The invisible disease

By Gabrielle Carey and Julia Brown,  PhD ’18, BA ’12 (Hons1), BSc ’11

Early in May, the streets of Canberra were alive with multiple Luke Skywalkers, Princess Leias and Chewbaccas – walking, talking, breathing Canberra people dressed as Stars Wars characters. It was 4 May, International Star Wars Day (‘May the fourth be with you’) .

Compared to this celebration of a fantasy world, International Schizophrenia Day, towards the end of the same month, was barely visible. Indeed, one might even suspect that Schizophrenia Awareness Week – 20–27 May – went by unmarked in the capital precisely because it is the disease we desperately do not want to be aware of.

Whether we are aware of it or not, our imaginations are shaped by Hollywood images and storytelling. And, thanks to movies like Psycho and the 628 other films listed on movie rating site IMDb with a mention of schizophrenia in the plot tags – the majority of which are in the horror/ slasher category – the popular mind immediately associates schizophrenia with incomprehensible and unwarranted violence. No wonder we don’t seek out awareness.

Neither does schizophrenia lend itself easily to branding. There are no white or pink ribbons, no Sydney-toWollongong bike rides to raise funds for research and no high-profile celebrity sufferers speaking out to humanise the disease.

For decades, it has resided in the shadows – people suffering from the illness are seen as schizophrenic first and human second. They imagine themselves – because the popular imagination is convinced on this point – that they are inherently incompetent and without the capacity to live a normal life. But, as research into our most troubling madness suggests, the way we treat the person may be just as important as the drugs we administer to them. Indeed, the worst symptom of schizophrenia may well be the symptom of social exclusion and misunderstanding.

As Sylvia Nasar wrote in her book A Beautiful Mind about Nobel Prize-winning mathematician John Nash, ‘More than any symptom, the defining characteristic of the illness is the profound feeling of incomprehensibility and inaccessibility that sufferers provoke in other people.’

The word schizophrenia has such negative connotations that it has been labelled ‘the scariest word in the English language’ and in Japan a decision was made to change the name in the hope that it might lead to de-stigmatisation. But changing the name is no simple answer.

The very silence attached to the condition in the first place deserves more public awareness.