The language of diabetes is filled with unpleasant words – blood, dieting, sugar testing, cheating, exercising – words that prompt feelings of dread, pain, and shame. I rarely think about this special language of diabetes and how it can influence care. But John Zrebiec, LICSW, director of behavioral health at Joslin Diabetes Center, whom I recently interviewed, brought this idea home to me.
He told me a story of a young woman who was upset that Zrebiec had given her caregiver the impression that she had bipolar disease, because he kept talking about her “highs and lows”.
Of course, he meant the highs and lows of her glucose sugar readings.
And then there was the tale of a man who, before he had diabetes, believed ketones were a 1950’s singing group.
While those two examples may seem extreme, the special language of diabetes is important in how it frames our day-to-day vision of the disease and how we approach it.
For instance, people with diabetes often talk (or are talked to) about “diets”, when we might be speaking about meal plans or healthy eating.
After all, no one can stay on a diet for very long (ask me) but it’s certainly possible to maintain healthy eating habits for the long haul.
Other terms also seem to have a belittling effect.
Take blood sugar “testing.” What is a test but an opportunity to fail?
Since the blood sugar checking machine was introduced in the early 80’s, the term “test” has become an invitation for millions of people with diabetes to measure whether they are good, bad, right or wrong – when, as Zrebiec points out, it was initially conceived as more of a compass to help find direction.
The point was to use your blood sugars to give you an indication of what to do next — up your medication, eat fewer carbohydrates or reduce your medication – not as a measure of moral virtue.
Zreibec notes people who have diabetes tend to really appreciate talking to other people with the condition, because it is an opportunity to achieve real understanding given our shared vocabulary.
To this end, he recommends finding a support group, either in person or on the web. The most important thing, he suggests, is to join a group that is a mirror image of where you are with diabetes – if you’re 50 with type 2, you probably won’t find much mutual understanding with a group of millennial type 1’s.
By working with others – including family members and loved ones – to transform the negative vocabulary of diabetes to a positive one, you can shuck off any blame and shame of having diabetes, and learn to see it in a new, more accepting and encouraging light.