When Reality becomes Uncertain

We had our thirteenth support group meeting today, with six of us coming together. Each of us introduced ourselves, and slowly we began to enter a conversation about reality, fear, voices, films, stigma, identity, and what it means to live with schizophrenia in a world that often misunderstands our experiences.

One member shared about watching The Truman Show and how deeply the film connected with their own experience of psychosis. At one point, they had become frightened and paranoid, feeling that they were living in an unreal world and wondering whether there was another reality behind the one they could see. Could they somehow wake up and discover the truth? This became deeply distressing, and they did not know how to seek help. They had experienced multiple hospitalisations and spoke about how difficult these experiences had been.

This opened up a conversation about films that portray altered realities and experiences of uncertainty—The Truman Show, Shutter Island, A Beautiful Mind, The Matrix and Avatar. Many of us could relate to the experience of watching a character suddenly discover that what they believed to be real was not what they thought it was. There is something deeply unsettling about that moment: Who can I trust? What is real? Can I trust my own experience?

One member shared that they had stopped watching television for about a year. They remembered watching A Beautiful Mind and experiencing a profound shock when they realised that one of the characters was not actually real, but part of the protagonist's hallucinations. It frightened them so much that they called a helpline because they felt they had lost their sense of reality. Another member also spoke about how too much information can become overwhelming and overstimulating. When one's sense of reality already feels fragile, films, television and other forms of information can sometimes disturb that fragile sense of ground even further.

We reflected on how different films carry very different emotional qualities. The Truman Show can feel light and playful despite its disturbing premise, while Shutter Island is much darker and frightening. Yet both can leave us with the same unsettling question: what happens when we cannot trust what we see, hear or understand? And perhaps even more painfully, what happens when we feel that nobody else can understand what is happening inside us?

One member shared particularly openly about hearing voices and experiencing an intense fear that someone might come and hurt or kill them. There was a fear that someone might put something into their food, that somebody might be able to hear their thoughts, or that they were being watched all the time. They described the experience of thought broadcasting, where it feels as though thoughts are no longer private and other people can hear them. Sometimes a voice would raise an ordinary question, such as why water seemed to be coming into the house but not outside. They would go outside and check whether anyone was there. The experience would shake them deeply, and they did not know how to respond to these voices.

What seemed particularly painful was how the voices could make them lose their sense of presence. When the voice comes, they can forget where they are, forget about their own existence, forget parts of their life, and even lose track of ordinary things around them. There is a kind of disappearance of the self in these moments. They spoke about how frightening it is to lose that sense of continuity and presence, and not know how to return to oneself. Yet they spoke with tremendous courage. There was so much fear in what they shared, but also so much determination. They wanted this group to be a place where they could speak freely about these experiences, without having to hide them or be ashamed of them. Their sister has been supporting them every day, and they hoped that after being able to speak about everything today, they might be able to relax and sleep better. The voices may not simply disappear, but perhaps being able to speak about them without shame can make the experience a little less lonely.

We also talked about different ways of responding to these experiences. One member spoke about keeping themselves busy through fitness and their business. Having things to do, maintaining a routine and staying engaged with everyday life can help create some distance from difficult thoughts and feelings. Another member spoke about something different: rather than always trying to distract ourselves from what frightens us, perhaps there are times when we need to slowly face the deeper spaces of fear, brokenness and collapse. There can be a symbolic and psychological death of an old way of being, followed by the possibility of finding something different within ourselves.

There was also a conversation about forgiveness—particularly forgiving ourselves for forgetting, making mistakes, not being perfect, or not being able to remember everything. Perhaps living with these experiences also means learning to be kinder towards ourselves. We do not have to remember everything perfectly. We do not have to understand everything immediately. We can make mistakes and still remain worthy of care.

Another important theme emerged towards the end of the meeting: stigma and disclosure. One member shared that they had recently got a job, and we celebrated this new beginning after the long period of uncertainty they had experienced. Yet even with this new beginning, another fear had emerged. At work, they sometimes felt that people were talking about them and worried that others might discover that they have schizophrenia. They were frightened that information about their diagnosis might be somewhere on the internet and that people might find it. Another member recognised the same fear. When people hear the word schizophrenia, they may immediately associate it with stereotypes of split personality, psychopaths, serial killers or violence. These stereotypes can make disclosure feel incredibly risky. We may simply be trying to live an ordinary life, while carrying the fear that revealing our diagnosis will suddenly change how other people see us. Another member offered a different perspective. They had worked for many years without disclosing their schizophrenia, and people around them did not necessarily know what they had experienced. Even while going through an episode, others did not know what was happening until they chose to speak about it later. Eventually, after leaving their job, they told a former boss about their experience and about their plans to start a business connected with schizophrenia, podcasts and conversations. There was something powerful in this shift—from hiding an identity to choosing how and when to share it. Disclosure does not always have to mean asking for help or announcing something painful about ourselves. It can also mean saying: This is part of who I am. This is something I have lived through. And I can decide how I want to speak about it. Perhaps this is also what agency looks like. We can decide when to speak. We can decide when not to speak. We can decide who gets to know us. We can decide how much of our story we want to share. And sometimes, we can build an entire part of our life around something that we were once taught to hide. Today's meeting reminded me again that psychosis can profoundly disturb our relationship with reality. But the loneliness around psychosis can sometimes be even more painful than the experiences themselves. When we cannot tell anyone what we are seeing, hearing or feeling, the world can become incredibly small. This is why spaces like this matter. We can sit together and talk about The Truman Show, voices, paranoia, thought broadcasting, films, work, stigma and disclosure. We can become frightened, question reality, listen to one another and still remain together. We do not have to immediately resolve everything. Sometimes it is enough to have another person say, “I understand why that is frightening.”

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