My first diabetes educator was a very matter-of-fact kind of a person. I saw her for a number of years in the outpatient clinic at the hospital. She taught me everything that there was to know about diabetes, and supported me in my desire to commence insulin pump therapy. She had my back when my endo berated my very first hba1c result within a very short time after diagnosis. (Sidenote: ‘You have very poor control’ is still etched into my brain to this very day…).
However, I guess her limitation was that she struggled to empathise beyond the diabetes textbook with the reality of day to day life with diabetes. You know, those little life hacks and shortcuts that we so often take with diabetes. Those practices that might not be exactly by the book, and yet we do them because they make life easier for us.
My memory may be foggy here, but I believe that said educator first introduced me to diabetes complications, in that same matter-of-fact kind of way. It wasn’t a purpose driven conversation, but rather something that came up in a matter-of-fact kind of way during our education sessions. The take home message went something along the lines of ‘manage your diabetes well, or otherwise complications could develop.’ Throw in every other healthcare professional asking me what my hba1c was the minute I disclosed my diabetes, and it was easy to feel that the pressure was on.
I was genuinely scared at the thought of developing diabetes complications during those early years of living with diabetes. Complications was a twitchy word in itself.
I vividly remember driving home from an exam at uni one afternoon, and hearing of a random act of kindness on the radio towards a woman with diabetes who’d recently had a limb amputated. I just remember feeling really twitchy and feeling my feet and confirming that they were there and working. I remember the guilt I felt for the imperfections. Namely the thongs that I was wearing instead of closed shoes, that my feet were cold and that my blood sugars were yo-yo-ing.
Here’s the thing. Diabetes complications were always, always presented to me as a consequence of not managing my diabetes well enough. I don’t blame my diabetes educator personally, because I truly believe that it’s an institutional practice. Nobody talked about complications as (relatively) openly as they do now. And that they are largely manageable, treatable, and certainly not the end. Well done to the Grumpy Pumper and other pioneers in this space who endeavour to make talking about complications feel just as normal as talking about diabetes.
Back in August, Bionic Wookiee David Burren made an outstanding comment challenging why diabetes complications have to be called diabetes complications. They’re not diabetes complications, but rather health conditions that are exacerbated by diabetes. I love this sentiment so, so much. While managing diabetes well will undoubtedly reduce my risk of developing complications, simply having diabetes could put us at a greater risk of developing related health conditions.
With a great deal of conversation around diabetes and language on Twitter this week, I’d once again like to say that language is not about me being nitpicky over whether you call me a diabetic or a person with diabetes. It’s not about being ‘nice’ to a person with diabetes. When we’re talking about or to people with diabetes, the words we use and the attitudes we convey have power. They influence our thoughts and feelings – look no further than my late-teenage self.
Above everything else, ‘manage your diabetes well or complications will develop’ did extremely little in the way of motivating me to better manage my diabetes. It was the human connection around diabetes that did. I think we all have a part to play in supporting that.