IBS: fact or fiction?

Dame Hilary Mantel

By the nineteen nineties, I had been conducting clinical research for 20 years. I knew my trade, had published several hundred papers in academic journals and was in demand on the lecture circuit. I used to joke that I travelled the world on diarrhoea. But I was becoming bored of it all. The university was not interested in research carried out on a shoe string budget using patients or volunteers, even though it produced a steady stream of papers. I was told by the Dean that I needed to apply for more grants and conduct large scale collaborative projects in order to raise money. That afternoon, all the fun went out of it. I could no longer follow my curiosity. Intuition and creativity went by the board. Funding bodies needed to be sure that the study would work before they would award a grant and then if I was successful, I would have to work on the same experiment for months if not years. Either I became a university apparatchik or I needed to leave. So when the Centre for Psychotherapeutic Studies advertised for students for their Masters Course in Psychoanalytical Psychotherapy, I applied and, to my delight, was accepted. I become a student again and was intrigued by a radically different model of academic thought.

Although I kept in touch with trends in nutritional and physiological research into IBS, my focus changed. I became interested in the context and meaning of my patients’ narratives and how these related to their symptoms and the course of their illness. It was like exploring a new continent; my imagination expanded from the nuts and bolts of basic science to embrace the ‘humanity’ of illness. This didn’t always go down well with my colleagues. My lectures on ‘the circuit’ were greeted with scepticism and disbelief. In Chicago, a senior psychiatrist in the audience announced that they had stopped believing in psychoanalysis in the nineteen fifties, while at a meeting in Boston a few months later, a close colleague in physiology uttered the withering comment, ‘what a pity to spoil a good story with hard facts’. He never explained what the facts were, but I was mortified. Over the next year, invitations to speak dwindled to a trickle, but I was not too dismayed;   I had found my spiritual home.

I have recently been inspired by Dame Hilary Mantel, this year’s BBC Reith lecturer. As the two-time winner of the Booker Prize for Fiction for her novels on Thomas Cromwell and the Tudors, her defence of historical fiction seemed to speak to the narratives of illness.

In her first lecture, Mantel explained how historians confine themselves to the evidence of recorded facts, but the latter is often sparse, consisting of a few documents, artefacts and word of mouth filtered through centuries of discourse. Facts are not truth, though they are part of it, information is never knowledge and the past is not just the historical record. ‘From history, we know what the main characters do, but we can’t with any certainty know what they think or feel.’ Historical fiction, she claimed, does not so much report the facts about the past, it interprets them and seeks out the inconsistencies, gaps, erasures and silences in the historical record in order to discern the struggles and motives that might lie behind the recorded events.  A novelist can’t resist an unexplored angle.

But it is a mistake to think that the historian’s trade is just a matter of stockpiling facts. Even the driest, most data-driven historical research involves an element of interpretation.  That’s why ‘it is possible for competent historians to come to radically different conclusions on the basis of the same evidence’.  Both the historian and the historical novelist rely on the evidence and they both use their imagination to interpret it, but the novelist uses her creative skills to get inside her characters and describe how they might think and act given the historical context.  ‘The novelist works away at the point where what is enacted meets what is dreamed, where politics meets psychology, where private and public meet.’ Her characters are not cardboard cut-outs from an illustrated history book, they are living, thinking people. ‘The novelist puts the past into action, frees the people from the archive and lets them run about’. That’s what breathes life into historical fiction.  It was the nineteenth century historian Lord Macauley, who said that, ‘History has to be burned into the imagination before it can be received by the reason.’

The novelist does not just make things up, she creates a narrative out of the facts; a kind of truth, cast in symbol and metaphor. Materially, the characters died a long time ago, but spiritually, they still exist.  Historical fiction says ‘consider this as a possible interpretation of why this happened’.  ‘It supplements the work of historians by offering insight.  So what is more instructive, the sterile unexplained facts of the historical record or a plausible living story?

It seems to me that the science of IBS is a bit like the historical record. The evidence is sketchy and weak. We don’t even have good data to justify the definition of IBS or the diagnostic criteria. All we have is a decision by opinion leaders to use the term IBS to describe a group of otherwise unexplained symptoms that would seem to emanate from irritation or dysfunction of the large bowel. Subsequent research has merely compounded this diagnostic inadequacy by failing to discover a definite cause or a specific treatment.  There have been numerous candidates: Small Intestinal Bacterial Overgrowth is  controversial but may account up to 30% of patients diagnosed with IBS in the United States; bile acid malabsorption can certainly cause diarrhoea but is probably secondary to rapid small bowel transit, which is a feature of IBS-diarrhoea; about 10% of people develop IBS after an attack of gastroenteritis; other cases are instigated by trauma; some but not all patients have a sensitive bowel. And as far as treatment is concerned, the low FODMAP diet can help some patients with bloating and diarrhoea but only if strictly monitored by a FODMAP trained dietitian, some probiotics may help some of patients some of the time, and if you have to conduct trials on hundreds of patients to prove that a drug has a marginal benefit over an ‘inactive’ placebo, then what value their efficacy?  GPs acknowledge that, like historical fiction, diagnosis and management of IBS is more a case of trying to make a plausible guess.

Like historians, competent clinical researchers in the field of IBS can come to widely different conclusions from the same body of evidence.  In contrast, individual illness narratives  often reveal aspects of a patients life that coincide with the onset of the illness and account for the particular symptoms. Only by listening to these stories can we get to know what their illness feels like and what makes it feel better.  Moreover, the realisation that patients can respond to a variety of charismatic and complementary treatments of dubious ‘scientific’ efficacy, suggests that belief is a key factor. So what, we might ask, is more ‘truthful’ and valuable, the paucity of sterile scientific data or the living associations with the thoughts and actions of individual patients?

Medical sociologist, Bryan Turner, once wrote in his book ‘The Body and Society’ that ‘Illness is a language, the body is representation and medicine is political practice’. In my current role as a psychotherapist and writer, I learn my patients’ language and try to help them understand what their illness represents in the context of their personal history and the way they run their life and not just the received ‘wisdom’ of scientific evidence.