extended family such as a godmother.
The type of support people received from family included:
A few people didn’t mention family at all, or had a difficult relationship with members of the family. Emily’s father has bipolar disorder but they didn’t have the sort of relationship where they talked about things and being together just made their mental health harder to manage for both of them. Because of that Emily didn’t mention her voices for a long time. Ruby had been abused by her father, and he stopped her from seeking help and then made her homeless when she eventually did. Many no longer lived with family. Even those who did see family regularly sometimes hid what they were experiencing, because they themselves didn’t understand what was happening, or thought others would judge them. Nikki has had unusual experiences since her childhood but only recently started talking to her family about the voices she hears and Peter has never told his family about his intrusive thoughts. Andrew Z lives in student accommodation and although he’s only a short walk from his parents’ house he doesn’t really talk to them about his mental health.
Family relationships can be complex. Some young people had had to adjust to their parents divorcing. While a few people said they had very good relations with all members of their family, often some family members were more supportive than others. For those who received support from family members, there was still a mix of emotions. Fran said, “They get on my nerves, my family, but they’re good. They care. Their hearts are in the right place”.
Nevertheless family members input could be vital for getting young people help they needed and seeing how a family member reacted could also make people more aware that they needed help. Luke’s father, who had a diagnosis of bipolar disorder, was able to understand exactly what was happening to Luke and told him “there’s no way you can control this”. When Barry started having delusions and visions he was deteriorating fast and his mother took him to CAMHS, where he had seen an autism specialist in the past, and insisted someone saw him. A few young people lived with their families when they were very unwell. Their family looked after them to prevent them from being admitted to hospital.
Sometimes family members who had their own experiences of mental health could be particularly well placed to support a young person if they were prepared to talk openly about it. Luke said, “My Dad is very sort of on the back burner. We tend to talk on a sort of a – what I’d describe as a higher level. Because he’s got bipolar. We talk, we talk about – we talk in short. We don’t need to explain stuff to each other. We kind of almost have a sort of a, this kinship that doesn’t need any thorough explanation”. But Emily found that her dad’s bipolar disorder made their relationship quite “tense”. Her being unwell would trigger his bipolar disorder, and his being unwell would trigger her psychosis and she eventually left home because of that.
People often recognised the difficulty that their psychosis caused their family – although not everyone noticed this at the time they were unwell. For some, family members had been there when they were experiencing psychosis and had seen them at their worst. This could be difficult for the family members. When Becky was unwell she was “lashing out” at those close to her and her parents distanced themselves because they didn’t know how to help her and she recognises it was hard for them. Some family members made extra sacrifices to care for their loved ones. Hannah’s mother had gone part-time at work so that she could give her the support she needed.
Many people had lost friends through their experience of psychosis, but also made new ones. Those who experienced psychosis when they were in their teens could find friends were judgemental and unable to understand what was happening or know how to offer support. Nikki’s closest friend at school spread “rumours” about her psychosis when she confided in her. Lucy had a friend she had known since she was 4 years old, but when she told her she had experienced psychosis the girl never spoke to her again. Losing friends when she was unwell, felt like “rejection” for Becky and fed into her Borderline Personality Disorder.
People also had very good friends who were there for them when they needed them. Lucy’s friends sometimes go to her house and say “I’m going to cook you a week’s worth of dinners and put them in the fridge”. Some wanted friends who they could talk to openly about their mental health. Luke’s group of friends -“rag tag band of misfits” – all had their own problems and were “absolutely fine with it”. Sameeha’s friends were open minded and weren’t put off by her brief experience of psychosis. This made her feel more normal about what had happened and meant she could talk openly to them, which made it easier to deal with. Andrew X says that feeling safe enough to be “vulnerable” with someone is what makes a great friendship. For others, like Green Lettuce, just being able to meet up for a drink and socialise was enough.
Meeting up with old friends could be challenging when they had moved onto new things, but could also be a support.
Most people had made new friendships, through support groups or while in hospital, and also through hobbies or at university. Dominic said that gaming was a very “social experience” for him and the people he met through it were like minded and very accepting. But some people said it was hard to make new friends and that they struggled to trust others. When people had made new friends while they were experiencing psychosis, it could be difficult to work out whether the friendships were real. Dominic had a six month “episode” during which he had false memories continually and although it was a really happy time, when it ended he felt unsure about the friendships he thought he’d made during that time.
Spending time with, and sharing experiences with people who have also experienced psychosis can be life changing, and made a huge difference for some people...
Many people we spoke to experienced psychosis while they were studying at school, college or university and some were still in education. Andrew X was...