Changing the conversation about work and cancer

Cancer Survival – Why Staying Positive is Never Enough

Stephen Bevan

Having been a cancer patient for over 5 years now, it is very noticeable that most family members, friends and colleagues appear much more at ease when I am cheerful and upbeat. I think this is partly because it is reassuring to them if I look like I’m coping well, taking the fight to the cancer and trying to stay strong for those closest to me.

But even as I approach the final stages of what we euphemistically call my ‘cancer journey’, so many of my interactions with others are bounded by my middle-class instinct not to cause them any awkwardness. In answer to the perfectly normal ‘how are you?’ question I still offer a limp and often disingenuous ‘OK thanks’. Part of me feels a perverse obligation to protect others from the discomfort of having to acknowledge my looming demise, my cancer pain, my premature separation from my family, the discomfort of my cancer treatment and my undignified transformation into an emaciated figure with no stamina and almost no remaining hair.

This impulse to shield others from all of this is partly pragmatic. I don’t want to have to explain my terminal diagnosis to everyone, nor do I want to cause people unnecessary distress when they realise how crass the ‘how are you?’ question can sound when no offence is ever meant by it. Aside from pragmatism, keeping the conversation light on detail and even lighter on self-pity makes it easier to shift the topic quickly on to the weather or Strictly Come Dancing. My instinct for keeping things bland  was reinforced recently when I was told by three people in just a couple of days that I should focus on staying as positive as possible. It is hard to know where to start when it comes to evangelical optimism like this. On a good day I can explain it away as a kindly though misplaced attempt to keep my chin up and to let me know that they are rooting for me. On bad days, however, being told to stay positive is one of the most incendiary pieces of homespun advice that anyone living with cancer can be given.

At one level of course the idea of deploying positive thinking and having an optimistic outlook makes perfect sense. Being positive is often associated with a sense of agency, a willingness to look energetically for solutions to problems rather than giving in to them, and a mindset which is associated with psychological resilience, resourcefulness and persistence. It is not hard to see, therefore, why many people feel that positivity can play a part in protecting us against illness and  overcoming adversity. In that context what is so bad about an entreaty to stay positive by someone struggling to know what else to say about my ultimately gloomy cancer story?

I can see at least three problems with the idea that those of us living (or dying) with cancer should embrace positivity as s quasi-therapeutic intervention:

  1. The scientific basis for holding such beliefs seems quite weak;
  2. Belief in the power of positive thinking reinforces the view that your state of mind, the choices you make and even your dominant personality attributes can have a predictable influence on your health outcomes. Finally succumbing to cancer is, according to this logic, partly down to a lack of effort or willpower on the part of the individual – that survival is just a matter of character;
  3. By extension, the ‘positive thinking’ argument suggests that I could have done much more to prevent my cancer in the first place and that I have made some ill-judged lifestyle choices in the past for which I am, only now, having to face the consequences.

Having spent my career as a researcher it’s probably no surprise that I’ve looked for any research evidence that cancer outcomes can be influenced by positive thinking. It seems that the lack of such evidence is explained, at least in part, by the difficulty encountered by scientists in designing credible studies of this phenomenon. Aside from this, it seems that the overwhelming weight of evidence shows no relationship at all. The research is probably best summed up by a paper by James Coyne and Howard Tennen (called Positive Psychology in Cancer Care: Bad Science, Exaggerated Claims, and Unproven Medicine) in which they conclude that “most commentators … agree that the accumulation of studies have demonstrated the fighting spirit lacks value as a prognostic factor in cancer, much less as a causal factor.” There are of course, others who disagree. Evolutionary biologist, the late Stephen Jay Gould, is often cited as an advocate of the power of positive thinking – in his case after receiving a cancer diagnosis himself. He said:

‘..match people with the same cancer for age, class, health, and socioeconomic status, and, in general, those with positive attitudes, with a strong will and purpose for living, with commitment to struggle, and with an active response to aiding their own treatment and not just a passive acceptance of anything doctors say tend to live longer..’

One study appeared to find a link between pessimism and optimism and cancer survival rates, although for a proportion of the subjects having a pessimistic outlook seemed to influence whether they opted for a surgical intervention which might have played a part in increasing their chances of survival.

The positivity ‘trap’ is also a risk taken by some employers as they encourage their staff to take part in wellness initiatives. For example, there is evidence that many employees are unwilling to participate in workplace health and wellbeing programmes because they can inadvertently reinforce stigma over, for example, their willingness to make healthy lifestyle choices or their willpower in relation to overweight or obesity. In the case of those cancers widely thought to be linked to so-called ‘modifiable health risks’, some employees may feel that they are implicitly being blamed for contributing to their own ill-health through ‘bad’ choices made decades before. They can also feel judged if they are not displaying sufficiently positive or ‘fighting’ spirit in the way they are managing their disease.

While I have a natural aversion to the idea that being unrelentingly cheerful about a cancer diagnosis is going to make any difference to how things eventually turn out, I can see that resisting the temptation to ‘catastrophise’ also has merits. Perhaps what we really need is some good research about the most effective coping strategies which cancer patients adopt when facing up to the many challenges of living with a cancer diagnosis, and especially a terminal diagnosis. This might help us all to cut through the stories of heroes with an unwavering fighting spirit, and to embrace the fact that it is OK sometimes (but only sometimes) to be scared, angry, confused, miserable, powerless and – yes – just a little bit negative without giving up the ghost entirely.

About Stephen Bevan

Stephen Bevan is Principal Associate at the Institute of Employment Studies and an Ambassador for Working With Cancer. In January this year Stephen had a recurrence of oesophageal cancer and is now undergoing palliative treatment. Until recently Stephen was Head of Research Development at the IES and prior to that was Managing Director and Director of Research at the Work Foundation. He is also an honorary professor at Lancaster University. He has written extensively about workplace health, wellbeing, absence, motivation and retention. He lives with his family in Brighton.