Today let’s talk about changes, in one of two ways. Either tell us what you’d most like to see change about diabetes, in any way. This can be management tools, devices, medications, people’s perceptions, your own feelings – anything at all that you feel could use changing. OR reflect back on some changes you or your loved one has seen or been through since being diagnosed with diabetes. Were they expected or did they surprise you?
Arresting words, they are. My child has diabetes, uncontrolled. That is something.
I first saw these words on V’s paperwork after our first follow-up appointment, a month after discharging from the hospital. It felt like a punch in the stomach. Given that V’s A1C at the time of diagnosis was 12.3, uncontrolled made perfect sense.
At our three-months follow-up V’s A1C dropped down to 7.2. At that time we did not fully understand what it meant. Is that good – we asked the Endo? She reassured us that it was perfect, exactly where we needed to be. That was great news. Except, why was her diabetes still called uncontrolled?
Maybe a certain A1C level needs to be maintained for a longer period of time in order to stop labeling diabetes as uncontrolled? Or maybe we’ll be able to manage so well that V’s blood sugars will always stay in that magical 80-180 range that the Endo identified for us. That’s how it works, right? You do everything you are supposed to do, and BG stays within the lines.
OK, you can stop laughing now. But in the beginning I honesty thought that was how it was supposed to work. (Imagine my horror when V got the CGM and we started seeing everything that happens between meals. That is what heart attacks are made of.)
The more experienced we became in our D-life, the more we understood how ridiculous the notion of control was. “Is her diabetes under control?” is one of the worst questions someone can ask us about V. What the hell does that even mean? That her blood sugars are so good you can’t even tell she has diabetes? That she never spikes or crashes? That her A1C is always in the recommended range for her age? That as long as we accurately count the carbs and strictly follow doctors’ orders, everything will work out well?
Right. We quickly learned that T1D does not play fair. That no matter how diligent and compliant we are, many things can still wreak havoc with blood sugars. Activity, food, sleep, illness, stress, hormones, planetary alignments, weather forecasts, and unicorn farts can all send V’s BG through the roof or into the deep basement. Sometimes there is no logic, none whatsoever. I think that sometimes diabetes just likes to be noncompliant for the hell of it. It especially likes to act up as we start feeling like we are getting things… well… under control. It has a sick sense of humor.
But enough of anthropomorphizing diabetes. What I want to know – and perhaps will work up the guts to ask the Endo at the next visit – is what the hell is controlled diabetes? Does such diagnosis even exist? And really, what is the point? I want the words “controlled” and “uncontrolled” gone from describing diabetes, and especially gone from an official diagnosis. There is no need to remind us that every day diabetes management is full of failure. There is no need to remind us that for every one aspect of diabetes management that we have control over, there are ten that we do not. The more we fight for perfect control, the more things slip away. Instead, we need to focus on setting realistic, achievable goals that are mutually agreed upon. Let’s put the notion of control aside and focus on meaningful outcomes, one at a time.