Medical Matters: Somewhere amid the politics of healthcare and the ongoing debate about improving our health system are patients. Real people, with real stories about their illnesses.
We probably do not hear enough about the experiences of individual patients. Their stories are valuable; they give true insight into the nature of illness and the human condition. At the medical coalface, there is some concern that the narratives of patients are being lost amid welcome technical advances. Whereas before a diagnosis was dependent on teasing out an accurate story from the patient, doctors now have the luxury of high-tech instruments with which to obtain a diagnosis.
A number of influential medical teachers in the past spoke about how important it was to record the actual words of patients. Medical students were questioned about the person's specific words on ward rounds and teaching sessions. You quickly realised that these words could lead to a valid diagnosis even before the patient was examined.
Later in the process, and long after a diagnosis has been made and treatment begun, it is still important to listen to patients and to record their actual words. People continue to construct and deconstruct their understanding of illness. As they come to terms with sickness, or struggle to incorporate a recent change in their condition, patients are trying to construct a life-experience narrative in an effort to make sense of what is happening to their minds and bodies. Doctors must be aware of this process and the constant to and fro across the "narrative bridge" that exists between them and their patients.
Patients' narrative is about to be highlighted by two disparate sources. Arthritis Ireland, the patient advocacy group, will launch both a calendar and an exhibition of photographs, accompanied by patient stories, on World Arthritis Day, October 12th. The photographs are by Irish photographer John Minihan, who is perhaps best known for his collection of photographs of Samuel Beckett. He has spent the summer photographing the 12 winners in a national competition in which people with rheumatoid arthritis (RA) were invited to tell their personal stories.
Here are some of the narratives from the people with RA who entered the competition:
"All the things one takes for granted come to a sudden stop when you get RA. Things like turning on a tap or opening a lid of a jar, to name a few . . . I now paint for pleasure and have received some commission work. This is wonderful because even though I have painful days, I have found something to take my mind off the pain . . . There is still life after RA." - Jenny from Co Meath.
"I have had RA for the past 32 years. I contracted Stills disease (the juvenile form of RA) around the age of nine . . . My teenage years were by far the worst. I tried to hide my arthritis as I just wanted to be like everyone else. I was in constant pain and hiding the truth only made things worse. By my early twenties I accepted it more and started talking about my RA." - Suzanne, Co Cork.
"When the old RA came to me I struggled very hard . . . I have always had good friends. They visited me in the hospital and when I was back at home, they brought me the dinner and got me up for a walk on the sea. In return I was babysitting or gave advice to renovate old houses. I never gave up doing things despite a lot a pains." - Richard, Co Clare.
"Since finding out I have rheumatoid arthritis, there is one boy getting me through my experience. My son Michael. He understands when 'my hands are sore' and when I'm 'not fit to kick a football'. I have taken up fishing with my son and enjoy every minute of it. I can't let rheumatoid arthritis destroy my life - I have to learn to live and adapt to it." - Gerry, Co Monaghan.
Then there is the story of Roberto Campos, whose daughter describes his life in a World Health Organisation (WHO) series of stories about people living with chronic diseases.
Roberto lives in a shanty town on the outskirts of Sao Paulo, Brazil with his seven children and 16 grandchildren. He had his first stroke six years ago (aged 46) and lost his ability to speak after two further strokes four years later. He now depends entirely on his family to survive. "Fortunately his medication and checkups are free but sometimes we just don't have enough money for the bus to take us to the local medical centre," his daughter Noemia says. She carries Roberto in and out of the house so he can get fresh air. "We all wish we could get him a wheelchair to make his life a little easier," she says.
For more on Roberto and other patient stories, see www.who.int/features.
Dr Muiris Houston is pleased hear from readers at mhouston@irish-times.ie but regrets he cannot answer individual queries.
