Ninjabetic – the language of diabetes
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.