Does it matter how we talk about illness, death & grief?

“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 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, and social media posts we 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 we are noticing a lot more donning of battle armour than compass reading.

You would 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 we found ourselves asking and looking for answers to.

The earliest written reference to this we 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 that is 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 (McCartney, 2014) 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 via other journalists 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 and colleagues at Lancaster University 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: https://t.co/KScIADr0ts .  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 at el.’s (2015) findings were that language seems to polarise in this area; it is 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 et al. (2016) 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 et al. (2015) 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 Granger (Granger, 2014) 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.” Granger 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 choose 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 for 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 is 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 did not “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

Granger, K. (2014, April 25). 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

 

McCartney, M. (2014). The fight is on: Military metaphors for cancer may harm patients. Retrieved 11 May, 2016, from http://www.bmj.com/content/349/bmj.g5155

 

Lisabadamscom. (2014, 10 October). Re-post of “When I die” – Lisa Bonchek Adams. [Weblog]. Retrieved 8 May 2016, from http://lisabadams.com/2014/10/10/re-post-die/

 

Lyons, A. (2016, March 21). “Hospitals are not a good place to die”. Retrieved 8 May, 2016, from http://www.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. doi: 10.1136/bmjspcare-2014-000785

 

Sontag, S. (1978). Illness as metaphor. United States: Farrar, Straus & Giroux.

 

What do you say to a bereaved person?

I’ve been asked many times what do you say to someone who has been bereaved, my advice is try not to give them platitudes.  It’s easy to say things that we think will help but can actually be quite hurtful. The following are examples of what not to say to someone who is grieving:

  1. ‘I know how you feel’ -No-one knows how anyone feels because you are not them and you are not in their body or mind. This is a simple statement to make and seems obvious but having empathy or sympathy does not mean you know how they feel.   I would suggest asking: ‘How are you feeling?’ instead. Allow them to express themselves if they choose to and respect the fact that they may not want to.
  2. ‘They are in a better place now’ – This is a contentious statement to make. Everyone has their own personal beliefs on what happens after death but even more than that, the griever wants more than anything to have that person back so this statement can be interpreted to mean that the deceased is better off out of the griever’s life. As an alternative, I would suggest you allow the griever to talk about the deceased and their life together.
  3. ‘You can always have more children’ – the last thing a parent who has lost a child will want to think about is having more children. The mere suggestion that they could have more (and potentially they may not be able to conceive again) is insulting and just about the worst thing you could say to them. To a grieving parent this statement can suggest the child that has died can be replaced. No words can express the depth of grief a parent experiences after the death of a child, the loss of their dreams for that child and their lives together so this statement can be incredibly painful and hurtful. Instead the child should be honoured and memorialised and the kindest thing you can do is to talk about the child.
  4. ‘It gets easier after X months/years’ – please see my earlier blog about the myths of the stages of grief.   The emotions experienced after a death should certainly subside with time but grief is not a linear process and time is relative; it’s a real human experience full of complex emotions, thoughts and changes in identity and roles. Life does change and evolve after a bereavement but stating there is a timeline or that it gets ‘easier’ can undermine the significance of the loss to the bereaved. Instead offer support for as long as they need it in whatever way is needed.
  5. ‘’At least….xxxx’ –This really should be taken out of our vocabulary when speaking to a bereaved person.

These are a few of the most common platitudes said to the bereaved and the reasons why they should’nt be used. There are no ‘right’ words to say and sometimes we all say things we wish we had’nt because we can’t always predict the impact of our words on someone who is feeling intense emotions. Conversely avoiding or ignoring a griever because you don’t know what to say can be equally as hurtful. Genuineness and authenticity should not be underestimated and a simple ‘how are you?’ or ‘is there anything I can do?’ can go a long way to helping a griever.

  • ‘*Update -–I wrote the above blog 8 months ago and today I heard about the death of a baby of someone I’m friendly with.  Sadly this person’s baby was born eight months ago when I wrote this and he brought joy & dreams into this family that are now totally devastated.  This is what I said ‘I have no words to say to you that are adequate…I’m so, so sorry for your loss and my heart goes out to you.  I am here for you if you ever want to chat at any time or if I can do anything.’  I will contact this person at regular intervals after the funeral to just ask ‘how are you’ or ‘is there anything I can do?’.  I hope that’s helpful.

#inyourowntime 💙

I’m going to start a campaign and call it In Your Own Time.  Why does society persist in giving timeline expectations of how long we should grieve, or how long it takes for us to ‘get over it’?  What a ridiculous notion that we should ‘get over’ the loss of a loved one. And how absurd that at midnight exactly 6 months after the death, our emotions should turn off- do we have an internal tap to access for that? Wail, cry, sob, laugh, memorialise, yearn or  whatever you want, for as long as you need, and be damned with others’ expectations of you.

Let’s start a revolution to normalise a normal human emotion- #inyourowntime. Vive La Revolution!!

The Anatomy of Grief: Anger

Living With Robyn

Today is not a good day. Today I am blinded by hatred and anger. Today I am upset that this is all I can feel.Today is the first time I’ve come away from a counselling session and felt worse. Working as a therapist I know that sometimes people feel that talking makes things worse. It feels a powerless place to be in when you want to help someone. In that particular moment all you can do is acknowledge the emotions and hope that they will return if and when it feels right and that I can help again.

Today my feelings are about my frustration with myself and this situation, that no one has any answers, that I don’t have the answers. I hate everything and up until now I didn’t ‘hate’ the way I do now.
I hate being so useless & powerless, I hate going to the…

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What on earth do you say to a bereaved mum? It’s simple, STALL

This is the best advice I’ve ever read on how to support and communicate with a grieving parent.

Chasing dragonflies

It can seem like there’s plenty of advice about what not to do when it comes to grief. I’ve written a number of emotional posts about how some people get it ‘wrong’ when talking (or not!) to a beavered parent, such as this one and this one. While my rants are only one element of my complex grief emotion, I am, in the main, very accepting that people can’t be expected to ‘get it right’ all the time when dealing with such a sensitive issue (though I have heard some true howlers!).

But there are times when it’s worth knowing just what bereaved mums like me want from our friends and acquaintances particularly in the early days.

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Welcome

Hello, my name is Caroline, I have been volunteering and working within the world of bereavement and pre-bereavement since 1988 when I experienced my first death.  Since then I have been bereaved many times in many ways and as a ‘Thinking Griever’ have tried to make sense of my own experiences through research, education and training, whilst supporting others too.

I am a bereavement volunteer with a national charity, I facilitate bereavement support groups, I run grief workshops, I am a Trustee for another national charity, deliver training on grief & bereavement, I was commissioned to write a book for JKP on grief and I am researching for a PhD in bereavement.

Please feel free to comment on my posts or if you would  like any further information or signposting please contact me directly & I’ll be happy to help.

Twitter: @TheGriefGeek              Email: Caroline@thegriefgeek.com

Facebook: The Grief Geek           Skype: thegriefgeek

 

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