50 Shades of Diabetes?

There. That got your attention.  Now. This blog is about the language healthcare professionals and people with diabetes use when talking about the diabetes human condition.

Okay, maybe I’m not playing fair.  If you feel cheated and only followed my blog-link looking for something a little more… well, prurient, then rest assured.  I will attempt to satisfy you… …later… …when I’m good and ready.

See, I’m good at this.  Maybe such power-trips come as second nature to healthcare professionals?

So to my thesis: The language spoken in diabetes care is often warlike, angry and designed to raise heckles. Aggressive targets. Tight control. Patient compliance. Medication adherence.  Adjectives such as strict, rigid & intense.  To those of us of a certain age, it might conjure up memories of Mrs Thatcher’s Cabinet ministers’ visits to Soho Miss Whiplash-types.

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Realising the importance of the language we choose in building doctor-patient relationships, it was interesting to look back at presentations I made in the past, this extract is from a PowerPoint made in 2007.

Back then, I began to see that choosing the wrong kind of language can distance our patients and even worse, cause us to see them as blame-worthy & as scapegoats:  “none of them take their tablets”, “they all say, ‘It’s not for what I eat’ “…  just two examples of the attitudes I encounter from health care workers (I won’t say professionals).

Recently I’ve been spending time with the doc, diabetes online community.  It’s been truly revealing,  a window into the lives of people with diabetes. I feel a sense of privilege to be let in.  Yet I was taken aback to find how commonly people with diabetes themselves use negative language to describe their feelings and behaviours. “On the naughty step”.  “Sometimes I cheat”.  “Follow the rules”.  “Like a trip to the headmaster’s study”.  What I have found especially surprising is how this jarrs with their otherwise confident, upbeat & engaged online persona.

Perhaps this becomes ingrained in people with diabetes by the attitudes of generations of healthcare professionals, grooves in a vinyl record that has become stuck?

I can remember vividly how my own personal attitude-adjustment occurred.  I also remember it was very painful.

Attitude-adjustment

I was in my second year as a junior doctor, SHO on a kidney unit.  I was just finishing up, taking a blood sample from a woman new to my ward.   As I was going, she said we’d met before.  I couldn’t place her, so she elaborated- we had met in the diabetes clinic. I must have said something like, ‘That’s nice’, but her next statement grabbed my full attention: ‘Yes,’ she said,  ‘I remember it was you that made me cry.’

I can only describe the next ~30 minutes by saying that she took me to the cleaners.

I sat. I listened.  I learned from her what a first rate a** hole I had been.  She told me the brutal truth that resulted from of the way I had talked to her.

I had judged her.  I had demoralised her.  I had humiliated her. I had reduced her to tears.

It was my turn for tears and for humiliation.

Well, she stayed several days on my ward. We enjoyed many more conversations and developed a close doctor-patient relationship and perhaps for the first time in my career, I came to know what that phrase really means.

Okay, you have been very patient.  I think it is time.

So, if you’ve read this and none of it cuts any ice, you might consider adopting the approach of Dr Kempner at Duke University in the USA.

For a more academic assessment see Robert Tattersall’s informative article.  Register and login for free if you’re a healthcare professional, but if you do so and you are not a health care professional… well… that would be VERY naughty now, wouldn’t it? VERY, VERY NAUGHTY…

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8 thoughts on “50 Shades of Diabetes?

