10 January 2011

Ignorance is bliss? No way

I’ve been thinking about the symbolic power disease has over us.


I’ve been thinking about the symbolic power disease has over us.

There’s a generation, for instance, which mimes the word cancer:
- He was just going for a check-up and they discovered it was [exaggerated miming, C..C.R, with only the sibilant C audible].
- Oh my... no... not [C..C.R]. Where? How bad?

Or – and no, Gladys, this doesn’t make you appear to be with-it – they call it 'The Big C'.

I’m not sure if this is driven by superstition – if you say it, might you call it down upon yourself? It’s laughable. But it also makes cancer appear more scary than it should be. It can be a terminal disease, but very often it’s not. Some forms are largely preventable, like cervical cancer. Most are to some extent treatable, though the treatment often sucks (if you’ve not yet discovered our cancer diarist, please do have a read).

Some, like prostate cancer, take so long to do real damage that statistically, you’re likely to be killed by something else first.

So it’s rough to treat sufferers as if they have a disease so powerful it can kill you just by naming it. (By the way, of all the books written about cancer, the most funny, most extraordinary, most inspiring, is Before I Say Goodbye, by Ruth Picardie. You have to order it from Amazon, but it’s worth the schlep and the wait.)

On to HIV/Aids. That’s a disease so stigmatised you find ex-presidents in denial, ex-health ministers tap dancing, and communities dying rather than acknowledging they have it, and getting treatment. Longstanding Aids activist David Patient can catalogue what the stigma has meant to him: amongst other things, he has lost jobs, been rejected and evicted, been denied medical care, and had threats on his life (and those of friends and even pets).

World Aids Day is coming up on December 1. Many of us have 'Aids fatigue': we’re so tired of reading and hearing about it that we just skip it. Don't. It’s a fascinating disease.

And the story we’re enjoying hearing now, is that Aids – like asthma, like diabetes – need not be a death sentence (not even to your sex life). David Patient was diagnosed in 1983. That’s 25 years he’s been living – proactively, usefully, often joyfully – with Aids. Our understanding of the virus, and our understanding of the disease, has come a long way.

The most powerful story, though, about the almost supernatural hold Aids seems to have, particularly in rural South Africa, is told in an extraordinary book by journalist Jonny Steinberg, called Three Letter Plague. It should be compulsory reading for every South African: it’s a window on our world that changed my perception of it forever, and it’s a great read.

Moving on: tuberculosis. It’s probably so stigmatised because of its joint associations with poverty and, more recently, HIV (TB is one of the most common opportunistic diseases associated with Aids). Wrongly so, by the way: we’re all susceptible. I have a friend (healthy, wealthy and wise enough to have never contracted HIV) who, diagnosed with TB, virtually went into hiding through the hard first three months of the drugs (and they are hard): he was too appalled at the diagnosis to feel okay about explaining his weakened physical state.

What really got me going on this thought about disease and superstition, however, is the cholera outbreak in Zimbabwe, seeping over into South Africa. With the memories of the recent xenophobic violence still stark, commentary has been worrying. One blogger spelled it out: "...If it will help dealing with the influxes of unexplainable diseases," he wrote, "then bring back xenophobia."

Cholera has a kind of timeless connotation of poverty and death, stinking pools and helpless medics. To the extent that you’re trapped in a world where there is poor sanitation and no defensive hygiene possible, a neighbour with cholera could be a threat, in the sense that faecal matter is how the cholera bacterium makes its way through the world.

It’s a logistical challenge, but with a simple solution. Like cancer, like HIV/Aids, like TB, cholera is a limited, manageable threat. We do have some control. Medical science does have solutions.

The point of all this, I suppose, is that we – South Africans – need to get over our woolly thinking about these diseases. Fearfulness breeds an anxiety that is inappropriate. Information is the only tool we have. And there is loads of information available.

Information also, I hope, breeds humanity. When your health is assaulted, when your body 'betrays' you by succumbing, it rocks you to the core, your sense of identity assaulted. Anyone who’s battling disease doesn’t want, also, to have to battle your anxiety and embarrassment.

It is the latter end of the first decade of the 21st century. Should a shocking diagnosis come my way, I’d rather be living now than in any decade that preceded this.

Until next time,
(Heather Parker, Health24, November 2008)




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