Monday, 2 December 2013

Language of Illness

Yesterday I listened to a super interesting podcast about the language of cancer and illness in general. The narrator, who had cancer, hates battle metaphors to describe illness about as much as me and wanted to find something better.

I hate the battle metaphor because illness is complicated and confusing and while I understand that people need a language they can use, I think we need to find something better to talk about it. Nothing that frustrates me more than hearing 'lost their battle with...disease x' or 'bravely fought a good fight but lost to...disease x'. We don't use that to talk about a heart attack (their heart defeated them) or a car accident (they lost their battle with the tree), so why is it ok to use with cancer or other diseases?

I find it makes the person a loser when they die. The 'fight' metaphor might work for some people but for those who are living with a chronic disease, there is no 'win' option. There is no possibility of getting rid of the disease so losing is the only option. (p.s. the disease of the person dies with the body so it is actually more of a stalemate no?). The documentary exploring language around illness seemed like it was made just for me.

The documentary mentioned that the first time the battle metaphor with cancer was publicly used was when President Nixon declared ' a war on cancer' and has been going strong ever since. The narrator talked to several professionals to see if they could come up with a better metaphor to describe illness. His main problem with the terminology is that when he had cancer, he didn't want to be fighting part of his own body and didn't like being told to see it as something to hate. 

A doctor of palliative care was interviewed who said that the fight terminology is often used because it can be a way for family to recognize the struggle the person with cancer has had. She did say the 'living alongside' might be more appropriate as people often 'live with illness' for a long time before it becomes terminal. I do like that idea as it is true that illness is more about 'living with' an illness rather than a full on attack. I see all my medication, aerosol masks, and physiotherapy as something that goes along with having CF rather than a way of attacking the disease so I would be happy with that metaphor. "Died after living with CF" doesn't sound too bad.  

The narrator then talked to a director of marketing for cancer research who thought that using cancer as the 'enemy' in advertising was great. The narrator tried to explain that the cancer had been part of him and he didn't want to declare a civil war on his body. Also, there was nothing he could actually physically do to fight the cancer as he couldn't cut it out himself or give himself chemo. She thought that most people appreciated their ads and saw no problem with it as they were a way to motivate people in keeping with their treatment. I guess it might help some people but I don't think turning cancer into the boogyman is a good approach. (One of their ads was "Cancer is Coming to Get You!!!", is that not terrifying to anyone else?) 

The narrator then talked to a scientist in cancer research who said the metaphor he thought worked best for the actual cancer cells was 'an orchestra' as there are many proteins and enzymes that all work together to create growth and life. Cancer happens when one protein in a cell is 'playing wrong' causing more growth than usual. He said if one member of your orchestra is playing out of tune, you wouldn't go in and bomb it, you would simply re-tune the instrument. Chemo and other treatments could be seen as a way of 're-tuning your cells'. I also like this way of approaching illness. It makes people sound a bit like machines that 'need a tune up' but seeing as I have literally called some of my hospitalizations 'tune ups', I can't find a problem with it. I would be happy with "Died because she was out of tune" (I don't think I will be getting any requests to write obituaries after this). 

I think the best conversation was when the narrator spoke to a theologian who said that when people talk about battling, they use the same terminology as when they are discussing something evil. This has created a connection that cancer or a illness is evil.  But while cancer and illness are unfortunate, they are not evil. They just are. The same way that leaves dying in the fall can be seen as sad or unfortunate but you wouldn't say that it is evil. She said it all comes down to deciding if the illness is something is evil that must be battled at all cost or is it a dying or change that is a part of life that we can grieve? I think this is an excellent perspective. Illness is something that happens and yes it sucks but that doesn't make it inherently wrong.

The narrator decided in the end that the best metaphor for him is to 'kiss his cancer good bye'. Because it recognizes the grieving and loss that happened without making him hate his body. That can be done when the illness is acute but I won't be 'kissing my CF good bye' anytime soon. It was an interesting discussion that I think we all need to have. The language and terminology we use in life is important and it should be just as important when discussing death or illness in general. Let's stop using the battle metaphor and start using something that is less demoralizing. Whether it be 'living with' or 'need a tuning' or something else that I haven't thought of.


Amy Watson said...

I love every part of this. Nothing irritates me more than hearing a " lost the battle"

Mark said...

This is a great post, Allison. I just assumed that people say someone 'lost their fight' with a disease because it was easier for them than saying 'so-and-so died'. It never occurred to me that the euphemism itself might be negative.

And for the record, my vote goes to 'living with'. 'Needing a tuning' makes me sound like an old car. :P