Friday, 13 February 2015

Don't Fall in the Nocebo Trap!

I read a fascinating article today about the 'nocebo effect' - the thought that can make you sick.

We've all heard about the placebo effect: the positive results that a simple sugar pill can have if the patient taking the pill believes that they are taking medicine that can make them better.  The nocebo effect is the opposite: the power of the brain to make us feel ill if we believe that we will be ill. 

The brain has an astonishingly powerful effect on our physical state.  In many trials in which placebos have been used, not only have patients receiving the placebo reported positive effects in the belief that they are being treated, but many have also reported experiencing the negative side effects of the real medicine even though they are only taking sugar pills.  And we're not just talking about people convincing themselves that they feel nauseous: patients have also developed rashes, skin complaints and even shown elevated liver enzymes just because they expect to redevelop these physical symptoms.

Yes, that's right, patients have developed measurable physical conditions simply because they expect those conditions to develop.

That's a really important realisation for those of us on chemotherapy.  When we start our regimes, we know that we face a possible raft of side effects.  It's important to know about those side effects so that we can prepare ourselves.  And yet, what if that knowledge is actually making side effects more likely?

I don't mean to belittle the very real side effects that we experience on chemotherapy.  Of course the chemical cocktail does genuinely have an impact on our bodies.  Even if the side effects are the result of a nocebo effect, they are nonetheless very real.   But if we recognise the power of our brains over our physical symptoms, both for good and for ill, can we harness that power to help us cope better?
It's easy to see how the nocebo effect can suck us in.  It happened to me when I convinced myself that I was ill because my white blood cell count was low.  I had, in fact, been obliged to postpone chemo several times for this reason and had felt weak and low each time.  On this occasion, I remember sitting in the waiting room at the hospital feeling awful again, waiting for my blood test result and being quite convinced that my white blood cells were low again.  I was utterly miserable because it meant cancelling a week away with my family to accommodate my new schedule but there was no doubt in my mind that I was in no fit state for chemo.  Half an hour later, I had seen the doctor and been told that my white blood cell count was (inexplicably) massively higher and I would be able to go ahead as planned.  Suddenly I felt dramatically better.  Not just less miserable, but physically better.  And yet, nothing had actually changed.

On better days, I managed more successfully to harness the positive power.

Last summer, before I started chemo, I was lucky enough to stay in a beautiful mill by a stream in sunny Portugal.  Every day, I stood on a stone in the middle of the stream to do my post-mastectomy exercises.  Looking at the glorious view and soaking in the sunshine, I told myself over and over that I was strong.  In that wonderful place, I felt strong, as if I was a battery being recharged by the sunshine and tranquility. 

Later, when I was struggling with chemotherapy through the dark winter months, I tried to put myself back in that place.  I remembered the warmth of the stone beneath my feet, the gurgle of the water dancing in the stream, the smell of the summer flowers.  And I told myself over and over that I was strong.

Did it help?  I think it did.  Did it mean that I didn't suffer side effects?  Of course not.  But I'm sure that I suffered less than I would have done otherwise.

 When we go through chemo, we are out of control for months at a time, pumped full of chemicals with long lists of side effects and seemingly helpless in the face of it all.  So it is perhaps an important reminder that we carry within our brains the power to make things better.... or worse. 

Getting it right doesn't mean we will sail through symptom-free, nor does it mean that we are not being positive enough if we feel really rotten.  But it does remind us to avoid the trap of making ourselves ill simply because we expect to be ill - and it arms us with a powerful weapon to fight to be as well as we can reasonably expect to be.

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