First Published March 8, 2014
I was having my breakfast this morning after having fed the five thousand ducks, birds, bunnies, horses, dog etc. This early today was a spectacularly beautiful, early autumn New England morning with liquid gold sunlight drenching everything in sight, making even the most ordinary of things look voluptuous and extravagant and so gorgeous as to cause my breath to catch in my throat.
Sadly this did not apply to me. As I set out to feed the hungry hordes I was wearing an old, washed-out blue nightie, an old but fave bright pink batik robe, a three quarter length purple coat to protect me from the cool breeze, a pair of short navy socks and old brown sandals. No amount of golden sunlight could redeem this outfit. Nothing polished and shiny happening with this gear.
However back to the breakfast table. My attention was still a bit caught up in why the steps I took to make contact with the rheumatologist had been so difficult, why they required so much determination and effort and why ‘Endurance as Enough of a Goal” and its allied clamorous ideas had secured such a grip on my voice. I was having some toast with vegemite, a cup of English Breakfast tea and reading a book that was very silly, enjoying the nonsense and clever language when out the corner of my eye I caught a glimpse, a flicker of why I had had to struggle so hard to make that phone contact.
The word malingerer wriggled around and plonked itself in front of my eyes and I actually gasped and pushed myself away from its nastiness. This time the breath didn’t catch in my throat, it was knocked out of me. I had to get up, leave the table and go outside again to immerse myself in the light and fresh air. I also said a “wow” to my own reactions. So where to from here I wondered?
In narratively informed therapeutic work, there is the notion that a person can build a platform for further action, a solid place to stand, to jump off from to engage with future possibilities for a preferred lived life. I realised that the platform the ideas that had tried to hijack my attempts for help were built on the notion of malingerer, and it was a solid platform indeed. Malingerer’s accusatory ideas had me needing to try harder to prove that I wasn’t malingering; ideas that others are more deserving of medical care because they are really ill; malingerer’s have no right to make demands on a busy specialist; doubting if my body’s experience of pain was as bad as I thought; the person on the front desk will think I’m faking it; this is an aggressive demand for attention; my language proves I’m histrionic etc., etc. So how did this term/idea/concept of malingering get to be so powerful in my illness experience?
I remembered a critical moment in my therapeutic training when I was attending a workshop run by Hugh Fox, a prominent family therapist. He asked participants the question did we really believe the people who sought our help, did we really believe their understandings of their experience? I remember being quite confronted by this question and realised that perhaps I was very qualified in what I believed of any story related to me in a therapeutic context. In the workshop this led on to a rich discussion of multiple truths, context, politics and power, how these might relate to one another followed by a deconstruction of notions of authenticity and ‘real’ stories. I recall completely changing the way I positioned myself from that point on when I was invited to listen to people’s experiences of events.
This requirement to tell only ‘real’ illness narratives has in its shadows a suggestion that there may be a purpose to deceive or trick the listener. Illness narratives, like any stories we tell of our lived lives, experiences and the meanings we have drawn from them, hold multiple truths and will be simultaneously interpreted by the listener and changed in that process.
I came back inside the house after these rememberings and wondered what had taken me away from my strong connection to and belief in my own illness experience. What happens in the in the cultural and social spaces we live our lives that had helped create this platform for notions of malingering to gain such a solid base. Within medical psychiatry attention is paid to malingering and factitious disorders, these are illness claims (according to this field) based in deception and spoken of as abnormal illness behaviours with a focus on detecting this behaviour. I am not suggesting that this is the primary view taken by medical professionals when working with people’s claims for help, or that there is a malign purpose held in this understanding of factitious illness. However, in much of my study and research women’s health seeking practices have been subject to scrutiny via this lens over many decades. Mothers concerned for their children’s health have often been told they are neurotic and frequently disbelieved, are often treated as if their hold on mental health is precarious and they have been viewed as a potentially abusive parent who is now under tight scrutiny. Women experiencing illness that is specifically related to their femaleness have been routinely dismissed and many medical practices have had women experiencing themselves as mad, “crazy” when their illness has escaped diagnosis and is dismissed as unreal. Women have been disproportionately represented in mental health admissions often premised in health concerns.
Economic imperatives in health care also play a big part in women’s experience of health care spaces.Women who are unable to pay for private medical insurance for themselves and their children only have recourse to hospital emergency services but these services are effected by a government’s requirement of hospitals to weed out the over-users of these services in their need to stay available for real emergencies. In Australia news is regularly made of how both medical professionals and patients have been detected rorting the system, with warnings of the punishments awaiting those who swindle and cheat taxpayers in the misuse of Medicare dollars. Medical treatment of women is also influenced by the power filled determinants of class, education, ethnicity and sexual orientation. These contexts have women users of emergency care in a no win loop, if they complain they are seen as abusive trouble makers, possibly an unfit parent and/or a problem parent, yet if they don’t complain and insist on care for themselves and their children they don’t receive treatment. Mattingly (2008, p.143) maintains that in many situations of women trying to access health care for themselves and their children, the women would assert that in the interests of getting medical help their intransigence fits with ideas of the ‘moral necessity of noncompliance’.
While malingering and factitious illness are considered psychiatric disorders with particular interventions attached, the idea of malingering is a pervasive one in discourses attached to women’s seeking of physical health care for themselves and their children.
I have been thinking about the expectations that the shadow of malingering has played in my thinking about getting help. I think relentless pain that ‘laminates’ (Kahn, 2014) each movement erodes my ability see the bigger influences on my thinking. Getting experiences of pain believed, understood, and worked with as urgent is a very tricky task on the part of the ill person.When some of the contextual subtleties like malingering are shaping of my ideas it is hard to spot them at their work. Perhaps in the writing down of some of the confusions about an illness experience, it makes some space for further understanding to come forward. When others respond to my confusions in an effort to understand my dilemma, hear and believe what I say, that reduces the power of ideas associated with malingering.
I am aware that when I go to a consult with the doctor I try to be reasonably well groomed. In part this is about personal pride about my bodily-self, part is treating the doctor with courtesy but in part it is to influence him in the way he listens to my illness narrative and help requests. It is in part to stand against being silenced by ideas of malingering, of the shadowy threat of having myself constructed as a malingerer, to not only have the doctor believe me , but to help me believe myself.
Enough for now…….I am still trying to unravel this tricky shadow……. lots more deconstructing needed……… anybody got any ideas?
Illness Narratives 