A year or so ago, having delivered a urine sample showing an unusually high sugar content, I was diagnosed with type 2 diabetes. It was fortuitous, unrelated to the rationale for the test, an unexpected outcome. The first GP I saw said he was reluctant to call it out as diabetes prematurely. He put me on metformin and advised me to rethink and monitor my diet (without, he said, going overboard). He also made me an appointment with the Diabetes Clinic at the practice.
The nurse at the Diabetes Clinic was less timid: ‘Well, you’ve definitely got diabetes!’ I lost a smidgeon of confidence when she measured my height at 5 feet 8 inches. I’m five feet ten/eleven inches and, though now 70, haven’t yet started to shrink into a slighter and more wrinkled version of my former self (it turned out she was on the short side and pretty much having to guess). She weighed me, tickled my feet, took a blood sample and arranged an appointment to have my eyes checked. She was friendly, informative and, when nudged slightly, acknowledged that I would be taking my own treatment decisions. She said that if the blood test results were as expected I wouldn’t hear anything, but if there was cause for concern I would be contacted. I said I would like the results anyway and later called into the practice and the receptionists printed them off for me.
When I revisited the clinic in three months or so (I was rather late in making another appointment) this same nurse informed me that I’d lost weight – I was quite proud of this – and that my sugar levels were down and that all other (associated) test results were ‘normal’ or, in the case of my cholesterol, nearly so. She hankered after speedier progress however. She said she’d discussed my case with the practice GP who specialised in diabetes who wanted to double my daily dose of metformin. She also advised taking statins. I declined the statins and said I’d think about the enhanced dose of metformin. In the event I decided I would go from two metformin tablets a day to three, rather than the four suggested, a decision I kept to myself.
I made another GP appointment to discuss the subsequent three-monthly blood test and was reassured that my blood sugar levels had continued to decline, if slowly.
Eventually, after another blood test, the results of which I was as yet unaware, I was invited to see the GP specialising in diabetes. This was a matter of some concern since I had always been informed that only in the event of ‘a problem’ would I be contacted. I rang for an appointment, but was told that I had to ring – advisedly at 8am – on one of the two days that this GP was at the practice. I thought this unsatisfactory and said so. The practice is local so I called by and was told that as the GP had requested the consultation I could indeed make an appointment then and there. Reading between the lines – always a hazardous pursuit – it seemed that the GP just wanted to check up on me. The blood sugars were again down. I admitted to taking three not four metformin tablets per diem (which made the decline in sugar levels that bit more impressive). She was great and ‘signed me off’ for six months (rather than the normal three). And my eyes are ok.
This is all by way providing a context for what might be characterised as a autoethnographic interlude. So what is the text for today? My concern is the domain of what has been defined sociologically as that of ‘lay perspectives/theories’, and its offspring, ‘lay narratives/stories’, of health and illness. It is a reflexive piece rooted in my own experience of discovering my diabetes/being labelled as ‘a diabetic’. But I am not concerned here with the (1960-1990) sociological highlighting of labelling and coping (I don’t mind the diagnosis and am reconciled to thinking it through).
‘Thinking it through’: that’s the thing. Whilst I respect the initial sociological ethos and thrust to counter the dominance of medical expertise, discourse and practice (and contributed to it via my early study of epilepsy), I am not alone in questioning, and respectfully qualifying, some of the concepts it has spawned. Yes, the emphasis on lifeworld discourses, concepts and suchlike – Habermas would say ‘lifeworld rationalisation’ (a form of resistance to the ‘colonisation’ of the lifeworld by the system, which comprises the economy and state and spills over into medical expertise) – was overdue and was/is fully warranted, and I agree. But this blog offers a few qualifications.
‘Theories’/’perspectives’? Well, why not? It is after all oddly arcane and esoteric to insist that only ‘professionals’, be they doctors, nurses or behavioural or social scientists, can come up with either credible descriptions of what is the case or credible explanations for why it is what it is. And certainly lay persons/non-professionals can and do have perspectives. Jennie Popay and our late colleague, Gareth Williams, long immersed themselves in, and mined, the lifeworld to elicit and represent how lay persons define and explain their situations. And their findings are replete with shrewd and compelling accounts. Moreover these accounts often counter and challenge those of (professional, scientific) vested interests. Lay theories/perspectives can and do comprise a form of lifeworld rationalisation or resistance to system colonisation.
It is the idea of ‘narratives’ or ‘stories’ that is my focus here. Again, there is no denying their salience. In my own study of people with epilepsy living in the community I found that people routinely constructed their own narratives or stories to account for their circumstances, the more so the more marked the absence of ‘satisfactory’ professional accounts (eg the impressively technical diagnosis of ‘idiopathic epilepsy’ common in the 1970s and -80s literally means ‘cause unknown’).
My comments are by way of qualifications to overly straightforward notions of narratives or stories.
- Narratives/stories are typically characterised by disjunctions and anomalies, and often by cognitive dissonance.
Disjunctions, anomalies and cognitive dissonance are rarely absent from professional discourse, and are arguably commonplace in doctor/nurse-patient encounters, that is, when doctors/nurses, constrained by time or limited, even deficient, knowledge or understanding, fall back on distorted or systematically distorted communication. In my role of patient I found – and still find – that there is a gap between my independence of mind (which remains intact) and my enthusiasm and stamina for constructing and owning a coherent and defensible ‘lay’ and therefore conceivably rival narrative/story. I did a few cursory searches on the Internet and read an RCT or two. I read that ‘extreme’ diet/weight loss can lead to the reversal of relevant processes and the removal of the diagnosis, but judged that people who lose a lot of weight quickly tend to put it back on again (maybe NICE should factor that in).
