Saying what schizophrenia doesn't mean is a lot easier than saying what it does mean, says former psychiatric nurse and writer Nathan Filer.
He's written a fascinating study of the condition he calls 'so-called schizophrenia' – The Heartland (also published as This Book Will Change Your Mind About Mental Health).
Nothing in the world of mental health is uncontroversial, Filer tells Kathryn Ryan, and language is extremely important.
Medicalised language can feel different to people who share the same condition, he says.
"If you're someone who is seeking help for mental health difficulties and if you believe that your distressing thoughts or feelings are an illness, presumably located in the brain but otherwise the same as physical illnesses, you might prefer to think of yourself as a patient … because if you're essentially the same as a patient receiving treatment for cancer or heart disease why would you want to be called something different?
"But if you see [your condition] not as an illness but a natural response to grief or trauma, to see it wrapped up in medical language might not seem problematic."
Filer – who has been writing stories since he was a child – published his multi-award-winning first novel The Shock of the Fall in 2013.
That book was about 19 year old Matthew Homes, who never had a psychiatric diagnosis but could be "perhaps" schizophrenic, Filer says.
After its publication, many people with similar experiences got in touch with him to shares their own stories. From that, Heartland grew.
The title comes from the name that the British Journal of Psychiatry once gave schizophrenia as "the condition that defines the discipline", he says.
Its first name was dementia praecox (aka early-onset dementia), as given by German psychiatrist Emil Kraepelin in the late 1880s.
That name led to the false belief schizophrenia was a kind of progressive brain disease – an idea that took hold despite being "fatally undermined" by research, Filer says.
The 1910 "rebranding" of the condition as 'schizophrenia' (roughly translated from 'split mind' in Greek) led to another mistaken view that gripped the public imagination – the idea that it involved someone having two personalities.
In fact, saying what schizophrenia doesn't mean is a lot easier than saying what it does mean, Filer says.
"Broadly speaking, people who get a schizophrenia diagnosis are suffering greatly because of distressing thoughts, feeling and behaviours related to psychosis.
"Often these people lose contact with what most other people might perceive as reality."
Most also experience hallucinations and delusions, which Filer defines as "fixed or false beliefs not amenable to change in the light of conflicting evidence".
In Heartland, Filer says he does not try to arrive at any definite answers about schizophrenia or its treatment.
"I couldn't even if I did want to … I'm just trying to hold that uncertainty … and arrive at an empathic understanding, a place of understanding in our hearts even if we cannot fully understand this at a scientific level."
Nathan Filer was due to appear at the now-cancelled 2020 Auckland Writer's Festival.