What we tell ourselves – and why doctors should listen

“I never realised how much I wanted to live until I thought I was going to die,” artist Tracey Emin.

Medical doctors could and should try to engage at a reasonably deep level with patients’ storylines or internal narratives about their health. Doing so should open up possibilities for practitioners and lead to better patient health outcomes. For example, to help understand better what treatment is likely to work, what help or information patients might need in recovering, and in understanding why certain treatments don’t appear to be working or at least not at a speed expected by the patient.

For most adults construct in some form a story or narrative about themselves which, consciously or not, leads us to have an idea about how we are doing or want to do in our lives as a parent, as a partner, as a work colleague and so on. Similarly, we construct a picture of some sort about our health and, in these times increasingly, of our fitness (however poorly defined).

But medical interventions which engage with these personal narratives tend to receive short shrift in today’s medical literature, at least in modern Western societies. Narrative – based medicine is generally contrasted, unfavourably, with evidence – based medicine i.e. the ‘what works’ model. Yet in my experience things are not so simple.  After a number of hospital stays I’ve become very aware of the opportunities that might be being missed by an uncritical adoption of a purely unreflective use of evidence-based medicine.

“Recovery is now widely acknowledged as the dominant approach to the management of mental distress and illness in government, third-sector and some peer-support contexts across the United Kingdom and elsewhere in the Anglophone Global North. Although narrative has long been recognised in practice and in policy as a key “technology of recovery,” there has been little critical investigation of how recovery narratives are constituted and mobilised, and with what consequences.”

(‘The Recovery Narrative: Politics and Possibilities of a Genre’  Woods, Hart and Spandler 2019.)

Our internal health narratives

People’s internal health stories and personal narratives, I contend, are likely to gain greater internal prominence during and shortly after periods of Illness, particularly serious illness. Although some people can or are forced by circumstance to ignore promptings to attend to their personal narrative, for example, by being very busy (or perceiving themselves as very busy) or perhaps by submerging the personal within a highly structured or pressurised career environment. For most of us this is not a realistic option. So, in the end, most of us go along hoping and trusting that what we are engaged in day by day in some way fits in with our personal aspirations and beliefs

However, the experience of illness tends to throw our internal narratives about our health and how we perceive ourselves into sharp relief. For both good and not so good reasons I think that most of us make a very clear distinction between being well and being sick. And, if the illness is serious, being sick tends to take over all or most of our personal narratives. This is reinforced when we are dealing with the apparatus of illness as exemplified by the hospital.

For hospitals are whole worlds in and of themselves, they are institutions with their own languages and meanings, there are right and wrong ways of doing things, and so on. So we go from ‘seeing the doctor’ to ‘being under the doctor’.  In many cases, going into hospital can deliver a serious shock to ourselves and our health stories.  It can feel like we have suddenly gone from what we might see as `the world of the well’ to the `world of the ill’, in which former certainties and beliefs are undermined or severely shaken. This can significantly affect how we deal with information about our health and react to medical care and interventions.

I’ve seen and heard patients who have clearly been so frightened that, in their view, it was better not to engage in any way with medical staff or indeed to engage with their illness in any meaningful way that could be discerned (often termed as  ‘hard to reach’ patients). This may have been because of fear of the condition, or because of their previous medical experiences or those of a relative or friend.  Or perhaps it was because of an irrational, but very understandable, feeling that by not engaging with what was happening it might go away.  This made it more difficult for medical and nursing staff to help them.  But, if there were more recognition and understanding of the personal narratives, then there should be a better chance of helping someone to engage with their treatment.  

For example, in one of the hospitals in which I’ve spent time, one of the inpatients – who had a serious and long term alcohol problem and who was in for medical treatment combined with a detox (not his first) – clearly delighted in obstructing doctors’ efforts to help him to moderate or reduce his dependence on alcohol. His narrative appeared to involve him somehow ‘beating’ the medical staffs who were trying to help him.  Meanwhile another inpatient, who had a terminal condition, constructed an involved storyline about the near future and his personal future. But these constructs did not reflect in any way the seriousness of his health problems and the most likely outcomes.  This made it more difficult for hospital staff to know best to approach him.

And, for my part, I’m aware that during my various hospital stays I would have welcomed a clearer ‘steer’ about my treatments and the effects on my health in general from my doctors. But too often I felt lost and adrift on a personal story level. So I feel that recovery from a serious illness needs a partnership approach involving both doctors and patients. We cannot deal successfully with such medical issues by working on them by ourselves or, if we do, I suspect that we don’t tend to do as well.

I would really like doctors to recognise that I have a personal narrative or understanding about myself and my health – a ‘hinterland’ – and I am not solely a set of symptoms.  More specifically, medical doctors should not regard it as strange in any way that I should be creating and amending my own health and sickness story whilst seriously ill and undergoing medical treatment. I cite as backup the persistence of the family doctor myth, where he or she ‘automatically’ knows what ails the patient and what they need in order to recover well.

Is this demand of doctors unreasonable? I appreciate that modern medicine is far less likely to harm me significantly than in times past, but we might have lost what one might term a holistic approach to patient care and the possibilities of personalised care.  Also NBM {Narratives Based Medicine) still struggles in the medical literature to get a wide hearing, and there is still a supposed dichotomy between evidence based medicine and NBM. In my view this separation is not always right or useful.

“Whatever else this experience has been, it’s been an education. But what exactly have I learned? To begin with, that any glib answer to the question misses the core of the experience – the complex dialectic of being ill, which is a social as well as physical condition. For me, the experience has led to a heightened awareness of both our intricate dependence on others and our deep-seated need for independence.”

(What I’ve learned from cancer, Mike Marqusee, The Guardian, 27 July 2012)

(I still miss you old friend and comrade)