This observation has, in part, motivated Monash Rural Health researcher Dr Marg Simmons to embark on a research project which will explore stories of illness from patients or health professionals. She hopes her work will help to provide an opportunity for them to make sense of their own stories, in their own way.
As part of the research she is asking for anyone who feels they have an illness story to share, to consider participating in an anonymous survey which will explore their story.
Dr Simmons, who is based at the Monash Rural Health Churchill teaching site, teaches Monash medical students about the social and community aspects of health. In April she will present at a conference at the Monash Prato Centre in Italy, focusing on the ‘illness narrative’ – how these stories are told, what language is used and how various stories of illness overlap or differ.
“I think when we are ill it can be difficult to tell our illness story,” Dr Simmons said. “We tend to tell it in certain ways, for example using military metaphors like ‘the battle’ or ‘we are targeting this’ or ‘we will win this fight.’”
The local researcher believes that while this sort of commonly accepted language might be readily available for health professionals and patients, it could potentially alienate those experiencing illness, leaving them feeling like they are “somehow ‘losing the battle’ or ‘not fighting the good fight’.”
“I am interested in providing people who may not feel like they have had the space to tell their story, in their own way, a chance to express that,” Dr Simmons explained.
“I want to hear about how people cope with changes to their bodies, how they create a new story about themselves, what language they use,” she said, adding “I want to provide people with an opportunity to tell a story they may not have been able to tell others.”
Referring to the cultural narratives that often “shape us” in the face of illness, Dr Simmons said adopting certain narratives can also “limit us and there may be other more useful forms of language through which we tell our stories that can be explored”.
Dr Simmons hopes her research and the qualitative data collected through her survey – open to anyone who has an experience of illness whether they are a patient or professional – will help to better inform health professionals about the use of language around illness.
“I hope this work will add to the body of knowledge which can help with translating the illness experience into important stories that highlight the connections and similarities in those stories as well as the challenges and disruptions that illness brings to people’s lived experience to hopefully make a difference for patients” The Prato conference theme is ‘Broken Narratives and the Lived Body’. Its focus on the disruption that illness always imposes on someone’s personal story was one of particular interest to Dr Simmons.
Anyone interested in participating in a survey as part of Dr Simmons’ research is asked to go to the online survey. The survey takes about 30 minutes to complete.
For those who would prefer to tell their story to Dr Simmons – or for anyone seeking more information – please phone (03) 5122 7527 or email firstname.lastname@example.org