21 million people are wrong: YouTube not the way to know what it’s like to have schizophrenia

Last week my friend’s son waited in the emergency department of a Sydney hospital for four days. He is 21 and has schizophrenia. On the first night he got up and walked out. The police went to his home, broke down the door, tackled him to the ground and took him back to the ED. A security guard was installed at the end of his bed, the injuries sustained during the police scuffle left untended. He’s a mental patient after all. It’s not a physical problem. The entire scenario could be interpreted as symbolic of society’s attitude towards schizophrenia, which is a combination of fear, neglect and wonderment.

The top search related to schizophrenia on YouTube is “schizophrenia simulation” – short films attempting to simulate what it’s like inside the schizophrenic mind by recreating psychosis with hallucinations, voice-hearing, delusions and disorientation. The most popular schizophrenia simulation has had more than 21 million views. People are clearly intrigued by what has been described as our most mysterious mental illness.

Video simulations are inadequate when it comes to representing schizophrenia.Credit: E+

But who exactly is searching out this information? Family and friends wanting to understand how it feels? People who suspect they may be suffering from the condition but too afraid to ask a doctor? Or is it just curiosity that drives people to explore the profoundly “other” at a safe distance?

Whoever and whatever is behind the interest in watching actors pretending to be suffering from schizophrenia, the fact is that video simulations are inadequate when it comes to representing the vast variations of this baffling illness. Most are not an accurate reflection of what it’s like to live with schizophrenia. So is there any way that “ordinary” people can really understand this extraordinary condition?

Apparently yes. It’s as easy as falling asleep.

Neuroscientist Professor Matthew Walker of the University of California Berkeley has posited the idea that every one of us experiences a form of psychosis on a daily basis. Each night when we fall asleep we enter into something that approximates a psychotic state. The REM stage, in particular, he claims, is “flagrantly psychotic” because it has features common to psychosis. These features include: seeing things that aren’t real – what might also be described as hallucinations; believing things that couldn’t possibly be true – a form of delusion; and experiencing a fragmented or fluid sense of time and place, which could be described as disoriented. All symptoms of psychosis.

In the very earliest literature about the condition of schizophrenia, originally termed dementia praecox, it was often described as “a waking dream”. Eugen Bleuler, the Swiss psychiatrist who invented the term schizophrenia in 1908, believed that “thinking in dreams and schizophrenic autistic thinking are essentially identical”.

Another similarity between dreaming and psychosis is that while we are in the dream, it feels absolutely real. Most of us know the feeling of waking up from a flying dream and thinking, That felt so real! And yet it’s not. It is a reality not shared by others – another hallmark of a psychosis.

When a person, often in adolescence or early adulthood, experiences their first psychotic break – hallucinations, for example – they can often seem so real that the sufferer believes that everyone else can see what they’re seeing.

Lauren was 15 when she started seeing gigantic spiders everywhere – spiders on the roof, spiders coming out of walls “as big as plates”.

“In the beginning I thought that it was something that everyone could see. And I thought it was weird that no one else was questioning the fact that these spiders were everywhere. I honestly thought everyone else was going crazy but me.“

Another aspect of psychosis that is similar to dreaming is that when you’re dreaming you’re not conscious that you’re dreaming. You are incapable of being aware that you are in a dream. The phenomenon of people with schizophrenia being unaware of their condition or refusing to acknowledge it is so common that it has its own word: anosognosia, which means “lack of insight”. They simply do not believe they are mentally ill. And this is one of the primary reasons that they often refuse medication.

For Lauren it took months for her to tell her mother about her symptoms. For others it can take years. Unlike a dream or a nightmare, which people are often happy to share with friends and family – laughing over the weird workings of their subconscious minds – sharing a story about your psychotic state at the dinner table may not go over so well. Neither do you generally meet your workmate in the tearoom and say, “Hey, I had the weirdest psychotic episode last night. Wait until I tell you.”

One of the main reasons why young people keep their symptoms secret is because they are too frightened or embarrassed to tell anyone for fear of being categorised as a “psycho” or “schizo” or referred to as having “a split mind”, which, according to leading schizophrenia researcher Professor John McGrath of the University of Queensland’s Brain Institute, is still “by far the most common misconception about schizophrenia”.

This means that often when a young person arrives in an emergency department and is diagnosed with suffering their “first psychotic break”, it isn’t their first at all. And this is part of the reason why a diagnosis can take so long. And when it comes to psychotic disorders, a delayed diagnosis is potentially disastrous because early intervention can mean the difference between complete recovery or being on a disability pension for life.

That is not to suggest that people diagnosed with schizophrenia immediately qualify for a Disability Support Pension. The DSP has become so difficult to get that applications from people with schizophrenia – which is acknowledged by the WHO as one of the most disabling mental disorders – are regularly turned down and they are increasingly left to survive on JobSeeker even though the job agencies make it abundantly clear that in the eyes of recruiters, employers and the general public their condition makes them unemployable.

“As soon as they find out I don’t have a driver’s license and I’ve spent the last three years in and out hospital, they don’t even try,“ a 25-year-old man recounted to me recently about his compulsory fortnightly job agency appointments. At 17, his apprenticeship had been interrupted by his first psychotic break. It took another five years before he was diagnosed. By that time he had lost crucial employment and educational opportunities, a common experience among people with schizophrenia, the vast majority of whom are diganosed in their late teens or early twenties.

At this point you would be forgiven for thinking Yes, but isn’t this precisely what the NDIS was invented for? For people with lifelong disabilities? The fact is, however, that many people with schizophrenia – if they can manage the burdensome paperwork required to make an application – (which would of course necessitates not suffering from anosognosia or psychosis) – are also regularly refused packages.

It is a good thing that 21 million people have googled “schizophrenia simulation”. Surely at least part of that curiosity arises from a curious empathy rather than a desire to ogle at a psychiatric spectacle. And yet, it is precisely the extraordinary and spectacular dimension of schizophrenia that has caused it to be left for so long in the too-hard basket.

As Dr Sebastian Rosenberg of ANU’s Centre for Mental Health Research says, “In Australia there is a cleavage between the ‘good’ mental illnesses – the conditions such as anxiety and depression – and the ‘bad and mad’ mental illnesses such as schizophrenia.“ In other words, although we might want to watch videos of bizarre conditions, we feel far more comfortable investing money in the more acceptable, more common, less weird conditions. This is partly because we’ve come to believe that schizophrenia is untreatable and unrecoverable. But this is not the case.

“Until recently diseases such as Hep C, HIV and melanoma were all considered death sentences. They are no longer,” says John McGrath. “There is absolutely such a thing as recovery from schizophrenia.”

The difference is that someone with Hep C, HIV or melanoma would not be left waiting for days in the emergency department corridor. Until our attitude toward psychotic disorders changes, very little will change for those who are afflicted, by genetic chance, with this illness.

Opinion newsletter

Opinion takes on the week’s most debated topics with views that will challenge, champion and inform your own. Sign up to receive it every Thursday.