- Perceived level of risk matters.
It is well established that serious ‘disease’ can present innocuously, and that distressing symptoms of ‘illness’ are not necessarily indicative of threatening medical conditions. My ‘reading’ of the diagnosis of type 2 diabetes was filtered through a medically-informed lay sense that while it was important to reduce and monitor my blood sugar level: (a) this was manageable, and (b) if it was managed successfully, potentially serious complications should and would be avoided. People’s sense of risk often departs from the evidence-bases of science. I cannot see why this should not apply to me too, but my career has allowed me to straddle the lay/professional binary or divide, so I may be an unusual case. In any event, I – as it were unconsciously, or at least only semi-reflexively – opted a tad lazily for a ‘wait-and-see’ strategy. My degree of engagement or seriousness was and is a function of the rate of reduction of the blood sugar level. So far so good, so my attentiveness is constrained.
- The salience and ‘bite’ of institutionalised scripts and recipes varies
Versed in Foucault’s ideas of ‘technologies of the self’ and ‘governmentality’, I have a natural antipathy to attempts to control my thinking and behaviour by means of dominant discourses! To this ‘theoretical’ sensitivity might be appended a tendency/vulnerability to ‘oppositional-defiance disorder’ (so I have been told, and Annette has confirmed). In other words, I have no intention of doing as I’m told, instructed or advised unless I can see the (evidence-based) merit of ‘acquiescing’. I am not going to opt for the kind of permanent self-monitoring of health, in the name of ‘being responsible’, that will lead ineluctably to implants allowing for externally scrutiny and diktat. I may have a dodgy habitus.
- Limits of the rational
Concepts of rationality are plural and diverse and this is not the place to offer a philosophical appraisal. The point I want to make is that even people like me, who are committed to science, if one grounded in a reconstructed Enlightenment project, are also, like it or not, more complex, rounded and malleable than we might admit, plus subject to extra-rational inputs like the emotionally-charged elements of habitus, contingency and happenstance. I am human after all. What priority do I accord my diabetes? Ok, I factor it in, but maybe not a lot. Why? It’s not going to kill or even, if I play my cards right, ‘dis-able’ me: (a) ideally, not at all; and (b), a back-up scenario, not imminently. We are back here to lay perceptions of risk. This is not to say that I am unaware of the likely consequences of not taking my metformin tablets and of being seduced by cakes and biscuits (Ive actually not found foregoing the latter tricky).
- The under-estimated potency of context and habit
We mostly run along tram-lines, accept it or not, like ot or not. This is a non-technical way of saying that agency is invariably structured, if never structurally determined. Context and habitboth translate into, and can be represented in terms of, tram-lines. My diabetes was only intrusive and compelling to a point; and for the most part I was and am able to look the other way.
- The social never wraps things up.
Sociology has a specific and restricted reach. I have in my various writings laboured the point that sociologists, much like biologists and psychologists, maybe understandably, reach for the sky. There is no question in my mind however that we can all of us only contribute a few pieces towards a complex – and worse, a dynamic and changing – jigsaw: now you see it, now you don’t. We all dwell in an ‘open system’. It follows that sociologists of health and illness – and remember that I am of their number – should recognise that the narratives and stories about illness people tell to themselves and others are an admix. They have roots across an assortment of levels of reality (actually, from atoms, molecules and so on to the inter-societal range characterised by 21st century anthropology).
- System and lifeworld inter-penetration and permeability
No exchanges, in the real world or in our heads, are ‘pure’ lifeworld or ‘pure’ system. The distinction is analytic and of sociological utility; but it should not be allowed to confuse. Moreover, to complicate matters further, inter-personal negotiation is normal. There needs to be caution therefore in defining theories, narratives or stories as either professional or lay. The former arise out of the lifeworld and can only gain purchase if they if a degree of system-to-lifeworld ‘translatability’ remains. The latter are necessarily permeated, as is ‘lay culture’ in general, by expert professional discourse. This does not mean of course that subversive lifeworld theories, narratives and stories cannot both win coherence and find their way from the what I have called the ‘enabling’ to the ‘protest sectors’ of civil society and thence into the public sphere. My colleagues Gareth Williams, Jennie Popay, Eva Elliott and others have studied and charted just such processes. There also exist a variety of lay campaigning and self-help groups around (mainly type 1) diabetes; but I have had no thoughts of enquiring further. This is probably because I have what I see as a mild affliction, but also because of a long-held and unsociable antipathy to joining groups (an example of psychological mechanisms intruding into the social).
Maybe what these thoughts indicate is that our attempts to make sense of what is happening to us need not cohere into a frame that guides our thoughts and actions. Often we rationalise on the spur of the moment, as it were episode-by-episode, rather than adhere to the rationality of a frame or formula. Moreover, processes like those summed up in the diagnosis of type 2 diabetes – just like those culminating in a diagnosis of epilepsy that I studied in the 1970s – come and go in our lives, are latent much more than manifest. Now and again they are ‘triggered’.
Lay theories of health and illness are probably the exception rather than the rule; and lay narratives and stories are likely subject to hiccups.