One of our diabetes friends from Melbourne, Australia, is Renza Scibilia, a type 1 since 1998 who we’ve had the honor of knowing in the Diabetes Online Community for years now. Though we’ve been interacting online for a while, it wasn’t until the ADA Scientific Sessions in June 2013 that I finally had the chance to meet Renza in person — huddling at the convention center there in Chicago with our much-needed cups of coffee in hand!
You may know Renza as a prolific diabetes blogger over at Diabetogenic. Renza works for the advocacy org Diabetes Australia -Vic that connects PWDs both online and offline. But as she tells it, her pride and joy is being a mum to her beautiful 9-year-old daughter and wife to a jazz musician. In her spare time, she drinks too much coffee (just like me!), bakes Nutella-filled desserts and dreams about visiting New York.
Today, we’re excited to bring you a word from Renza on what an A1C number really means — or doesn’t, for that matter.
And now, for that word from Renza…
A Guest Post by Renza Scibilia
As patient advocates, we are constantly saying that an HbA1c is nothing more than a number, it doesn’t define us, it only tells part of the story. An A1C of below 7 is considered “excellent control” to the diabetes medical professionals. It says we’re “compliant,” a patient who “adheres” to treatment recommendations.
Conversely, an A1C of 10% says the opposite. The patient is “non-compliant,” with “out of control” diabetes, not following treatment, forgetting to take their insulin, and not monitoring their BGs.
It’s pretty simplistic, black and white — to them. But for me, the real story is a lot more complex.
An A1C in the low 6s or even 5s can be explained in one simple word – pregnant. And from that one word can be extrapolated other things like anxiety, obsessiveness and sometimes paralyzing terror. “Out-of-control” here meant fearing that my diabetes was harming my growing baby. Trying to gain some control meant checking my BGs twenty-plus times a day.
And the time that my A1c was scratching double figures doesn’t tell you that I was being non-compliant and not caring about my diabetes. No actually, it tells of a rough period where I was experiencing some pretty terrible other health conditions. I was in agony every time I ate something. I was throwing up all the time. My weight was plummeting and I was heading for a period of diabetes burnout that I thought I’d never, ever escape from. Yes, I was “out of control,” but not diabetes-wise. Life-in-general-wise.
But these are the extremes.
What about the run-of-the-mill numbers? What about when we sit in the 7s for months and months and months? What does that say?
The real problem for me lies not with the highs and lows, necessarily. It’s those middling middle numbers which tell nothing at all. I’ve sat in the 7s for a few years now (except for dipping into the 6s when pregnant last year) but that doesn’t mean that my diabetes management has been on top of the world. It means that in the mix-up and the mess of highs and lows and everything in between, it’s all averaged out to something quite respectable.
It fails to mention that I’ve had some incredibly difficult periods where I’ve been unable to sleep or eat.
And some amazingly fun and terrific times. It doesn’t demonstrate the periods where I’ve exercised and eaten incredibly healthy meals, or the times where I sat in front of the TV for a couple of weeks watching Breaking Bad and eating junk. Or about the month where I was in between cataract surgeries and stressed out of my head (with a lot of pain in my head, too). It fails to mention the three weeks I was in New York, living on Half and Half, iced coffee, doughnuts and salads and walking, walking, walking everywhere. It doesn’t tell about the weeks leading up to the World Diabetes Congress where work was so demanding that I felt guilty because I was barely spending any time with my family, and when I was, I was distracted and preoccupied.
And yet, throughout it all, my A1c stayed steady. It didn’t reflect anything at all. Higher or lower numbers may be helpful in illustrating the story of how we may be traveling with our diabetes. But those middle numbers need a little more prodding if they are going to give away their secrets.
They are the real story, more than any one high or low number can say. It’s because most of the time we’re just living somewhere along the line in the middle…. or as the phrase goes, we’re “fair to middling” when it comes to life with diabetes.
So true, Renza. Thanks for sharing this, and we hope the medical professionals out there treating diabetes can keep this important point in mind!