My brother’s journey with schizophrenia – Carly’s story

Carly reflects on growing up with her brother, Stephen, who lives with schizophrenia. This year she took on the London Marathon, raising money for Rethink Mental Illness.

Navigating childhood and adolescence

Growing up, Stephen and I were always very different. Even as a child, it was clear that he needed more support. From an early age, he attended different schools because of his learning difficulties and was diagnosed as having traits of autism spectrum disorder (ASD). He was also very shy and introverted. At secondary school, he got bullied because he found it difficult to join in.

When our parents separated, I remember carrying on as normally as I could, trying to get on with life. Stephen, however, seemed deeply affected by it. He struggled to understand what was happening. I think the changes within our family had a much greater impact on him than anyone realised.

Not long after the separation, our dad suffered a heart attack, which left him severely brain-damaged and in a vegetative state for fifteen years. He eventually passed away in 2013. This was an incredibly difficult experience for all of us, but it had a profound effect on Stephen. Losing the father he’d been so close to seemed to add another layer of pain and confusion to his life.

My brother’s symptoms of schizophrenia

One memory that has stayed with me is when Stephen self-harmed. I’d never experienced anything like that before and I didn’t know how to react. Looking back, I realise how little I understood about his struggles and what he was going through.

As Stephen entered his early twenties, he became increasingly erratic and eventually could no longer live at home. He moved between different accommodations and had periods of living independently. The self-harm continued for years and became worse.

During this period, Stephen also began using drugs. He often spoke about being spiked and believed this was when he first started hearing voices. From that point onwards, things seemed to deteriorate. He became confused, struggled to cope, and often appeared lost in his own thoughts.

One thing that never changed was his kind nature. He has always been trusting, sometimes too trusting, and unfortunately people often took advantage of that. His vulnerability became a recurring theme throughout his adult life.

I remember when the reality of what he was experiencing became much clearer. Stephen openly talked about hearing voices and mentioned schizophrenia. I watched him zone out, stare into space, giggle to himself and then apologise moments later. He’d lost a significant amount of weight, was drinking heavily and looked unwell.

Moving forward with support

For many years, our mum searched for answers. There were countless appointments, assessments and different theories about what was causing his difficulties. Diagnoses mentioned learning difficulties, depression, trauma and even epilepsy, before schizophrenia was finally recognised. Finding the right medication took a long time, but eventually treatment helped to stabilise him.

Today, Stephen lives in supported accommodation, which has been essential. Even though Stephen is my older brother, there have been times when I’ve had to remind him to brush his teeth. Even simple tasks can be difficult.

When I decided to run the London Marathon, I knew I had to fundraise for a charity that had a connection to me and my family. Rethink stood out to me.

One of the first things I saw was the work Rethink do to change the stigma around schizophrenia, as well as the advice and guidance they offer to not only those diagnosed with it, but their families as well. Because of this, I knew Rethink would be the best charity to fundraise for.

Although Stephen still experiences voices, he remains the same warm-hearted person he has always been. He’s funny, caring and has an ability to make people smile.

Stephen's journey with schizophrenia has been challenging for him and for those who love him. Yet when I think about my brother, I don’t think first about his illness. I think about his kindness, his resilience and the courage he has shown throughout his life.