A diagnosis of cancer can be incredibly hard on your mental health or that of your loved ones. In this piece, Caroline Lloyd describes how we speak in metaphors about illness to help us understand what is happening to us on a deeper level; and yet for some, these metaphors can polarise.
“When I die tell the world what happened.
Plain and simple.
No euphemisms, no flowery language, no metaphors.”
Immortal words written by Lisa Bonchek Adams (Lisabadamscom, 2014) before she died from breast cancer.
The terminology around grief, death and dying led to a recent conversation I had about the language we use to refer to cancer patients. This in turn has led to copious amounts of reading on this subject to try to determine if language is helpful or detrimental during illnesses, death and grieving. All of the newspaper articles, news items & social media posts I have seen have one thing in common: we use our language as metaphors to refer to these events, more specifically in ‘war’ metaphors and /or ‘journey’ metaphors. Although I’m noticing a lot more donning of battle armour than compass reading.
You’d have to be avoiding all social media or conventional media not to be aware that the words ‘battle’, ‘fight’, ‘lost’, ‘won’ etc. have become synonymous with the experience of cancer. Do they originate from the patients, carers, Health Care Professionals or Journalists? And does it matter who uses the labels; are they useful or detrimental. These are the questions I found myself asking and looking for answers to.
The earliest written reference to this I could find was with regards to Susan Sontag who raised this issue in her book Illness as Metaphor in 1978 (Sontag, 1978). In the book she challenged the prevailing attitude of patient control i.e. whether the patient had control over whether they became sick or could ‘battle’ an illness. Her view was that illness is a biological condition and using metaphors to refer to the disease had a shameful or discouraging effect on patients. As a cancer patient herself at that time, the notion that patients had some control over whether they developed certain diseases or had control over whether the treatment would work or not was offensive to her. Following on from this in 1999, the late journalist John Diamond was referred to in the BMJ and quoted as saying “My antipathy to the language of battles and fights has….everything to do with a hatred of the sort of morality which says that only those who fight hard against their cancer survive it or deserve to survive it – the corollary being that those who lose the fight deserve to do so.” So if the evidence points to respected journalists historically opposing such ‘battle’ language, how did it become endemic within society? Did it slowly creep in, or can we answer this question by looking at whether patients, their friends and family (carers) and healthcare professions (HCP) find the use of metaphors surrounding cancer useful in any way.
On a mission to answer these questions is Professor Elena Semino (Lancsacuk, 2016) and colleagues who have spent the last few years studying the frequency of use of metaphors with regards to cancer and how they affect different people of the three groups identified above; patients, carers and HCP. Her video lecture explaining the study and the results can be found here. They used sophisticated software to analyse 1.5 million words gathered from open social media sites and interviews and confirmed that the two most common metaphors used were what she termed ‘violence’ and ‘journey’. We are all familiar with ‘violence’ words – battling, winning, losing, fighting, war on cancer etc. ‘Journey’ words and phrases are also familiar – ‘it’s the start of a long journey’, ‘I’m on the road to recovery’ etc. Semino’s findings were that language seems to polarise in this area; it’s either hated or loved.
On the positive side, it is used by fundraisers such as Cancer Research UK who use journey metaphors such as ‘Race for Life’ to inspire and encourage and Macmillan who use ‘Survivorship’ to motivate patients who have ‘beaten’ their cancer. Semino also found that patients use journey metaphors ‘in a very empowering way’ and violence metaphors are used by patients to find ‘purpose’ and ‘meaning’ by defining themselves as ‘fighters’.
Conversely Semino found they can also have a detrimental effect. Some people find they ‘don’t want to be on a road they don’t know how to navigate’ and how do people with cancer battle with themselves? Cancer patient Kate Grainger (Grainger, 2016) wrote in The Guardian newspaper; ‘“She lost her brave fight.” If anyone mutters those words after my death, wherever I am, I will curse them… I do not want to feel a failure about something beyond my control.’ Grainger is a medical doctor and was diagnosed with terminal cancer prior to writing this article which makes you wonder how someone who knows they will die from an incurable disease can ‘fight’ it? I recall one of my friends vowing to ‘fight all the way’ when he was diagnosed with bowel cancer a few years ago but then again he was an ex member of the British army so the terminology was part of his identity. The ‘fighting’ talk slowly waned as his cancer metastasised and it was clear that he was terminally ill and in retrospect I wonder if he ever felt a ‘failure’ for not ‘beating’ it or if he ended his days satisfied that he had accepted any appropriate treatment that could have helped him and was accepting of his situation.
My point here is; however you chose to label yourself or what language you choose to use with regards to your body and your life is just that: your choice. If you find battle or journey statements and metaphors helpful to deal with the psychological effects of being diagnosed and treated with cancer surely we should respect that. However I think if we impose it on someone that’s where the problems arise: we are imposing our expectations on them. That they will ‘battle’, that they will ‘win’ as if somehow it’s within their control. Contributing to making someone feel guilty or a failure is disempowering and surely unethical.
My conclusion is that there is the illusion of control with cancer if we use metaphors and perhaps that’s what someone needs in order to psychologically cope with the diagnosis of what used to be referred to as ‘The Big C’. Does the thought of our impending death suddenly become a battle that needs to be fought? We are one step closer to death every day whether healthy or not and we need to accept that as individuals and society.
If our loved one ‘battles’ and ‘loses’ their ‘fight’ with cancer we are left to grieve their death. With metaphoric expression there is the possibility that families and friends will be left wondering if their loved one didn’t ‘fight’ hard enough or if they could have done more to help them. This can potentially lead to further distress, anger and guilt.
My view is that a good death leads to good grief, and that can only happen if we discuss end of life issues open and honestly in whatever language is appropriate for each individual. As End-of-life doula Anna Lyons (Lyons, 2016) says ‘Death is not the loss of a battle. Death is a natural part of life.’
References
Mccartney, M. (2014). Http://wwwbmjcom/content/349/bmjg5155. Retrieved 11 May, 2016, from bmj.com/content/349/bmj.g5155
Granger, K. (2016). Having cancer is not a fight or a battle. Retrieved 8 May, 2016, from http://www.theguardian.com/society/2014/apr/25/having-cancer-not-fight-or-battle
Lisabadamscom. (2014, 10 October 2014). Re-post of “When I die” – Lisa Bonchek Adams. [Weblog]. Retrieved 8 May 2016, from lisabadams.com/2014/10/10/re-post-die
Lyons, A. (2016). “Hospitals are not a good place to die”. Retrieved 8 May, 2016, from netdoctor.co.uk/healthy-living/news/a26269/hospitals-are-not-a-place-to-die
Semino, E., Demjen, Z., Demmen, J., Koller, V., Payne, S., Hardie, A., & Rayson, P. (2015). The online use of Violence and Journey metaphors by patients with cancer, as compared with health professionals: a mixed methods study. BMJ Supportive and Palliative Care. 10.1136/bmjspcare-2014-000785
Sontag, S. (1978). Illness as Metaphor. United States: Farrar, Straus & Giroux.