7 Things People With Psychosis Want You To Know

"It was difficult for me to accept help, for my loved ones to support me. I found it humiliating, I didn’t trust anyone."

One in 100 of us will experience psychosis, where someone perceives or interprets reality in a different way from those around them. People with psychosis might experience hallucinations, delusions or thought disorder (becoming confused or having disturbed thoughts).

A diagnosis of psychosis is often hidden, confined to close family circles. The symptoms can be so real to those experiencing them that often they cannot see or understand that they need help, and it is often family members and close friends who have to intervene.

Publicly, psychosis is rarely spoken about. Yet the tide is turning. Thanks to celebrities such as Homeland actor David Harewood, who opened up about his experience of it in a recent documentary, public understanding of psychosis – and empathy for those impacted – is rising, albeit slowly.

Symptoms can be scary, but many people who experience psychotic episodes are able to live normal lives. We asked three people who have experienced psychosis to share what they want others to know.

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Everyone’s experience is different.

Psychosis is a symptom of mental illness, rather than a mental illness itself. It impacts people in different ways – some people might experience it once, while others will have short episodes throughout their lives or live with it most of the time.

Thomas Dunning’s first psychotic episode came shortly after he finished his degree in mechanical engineering. His brother had died five years before, and Dunning hadn’t properly dealt with his grief. At the height of his psychosis, he was having three to four episodes per week – he would hear voices but also see things that weren’t there. One particularly harrowing incident was when he hallucinated that his late brother was in the same room, staring at him with a blank expression.

“I would sit on the floor, rocking backward and forwards, laughing to myself,” says the 28-year-old from Lincoln, who found the hallucinations would often last from early evening until the early hours of the morning. “I’ve been to a place where I wanted to just smash the house up and end my life with numerous objects because of auditory and visual hallucinations,” he explains.

Dunning once had to stop driving and pull his car over because he believed he could see blood on his hands. He describes the episodes as feeling like his body was on auto-pilot, like someone else had control. “Next thing I know I’m either in an ambulance on the way to A&E or I’m in the waiting room,” he adds.

Hayley Smith, 31, suffers with out of body experiences and visual hallucinations. It started happening five years ago. “The first time was beyond terrifying, I thought I was dying,” she says. “Hallucinations are confusing and disorientating, as you don’t know what’s real, and what isn’t, and you have a constant feeling of something following you. My recent one is thinking I have a cat – I don’t.”

Psychotic episodes feel so real.

When someone is in the grips of a psychotic episode it’s as real to them as the computer or phone screen you’re reading this article on. If you tell them that it isn’t really happening, they often won’t believe you.

Augusto D. Mello, 51, from London, had his first psychotic episode 21 years ago, when he hallucinated he was having a drink in a hotel with a bearded man. “I believed I was having a beer with God,” he says. “People were checking in and checking out – and I was convinced the people who were checking in had died and the people checking out were spirits. I didn’t believe he was God, I knew he was.”

On returning home, D. Mello told his wife about the otherworldly experience – and it rang alarm bells. She took him to hospital where he was sectioned and treated for psychosis – he has since had multiple episodes, which he says have always been spiritual in content.

Psychosis can manifest alongside other mental illnesses.

It builds up over time, so what might start as anxiety or extreme stress can evolve into something more extreme. Significant trauma, a family history of psychosis, smoking cannabis and high pressure jobs can all expose a person to psychosis.

It might also occur as a result of a mental illness such as schizophrenia or bipolar disorder, or even a brain injury, according to Rethink Mental Illness. D. Mello has bipolar disorder and notes he was experiencing intense stress when he had his first psychotic episode, while Dunning and Smith both have anxiety. “Don’t dismiss anxiety as a minor mental health issue,” says Smith, “as it really does cause cognitive short-term damage.”

Psychosis is not a ‘descent into madness’.

Smith says that through treatment, she has come to understand how her body and mind work. “All psychosis is is a reaction to how you are feeling and a physical manifestation,” she says. “As with all mental health issues there are different levels of extreme and causes, and it’s important to understand what these causes are.”

Diagnosis can be both scary and a relief.

Putting a label on an experience can be helpful, because it confirms that there is something wrong, explains Dunning. “Before this I didn’t feel like there were any issues to be honest and it was just how I was,” he says.

But that didn’t stop him struggling with his emotions at the time – and the stigma surrounding psychosis didn’t help. “It hit me like a tonne of bricks,” he says. “I struggled to really think of anything other than ‘I’m dangerous’, ‘I’ve got no hope in life’ and ‘I should be locked away’ – but of course over the years I’ve come to learn that this is not the case.”

Having a diagnosis gave Dunning the necessary strength to accept that he had a problem and it needed fixing. It gave him the confidence to open up to his friends and family, and ask for support.

Support from loved ones is crucial.

After he was hospitalised, having support from his family was one of the most important aspects of D. Mello’s recovery. “One thing I learned is to work in partnership with everyone around you,” he reflects. “It took me a while to accept I had an illness. But from acceptance the recovery process began.

“It was difficult for me to accept help, as a man, to say I needed a psychiatrist, a carer, for my loved ones to support me. I found it humiliating, I didn’t trust anyone. But the moment I became a ‘yes’ man and I said ‘yes’ to support, my life and the recovery process changed.”

Recovery is possible.

Since seeking treatment, all three people have been able to move on with their lives. Smith sees a therapist weekly, who has helped to normalise what she’s been experiencing. “My therapist is amazing, and she does help me to understand what is going on,” she says.

D. Mello says that it takes about two years to recover from each psychotic episode. Coming out of hospital, where he’s been sectioned multiple times, can be “very traumatic” and he often feels depressed for a few months. But with a mixture of support from his family and treatment, he has been able to move on with his life – he now runs the company Seed Of Change and consults with organisations on mental health and wellbeing. “Only last year I was able to say out loud that I had a mental illness [his bipolar disorder],” he says. “It was liberating.”

Dunning also speaks publicly about his experiences to help reduce stigma. He says: “Recovery is a long winding path with many obstacles and forks in the road – but I like to imagine it as a quagmire, an expanse of land where it’s easy to become stuck, lose your way and put your own life at risk; but with the support and help of others it’s easy to get out, get on the right path or even better, completely avoid it in the first place.”

Update: This article has been updated to clarify that psychosis is a symptom of mental illness, rather than a mental illness itself, as you can experience it as a result of several different conditions.

Useful websites and helplines:

  • Mind, open Monday to Friday, 9am-6pm on 0300 123 3393
  • Samaritans offers a listening service which is open 24 hours a day, on 116 123 (UK and ROI - this number is FREE to call and will not appear on your phone bill.)
  • The Mix is a free support service for people under 25. Call 0808 808 4994 or email: help@themix.org.uk
  • Rethink Mental Illness offers practical help through its advice line which can be reached on 0300 5000 927 (open Monday to Friday 10am-4pm). More info can be found on www.rethink.org.