What would you say if I asked you to tell the story of your life? If you are like the thousands of people who have participated in life stories research around the world, you could probably tell a pretty good story about where you came from, how you became the person you are today, and where you are headed in the future. You might talk about your childhood experiences, your education or career, significant challenges or accomplishments, important relationships, or themes that connect your experiences together.
Here are a few things you probably would not say:
‘… what scared me the most was a sense that I had lost myself …’
‘I couldn’t relate to the world around me, as my reality became increasingly fractured and confused.’
‘My illness eradicated my sense of self, and now I am engaged in the lifelong process of obtaining, maintaining and slowly modifying my sense of who I am.’
These are excerpts from the stories of people living with schizophrenia, a psychotic disorder that can include delusions (strongly held beliefs that do not seem to fit reality), hallucinations (seeing, hearing or feeling things that are not there), disorganised thought and speech, loss of motivation, blunted emotional expression and social withdrawal. Schizophrenia is a rare but serious mental illness. Although it affects fewer than one in 100 people, schizophrenia’s worldwide disease burden, in terms of years lived with disability, is roughly equal to that of Alzheimer’s disease and alcohol abuse combined. This is because schizophrenia is a chronic, disabling condition that manifests early in life – it is commonly diagnosed between late adolescence and the early 30s.
Our life stories help us to define and communicate who we are as people
When asked to tell their life stories, people with schizophrenia tend to tell unusual ones. First, the basic chronology of the life story is shifted. Most people experience a ‘reminiscence bump’ in early adulthood, with many personally significant and relatively well-remembered events occurring between ages 15 to 30 (and especially between ages 20 and 24). For instance, we might form memories of graduating college, getting a first job, or starting or ending significant romantic relationships. These events become centrepieces of our life stories, defining who we are for decades to come. However, schizophrenia causes profound disruptions during these same years. People diagnosed with schizophrenia often become unable to care for themselves, lose valued roles and relationships, and undergo treatment. These experiences seem to curtail the reminiscence bump: rates of personally significant memories might steadily increase in the teenage years, then drop sharply following a diagnosis of schizophrenia.
People living with schizophrenia also tend to include unusual kinds of experiences in their life stories, focusing on psychotic episodes, hospitalisations and traumatic events. Their life stories might even include vivid, emotionally intense experiences of psychotic symptoms themselves – for instance, vivid memories of being spied on, conspired against or chosen by God to save the world.
In short, people with schizophrenia tell unusual life stories about unusual kinds of personal experiences. But why do these stories matter? How might they impact mental health and wellbeing? And how might they change through treatment and recovery?
At the most basic level, these stories matter because many people living with schizophrenia want their life stories to be heard. As Robert Bayley, a musician and author who has lived with schizophrenia for the past 40 years, has explained: ‘It is often forgotten that there is a person behind the condition, with a fundamental need to be understood … We must be seen as individuals and not regarded as just a collection of symptoms.’
Psychological research also shows that, generally speaking, our life stories help us to define and communicate who we are as people. For example, imagine a middle-aged man – let’s call him David – who tells you a story about his difficult experience growing up in a poor neighbourhood, how it opened his eyes to the hardship that children face living in poverty, and how it motivated him to pursue a tough but fulfilling career in social work.
People with schizophrenia often describe a sense of getting profoundly lost in their own experience
Do you feel like you got to know David’s personality, at least a little bit, from hearing this very rough outline of his story? If you did, you might be noticing some of the relevant psychological features of personal storytelling. Importantly, these features have less to do with the content of the story and more to do with how the story is told.
David’s story, for instance, was clearly structured with a beginning, middle and end. It moved from painful beginnings toward positive emotion and agency. And David found meaning in his life story by connecting his past experiences to his present-day identity as a social worker. Psychologists who study narrative identity, or the ways in which we tell our life stories, might say that David expresses strong narrative structure, the motivational and affective theme of redemption (a movement from negative beginnings to a positive ending), and deliberate autobiographical reasoning to make sense of his past experiences.
These dimensions of narrative identity are interwoven with psychological wellbeing. Research has found that narrative identity variables, including redemption, are associated with wellbeing even when accounting for other relevant factors (such as income, personality traits and psychiatric diagnoses). In some cases, changes in narrative identity even precede changes in wellbeing: one study found that increases in narrated agency occurred earlier during psychotherapy, followed by improvements in mental health. Personal stories reflect and might even support people’s mental health by helping to give their lives a sense of meaning, purpose, unity and forward momentum into the future.
