Earlier this year someone very close to me became seriously ill, so much so he was in ICU and it was expected he would die. The cause of this was not unknown: it was a side-effect of anti-psychotic medication, which he’d been taking for the past 20 years in order to treat schizophrenia.
It was not an unexpected side-effect. Everyone treating him had always known about it but it was considered a risk worth taking for a “treatment resistant” case such as his.
On average people like him die 20 years prematurely. There is not one specific cause for this. It is not necessarily the illness itself – that is, suicide, a common assumption — but tends to be a combination of neglect, poverty and preventable physical illnesses. With regard to the medical profession there is a tendency to misdiagnose physical problems or simply disbelieve a patient when that patient is mentally ill. In addition, there is the physical toll of psychiatric medication. High-strength drugs such as clozaril, which might dull (but never quite silence) the voices, come at an incredibly high cost to those who take them.
It is of course a cost that psychiatrists have considered worth paying, and they will persuade patients and families to agree. I write this not in judgment – what other options are available? – but simply to state the facts. Schizophrenia is real, absolutely, but still grappled with and defined by other humans, the sane ones, in their own clumsy, imprecise, prejudiced way. Schizophrenia sufferers are people who are not considered “normal”, by which I do not mean the only real problem they face is stigma. They are normal people – whatever that might mean – but they suffer from delusions. How can these be treated? Right now, with drugs. With the pharmaceutical equivalent of being smashed over the head with a mallet (I do not exaggerate. That is what it is like. The medication does not hone in on the voices unheard, but bludgeons every human feeling in the hope of not missing the bad ones).
I am not a conspiracy theorist (or maybe I am? What is a feminist, if not that?). In any case, I do not spend inordinate amounts of time fretting over whether Big Pharma is one massive con trick, creating imaginary illnesses simply in order to get more cash (unless we’re talking about the beauty industry, in which case, yeah, it’s that). I am less convinced of the supposedly evil intentions of drug companies than I am of the human desire to ensure that everyone can “fit in”. I don’t think schizophrenia is some sinister invention. I do however think that the cost of treatment – and the cost of a schizophrenia sufferer’s life – is being set by people who have a fixed idea of “normal,” that is, by people who see mental illness solely in terms of an individual’s distress/inability to fit in as opposed to taking into account any broader social context. These are the people who, earlier this year, sat discussing with my parents whether my brother had a life worth living, due to his reaction to a drug regimen which had always assumed “well, quality of life, what’s that?”
Two years ago I would have said to anyone who raised questions about schizophrenia and drugs “you don’t understand. It doesn’t matter whether a particular drug gets an individual and their carers through the day. It matters that they survive.” And yet we are talking about drugs that kill people all the same. They kill them, slowly, yet to question this is considered ignorant.
I am increasingly uncomfortable with the drive to present mental illness as the same as physical illness when it comes to treatment, not least because treatment itself can be the cause of so much physical deterioration. This drive seems to me a moral, idealistic one which is not always taking into account the practicalities and the high costs.
The situation my family is dealing with is one in which an individual’s severe mental illness is now accompanied by physical disabilities resulting from side-effects – and the drug which caused the side-effects cannot even be taken any longer, so a less effective one is in use. We are in a much worse place than where we started. Would it have been better to take the less effective, but lower side-effect drug to begin with? I don’t know. What is clear to me is that the problem for us is not some universal stigma against taking any form of medication for mental health conditions. It is far more complicated than that and I think this needs to be more widely understood.