First Published Posted on February 15, 2014
My friend Helen and I try to catch up at least once a week. The conversation, which is usually held on the verandah if the weather is kind, is rich, fast and often very complex. We have so much to talk and wonder about that we now come with agenda items. This is a very loosely held idea and the experience of the conversations is a little like living inside a kaleidoscope. Bright, constantly shifting, fascinating and you can identify the patterns if you pay great attention.Fortunately both of us enjoy holding the fragments and finding how to join the dots as the conversation rollicks along.
The reason I am mentioning Helen is twofold, one is to invite the reader to ‘bear with’ and remember that the fragments of previous posts, the dots, will join together at various points somewhere down the conversational tract, and secondly because yesterday Helen sent me two links
(1) https://docs.google.com/file/d/0By9YpwQYD2KwMEY4VDd1R204M3c/preview?pli=1
is a link to a project done about the lives of pioneer women in Tasmania in the late 1800s called “Roses from the Heart”. It is a somewhat gentrified idea of how these women lived and were viewed in white colonial society. The project was widely aired on ABC and SBS TV and was initially quite engaging till one brought some critical thinking to the messages held therein. There were strong messages of how women in that time (and yes, believe it or not, even today) needed to ‘keep themselves nice’.
(2) http://www.convictcreations.com/history/femalefact.htm This link gave a much more realistic view of how the women were viewed and the acts of resistance they engaged in to refuse the critical gaze of society and their refusal to think of themselves as needful moral projects. They definitely weren’t interested in ‘keeping themselves nice’.
Interesting, I hear you say, but ‘so what’ given this is about illness narratives?
Well for starters it reminds me to not gentrify my writing on this site, and it reminded me of some the times I have been invited into ‘staying nice’ when having a disagreement with medical professionals.
Two incidents push themselves forward as I write. One was where I was recently having some cortisone injections into my ankle which were v v painful. The medico doing the task was focused on the ultrasound screen, having at that point failed to even say hello. I swore as the needle went in and he spoke severely to me and said he would have no bad language in his surgery. I was somewhat taken aback and I asked him if he would like to know what it felt like to have this procedure acted out on my body. Avoiding eye contact with me he said he had read all the research and he felt there was little I could tell him that would be new.
The second remembering is a Sydney rheumatologist suggesting I wasn’t trying ‘hard enough’ to stay on one of the trial medicines, even though I had brought to the appointment a full research document I had compiled over the previous six months of the significant negative effects of the medicine. This person, whom I am sure was committed to making a positive difference against the progression of the disease in my body, was so focussed on ‘winning the war’ he had forgotten that the battlefield where this war was being waged was my body and indeed my life. I asked him if he would suggest the need to ‘try harder’ if I was male, given the politics of gender frequently make their way into medical interactions as much as any other sphere. He was somewhat taken aback, had the grace to think about the question and said “no, he would believe the man”, then acknowledged perhaps I had tried enough with this drug. I changed specialists after this exchange.
The requirement for compliance is insidious in medical spaces. The ill person can often find him/her self having to advocate for the believability of their experiences, this believability is often determined by their perceived moral worth, and often requires a justification of lifestyle. The slippery part of this exchange is the politics of the listener is invisible and not up for scrutiny.
It has been researched that children with illnesses get very good at reading the medicalised climate they are currently negotiating and can meet health care professionals expectations of bravery and hope-fullness to ensure sympathetic responses.
The need for compliance, and a desire to meet the listener’s expectations, will significantly shape and invite forward particular sorts of illness narratives from the person experiencing sickness. If power relationships and constraints aren’t addressed whole aspects of the illness experience will be silenced and made invisible. And that leaves us with a ‘so what’, would that be a problem?
Illness Narratives 