Illness Narratives

First Published March 17, 2014 by marydenese

As with most ideas what seems okay on one day leaves us with so much to be discussed the next day. I think this has often been behind my dissatisfaction with writing. I am better with conversations, they seem to allow for an idea to come forward, be explored, moved around, developed, reshaped and to continue to morph and change. Writing down an idea seems to lock it into a static state, seems to freeze that idea into something concrete and its liveliness seems to pale, get thinner, lose its shimmer.

Last post I mused on the shaping of an illness narrative, how extraneous bits of a story are considered, dropped off, left unsaid or moved into the background or foreground depending on the narrative’s purpose and possible audience. I mused that if this shaped up narrative is witnessed with care, if attention is paid to the smallest of what is made visible, while maintaining a vigilance for what is left unsaid, it can become a rich connection to the next couple of steps in the making of a preferred life and an identity.

I have been thinking about this for a couple of days during which time I had several conversations with people who told me narratives of  debilitating illness and the meanings they had made of their ongoing experience. I realised I wanted to make visible what is absent but implicit in the process of telling a personal illness narrative, and that is that this person and story is situated in a cultural, historical, political and social space.

While roaming around the territory of personal illness narratives, paying attention to the bringing forward of the minutiae of experience and understandings, it is easy for a listener/reader to see this as an individualised experience. To decontextualise such stories as if they are spinning out there in the ether, out there in the stardust, can have us believing that there are no dots to connect beyond the storyteller and story itself.

There is a powerful discourse in Western society built around the notion of the individual, the self-actualised and self-reliant person. The individual is positioned as autonomous, self-determining, significant and separate and the rights of the individual are privileged over any collective interest. This discourse is a somewhat slippery slope for people with illness. Embedded in this idea is the responsibility for individual action in which people with an illness need to demonstrate that they are behaving responsibly and doing all possible to promote their own healing. The focus in medicine is on the illness and the patient, family members and the wider community are not under this critical gaze. This surveillance of the the individual, the sovereign self, requires that the ill person demonstrates compliance with medical regimes and a willing refusal to engaging in any morally questionable practices or forms of chaotic living. If questionable, socially unfavourable behaviours are observed and maintained then access to medical care, the right to make demands on the public health purse is premised  on a requirement to  change these unacceptable personal behaviours and attitudes.

The notion of truth and lies becomes a powerful player in this space of  individual illness where questions of  legitimacy, social skepticism, invitations to ideas of personal failure associated with disqualified or delegitimised illnesses can lead to an increased burden and ‘low levels of social support’ in which ill people question their own lived reality and their connection to preferred identity claims  is left in disarray (Travers & Lawler, 2008.pp. 315-6).

Mattingly (2010, p.41) suggests we need to think of illness and suffering, while intimate and located in the individual, as also being a social experience because health problems are intertwined with political, economic and institutional conditions and with the way power is structured and wielded. Wellness is the default position in Western cultural notions, it equates with ‘normal’, so illness brings with it an invitation to take up ideas of personal failure to be normal, an invitation often hard to refuse.

Illness narratives can name and stand against some of these cultural and social wieldings of power. Illness narratives can also re-position people in their relationships to important others and the territory they are currently navigating, they can be a space for rich rememberings about the part other people have played in their lives and in their community of care, how other people might know them and  their ways of being in the world other than in illness. Illness narratives can bring the past, present and future within reach, where the breach caused by illness can be knit together towards a story of purpose and meaning. To make it the responsibility of the individual to not only experience illness and the peril it brings to cherished identity conclusions, the requirement to do this on his/her own, cuts a person out of  a community of shared lives and the solace of support. For members of the wider community to be cut off from  offering this care is to banish members of that community to a life of diminished connections .

So in my thinking about how we tell/write an illness narrative I am reminded of Mary Rose O’Reilley’s (1998) work in which she suggests “If we can’t tell our story, if it’s caught in our throat, it seems to block our spirit’s longing to participate in the world … such stories linger on the soul like the hungry ghosts of Buddhist legend…”.

It is one thing to have a story to tell, it altogether another issue to have someone willing to listen to that story, and another thing again how we as story-tellers and story-listeners remain alert to the contextual factors that will be  at work shaping and influencing accounts of suffering, pain and possible futures.