Living with schizophrenia – Oli's story

Oli shares his journey for National Schizophrenia Awareness Day. He reflects on the impact of stigma and how he manages his condition.

My first experiences of schizophrenia

My experiences with schizophrenia began in 2014, while I was at university. At the time, my grandfather had recently died and I’d separated from a long-term partner.

My first psychotic episode developed slowly over several months. I began to form paranoid ideas about surveillance and conspiratorial hostility, alongside growing anxiety about my body, including fears about parasites and physical health problems.

One morning, I woke up fully immersed in a delusion. From that point, events escalated quickly. I met with my university’s student support services, was taken to see a GP, and was ultimately sectioned. Although this was a frightening experience, it was a necessary intervention at the time. It also marked the beginning of my formal engagement with mental health services and my understanding that what I was experiencing was schizophrenia.

During acute phases, my symptoms include auditory hallucinations, harmful inner speech, delusions and the tendency to interpret harmless or random events as personally significant. Even when I’m relatively well, my mind can still generate intrusive or distressing internal language that requires careful management.

The impact of stigma

Stigma remains one of the most painful aspects of living with schizophrenia. I’ve been called a “schizo” in passing by someone in an accident and emergency department. I’ve lost work opportunities once my diagnosis became known. There’s still a great deal of fear and misunderstanding surrounding schizophrenia. Works such as Dr James Balfour’s Representing Schizophrenia in the Media highlight how damaging public portrayals can be, and my own experiences sadly reflect this reality.

About a year ago, following a second psychotic episode, I had to give up my job. Navigating the benefits system was challenging and emotionally draining. My experiences with different government bodies have been mixed. Universal Credit has been relatively supportive, provided that appointments are attended while waiting for a work capability assessment. I appreciated accommodations such as video appointments, which made engagement easier.

The Personal Independence Payment (PIP) process has been more difficult. I felt that my assessment did not fully capture the mental distress I experience and I’m currently appealing the decision. The mandatory reconsideration phone call was particularly uncomfortable and left me feeling unheard.

How I manage my condition on a daily basis

Day-to-day, managing schizophrenia means structuring my life around my relationship with stress and symptoms. I work remotely on an as-and-when basis, as I’m not currently able to work full-time or commit to a fixed routine. Medication side effects, oversleeping, low motivation and a strong need for solitude all make conventional working patterns difficult. Busy, intense environments can be overstimulating and dysregulating for me, increasing my risk of relapse.

Instead, I focus on work that allows flexibility and autonomy. I contribute to projects as a lived experience advisor and I also interview other people about their experiences of psychosis on my podcast, Side Quest Stories: Psychosis in Their Own Words. These roles allow me to stay engaged while respecting my limits.

At present, I’m focusing on creative projects, including my books, YouTube channel and podcasts. These provide both an outlet and a potential source of income alongside my advisory work. After spending many years trying to fit society’s idea of productivity, I’ve come to prioritise my health and stability over external expectations.

I have my own website which brings together my writing, my podcast and other longer-form projects, like interviews and essays, exploring psychosis, meaning and recovery from a first-person perspective.  All of this work is shaped by a commitment to respectful language, personal boundaries and making space for experiences that are often misunderstood.