‘Illness is a language, the body is representation and medicine is a political practice.’
Bryan S. Turner, The Body and Society.
The Irritable Bowel Syndrome is still regarded by many doctors, as well as their patients, as a medical mystery. There is no definitive pathology, no obvious cause and no specific treatment. It is a syndrome, an unexplained illness defined and characterised by successive teams of medical opinion leaders in order to rationalise the process of diagnosis and exert control. Doctors, ever short of time, filter the patient’s account, sifting it for any hint that they might have a life threatening disease that requires specific treatment, and then send them for tests to make sure.
The experience of the patient living with the condition is largely ignored in the need for doctors to confirm what it is not rather than what it is. Each is working to a different agenda. Yet it is the patients who are the real experts. Only they can know what it is like to live with an unpredictable illness that turns their bowels to water, bungs them up for days, twists their guts into agonies of pain and blows their belly up like a balloon. Only they can really appreciate the relationship between these symptoms and the context of their life; the way they live it and what has happened. But they are so rarely heard. Communication and mutual understanding is crucial if our appreciation of The Irritable Bowel Syndrome is ever to change.
Last weekend in Sheffield, The IBS Network’s 25th Anniversary Event , IBS -The Patients Perspective, was the first conference where people with IBS took the leading role. Sponsored by Symprove, Alflorex, Silicol Gel and Irwin Mitchell, the event was free to patients with IBS and health care professionals looking after them. Topics were presented by the patients, while the medical experts listened and responded.
Radio Presenter, Sam Bearfoot talked eloquently about the embarrassment and shame of IBS; the alienation and depression; the despair and entrapment. She told how IBS can rob people of any life. She expressed the frustration of having an illness that nobody could understand or manage, the despair of feeling dismissed by the medical profession and alienated by lack of services and toilets. This was not just IBS. There was nothing ‘just’ about it. These were passionate and often moving accounts of a kind of life, lived day in and day out with an unacknowledged illness. Neurogastroenterologist, Doctor Anton Emmanuel listened, explained the limitations of the medical system and even apologised on behalf of doctors for letting people down.
But the day wasn’t just a collective moan about the exigencies of life with IBS, it was a celebration. The 25th anniversary of The IBS Network provided an opportunity for patients to work together with health care professionals to make things better. In the session on diagnosis, ‘What’s in a name?’ Vicky Grant, leader of The Knowing as Healing Project; Storying Sheffield and Professor Peter Whorwell agreed that patients needed to be more informed and the system more compliant. What was needed was not so much a change in name but a change in attitude. Leonie King, a professional nurse tutor, expressed to Professor Alex Ford the need for research relevant to the patient; whether IBS was one disease or several, the relationship between the mind and the gut, why different unexplained illnesses so often co-exist and how close scientists were to finding a cure for IBS. Sabrina Khan, who produces her own video interviews talked with Dr Marion Sloan, a local GP with a special interest in gastroenterology about how patients and doctors can work more effectively together. In the session preceding a demonstration by Joan Ransley on ‘Cooking for the Sensitive Gut, Nick Burnett, a management consultant based in London, recounted to specialist dietitian Marianne Williams how he was able to customise his diet to live with IBS.
The speakers impressed the audience by how all had managed to find their own way to cope with their IBS and leave it behind, so it no longer controlled their lives. They had each made a change. They had been through the trauma of IBS and come out the other side. Sue Frisby, who founded The IBS Network 25 years ago, had moved to Anglesea and founded Chocomama, a business making specialist chocolate, Angie Usher had left the high pressure world of night clubs and celebrity fashion to become a tutor in the expert patient programme, Vicky Grant had found her confidence and her voice leading a group exploring the role of narrative in healing. They had found their own way, seeking out information and adjusting the way they lived their lives, often facilitated, but not directed, by inspirational health care professionals. The latter may include the many who work in the complementary sector, as exemplified by therapist, Linda Booth, founder of Just for Tummies .
Heath services are becoming overwhelmed by the burden of long term medical illnesses. The people with IBS at this meeting and the health care professionals, who look after them, emphasised the need for education and services that facilitated and guided self care. This is more effectively conducted in small groups, co-ordinated by group leaders, either ‘expert’ patients or health care professionals but both trained to facilitate understanding of IBS and self help.
Charities can play a crucial role. The IBS Network has recently reconfigured its IBS Self Care Plan, due to appear on its website in May, and is developing training programmes for IBS group leaders to run their own groups throughout the country. Working together with patients and health care professionals, this initiative can make a big difference to the 12 million people who suffer from IBS in the UK.