  1. Hello Pete
    I recognise a quote from my blog here and felt duty bound to reply and I guess I’m never really short of a word or three 🙂
    I think words are very important. Of course how I describe my life with diabetes is coloured by my experiences and the ‘growing up of me’ with T1.
    I was diagnosed in 1979. You may not remember things back then but you have my assurance that it was very ‘rules’ driven. You must do this and you must not do that. The rules mainly related to food and eating. Some of my attitude and memories come from here. I still hate seeing the dietician even though I know the lovely lady I occasionally see in pump clinic is fabulous and has never ever told me not to do anything 🙂 – ah, happily things have changed but I was a young person when all this happened and I believe these things may leave indelible marks on us, making it hard to change.
    But we can stop this happening to young people now and if we really believe we want to empower people with diabetes we have to stop value ladening (not sure that’s a word!) the language we use – I agree with your blogs sentiment. We should stop using compliance and non-compliance and ‘test’ (can be passed and failed) and think more positively about the words we use. I know I’m pretty radical but I don’t like care plans with goals – they imply that I might not be doing good enough – good enough for whom?
    And finally we must stop the use of the word Diabetic. I know I will get shot down for this but so long as I hear HCPs refer to ‘the diabetics in the clinic’ (overheard recently at hospital) then we are getting things very wrong. Its like labelling us a group of a particular type of animal :S
    So – yep – much thinking to do but more importantly how can we change things for the better? I don’t know 😦

    • Thank you Anne. I for one will be privileged to volunteer as a standard bearer for all that you say above.
      I plan to take two approaches – firstly through trying to influence the attitudes and behaviours of healthcare professionals with whom I work and with whom I communicate more widely. Secondly, I wish to direct an interest in narrative-based medicine into understanding the personal stories that lie behind the very telling & self-deprecating comments that people with diabetes may make from time to time. I really need to partner up with some social sciences departments in West Mids that may already may be involved in this type of work.
      Can you think of anything else that somebody like myself can do?

  2. This piece struck a chord with me because I am a linguist with an interest in language and metaphor in health communication ( http://ucrel.lancs.ac.uk/melc/). It shows what we are finding in our own work: word choices matter, and they matter particularly when we talk about one thing in terms of another, as we do when we use metaphors, such as talking about being ill in terms of a fight, or the patient-doctor relationship in terms of the relationship between a child and a teacher or a parent. Metaphors are resources, tools that we use to make sense of our experiences. At their best, they can help us make sense of things; they can evoke positive emotions; they can foster intimacy. At their worst, they can create anxiety, misunderstanding and miscommunication. Metaphors to do with fighting, in particular, are very common: we say that we ‘battle’ debt, inflation and insomnia, as well as diseases such as diabetes or cancer. In our own work, we have found that these metaphors can provide meaning, purpose and a sense of identity for some cancer patients, but they seem to be potentially harmful for most other patients. So all of us, and especially health professionals, need to be aware of our own and others’ metaphor use, to make sure that we use them and respond to them sensitively, in ways that help ourselves and others. Different metaphors work best for different people, or for the same person at different times. When we are particularly vulnerable, such as when we are ill, it’s important that we are empowered to use and develop metaphors that contribute to our well-being, rather than having unhelpful metaphors imposed on us.

    • Thank you so much Elena. It’s so wonderful to hear that from someone like you who has a deep understanding of what’s going on under the surface.

      As healthcare professionals, how would we know if a metaphor is proving helpful or not? I think as time has passed I personally use metaphors less. My consultations seem to be all about how to simplify, simplify and then simplify some more. Maybe Google translate should have a function that turns medical speak into person in the street speak!

      In the past, I think I was more inclined to ‘battle’ (oops!) to get patients to understand something on my terms. Oh, how little I knew… I’m sure I get it wrong lots of times, but I do my damnedest to reflect and learn 🙂

  3. The language you quote constructs the doctor-patient relationship as a metaphorical parent-child relationship, but not one of the loving and nurturing kind but one of the controlling and punishing kind. You may be interested in George Lakoff’s work on nurturing parent and strict father metaphors: He was writing about politics and government, but it’s still relevant.

  4. Hi Pete …am a hospice doc interested in the potential of language to heal or harm. Was interested to say you are consciously using metaphor less…much of the time it creeps in without us noticing! It was after watching a slide set from Veronica and Elena’s work that I realised that even the term ‘frontline’ clinician is part of a war metaphor !! All very interesting and relevant!

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