The a1C: Golden Trophy or Scarlet Number? Time to take away the shame

December 28, 2011By 14 Comments

I’ll be interested to hear what readers think about this one. The a1C is such a touchy topic, and impacts us in such a profound way. Let me know what you think.

I recently took on the project of sorting through old files on my computer (I am definitely a data hoarder). I came across an email that I’d written almost a decade ago, and it made me cringe.

I was bragging – no; crowing – about my daughter’s 6.2 a1c. I was lording it over the other parent like I was some kind of supermom. I’m sure at that time I didn’t think it came across the way, but looking at it today, the older, wiser me can see that’s just what I was doing. I can only thank goodness I found it in a draft file. Oh, how I hope I did not send that.

Because I think we, as a diabetes community, are a bit messed up when it comes to how we discuss, share, and yes, wield, our a1C. Be it our own or that of our children, a1c’s somehow feel like judgments. Heck: sometimes they feel like sentences.

Sometimes -- most times -- the a1C results feel like a report card.

And I would go as far as to say this is not because a high or low a1C is good or bad; it’s because we wrap our entire “diabetes being” up in that number. I wish we could change that.

First, off, I’m not telling you an a1C is not an important measure of how things are going for the person with diabetes. It absolutely is. There is no doubt (and study after study after study proves) that a lower-range a1C is just plain better for a person with diabetes. That’s not what I’m talking about at all. What I’m talking about is how we share it as a community, toss it around at one another and hold it up like a trophy when we can.

I don’t think that’s good. In fact, I’d go as far as to say I’d love a diabetes world where everyone just kept their a1c’s to themselves, other than extremely private conversations.

Okay, truth: My daughter’s a1C, after being “magnificent” for years, suffered in recent years. Lordy: I can still remember the first time she creeped up over 7.1. I almost had a heart attack. I must have studied her log books and pump history and activities for days, trying to figure that thing back down to 7 or lower. And yes, it was because I care, deeply, about her long-term health. But let’s be honest here: part of it was my ego. I wanted to be Super D Mom. I wanted to be the best. Just like battling for the highest GPA in high school, I was on a mission to prove I could outsmart anything. And from that horrible draft email I hopefully never sent, clearly, I was a bit taken by my a1C-awesomeness. And I’ll be honest with you now: should her a1c be 7.1 any time in the near future, I will do a full-on jig on City Hall Plaza. And I don’t even know how to dance.

But here’s the thing: diabetes cannot ever be completely controlled. Well, I guess if you locked a person in a hospital room and had a drip of glucose and a drip of insulin you could but for now, beyond that, there’s really no way a person can maintain a sparkling, championship-cup like a1C for ever and ever. Because it’s hard. Because we are human. Because sometimes, the body plays tricks on us. Because sometimes in our D-lifes, we are just not up to the extremely hard work it takes to stay in a low a1C range.

But here we all are, viewing the a1C as either a golden medal or a scarlet number: depending on where we are at.

So what if we took the shame out of the a1C? What if, instead of calling it out “report card,” (and I’ve done that many times over the years. The analogy does make sense. It’s comes along just about quarterly and says something about how you are doing overall.) we just kept it lumped in with our other labs, something for us to go over with our medical team and work on. Look, you don’t often see someone crowing about their lipids, right? Or their TH1. But those are labs most people with diabetes have done regularly.

This is why I think we should change how we discuss and share our a1C: because even when it’s a “good” one, we’re placing judgment. On the parent. On the person with diabetes. On the entire family. And believe you me, that kind of judgment seeps into a kid as the years go on. My daughter will be 21 soon. She’s a rational, smart, confident young adult. But she almost shakes as she heads into the endo’s. Not because she doesn’t like her endo; she does. Not because she doesn’t want to talk about how her life is going; she wants to figure things out. It’s because of the GD a1C. No matter what it is, it just feels like judgment to her.

What if we stopped sharing it, and instead we shared just how our D-lives are going and what we are struggling with?

When my eldest daughter was in high school, she was in the scrum of kids battling for the top spot in the graduating class. It was obvious, from the beginning of junior year, that it was going to come down to one botched project or one not-perfect grade. Each semester, the moms would almost dash to one another at events to share their child’s current GPA; to see who was on top at the moment. My advice to my daughter? Just walk away. Keep your GPA to yourself. No matter how high it is or how much it might slip in one term, it’s personal. She didn’t graduate as #1, or even #2. But at convocation, when the Principal announced the name of the prestigious “President’s Award” for the best overall student, my daughter’s name was called. One mom, a real “GPA sharer,” turned around and gawked at me. She said “Really? I had no idea.”

Nor did you need to, oh Competitive Mom. Because my daughter was much more than that GPA. She was a volunteer. A helper. An athlete. A nice person.

