As I sat having ‘date night’ as a patient on a 6-bed Ward last night, after an epidural ‘blood patch’ for complications arising from last week’s lumbar puncture, a random visitor decided to enter our (full) ward and engage a woman in conversation.
He was visiting a family member in the next room, but clearly decided he was some kind of self appointed ‘life coach’ and wanted to ‘cheer up’ random strangers in other parts of the Ward. He targeted a 91yo woman, who after patronisingly calling her a ‘young lady’ and commenting on her ‘pretty face’ asked her personal medical questions. After finding out she was to have a hip replacement the next day, then regaled her with stories about how he broke his leg once and that it all turned out fine. He then started wheeling out some fatuous positive affirmations, one gem of which was: ‘I’ve got a three letter word for you, N.O.W’ and the words ‘brave’ and ‘fight’ may have been used.
The nurse assigned to our ward was at my bed, doing my obs, when this man was subjecting the woman to his unsolicited bonhommie. We simultaneously *eye rolled* at his braying and I whispered to her, ‘Does he know her? What about respecting other people’s privacy?’ At that point, he introduced himself to the lone woman & the nurse immediately seized on his name and use it to politely (but firmly) dismiss him from the ward with a sentence. I was in awe of her efforts!
But it did cement something I had been pondering about my recent experiences going ‘public’ with my health issues. Previously (when healthy) and having been a cancer researcher, I was often discomforted by the ‘you have to fight this evil disease’ meme that often surrounds this condition. In fact, I disliked it so much, that given the first opportunity to return to the clear cut world of infectious diseases, I took it!
The ‘Us’ versus ‘Them’ narrative of infectious diseases is one that readily lends it’s self to the ‘battle’ and ‘fighting’ memes. A foreign agent has invaded the body and must be eradicated (with minimal damage to the host and the other ‘good’ guys). It’s an easy narrative to exploit for science communication especially with younger audiences.
However, the use of the ‘brave fighter’ in a ‘battle/war’ meme is used with cancer, autoimmune attack and [insert any non communicable disease with significant morbidity and/or mortality here] is not entirely appropriate. I concede that it may be just me that feels this way, and is probably born of a superior knowledge of the cellular mechanisms of disease and an interest in veracity in science communication. ‘Me’ versus ‘Myself’ maybe more accurate from a cellular perspective, but is not as clear cut as ‘Us’ versus ‘Them’. Fighting your own cellular mechanisms that have gone awry sometime seems a futile ‘battle’ and hence can be isolating for people who understand this.
But as the doyenne of cultural memes, Prof Deb Verhoeven (@bestqualitycrab) pointed out in a twitter conversation on such, the ‘brave fighter’ metaphor ‘implies agency and responsibility where none might exist’. She then pointed me to this book by Susan Sontag on the topic.
Others placing an expectation of ‘warrior’ status on a person trying to deal with a life limiting or life ending condition, for which there may be imperfect or incomplete medical interventions available, can be an extra burden. I have had much support for my recent issues, but if I had a crowd funding campaign attached to a ‘chronic illness bingo’ card and got $5 every time people have used the word ‘brave’ or ‘fighter’ in reference to my good self and my ability to ‘beat’ my issues, I’d be rich!
My training gives me added insight and abilities to make connections whilst reading relevant literature. However, even if I came up with a new treatment in the lab tomorrow, it would still take 20 years to develop into a drug used to treat people with my condition (which is still undetermined) even if it was shown to be safe and efficacious in clinical trials.
But until then, I’ll be focusing my ‘brave fight’ to the existing ‘battle’ to change the current state and federal laws to allow voluntary euthanasia…because I may need the option, sooner than I had originally anticipated.