In March I attended a talk at Exeter University entitled ‘The Emotional Body in Health and Illness’, by Professor Gillian Bendelow, Professor of Sociology at Sussex University.  Prof Bendelow worked as a ward sister in London’s East End, before becoming a psychiatric nurse and then pursuing an academic career in sociology. The subject of her doctoral research was the sociology of pain, especially that related to chronic illness. I was interested to hear about her ideas and hoped this might help me think about Lyme disease from a different perspective.

Prof Bendelow began with the biomedical model of ‘modern’, ‘western’ medicine as epitomised by 19C ‘Germ theory’ which continues to hold sway. The idea of a single cause for a particular disease and the search for a cure led to the discovery of new medicines, including antibiotics. But as people live longer, the reality of chronic disease, possibly with multiple causes and uncertain remedy has emerged. During the 20C medical specialities burgeoned and technology advanced, deconstructing the patient and locating their various diagnostic parameters within the laboratory. In the 21C, limited resources have become stretched due to increasing demand; whilst at the same time medical advances outstrip restricted health budgets. The need for rationing means that in the 21C, patients need to be included as key stake-holders in the debate about uncertainties, rationing and best value in healthcare.

When I stop and think about chronic Lyme disease and the known uncertainties, it seems to me that we are not just struggling with a limited evidence base and understanding; but there seems to be a huge disconnect between the values of 19C germ theory, 20C laboratory medicine and the 21C culture of patient involvement as valid stakeholders in chronic illness. Patients have their own goals and are driven by the necessity to find information and take advice from fellow sufferers. As such, a valid body of patient expertise and an appetite for quality information has evolved over time. At the same time, it feels as if the 20C ‘Fast-Forward’ button propels Lyme disease patients from sick-bed to serology test kit before the truth of their stories can be heard and taken into account. Patients who are aware of the uncertainties and do not accept being processed in this way are vilified as being unscientific or ‘antiscience’, along with those who advocate on their behalf.

Prof Bendelow concluded by saying that she hoped values based medicine would take its place alongside evidence based medicine, opening the door and actively welcoming patient engagement and shared decision making. Within this context, the emotional experience of pain and chronic illness is not only valued but meets with the compassion and empathy it deserves.

Sandra Pearson

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