A few weeks ago, I was reading around on one of the many diabetes message boards of which I'm a member. I spotted a thread that included a note from a woman who wrote that her A1c has never been above 7% in 40 years of living with type 1 diabetes. Rather than responding directly, I tweeted, "I want to die a little."
Why the strong reaction? Because in the 18 years I've had type 1 diabetes, I have never been below 7%, and I once again was reminded that many people seemingly have much better control than I do. Sometimes it's all I can do not to hide under the covers. (Yet here I am sharing at the 'Mine...)
The Twitter conversation between my DOC friends and I carried on for a bit, and after awhile, I noticed a trend in comments. Not about this woman's A1c specifically (props to her for good control!), but about the idea of sharing your A1c results with others.
NEWSFLASH: FDA Clears Dexcom Share Direct
Dexcom gets regulatory approval of its 'on-the-go' mobile apps for CGM data-sharing.
State of the Union: It's Time to Cure Diabetes
President launching new precision medicine initiative to better treat, cure diseases like diabetes.
'Robotic Pancreas' Appears On American Idol
Carlos Santana's nephew Adam Lasher shows off Dexcom G4 during live performance.
Personally, I don't like to draw that much attention to my specific A1c result. Usually when I have an endo appointment, I'll say that it either went up or down, and sometimes by how much. Giving the actual number can be tricky, because when you're swimming in a sea of numbers like we PWDs are, one more single number doesn't always mean much. In diabetes, context is king. And even when your A1c is supposedly perfect, you can still feel like a failure if you know it's an average caused by too many lows or bouncing blood sugars.
The more aware I am of others' lives with diabetes and the struggles they go through, the more trepidation I have over revealing this bit of information. It's just a number, right? It shouldn't have so much sway over a person's self-worth. And yet it does!
In fact, A1c results aren't the only things that cause a little knot of guilt in my stomach. There have been times at diabetes meet-ups where I'll test with another PWD after having a lunch or snack, and they'll have a perfect blood sugar reading — or possibly even be low! — while I'm clocking in at 212 mg/dl. Or when I hear that someone's basal rate is 10 units less than mine, or when their bolus ratio is 1:15 and mine is 1:8.
Sharing any number can trigger a "Why am I not as good as them?" reaction. If I'm being honest, I can't help but admit to smidges of jealousy here and there. It's not like I'm not trying to manage my diabetes, and Lord knows I'm fully aware of why my basal rate or bolus ratios might be different (different body sizes, activity levels, etc.). But of course, that also makes me feel guilty that I'm not in better shape!
It's a vicious cycle, I tell ya.
So that brings me back to the idea of sharing, specifically sharing your A1c because it's often regarded as being somewhat of a "report card" or "benchmark" in how you're doing with your diabetes management.
One thing I hadn't considered is the fact that your or your child's A1c could be a source of pride! Obviously, we put some serious blood, sweat and tears into our diabetes management, and when we get an A1c that makes us happy, reactions be damned! We're happy! Sometimes sharing can be the reward for a job well done. D-mom Kristie Angel says, "Since we all work together to help maintain Ethan's blood sugar, I share it! It's a reflection of all of our hard work." Amen!
Sometimes even when a number isn't what you'd hoped for, you can use it as a teaching moment. For reader Jenna Holt, when her A1c wasn't the greatest, she kept the number to herself more often. But now she says, "After being involved with the Diabetes Youth Foundation of Indiana, I have come into a role model position. I share my number with everyone. Even when it isn't the greatest, I feel that it can help put things into perspective — not everyone is perfect and won't always have the perfect number. From there the discussion begins about how to improve that number and set reachable goals to help lower it over the months to follow."
Likewise, reading about someone's success in dropping their A1c can be inspiration. In a recent column in Diabetes Health magazine, Meagan Ensler writes, "A few of my friends freely share all their A1cs, the good, the bad, and the ugly. They let us cheer them on or offer support. They aren't afraid to show their struggles with diabetes. One man I know even posts his daily blood sugar readings on Facebook, which seems incredibly brave to me."
I guess that's why it's important to be open with how your whole diabetes life is doing, not just what the one A1c reading is. Life is complicated and it's not always a matter of just "not trying hard enough." There's often more to the story than meets the eye.
What I'm getting at is: while the diabetes community is amazing in many ways, it also leaves folks open to the risk of comparing themselves too often with other people without knowing the full story.
One reason I appreciate blogging is that it helps bring to light how monumental of an achievement it is to bring down an A1c. Hearing the one-off comments from this woman who's never been above 7%? I don't know her full story. I don't know what she does or how she lives. It's not fair to judge or presume anything about her, and I certainly shouldn't use her notes to evaluate my own diabetes management. Right?
"First of all, (an A1c) is personal, and also to get a full picture of the how and why the number is what it is you would have to settle in for a long discussion," says reader Becky Wardle. "I view it kind of like sharing your kids grades. Most of the time there is a big back story and a reason for the number. Also, no two people are the same, so a triumphant number for one may be another's sorrow." Good point!
Jane Dickinson, a CDE and also a 30+ year veteran of type 1, feels the same way. She says, "I think I fear that I will be judged and I loathe being judged, especially by numbers. People may compare and I don't want that either."
According to a new position paper by the American Diabetes Association, we cannot even compare our goals for our A1c level! No more "one size-fits-all" everyone with diabetes should maintain an A1c of 7%! This milestone statement was underscored by current ADA president Vivian Fonseca, who says, "It is unrealistic to expect that everybody with diabetes should have the same goals and use the same medication." For example, younger, healthier PWDs might be able to accomplish a lower A1c of 6% or 7%, whereas for older folks (and even children), it might be safer to trend higher, in order to minimize the risk of hypos. The new ADA guidelines emphasize working on individualizing treatment with the right combination of medication, diet, exercise, and blood sugar testing. Cool that they're recognizing this!
But if we're not even working toward the same goal, does it make even less sense to share our results?
I think there can be some rewarding aspects to sharing your A1c, but I also think it's important to remember how announcing those numbers can make other people feel. On the flip side, I also think it's important to remember that what one person does to manage their diabetes is what they need to do and what they've been able to accomplish, and I should be proud and support them. After all, YDMV (Your Diabetes May Vary)!
Managing diabetes is a tough gig and we all need as much support as we can get. I suppose a little comparison can help us realize our goals and motivate us to accomplish them, as long as we're seeking the right guidance from our doctor, educator, and our DOC friends.
In fact, maybe I should send that woman a note asking how she does it!