First Published: Posted on February 17, 2014
I was walking the dog early this morning and the sky was overcast and grey. I became aware that there were no shadows, given that over the last few weeks of very hot weather the sky has been a blindingly, blisteringly unrelieved blue, and the shadows have been deep and much sought after not only by me but by birds, ducks, rabbits, kangaroos and horses. So while walking in the light of the overcast morning, the shadows that had been so striking during the previous days were now absent but implicit in the grey morning.
This had me thinking about my previous post that commented on the politics and requirements of compliance for patients. Arthur Frank suggests that the experience of ‘being a patient’ is similar to an experience of becoming colonised and being overtaken as medical territory in which it is easy to lose connection with yourself. Sakalys(2000) suggests that the telling of illness narratives is part of the struggle ‘patients’ engage in to refuse the operations of professional institutions to regulate and shape their personhood and its expression.
In the interests of stepping away from expectations to ‘keep myself nice’ and comply, I make a claim here that the formulating and telling of illness narratives can be supported to break away from the expected norms for stories of hope, inspiration and transformation and allow for the telling of experiences of chaos, anger, protest, fragmentation and ambiguity.
In the work of Derrida;White; Epston; Carey, Walther & Russel; the notion of ‘absent but implicit’ has been richly explored both as a concept and for its application in therapeutic practice. The main idea is that “every expression of life is in relation to something else” (White, 2000). These absent expressions, these testaments to what is healed dear and not made visible, these shadows hold a rich content that if brought forward can create a platform for future action and/or support a telling that will shape and make strong a preferred way of being in the world.
So the telling of stories of chaos and fragmentation, the refusal to comply and have personal expression of experiences regulated, in the speaking out against practices that are devaluing and diminishing, we know very quickly that the speaker has experiences and knowledges that value something other than what it is they are refusing to comply with. It is in this territory, if such stories and their meanings are given space and value, that illness narratives can knit together a future that is currently in peril, help identify steps forward toward a future of alternate meanings and purpose.
So my story of complaint and refusal of the acceptability of diminishing medical practices had me thinking about the times I have had the experience of thoughtful and respectful medical care. The “absent but implicit” held in the complaint could only exist because I had had good experiences to contrast them with.
The rheumatologist I currently visit greets me when I enter his room, enquires about me and my day before the problems associated with illness get to take over the conversation, he makes sure his computer screen, on which all sort of details about my wellness or otherwise are outlined, is turned towards me and I am invited to ask questions about whatever I see on the screen. If there is a wait involved re my appointment time, that is explained and options are discussed. My knowledges, understandings and lived experiences of the illness are invited forward to form a meaningful part of the consultation. A family or support person is welcome to attend the appointment with me and I am given a hand-written précis of what was discussed during the visit for future reference and there is easy to access specialist practice nurse who is well informed and extremely helpful if unexpected concerns need to be quickly addressed. Small details are attended to, like the availability of easy, close car parking; the consulting rooms are all on one level; there are chairs of differing heights to accommodate a range of mobility abilities; reading material in the waiting area is current, varied and in good condition and includes relevant information about allied help and support services.
The ‘absent but implicit’ understandings/meanings I drew from the above vignette of acknowledging medical interaction are:
I am greeted; me as a person is of value and worth speaking to, I am more than a presenting disease
I see the computer screen; this is my body and my life, therefore what is written in the notes is available for scrutiny.
My knowledges and understands are invited forward; this is a collaborative effort, medical and personal expertise can be brought to bear on the problem, I have a contribution to make.a
Friends and family welcomed in; it takes a team to stand against the isolating experiences of illness.
Appointment times are carefully managed; my time is valuable as is the medical practitioners, delays will address the importance of both parties.
And so on and so on, all from a walk in the overcast morning.
Illness Narratives 