This is one of a series of blogs commissioned for The Power of Placebo – a national programme of events that accompanied our performance, Placebo. The ‘placebo response’ describes an effect which occurs when a person is given a ‘fake’ or ‘inactive’ treatment but experiences an improvement in health regardless. Scientific research has also shown that factors such as the colour or size of pills can impact on their effectiveness. This programme of events brought together leading scientists, cultural thinkers, artists and medics to explore how our beliefs, relationships and environments can affect our health for better or for worse.
As part of The Power of Placebo, Sarah Goldingay spoke as part of Agents of Change: The Power of Placebo at the Wellcome Collection on Saturday 3 November 2018.
‘If we think of placebos as pills we’re missing the point’
by Sarah Goldingay, Lecturer in Drama at Exeter University
I meet my Mum on the stairs. She shows me she’s started wearing a copper bracelet. She says it really helps with her joint pain. She explains that she knows that lots of people think it’s nonsense but, for her, it’s the bracelet that’s doing the trick. I need to be very clear – just in case she reads this – my Mum is wise, sharp and an excellent critical thinker. She hasn’t just been ‘the victim of a scam’.
As I listen, an alternate strand of my consciousness is working. I know I’m on thin ice. You see, I’m a researcher who explores the role of culture, context and interpretation on the so-called placebo effect. And yes, I do believe in what Medicine calls placebos. But for me, this isn’t about sugar pills – folks have been facilitating their own placebo response since humans have been around. The way that we experience the world and interpret our lives has a significant effect on how we assist our own healing, our daily return to homeostasis. So, I know that a negative encounter slows down the body’s capacity to self-heal: I know that placebos have an evil twin, ‘nocebos’ [pronounced NoSeeBo].’ And, I know that if I get my response wrong, rather than reinforcing the healing placebo benefits my Mum’s experiencing, I might trigger a negative response, a nocebo. And worse than that, I won’t simply damage the positive response she’s facilitated for herself, I’ll also undermine her in some way. I might even make her doubt her capacity to make good choices about her health and wellbeing in the future.
I want to hold her with all my attention. I know that her feeling heard and understood matters. I know my response is important. I also know that having this bizarre conversation with myself isn’t helping, and I come back to the person in front of me. As I look at this woman I love, it doesn’t matter what is triggering her healing response – I know that what she’s feeling, what she believes is a fragile thing and she needs to be affirmed. So, I say that the ifs and hows don’t matter. What matters is that it’s working. She justifies her experience some more – I’m not sure this part of the conversation is for my benefit or for hers. All I know is that something that Western Medicine would dismiss as a placebo is making my Mum feel less pain, facilitating an increased range of movement, helping with better sleep, allowing her to do more exercise and be more socially active — all of which in themselves are life-enhancing and will ameliorate the joint pain further. There aren’t any side effects to this carefully plaited copper band. The bracelet is a good thing. But the bracelet does not have the approval of a medical license because its effectiveness cannot be proven using the same approaches used to license a pharmaceutical. You can’t do a randomised controlled trial on contextual interpretation. In those terms it’s a placebo – it’s a placebo that is beneficial.
It’s odd that at this moment in history we find ourselves in this bind. Medicine has made tremendous advances and brought about significant benefits to our quality of life. But, it has also become the dominant story, and we’ve given it significant cultural power. We have given much of our interpretative power. We wait for medicine to validate our health experience. We tend to wait until we’re sick before we think about being well. We tend to seek out a pill even for a chronic condition that can’t be treated. Unintentionally, because a person has attributed an improvement in their wellbeing to non-medical treatment, we often undermine that because culturally we have placed our belief in science rather than in our capacity to take better care of ourselves. We say it’s just a sugar pill and if it happens to improve your wellbeing, well, then, you’re gullible.
Later on, a cup of tea in hand, I reflect on the social complexity of placebos. As long as placebos are seen pejoratively, as a means of tricking the vulnerable or exploiting the feeble-minded, we are undermining the multiplicity of ways that over the course of their lives people choose a range of things that help them feel well and whole and happy. When we talk about placebos, we typically say, that something works to aid our wellbeing, even when it shouldn’t. But to undermine the placebo response of ourselves or another isn’t a smart thing to do. Some things make us feel better even if they haven’t been prescribed, been licensed through a randomised controlled trial or been recommended by our GP. We know what these things are for ourselves. They change over time and with context.
I guess as I get close to fifty, they’ve returned to the things that mattered when I was seven: trees to climb, a breeze to lean into, birdsong to accompany, and water to swim in.