Ninjabetic – the language of diabetes

By Editor
9th January 2015
Latest news, Ninjabetic

I’ve been thinking recently about the way that I talk about diabetes and the way that others communicate with me and also about me. Language is a very powerful tool used in discussions about diabetes, and a person’s choice of words can greatly impact on a patient and the way that they manage their condition.

During a recent consultation with a diabetes professor, he described my blood glucose levels using the words “bad behaviour”. These words instantly struck me as I knew that he was referring to the decisions that I had made (decisions that aren’t straightforward) which resulted in blood glucose levels that were out of range.

Tactfully engaging a patient in their diabetes management rather than disengaging them is a very fine line and one that could have serious implications for the patient

That interaction was almost a month ago but those words have stayed with me every day since. At the time I felt embarrassed, almost as if I was a child being told off for misbehaving, but I also felt guilty. Those were my readings on the computer screen and they were my responsibility. Yes, they needed addressing, however, tactfully engaging a patient in their diabetes management rather than disengaging them is a very fine line and one that could have serious implications for the patient.

Perhaps it was a slip of the tongue, or perhaps a comment that was intended to be interpreted differently, but words need to be chosen and used thoughtfully. However, reflecting back on that consultation I wonder if the professor would remember the words he used… I think it’s quite telling that I still do.

Another more recent example provided a positive result. I was invited to attend a pharma conference in which I would be interviewed on stage in front of 100 plus employees. My reason for being invited was to bring the patients’ perspective to the table, to talk about what it’s like to live with diabetes and to help maintain a patient-centric approach in the work they do.

While sitting in the conference room waiting for my turn, I heard the word ‘diabetic’ being used and this jumped out at me. Not because it’s the wrong thing to say but because now I don’t use the word. Later, on stage, one of the first questions that I was asked was: “What do you prefer to be known as when someone is talking about your diabetes?” My answer: “A person with diabetes, I live with it but it doesn’t define who I am.” I went on to explain that this is personal to me, that other patients may prefer to be called diabetics with exactly the same view that they live with diabetes but it doesn’t define them, and that each person’s preference should be respected but it shouldn’t ever be assumed.

The positive that came from it was that the same person who had said “diabetic” asked a question 30 minutes later that started with “As a person living with diabetes do you…” It was such a small gesture, something that most people wouldn’t think twice about, but for me the language that someone chooses to use makes a statement and guides the decisions that I make about my diabetes management.

That brings me to one final word… passion. At the same conference I was asked about who and what persuaded me to start taking care of my diabetes after so many years of neglect. There was one person who stood out to me but only because of his passion for diabetes. His encouraging and motivating communication was enough to almost instantly change my mind about the way that I had treated myself for so long. I think it takes a lot for a patient to be passionate about diabetes – we all know how draining and relentless it can be – but I think it must take a lot more for someone who can’t experience it to feel passionate about it. I wanted to feel that passionate about my health and to have that energy when I talked about it, which is where the turning point began… In the way that diabetes was finally being communicated to me.

Comments (4)

  1. Rosie Walker says:

    Hi Laura
    great post and comments. In my experience, the language used reflects attitude, even though this might be unconscious. Hence ‘non-compliant’, ‘failure to achieve levels/targets’ ‘typical diabetic’ ‘obsessional’ ‘patient’. There are good examples, where people really think about what they are saying, both to the person directly and about them to others as well of course. A while ago, Diabetes Australia -Vic produced a really lovely guide called ‘mind your language’. I haven’t been able to find a direct link yet, but I do have a copy and we blogged about it when it was published, here. It reminds me to put a link on our new website too, will do today and post it here, too. Thanks again and keep up the great work!

  2. john says:

    I remember going to see a consultant a very nice indian Dr.. He asked me
    “do you feel cursed? ”
    Which after a pause I answered
    “never really thought of it like that suppose it is a curse ”
    Which he replied ” no I ment ar you often cursty, do you need to drink often ”

  3. Richard Grimes says:

    Yes, language is important. The “diabetic” is the embodiment of a condition: a condition with a person attached; the person with diabetes is a person with a condition that needs care.

    I have had type 1 diabetes for 39 years and, odd as it may sound, I remember the first time a consultant asked me “how are you feeling?” It was about ten years ago, and the consultant was a locum. I remember it because until then, no consultant had ever asked me how they can help.

    Until then my appointments were always about the dreaded HbA1C – you walk in, the consultant says “your HbA1C is high; you need to try harder” and then you walk out. As it happened, that locum consultant asked the right question. I had been struggling with exhaustion for many months and all of the other doctors saw a “diabetic” in front of them so they concluded “your HbA1C is high and high HbA1C makes you tired” and dismissed me with “you need to try harder”. (Amazing, is it? Someone who has never suffered high blood sugar and the tiredness that gives, tells me, someone who has and knows this is different, that its my blood sugar to blame!)

    The locum, the one who bothered to ask me how I was feeling, talked me through the exhaustion and said “I think its your thyroid, I’ll order tests”. He did, it was and now I take thyroxine.

    • Caz Binfield says:

      Yes communication is so key but is so often absent in the professions where it is critical. When my 2nd child (my T1 son) was 6 months old I went to see the GP as I was exhausted beyond expectations and very weepy. Having asked for very little information she prescribed me anti-depressants and sent me on my way with very little concern. It didn’t feel right so I independently got a blood test which included testing my thyroxine levels. Another doctor rang me immediately after the results and said I had almost no thyroxine and was surprised I could even make it out of bed in the morning. This diagnosis was almost a relief to me despite needing thyroxine for the rest of my life. Trust your instincts.

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