What it’s like to live with schizophrenia

Movies and TV shows often portray schizophrenia as having a split personality, but having multiple identities is not a symptom of the mental illness. Photo / Getty Images

Emma* was just 15 when she began developing symptoms of schizophrenia, a mental health condition where people experience psychosis such as hallucinations, delusions and unusual patterns of thinking or speaking. More than two decades on and now tertiary qualified and working in mental health, Emma tells Paulette Crowley what it’s
like to live with the much-misunderstood condition.

My journey with schizophrenia started at the age of 15, more than 25 years ago. It began with depression and anxiety, which kind of built up. I thought it was probably just normal teenage stuff, but it really went downhill when I was 17 and then I got sick with psychosis at around 19.

I started to have what they call unusual beliefs that had no basis in reality. I believed the TV was sending messages to me. That’s called a referential delusion and is quite a common thing with this condition. Some of these paranoid delusions might be that people are out to get you, or the police are following you. These ideas and beliefs are really concrete and no one can talk you out of them, even with all the rationalising in the world. And then you kind of get into this space where you ask, “Why are people trying to convince me?” It makes the paranoia worse and perpetuates the cycle.

I started to hear voices a couple months later. I was terrified. I kept the voices to myself for quite a while but then I told my parents. That’s when I got some help, which was really good.

There are different types of schizophrenia, like paranoid schizophrenia and catatonic schizophrenia. It’s also related to schizo-affective disorder and general psychosis. These kinds of diagnoses can start to appear in people in their late teens and early adulthood. The exact cause remains unknown, but genetics and trauma might play a part. Taking drugs, especially methamphetamine, can also trigger a psychosis.

I’ve had lots of different diagnoses, and I identify with components of all of them. But the overarching thing with me is the psychosis that I experience, the voices, hallucinations and paranoia. This is what I struggle with every day. I’ve heard different voices through the years but the theme is consistent – they’re very derogatory and very abusive towards me and other people. Some of them are what you call command hallucinations, when the voices tell you to do things. It’s really tricky not to do what they say sometimes.

When I first started to experience psychotic symptoms, I was put into a special early psychosis team, which is an intervention service for young people who’ve just had psychosis emerge. It provided me with multidisciplinary, wraparound support with an occupational therapist, a nurse, a psychologist and a psychiatrist. My family had a social worker, who helped my family help me and showed them how to look after themselves when I was unwell. This service was really, really good and helped us all a lot.

After a couple of years, I went to a rehabilitation centre which helps people with psychosis manage their lives. You live there and learn skills to cope with your psychosis – your voices, visual hallucinations, paranoia or delusions. You take “hearing voices” workshops and learn skills like cooking and cleaning for yourself. I stayed there for over a year. It kept me safe and helped me to understand what was going on. It gave me the opportunity to try different anti-psychotic medications and other medications. But it didn’t take things away. It wasn’t a perfect fix. I know nothing will ever fix this.

I find stress the hardest thing to manage with mental illness and have to avoid it as much as possible, because it can make me unwell. The voices will get louder; things will get harder. If I can predict that something’s going to stress me out, I try not to do it.

I’ve been hospitalised many times over the years. This happens when I get so unwell that I can’t be managed in the community. I’ve had some really long admissions, up to four months at times. There have been shorter ones, too. I always get well again, although the voices never really go away.

Medication is a big part of managing my condition, which helps me with lots of things. I can’t sleep without it. When the voices and other symptoms are really bad, it can be helpful. Sometimes meds can seem like a miracle pill and take the voices away but most of the time it just dulls them.

When I feel myself getting unwell I try to distract myself by keeping busy, maybe with cleaning the house, or baking something. I like to sew and I’ll read, if my mind allows me to. But trying to take your mind off what’s going on in your head is pretty difficult because your mind goes with you everywhere.

I’ve started living by myself in the past year. It has its ups and downs but overall, I like living alone. It gives me peace and quiet, because noise and stuff trigger me and make the voices worse. If I’m being tormented by the voices, I can just close all the curtains and cuddle down under a blanket and try to get through.

Unfortunately, there’s a lot of stigma attached to this kind of mental illness. Some people think people with schizophrenia are aggressive and violent and there’s a lot about that in the media that perpetuates that stigma. But there’s research that shows people with mental illness are more likely to be victims of violence. There’s also a stigma around not taking medication – that if someone’s “off their meds”, they’re dangerous. Those ideas just aren’t based on facts.

I think it would be good if people asked more questions about mental illness and tried to educate themselves. If they know someone who has a mental health challenge, maybe they can ask thoughtful questions and engage with that person. I tell people with mental illness, by sharing your story, it can empower you and give you purpose and meaning. You feel like your experience wasn’t wasted and that somebody cares to ask what’s gone on for you.

*Given the stigma that still exists around schizophrenia, Emma is a nom de plume. For more information, go here.

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