In contrast, people who experience poor wellbeing or mental illness tend to tell life stories that focus on unwanted emotions, passive responses to life events and alienation from people around them. In schizophrenia, this trend is amplified and reaches into all aspects of personal storytelling, as my colleagues and I outline in a recent review of the research literature. However, unlike most people who struggle with mental illness, people with schizophrenia often also describe a sense of getting profoundly lost in their own experience. While they are in the midst of this instability, they often have difficulty structuring personal stories in a way that listeners can understand. (This is evident in a sample of one person’s description of his childhood: ‘No, that happened there… where my father took out gold, and we were happy, we used to get up early and it was fantastic… cleaning.’)
People with schizophrenia can also have trouble finding meaning in past events or connecting their past experiences to their present identity. Unlike David’s structured, meaningful life story of becoming a social worker, their life stories tend to be more fragmented and painful.
For instance, Janet Stewart, who works on a mental health team in Montreal supporting others with serious mental illness, has nevertheless struggled to find words for her own story of living with schizophrenia:
There’s too much, it’s too big for me: five years of psychosis, the medication change that caused the episode (a medical error), homelessness, emptiness: no connection, no drive, no motivation, no direction, no feelings, just groping in the dark for so many years, no laughter, no joy, no pleasure. Not even any tears. All these thoughts and feelings crowd together, I want to get them all out, but they leave me paralysed …
It’s not just that the life stories of people living with schizophrenia are marked by unusual experiences. Many of these individuals seem to miss out on the potential for coherently structured personal stories to provide meaning to events in their lives.
Yet life stories are living documents. As the years pass, research has found, it’s typical for much of the content of a life story to change. Some people repeat very little of the content of their life stories across subsequent versions. How might the life story change as individuals recover from psychotic disorders?
Recovery from psychosis can be a deeply redemptive personal story
After experiencing a psychotic episode and being diagnosed with a psychotic disorder, people face unique challenges to their personal identities. The symptoms of psychosis, and the general cognitive impairment that typically accompanies psychosis, can make people feel alienated from themselves. At the same time, the loss of roles and relationships and the internalisation of stigma against people with serious mental illness can make them feel disconnected from others. These processes help to explain how their life stories become so painful and fragmented.
But psychosis can also prompt personal growth. Many people diagnosed with psychotic disorders feel that they have learned important things about themselves through the experience of psychosis. As one person put it: ‘The experience answered a lot of questions I had about my identity in life … and gave me a humility in how I look at reality … I like to think it made me a better human.’
I see similar experiences of personal growth in my clinical work in a specialty care programme for early psychosis. Some of the time, our patients need help managing delusions or hallucinations. But much of our time is spent helping our patients to build relationships, get jobs, complete college degrees, live independently and pursue valued goals. Rather than simply treating psychotic symptoms, we help young people build meaningful lives around their psychotic symptoms.
Through this recovery process, people living with psychotic disorders can change their personal stories. In fact, some psychological treatments – notably metacognitive reflection and insight therapy – are designed to support recovery by helping people build more elaborated and integrated understandings of themselves and their life stories. Even when life stories start out disjointed and difficult to understand, clinicians can help people to see themselves as more agentic, connected to others and socially valued by listening and helping to build structure in personal stories.
When people living with a psychotic disorder feel agency and mastery over their lives, they are often able to recover functionally (eg, by living independently, working and maintaining stable relationships) even if they still experience psychotic symptoms. For many people, this is what recovery from psychosis looks like. And it can be a deeply redemptive personal story.
Bayley, the musician and author who reminded us that ‘there is a person behind the condition’, expresses this redemptive arc in his own life story. Despite struggling for decades with his symptoms and enduring frustration with society and the healthcare system, Bayley is not defined by these painful experiences. Rather, he has found ‘some kind of balance’ through art, music and writing. He has published a semi-autobiographical novel and released an album of his original compositions. A loving wife, friends and family, he says, ‘[keep] me as positive as I can be’. Ultimately, he writes, ‘I have been transformed from a vulnerable 16-year-old … to an individual, now 51, who has created works of literature and music, and studied the visual arts … I’ve managed to create a rich amount of work that I’m incredibly proud of.’
Bayley’s story illustrates how people diagnosed with psychotic disorders can live full and satisfying lives. And while they might face unique challenges in constructing and sharing their personal narratives, their stories are individual, complex and rich in potential for personal growth and redemption. They want to tell these stories; we should all be willing to listen.