Mental health medication: Stigma is not the only problem

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.

New Statesman: There’s more to supporting those with mental health problems than fighting stigma

According to a survey conducted by the BBC to coincide with its In The Mind series, the stigma associated with mental illness is subsiding. More people would be prepared to reveal a diagnosis to friends and employers. Ten years since the release of his documentary The Secret Life of the Manic Depressive, Stephen Fry argues that things are changing for sufferers: “it’s more talked about […] It’s in the culture more and it’s understood more.”

This can only be a good thing. There’s no way of quantifying just how much the pain and isolation of suffering from a mental illness can be compounded by the fear of others finding out. Even now, I find it difficult to answer seemingly simple questions, just in case someone fails to understand or disapproves. What were your schooldays like? Why did it take you so long to finish your degree? What does your brother do? I am cagey, not least because when I do tell the truth, even the nicest of people are unsure what to say, leaving me to feel I should offer reassurance. Yeah, but I’m not mad now! Sure, he’s schizophrenic, but he won’t kill you or anything! Cue nervous laughter, and a relationship ever so slightly marred by the sense that I must now prove myself to be “normal”, an impossible task for any of us at the best of times.

Read the full post at the New Statesman

Thanks, Sun! Challenging the mental health system, one lie at a time

Whether you’ve been a mental patient yourself, or merely cared for someone who is, it’s easy to feel let down by system. It’s not that there aren’t plenty of devoted healthcare professionals out there, people who are more than ready treat each patient as an individual, but sometimes it’s not enough. Care provision can be patchy, medication unreliable and wider social support networks non-existent. Thank goodness, then, for the Sun.

With today’s 1,200 KILLED BY MENTAL PATIENTS front page the newspaper sent a clear message to an often uncaring society. As Stig Abell, the paper’s managing editor explained on twitter, the piece was all about creating “better communication between agencies” and enabling us to see the “ill as victims”. About bloody time! As the sibling of a paranoid schizophrenia sufferer, I’m sick of seeing the mentally ill being ignored. What better way to draw attention to those who are suffering and marginalised – and garner some much-needed sympathy in the process – than by making other people think that the mentally ill are out to kill them? Genius! Continue reading

So why DID Asda think a mental patient Halloween costume would be okay?

So, fellow mental patients, just how mad should we be getting about Asda’s Halloween “mental patient fancy dress costume,” complete with strait jacket, fake blood and cleaver? After all, the supermarket has now apologised for any upset caused, withdrawn the item from sale and promised to donate “a sizeable amount” to Mind. So no point going psycho now. Let’s all calm down, keep taking the tablets and leave the normal people alone.

Given the degree to which mental health stigma has seeped into our everyday language, it’s not all that surprising when retailers think it’s okay to make fancy dress costumes based on The Mad. You can see how it happens. The mentally ill, when they’re not being dismissed as everyday malingerers, tend to assume a mythical status. They’re lurking in the shadows, never to be seen in broad daylight. How can you offend a thing that isn’t even real? Continue reading

Fear, anger and “dangerous schizophrenics”

Dangerous schizophrenics, eh? Can’t live with ‘em, can’t lock ‘em up and throw away the key, at least not until they’ve actually done something. It’s political correctness gone, quite literally, mad.

Yesterday evening I watched an ITV News report on Nicola Edgington, official, card-carrying DANGEROUS SCHIZOPHRENIC. Except apparently she has “borderline personality disorder” instead. I don’t know the precise distinctions – beyond the fact that one seems to make you more criminally culpable than the other – but I do know that “borderline personality disorder sufferer” doesn’t sound as good as “DANGEROUS SCHIZOPHRENIC”. Hence the report was at pains to highlight the link between people being DANGEROUS and SCHIZOPHRENIC. It isn’t much of a link, but still, it’s one that’s always worth exaggerating when you’re aiming to be sensationalist, ablist and utterly shameless in your reporting. Continue reading

Christmas guns for the mentally ill

Buying Christmas presents for men is a nightmare, isn’t it? With women, it’s easy – chocolates, bubble bath, random pink stuff – it’s not as though there’s any need to consider the individual. With men, though, there’s that need to treat the recipient as a person, someone with actual likes and dislikes. Hence you never know what to get them, spend ages thinking about it – all the while chucking more random pink stuff into your basket – before muttering “fuck it” and buying socks and beer. Mind you, it’s the thought that counts – and while your present might be rubbish, you’ve thought about it loads.

Each Christmas I always want to get something special for my brother, something that will genuinely make him happy. Alas, I never know what to choose. It’s not just because he’s male (he has been for forty years, so I’m used to that) but he’s also unwell (and has been for forty years, too). He has schizophrenia – i.e. the “scariest” of the mental illnesses – but as ever, this doesn’t say much. As with all schizophrenics, what he actually suffers from is a rag-bag of symptoms, which includes hearing voices but certainly isn’t limited to that. And unlike many schizophrenics, he isn’t, say, obsessed with one particular thing. On the contrary, he isn’t all that interested in anything. I often wish, for him, that he was. Continue reading