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
Interesting blog Anne one with obvious personal resonance which comes though. I feel labelling is a lazy way to communicate with patients and a shows a lack of respect to them as individuals.
#labelsr4jamjars | Health Blog Round-up | Scoo...
Highlights my major issue and struggle with my diagnosis (*T2* Diabetes) . Rant ahoy.
Since my diagnosis in early August 2000, I feel I have always been seen as a ‘Diabetic’ first and a person and sufferer of other illnesses second. The whole terminology around Diabetes is stigmatizing and to be honest often, in my experience, reduces the ‘diabetic’ to the level of a child / incompetent adult in the eyes of professionals.
Even the words that are used in treatment – you’re well controlled or not well controlled imply that the course of the disease (chronic, progressive) is down to the patient. QOF funding of Diabetes in primary care has contributed to this – if you are ‘off target’ (quoted often to me) then you are medicated whether you wish to or not. Because of personal issues I missed several appointments to the Diabetic clinic in my GP practice (always cancelled never DNA’d) – I eventually got a letter asking me to sign off them looking after my diabetes (so I wouldn’t affect their qif figures) – no phone call asking me if there was a problem that they could help with so I could get to the appointment or schedule it differently .
If my HBA1C is up, I am asked if I have been ‘naughty’ . Not once in 15 years of care have I ever been asked why I have issues with food. But then I’m T2- lazy, drink too much and eat too much enough said . (I really do think that there could be some exploration of the definition of T2 diabetes because I don’t think that it really is an accurate description of the complex syndrome).
I ended up being in hospital on IV antibiotics because a walk in centre nurse was more concerned about my slightly raised BM (30 mins after food) than the facial abcess that I had come for help with. But you know I’m a diabetic so diabetes comes first (obviously).
I hate it that when in hospital, control over BM’s etc is taken away from me and I’m not nil by mouth and I can feel a hypo coming on and I tell nurses that I’m hypo, that no food is brought – to the extent that I have to buy sweets off the ward trolley to get my blood levels back up. I also had the reverse – my bm was slightly low 4.5 or something (I didn’t do the testing of course) that I had to drink 200 mls of lucozade becuase my blood sugar was falling. Wasn’t tested again for 6 + hours.
Labels are patronising. I have a problem with my glucose and cardivascular system, if that is out of whack it could be due to several things but those questions are never asked – the whole professional implication of asking patients if they’ve been naughty or cheating or even the ‘fact’ that people are lazy and fat so they get diabetes (ie their own ‘fault’) are just so wrong.
I hate going for diabetic checks and avoid them as long as possible – got bloods and probable check up next week (only really triggered by a threat from the practice to withold medication if \I don’t.). Probably end up feeling crap after it as well surprise, surprise, I’m not perfect and have a whole slieu of other problems to deal with – but that doesn’t matter as the only thing I should be worrying about is my diabetes.
In essence I’m a person not a Diabetic and until the whole person is treated then diabetic care won’t move forward.
This really resonated with me Annie. Having brought up a child who is considered “highly functioning autistic/aspergers” I also have a view on the “labelling system”. Having gone through very very dark days all the way through primary school we were at the point of him moving to mainstream high school. I was at a loss whether to get him “labelled” to ensure he had extra support and teachers “looked out for him”…but realised the label could cause great stigma forgo throughout his high school life.
A very sensible and wise GP said to me that aspergers was just a label and ***** was just ****** and if we could all just accept him as *****, complete with his quirks and his personality, rather than as a label , she felt this would help him get through high school more easily. I took her advice… We have had lots of bumps along the way, it took many years of high school for my son to find friends but he is now in his final year of A levels and set to do well, bit of luck and he should get 3 x As. He has a group of friends, has had girlfriends and is just one of the gang, albeit with his unique personality. The other students have accepted him with all his oddities and personality traits and he has “never worn the label” . That GP gave me such good advice. So a different story , but still a story about labels………
Hi Sam. Thanks for sharing your story. I, as you can tell, feel labels are destructive. I’m glad your son is doing well. I think you did a good thing and I feel sure with your love and support he will continue to fly, minus labels. Xxx
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#LanguageMatters – anniecoops