In early 2020, when I was 49, surgeons successfully removed a golf ball-sized tumour from my bowel. Cancer, they said.
There’s never a good time to be told you have cancer, but it’s especially ‘not good’ at the start of a global pandemic. With the SARS-CoV-2 virus ripping around the globe, I found myself stuck in bed with too much time to ruminate.
One thought, in particular, vexed me. Having worked as a neuroscientist, I already knew that there are close links between the brain and the body, so I wondered; could the maelstrom in my head somehow affect my prognosis?
The idea sparked a two year investigation into a phenomenon called the nocebo effect, and my new book, called This Book May Cause Side Effects.
You may have heard of the placebo effect, which is the mind’s ability to positively influence health. Take a dummy pill that has no medicine in it, and lots of people feel better for it. The nocebo effect is its evil twin. It occurs when thoughts, conscious or otherwise, conspire to conjure symptoms and steal wellbeing. Take a dummy pill whilst being warned that it could cause side effects, and lots of people develop side effects.
The effect has been seen millions of times in hundreds of thousands of clinical trials, where it occurs in the ‘control group’ of people who take placebo treatments.
When people are led to expect symptoms, very often, symptoms ensue. This includes fuzzy, subjective sensations, such as headache, dizziness and fatigue, and tangible, objective ones such as seizures, allergic reactions and constricted airways.
These sorts of symptom aren’t just confined to clinical trials. The nocebo effect exists in the real world too, where you have almost certainly experienced it.
When we have negative expectations about medicines, we make them less likely to work and more likely to generate side effects. Accordingly, it has been shown that more than two-thirds of the common side effects experienced by people after their first Covid jab were caused, not by the vaccine, but by the nocebo effect. The same is true for most of the reported side-effects caused by statins and many other drugs. A University of Oxford study, published this year and funded by the British Heart Foundation, which looked at 19 randomised trials with nearly 124,000 people in total, found those who were taking a dummy pill without any medicine were just as likely to report side-effects as those taking a real statin. That’s not to say these symptoms are imagined – they feel very real, but they weren’t caused by the drugs.
The nocebo effect taints our response to food too. When people who think they are gluten-intolerant are fed gluten-free bread, but told it contains the offending ingredient, some still develop abdominal pain and bloating. The same trend has also been seen in some lactose intolerant people.
Across longer time frames, the work of Becca Levy from the Yale School of Public Health shows that when people have negative expectations of ageing, they go on to age less well, even when other factors such as diet, exercise and smoking are factored in. Decades down the line, they are more likely to experience disease and ill health and die on average 7 years earlier than contemporaries with more positive views.
The more researchers look for the nocebo effect, the more they find it. Negative thoughts generate self-fulfilling prophecies that either cause or contribute to ill health. With each new example, the boundaries said to separate mind and body become shakier.
Dive deeper, and the repercussions of this false dichotomy can even be seen at the level of molecules and cells. Diabetics, for example, commonly believe that their minds hold no sway over their wayward blood glucose levels. Yet, in an experiment where people with diabetes sat in a room with a clock that ran at double, regular or half speed, their blood sugar rose and fell with the perceived – rather than the actual – passing of time.
Animal studies go further still. Asya Rolls from the Technion-Israel Institute of Technology has shown how activating specific cells in mouse brains causes changes to the immune system, which can speed the recovery from heart attacks and slow the growth of cancer.
In other words, physical problems in the body can be affected by neural processes in the brain.
What does all this mean for people with cancer, like me?
I’m six years cancer free, on a treatment plan called ‘watch and wait’. The strategy infers that my body may contain slow-growing cancer cells that could kick off again. Thoughts can’t cause cancer, but Rolls’ animal studies hint at a possible link between the activity of certain brain cells and the growth of existing cancer cells.
But to state the obvious, mice aren’t people. Their biology is similar but not identical, and Rolls’ setup is both intrusive and experimental.
Her results certainly don’t mean that thinking positively can cure cancer, or that thinking negatively can make it worse. Nor do they mean that cancer patients should veer away from conventional treatments, such as chemotherapy and immunotherapy, which remain the best option.
However, it does suggest that the idea of a mind-body connection needs a rethink. Mounting evidence suggests not just the mind and body are connected, but that they are so intertwined, it no longer makes sense to consider one without the other.
In light of this, I think twice about googling cancer-related information, and would urge anyone seeking any kind of health-related advice to do the same.
Around half of medical information on the internet has been found by experts to be inaccurate or contested. Search engine algorithms prioritise the rare and the sensational over the common and the benign. Meanwhile on TikTok, only 9 per cent of health influencers are professionally qualified and 40 per cent of medical information is either misleading or wrong.
The result, according to one survey, is that 43 per cent of people end up misdiagnosing themselves with serious diseases they don’t have. This creates anxiety and kindling for the nocebo effect, which can then dial up the salience of existing symptoms and cut fresh ones from whole cloth.
When they occur, nocebo-generated symptoms like this aren’t imagined. They’re not somehow less valid, because their roots lie in psychological rather than physical processes. It is precisely because mind and body interact so deeply that most, if not all, symptoms contain an element of the nocebo effect.
If we can accept this, it actually puts us in a position of power. We don’t have less control over our symptoms. We have more, because studies show that when people understand the nocebo effect, it lessens its grip. Expectations may have the potential to cause symptoms, but expectations are also malleable. When they change, symptoms can ease. New self-fulfilling prophecies are generated, that are helpful, not harmful.
So, for now, I choose deliberately to feel good about my health. If I have symptoms that concern me, I don’t consult Dr Google. I talk to a real doctor. For what it’s worth, I commit to the belief that my cancer is never coming back, and I choose actively to participate in the things that bring me joy, including my family, my friends and my fabulously scruffy dog. The nocebo effect may be out there, lurking in the shadows, but I choose to walk in the sun.
This Book May Cause Side Effects by Helen Pilcher is published by Atlantic Books (£22)
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