A chilling report in a diabetes journal this month has revealed that of 33 women diagnosed 20 years ago with ‘brittle diabetes’, only 20 could be traced and of these, 10 had died.
The term ‘brittle diabetes’ is used to describe very unstable diabetes, typically in young women with Type 1. Its features include frequent, lengthy hospital admissions, often for diabetic ketoacidosis. The term has been in use since the 1930s, (shortly after insulin was first discovered and used as a life-saving treatment) and in the last 2 decades of the 20th century, there was a great deal of interest and reporting of the condition. One common conclusion of studies that could not identify a physical reason for the problem was that the people affected must be bringing it on themselves by ‘interfering’ with their treatment, through not giving themselves any or enough insulin. Such assumed behaviour is described as ‘manipulation’.
20 years on, this current report focuses on interviews with the 10 women who were traced. What is striking is that, when asked whether they had manipulated their treatment, 8 of the 10 were adamant that they had not and some still felt extremely angry to have been accused of this. The authors seemed to disregard the claims of these women, citing the fact that some had had relatives present when they were interviewed, whereas those who admitted manipulation were interviewed alone.
What has happened to these still-young women (their average age now is only 42 years) is clearly very serious. They have poor social lives, some have mental health problems, and some still have diabetes that is really difficult to manage. Tragically, some were advised not to have children at the time of their ‘brittle diabetes’, advice which was never revisited as they grew older, resulting in 7 of them not having had a family. Most tragic of all are the 10 who lost their lives, presumably as a result of diabetes itself. There is also the question of those who cannot be traced – what happened to them?
What are we to make of all this? Regardless of the terminology, the research really highlights that some people have more of a struggle than others with their diabetes and so need more support. This study was confined to women because in the 1980s and 90s brittle diabetes was thought to be exclusively an issue for them. Nowadays, it’s known that men often suffer unstable and hard-to-manage diabetes, too – which at least shows some positive change in attitudes about gender differences in our health services. Despite the effort it takes to keep in touch, to keep records and above all be empathic, the outcomes of this example group give a clear message that diabetes services need to invest, perhaps heavily, in the small group of people who experience such difficulties with their diabetes, to literally save their lives. It’s true that there are much better systems and ways of keeping in contact today than there were 20 years ago, which serves to make this task easier – but the commitment to its importance is the most vital ingredient.
Perhaps this sort of research also illuminates, with the advantage of looking back over time, that periods of real difficulty can be overcome and can pass, even though their legacy can bring its own troubles and the need for ongoing support to help with managing these.
However, the main message from this work could be that health professionals must always beware of assumptions and attributions that label and blame people unnecessarily just because what is happening to them and their diabetes defies a medical diagnosis.
Does any of this ring true for you and your experience? Why not add your views to the discussion…
Cartwright, A. et al (2011). Life quality and experience among long term survivors of brittle type 1 diabetes mellitus. Practical Diabetes, 28, 8, 332-335.