It’s Rethink Schizophrenia Awareness Week. Not that many of us will be unaware of schizophrenia. Terrifying reports about “schizophrenic murderers” and their “schizophrenic knife rampages” offer regular reminders that schizophrenia sufferers walk among us, recklessly released “into the community” by unthinking healthcare professionals. Contrary to the best efforts of the Sun, they’re not even forced to wear warning labels. With the disease affecting an estimated one in every 100 people, there could be a schizophrenic person in your vicinity right this very minute. But what does this actually mean?
As with most awareness projects, Schizophrenia Awareness Week has several key goals: raising funds, promoting support networks and making others aware of symptoms and treatments. There is one additional goal in highlighting schizophrenia, which is to convince the general public that the average suffererhas no interest in harming them. For sufferers and those who care for them, this misconception is a total pain. We’re never allowed to get stuck into the main issues without having to plough through the “not all murderers” speech first.
I may be being presumptuous, but I bet this never happens with anorexia or heart disease. With schizophrenia – and especially the paranoid variety – I shudder to think how much precious campaigning time is wasted on repairing the damage done by sensationalist, unbalanced reporting. The trouble is, there’s rarely a straightforward or positive image to counter the drip-drip effect of headline after scaremongering headline. If you take away the usual stereotypes about schizophrenia, what do you put in its place?
Schizophrenia has had an enormous impact on my family over the past 20 years. I still find it hard to explain to others, mainly because the mix of symptoms and side effects I’ve witnessed refuse to lend themselves to any clear narrative. Having attended a support group for relatives of sufferers, I’ve found this isn’t uncommon. There’s no neat template, charting a set progression. Perhaps for some of us there’s even a niggling worry that this isn’t schizophrenia. What if it was just a phase? What if the drugs made it worse? If there is no single test for schizophrenia, how can you know your response is the right one? There’s little benefit in dwelling on these things but we do so all the same. After all, if you’re used to black-and-white tales of paranoia and delusion, it’s confusing when real life only shows you shades of grey.
I would love to offer up a redeeming tale of how with love, support and acceptance, schizophrenia can be always managed, or that sufferers only fail to take medication because they’re absent-minded, not because the side-effects can be utterly grim. Or to argue that, perhaps, in a world more receptive to difference, hearing voices would not be so frightening because it would not be considered strange at all. There is some truth in each of these things but not always and never for all sufferers. This may be a failure of diagnosis and categorisation but for those caught up in its midst it makes no difference. There’s no time to refine the presentation of your illness when your focus is on getting from one day to the next.
If I could suggest ways to support people with schizophrenia, they would be simple ones. Set aside your preconceptions of madness and health. Don’t use the adjective “schizophrenic” as a metaphor to mean “in two minds” (if only it were that simple!). Know that with each individual embarks on his or her own journey of symptom management and that what constitutes a “well” phase can vary enormously. Accept that you won’t always be able to distinguish the ill person from what you consider to be “the person beneath” and that one day, you might even stop trying. Remember that, however woefully inadequate state support may be, you can’t let it become an excuse for wishing schizophrenia away from your community. Approaching this illness on its own terms doesn’t mean pretending it’s not ugly and often terrifying for sufferers and carers alike. It does, however, offer some way of finding peace.
The newspapers have all the dramatic stories, with violence, knives and blood. Out there in the wider world, individual experiences of schizophrenia become harder to articulate because the bar for exactitude has been set so high. That does not mean we shouldn’t try. A schizophrenia diagnosis is not a full stop; life goes on. It has to be possible to show understanding even when dealing with suffering that we cannot understand.