Feature: Diabetes stories
11 August 2009. By Penny Bailey
Oral history - eyewitness accounts of past events by the people who experienced them - has a long tradition of being passed down through the generations by word of mouth in the form of stories, myths and song. With today's technology, contemporary history, told by the people who lived it, can be captured for posterity in sound and video recordings.
In his clinic, David Matthews, Professor of Diabetic Medicine at the Oxford Centre for Diabetes, Endocrinology and Metabolism, listened to his patients talking about the many changes in diabetes treatment they'd experienced - and realized their stories constituted an important historical resource which, if not captured permanently now, would eventually be lost forever.
'I felt there was an urgent need to make a record of these memories,' he says. To help him, he enlisted oral historian Helen Lloyd, to interview people who had been diagnosed with diabetes between 1927 and 2006. Those years had seen many changes in diabetes treatment - from the discovery of insulin in the early 1920s, to changes in glucose monitoring, insulin dosage and administration, and recommended diet - that have had significant impacts on patients' lives. It was also a period of significant changes in the health service (including the formation of the NHS in 1948), and the transition of the doctor-patient relationship to one that is increasingly more a partnership.
With a Wellcome Trust History of Medicine Project Grant, Professor Matthews, Helen Lloyd and their team set out to record the experiences of 50 people diagnosed with diabetes and to store them on a dedicated website, where they could be easily accessed by patients, healthcare professionals and anyone interested in either the history of diabetes or the broader social history of the period.
Professor Matthews and Helen Lloyd felt it was important that the interview questions were open-ended to allow freedom of recall, particularly of mundane and routine details, in order to construct as rounded a picture as possible of the lives of these people through the decades.
The length of the interviews also proved crucial to their colour and depth. "In social exchange, you don't get three minutes of continuous talking before someone interrupts with an anecdote of their own," says Professor Matthews. "Helen Lloyd sat down with the interviewees and listened to them for a whole morning or afternoon. This is highly unusual, and was often an emotional experience for the interviewees. They could sit down, relax and reminisce, and someone was listening to them. They recollected in detail much of their daily life, describing what it was like in the kitchen, going to the doctor, and the disadvantages diabetes imposed on their schooling and life."
During the interviews, people with diabetes urged Helen Lloyd to talk to their partners and other family members who had lived alongside the disease for decades, knew all the symptoms of dangerously high or low blood sugar, and had at times saved the diabetic's life by recognising those symptoms before the patient became aware of them. The research team were awarded a second Wellcome Trust Project Grant to interview another 50 people: 25 relatives of people with diabetes, who expand our understanding of the challenges and choices faced by the diabetic, and 25 healthcare professionals working in the field, who reveal how attitudes to the goals and tasks of medicine have changed.
The full unedited recordings are stored in the British Library Sound Archive, and can also be heard on the ‘Diabetes Stories’ website. "We believe that this is the only oral history website in the world that enables users to hear the original unedited recordings, mostly lasting between one and two hours each," says Professor Matthews.
Visitors to the website can choose either to listen to the full recordings, or read summaries or complete word-for-word transcripts of the interviews. If they are after specific information, the site's very effective search engine searches by word, phrase and topic, or they can search the database under various criteria, such as year of birth or diagnosis, education, occupation and so on.
Life with diabetes
During the interviews, people pour out their feelings, as well as describing the size of the needles, sterilization methods and insulin doses. "We hear about the agony of the diagnosis, which was a possible death sentence at the time, the way it affected their lives, the near misses, the people who might have died," says Professor Matthews. "And how appallingly difficult it was being ill and having to pay for medication before the NHS was formed."
People with diabetes recall being so thirsty, prior to diagnosis, that they drank washing up water and bathwater. They recall urine splattering when they boiled it to test their blood sugar, the smell of the surgical spirits they used to sterilize the heavy glass syringe, and having to reuse the same needle, sharpening it on a stone first, because needles were so expensive.
Meanwhile, doctors recall diagnosing children by the smell of acetone on their breath, and attempts to control the disease by imposing strict diets, which the patients invariably broke in a bid to live a normal life. These deviations from what doctors asked them to do are one of the most fascinating insights to emerge from the project. "People made amazing compromises to make the diabetes liveable with," says Professor Matthews. "They had to make difficult pragmatic choices throughout their lives, to make sure they didn't spend their whole life managing diabetes - they managed diabetes in order to live their lives. In those days, physicians told them that food had to be weighed and measured. But over time, they started to cut corners and control their diabetes in less obtrusive ways."
Together, these 100 interviews provide a unique record of what it was like to live with or alongside diabetes during the last century. Since the project began in 2003, several of the interviewees have died. Without this website, their stories would have been lost forever.
To date, 'Diabetes Stories' has had 45 000 visitors, won a University of Oxford IT in Teaching and Learning Award, and been chosen as a Diabetes UK highlight and a Wellcome Trust research highlight. The impact the recordings have already had on people with diabetes and their relatives, historians, medics and journalists is revealed in some of the comments from visitors to the website:
"'Diabetes Stories'…can entrance students and provide the basis for most approaches to problem-based learning." - 'Journal of American Society of Biochemistry and Molecular Biology'
"…if these people could do it, with…such limited resources and knowledge, and manage to cope and live a good and happy life, then surely Becca and I will be fine." - Blog based in Virginia, USA
Top image: Woman using a glucose detecting test strip to monitor her blood sugar levels. Credit: Wellcome Images