A symposium in Cork this weekend will feature medical experts, artists and others who have treated illness in creative ways, writes BRIAN O'CONNELL
An international symposium in University College Cork at the weekend will look at the experience of chronic illness as expressed through the arts and other means.
The Experience of Illness symposium features some of the world’s leading experts in their chosen fields as well as arts practitioners and others who have communicated their illness in a variety of ways. Alongside the symposium, an art exhibition on the same theme runs at the Glucksman Gallery, Cork until next March. While achievements in modern medicine have vastly improved the way we treat many chronic illnesses, communicating and understanding what it feels like to be ill can often be somewhat vague.
One of the symposium speakers is Peter Whorwell, professor of medicine and gastroenterology at the University of Manchester, and a leading expert on irritable bowel syndrome (IBS). Whorwell, along with his wife Dr Helen Carruthers, has been working on better ways for patients to communicate symptoms and pain thresholds of their illnesses, particularly in relation to IBS – an illness many patients feel uncomfortable or embarrassed talking about.
Whorwell will spend part of this talk telling attendees at the symposium about IBS, which he estimates affects eight million people in the UK, but only one million of them are ever actually diagnosed. Of those who are medically treated, many can find it a frustrating and unsatisfactory process, and often not enough time is taken to assist in managing the condition.
Whorwell says he takes time with each of his patients to find out what works best for them in managing their illness. He and his wife have also come up with a series of techniques using colours and images, which allows patients to better communicate.
“As I work in gastroenterology, when I ask patients what do their stools look like, they can get embarrassed, so there is a Bristol stool cart where pictures of different stools are shown to the patient and they can point to one,” he explains. “We’ve taken this a step further and Helen and I came up with a series of images related to how patients perceive symptoms and they are very effective.”
The pair also uses a wheel with 36 colours, with both dark and light shades, and they ask patients to point to the colour that best describes their pain. “We found that people who were anxious and depressed picked dark colours, not surprisingly. From that we realised we have the potential here for a rapid screener for anxiety and depression,” Whorwell says.
Diagnosing depression
“Some of the current questions we ask to diagnose depression are quite intrusive, such as ‘have you ever thought about killing yourself?’ which is very difficult to answer.” The only caveat is that such a screening model would have to be validated in different cultures, as red can be a positive colour in China for example. Colours can have different cultural connotations around the world. Whorwell and Carruthers are also currently trying out their model in schools with younger children who can sometimes find it difficult to articulate illness.
Another speaker who has articulated her own illness is leading bipolar disorder expert, Dr Kay Jamison, a professor of psychiatry from Johns Hopkins University and an acknowledged world expert on mood disorders.
In 1995, Jamison wrote a book entitled An Unquiet Mind, where she admitted that she lived with bipolar disorder. Her admission was regarded as a brave move, and she received broad support from her family and colleagues. She will deliver a talk on the consequences of public disclosure of mental illness, relying on her own experience and the stigma that still surrounds some mental health illnesses. I ask her about how people with bipolar disorder feel about being honest about their condition when applying for a job.
“We are more open, but we are not at the level of acceptance and understanding we should be at,” she says. “Things have changed in the last five to 10 years, but a lot of that is because of advocacy groups. Efforts to destigmatise illnesses accelerate when treatment comes on-stream. If you look at things like cancer, Aids and epilepsy, where much more treatment is available, there is far less stigma these days.”
Open and honest
Jamison feels that practitioners need to be more open and honest when discussing mortality rates in relation to mental illness, and also develop a language similar, she says, to one a cardiologist might use.
Along with talking about how she was perceived after she declared her own illness, Jamison will expand on some of the pioneering research under way in the treatment of bipolar disorder.
Others speaking at the symposium include singer and songwriter Eleanor McEvoy, who will speak about how music can help communicate illness, while Lord David Puttnam will deliver a talk around how Alzheimer’s disease is depicted on film.
On the medical side, Prof Fergus Shanahan from the department of medicine, University College Cork, will speak about what it feels like to be ill, while Dr Aoife Lowney, who specialises in palliative care, will talk about how new media is helping patients communicate their illnesses.
Experience of Illness: Learning from the Arts will be hosted by the Alimentary Pharmabiotic Centre at University College Cork on Friday (5pm-8.30pm) and Saturday, from 9am. It is free, but pre-registration is required. apc.ucc.ie/experienceofillness/