In my latest column for Diabetes Daily, I’m talking about why I think this question is setting people with diabetes up for failure.
“I absolutely hate being asked how controlled my diabetes is. How on earth can such a complex condition be explained in a yes or no question? If a healthcare professional expects me to evaluate my diabetes management with a one-word answer, then they are setting me up for failure. It’s like asking me if I completed the marathon last week, without showing any interest in the journey or preparation that I undertook to get myself past the finish line.
When I think about control in the context of managing diabetes, I interpret it as keeping my blood sugar levels between 4 and 8 mmol/L all of the time. That’s simply far too rigid of a goal for me.”
My diabetes is controlled as much as I can make it today. Yesterday and tomorrow might be better or worse than today, but I cannot worry about that. My mission is to worry about today.
No one has ever asked me if my diabetes is controlled. I guess after living 40 years of type1 with perfect health the doctors must know it is controlled.
As a parent of an 11 year old with T1D, I’ve been told (with pitying sympathy), “oh, it must be so hard looking after a child with uncontrolled diabetes.” Oh, I was sooo angry and hurt.
My son has very well-managed diabetes. The fact that I know when he has highs and lows, and that he and I know what to do to respond to those highs and lows, and how to avoid the worst of them, means that he is well-managed.
People say, “It’ll get easier when he’s older.” And I say, “really? why? will his pancreas suddenly start producing insulin?” Because, frankly, without some major research breakthroughs, I don’t see how this gets easier. Every meal is a guestimate of carb content. Every physical activity is a guestimate of just how much it’ll drop his BGLs. Every set change comes with the risk that it simply won’t work, and we won’t know til hours later when he’s got BGLs in the upper teens and even 20s. Every super fun or super stressful activity (from sleep-overs to school tests) comes with the possibility of a high or a low. Every night comes with the risk that he might not wake up if we’ve misjudged the insulin dosages and/or post-activity drain on carbs.
My son is doing great. His numbers are good. His energy levels are usually good. He’s doing well academically and socially. His school has been fantastic at getting teachers trained (it helps that my son is 1 of 3 in his class with T1D), at making sure that everyone, from the PE teachers, to the music staff to the librarians know he has T1D and have a pretty good idea of what hypos look like. It helps that his friends are starting to recognise when Owen is low, though they’re not yet sure what to do about it.
There is no way to answer, “yes/no, my son is/is not well-controlled.” Does everyone else have children with well-controlled eating habits, temper tantrums, physical activity, screen time, etc?
Why would T1D be the easy one to control / manage, when none of those come with easy yes/no answers?