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6 October 2014updated 26 Sep 2015 7:31am

Schizophrenia is not a fatal illness, yet sufferers are still dying 20 years too soon

We have to go beyond the well-meaning commitment to “combat stigma” and be willing to share our time – that extra twenty years we currently have to ourselves – even when we are unable to measure what this will mean.

By Glosswitch

In the UK today, people with schizophrenia have the same life expectancy as the general population of 1930s Britain. Schizophrenia is not a fatal illness. It can be hard to treat and the severity of symptoms can vary enormously. It should not, however, kill you.

On the other hand, here are some things that can: heart disease; diabetes; respiratory disease. Schizophrenia sufferers are dying prematurely, not from the disease itself but from conditions that are treatable and often preventable. This is why today, at the start of Schizophrenia Awareness Week, Rethink are launching their +20 campaign, so called because sufferers of severe mental illness die, on average, 20 years earlier than the rest of the population. 

You may be assuming that the main cause of premature death in schizophrenia is suicide. It is not. Most of these deaths have physical causes, arising due to a mix of factors, such as failure to manage the side-effects of medication, unhealthy lifestyle and poor health monitoring. A fourth factor is “diagnostic overshadowing”, whereby a physical condition is overlooked or not taken seriously due to the patient’s mental state. As the sibling of a schizophrenia sufferer, this last one in particular resonates with me. I know that doctors have done this to my brother; I have done it to him myself.

In theory it should be easy to accept that suffering from severe mental illness does not make one immune to the same ailments which affect the rest of the population. In practice, however, this can seem “a bit much”. Mental illness can be so overwhelming and so all-consuming, it can be hard to believe there is space for anything else. Physical health then becomes subordinate to disease management. Anti-psychotic drugs are necessary, therefore the side-effects must be borne without complaint. Smoking is a comfort, therefore the normal rules of harm do not apply. These are just some of the assumptions that Rethink are seeking to challenge, in what is a drive not just to promote healthy lifestyles, but to show that physical health matters for everyone.  Schizophrenia sufferers do not merely have symptoms to manage but lives to live. And by that one doesn’t have to mean getting a job / a partner / whatever else passes for “normality” – it can simply mean living a life that is of value to you, with as much joy and as little pain as possible.

When I first heard the “20 years earlier” figure, I’ll admit that some small part of me felt relief. So it’s 55 rather than 75, or 66 rather than 86. How bad is that really, given how much pain and suffering the intervening years could contain? You can almost kid yourself it’s a mercy killing. A slow, painful death, borne of ignorance and neglect, can be repositioned – by the living – as what was meant to be. We can pretend it is a rational play-off between quality and quantity of life. It’s not that anyone has sat down and reviewed the pros and cons of all these needless deaths; no one has to. Collectively, as a society, we’re making all the little decisions which mean we never have to face the big one at all. Oh look! It’s just happened! How terrible! The drip-drip effect of not caring quite enough permits us to pretend the end result is out of our hands.

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And yet however awful schizophrenia is – and when it is treatment resistant, with no periods of respite, it can be awful – so many other things are entirely within the control of the society surrounding the sufferer: whether you can walk down the street without being feared or mocked; whether anyone visits you when you are too afraid to leave the house; whether anyone cares that you are healthy and secure; whether you find places – any places at all – where there are people with whom you can talk and laugh. None of this can be achieved by some vague but well-meaning commitment to “combat stigma” on the part of non-sufferers. We have to be willing to share our time – that extra twenty years we currently have to ourselves – even when we are unable to measure what this will mean. Even if there is a point at which empathy fails, we have to push onwards.

I am frightened of the future, but I want to face it with my brother. I want him to grow old with me and to live through that extra twenty years – the twenty years I simply expect – with as little fear as possible. I don’t believe any human being loses the ability to be happy, or to feel the warmth that comes from others. Much as I’d like to picture old-aged us by some cosy fireside, exchanging fond reminiscences on 1980s TV, I know it’s unlikely to be that way. But it is possible to imagine life and hope, and for some to be denied this due to stigma is a disgrace.

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