The same goes for a1C I think. You – or your child – might not be the “champion low a1c’er,” but there are plenty of other things to celebrate about you. You might be funny. Or driven. Or compassionate. Or good at making the best of out a busy life with diabetes on board.

An a1C does not define you. At least not in my eyes. I dream of a day we don’t share it in quite the same way.

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Comments (14)

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  1. Ann says:

    This is a great D subject.Being able to stay on top of A1c is no easy feat. We were always told stay up and get thr fasting basals right and do weight checks often.can t imagine drilling my daughter what does the scale say because we were taught first,insulin needs are based on weight

    • Ann says:

      Cont’d..for my husband that would not go to appts
      Every increase in insulin units or number of shots..was deamed that i was failing my son. He did not get the formula for having to keep up with growth demands.All he saw was more insulin
      Equals more food.yes plenty of times we were feeding insulin and exercise,but he was growing and healthier since onset.I guess it was good for me to hear bringing down Ha1c takes time and weight checks.21 1/2 yrs and still adjusting insulin dose and lifestyle and school and exercise needs.Ha1c just lets you know keep adjusting insulin taking what is going on and continue covering carbs and weight as needed. It Karl life long maintenance, not just when they are under your roof

  2. Sean says:

    Really thoughtful
    Great post

  3. Kristin says:

    Spot on! A1Cs don’t always correlate to effort, either. Sometimes a bad cold season or growth spurt shoots the #s to h#@%%, best efforts aside. Standard deviation’s something more helpful for us, to see if we’re at least avoiding wide swings, but also a # just for us. YDMV, and you never know what’s behind an A1C. Add in the 20% variance in meters, and every A1C should have a caveat!

  4. Ed Tepper says:

    Interesting perspective. I don’t have a child with diabetes but I have T2 and have worked hard to get my A1c down by losing weight and changing my nutritional habits. I’m proud of my success and I do crow sometimes, but generally only when I’m in a situation where my success may give another inspiration to keep plugging away. Use your experiences to help younger mothers cope with the trials and tribulations of keeping their children healthy. Regards, Ed

  5. I think the answer is not sharing it. My weight, my cholesterol, my IQ, the number of days of my menstrual cycle, and my A1c are nobody’s business. I’ve learned that it is NEVER a good idea to presume that sharing it would be inspirational to anyone. There is less chance of undermining someone else by sharing it in person, although I don’t condone that, but these days with the DOC, people think nothing of sharing it online – FB, Twitter, blogs, communities. It’s possible that someone could derive benefit from it, but if there is a single person who feels discouraged, undermined, frustrated, disappointed in themselves because they saw that A1c, that’s one person too many, and I don’t understand why more people don’t consider that. Furthermore, sharing it only perpetuates the issue of it being overvalued and overemphasized. When it comes to A1c’s, my policy is MYOB, and I wish more people felt similarly..

  6. Tracy Selle says:

    Great post! I recently found your blog and love it. Thank you for writing, even though your daughter is in college now. Perhaps your blog will help me when my son leaves for college one day! : )

    • moiracmcc says:

      Thank you Tracy! And …. my daughter has had D since she started kindergarten. Been there . . . through that! Here’s to a better way or even a cure by the time your son’s college days come around!

  7. After 31 yrs. w/ Type 1, most of those lived in total shame of my HbA1c, I’m finally at the point where *most of the time* I see it as “just” a number. It’s data. It’s taken me so long to get there, and right now I feel like if I want to share it–verbally, online, whatever–I deserve to do that. No, it may not make others comfortable, and I don’t intend to make anyone else feel any certain way, good OR bad, by sharing mine. But I am proud of finally being in a place where I can share my number because it doesn’t represent my goodness or worth as a human being. These days it’s much lower than it was for the 30-some yrs prior, so that’s cool. But I don’t share it to brag. I share it because it’s data. My data. And by sharing it myself, I’m taking back some of that shame from drs, nurses, other medical people, non-medical people, anyone…it’s my number, whatever # it is, and I put it out there of my own accord. I’m always happy to hear other people’s, but it’s up to them if and what they want to share.

  8. sysymorales says:

    Thanks for this great post, Moira, I wrote a reply on my blog (because it’s so long :)

    http://thegirlsguidetodiabetes.com/2012/01/09/share-share-a1c

  9. I could not agree more! It is merely a number we need to keep to ourselves–for so many reasons. Parents put enough stress on themselves and feel guilty all too often as it is–an A1C is simply not a number that can be compared! Unless all of our Angels are little clones with the same BMI,metabolism,sports activities,eating habits-hell vegetarian vs meat eater, organic vs non organic;need I go on? Too much support is needed as we are hard enough on ourselves. That is my vote. Truthfully.

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