A few weeks ago I was very lucky to be invited to speak at the annual Diabetes UK Professional conference. I do not have any involvement in Diabetes in my professional life and as a consequence I very much felt like I was attending as a patient, who happened to be a nurse, and the conference almost felt like it had been ‘flipped’ for me; I was an outsider looking in. (Here is the link to our presentation on Social media).
I am more used to being a more integral part of a conference these days and even though on this occasion I was also a speaker it felt very different. I was there in my own time, rather than as a professional, so that was part of it, but it led me to see the conference through a new lens.
I have noticed before how people who have a long term conditions are often referred to by professionals and always had a sense of unease. For example overhearing a doctor refer to ‘the diabetics in the clinic’ makes it sound like those people are a separate species, almost a sub- species, that the professional sees them as separate and different from themselves. This has long led me to think about labelling theory and how it might apply in these contexts.
At the conference I yet again experienced this dissonance around the use of language. People with Diabetes referred to as ‘Diabetics’, ‘Subjects’ (of research), and cohorts. That data points were not really about people but abstract concepts that are of interest. This type of language seems to place these people outside of what everyone else ‘is’ and although labelling theories seem to have fallen out of favour, I can see how certain groups are placed out of what might be considered as ‘normal’.
I am no sociologist and I hesitate to link my observations to any theories – I know someone will pull my thinking apart – but what I do know is that there is both a good part and a negative part of being labelled in this way.
Some people wear ‘Diabetic’ as a badge of honour. I understand why this might be so. It allows people who may be similar to group positively together and own that individual and group identity. Others, like me, see Diabetes as a part of themselves, but perhaps not the most significant, and prefer to be seen as person first (who happens to have x or y condition). There are many conditions where these language labels are used: Diabetic, Epileptic, Schizophrenic, Bulimic, Anorexic…..
Those who say labels don’t matter and its just the language we use are often people who have not experienced any stigma associated with a condition. My experiences are low level but nontheless present. When I was younger I never had to explain that I have T1 Diabetes, the assumption was I was young so I would be ‘one of those diabetics who injected’. Later in my life things changed, as a rotund middle aged woman, now I have actually been told ‘You should stay thin and then you wouldn’t be a Diabetic’. Other low level stigma includes conversations like ‘You shouldn’t be eating that (cake, chocolate, etc) should you?’
I feel labels don’t help, in fact they get in the way of empathetic relationships, they create a perception of what matters to the individual based on their condition. As Brene Brown says empathy is feeling ‘with’ the person and not applying judgements. I strongly believe that empathy should be person focussed not condition focussed. I am, however, expressing a view that may not be popular and others may challenge. In a study by Ogden and Parkes (2013) they found no difference in the beliefs of those with and without Diabetes using the word ‘Diabetic’ vs ‘Person with Diabetes’ although they do recognise that their methods may have impacted the outcome as they used a scenario based assessment to test their theory. I could probably have told them what they would find using this method. There is more evidence in mental health that labels are perceived as unacceptable – I think there is more debate in this area and also a deeper understanding of the impact of stigma.
I know that not everyone holds my view but I believe #labelsr4jamjars – we should always say the person first ‘Annie with Diabetes’. A long time ago, when I was a ward sister, we had labels we applied to beds to label the person in them ‘Diabetic’ in red letters. I didn’t like it even then and I removed these from the ward and talked to staff about how I expected everyone to know who happened to have diabetes and that the labels would not be reinstated.
As an anonymous person with diabetes at the conference I did wonder how far we had moved on. Looking at it from the outside, through a new lens, it did feel like we still had a long way to go.
Thank you to Dorcas Lambert for the inspiration and courage to write this blog – its been brewing for a while – here is her blog on the same.
‘A diabetic’ versus ‘a person with diabetes’: the impact of language on beliefs about diabetes’ Ogden J, Parkes K, (2013) Eur Diabetes Nursing 2013; 10 (3): 80-85