Behind the A1C secrecy

do-not-shareYesterday, I wrote about how I had achieved a personal A1C goal, and that it’s time for me to set a new one.

What I didn’t tell you is what that goal was. I’ve made it a personal policy to NOT share my A1C (although I will tell the change from one to the next). But I’ll say it was modest – a baby-step from my previous two results. But I’m still not happy. I don’t know if that goal is good enough, and I fear setting an even more aggressive target.

Why? Because while some people would love to have A1Cs like mine, others have A1Cs that are significantly better (or lower- perhaps that’s the preferred term). And yet, there’s a third group that has been coasting along at my longtime target for an eternity already. I know this because they’ve told me – and told the world – what their A1C is. And, in a way, it makes me jealous.

I know that it’s morally wrong to think of other people’s test results in the same context of my own, but it happens. I believe that, when knowledgeable of one’s own number and that of a companion – whether regarding test scores, income levels, or lab results – it’s human nature to compare. This leads to the inevitable judging of either the other person, of myself, or both. That makes me uncomfortable.

A couple of weeks ago, my father-in-law was reflecting back on his college days. Though he majored in engineering (and worked as an accountant), the lesson he remembers is one derived from classical literature – Homer, Aristotle, and the like. That lesson: human nature, at it’s very core, doesn’t change. It hasn’t changed in thousands of years, and it will be the same a thousand years from now. People will always compare their situation with others, and people will always want what others have. I believe those core feelings can’t be changed.

My point: there’s no point in denying it. The best we can do is remove the temptations that trigger the natural, sometimes undesirable, response from the outset.

My doctor tells me that my A1C is good. But I know that it’s higher than that of a non-D person, and that it’s even higher than other T1D’s who’ve shared their numbers. This fills my head with questions:

  • Is my doctor not setting the bar high (low) enough?
  • Would I feel happier if these others didn’t share their A1C?

I don’t know the answers to these questions. I will say that the other people have served as a bit of an inspiration to me. While I have no inclination to go to a low carb diet, or to deny myself certain foods and freedoms which I now enjoy, the numbers that they’ve shared has helped to adapt my perception of what’s within the scope of possibility. And I know that I can be even better. I want my A1C to be better. (Yet I don’t want to make the sacrifices for that to happen. I’ll play all kinds of silly insulin-games before I pass up a good meal.)

So, on the plus side, sharing one’s A1C can serve as motivation to others.

But on the minus side, it can make people feel bad for the person sharing — or bad about themselves. Though nobody will say it out loud, someone will be perceived as a winner and someone else perceived as a loser. That isn’t nice. Or fair.

So if you tell me that you’re happy about your A1C, I’ll feel happy for you. Tell me you’re sad, and I’ll commiserate. But if you tell me you scored an 8.6 or a 6.8, you’ve now claimed a rung of the ladder on which I’m already standing, and I can’t help but notice you there. I’ll congratulate you if that 8.6 is a milestone accomplishment, and I’ll console you if the 6.8 fell short of your expectations. But in my own head, I’ll wish I’d never assessed our relative positions, regardless of who may be leading.

In this community, we share a lot, and we find mutual comfort in sharing those things.  But to me, the A1C isn’t one of them.

But that’s just me. Your diabetes may vary.

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Posted on September 19, 2013, in Diabetes, Personal and tagged . Bookmark the permalink. 22 Comments.

  1. My A1c is higher than I or my endo would like. I have negligible complications considering 45 years of T1D. However, he shared an anecdote about another patient with A1c always around 6.4: that person has many of the dreaded complications. So that number doesn’t tell the whole story. It does not necessarily mean we’re not taking care of ourselves either.

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  2. The great thing about blogging is it’s 100% up to the writer what they care to share. Personally, as a woman entering her pregnancy years, I’ve benefited greatly reading about other T1D pregnancies and it has helped me to know the A1cs people had prior to conception. I like knowing if what my endo is stating is even close to being in line with what other endos are telling their pregnant T1Ds.

    Thanks for sharing.

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  3. Interesting thoughts on number sharing… I’ve shared in the past but the more I’ve been involved in the online community the more I’ve felt like sharing the exact number isn’t what I need to do.

    On a whole other note, I often question if my doctor sets the bar high enough for me. I feel like if I met her goal for me, I would not be meeting my goal for me.

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    • This was my point exactly. I almost got the message from my doctor during the last appointment that “you (Scott) don’t need me (Dr. M) anymore”. Perhaps I don’t — and maybe I should switch to a 6-month schedule and save myself 40 bucks a year. But it’s reassuring, and encouraging to see him more frequently.

      On my first visit with him, he asked me what MY goals and targets were – he didn’t give me goals. Maybe I should revisit my answer to that question.

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  4. Sharing one’s A1C does kind of remind me of sharing a test score in college. In my science classes professors were always like “Only 5% of the class got A’s or B’s, grades are posted (by student number) outside the classroom.” Then all 200 of us would scramble to check the board after class. Good person or no, the A’s and B’s couldn’t help but feel a bit superior and the non A’s and B’s frustrated. In the long run, none of it meant that a C student didn’t go on to become an awesome physician or scientist. Funny, I just posted a non-sharing story today as well, but it’s more comical in nature. Cheers!

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  5. I know my A1C is low, but the methods and means of getting there has been really draining, and arguably, not safe. Generally I divulge both because I was always encouraged at school to show my work. :-P

    What frustrates me more is how low my doctor wants my baseline to be for pregnancy in comparison to other ladies also trying to conceive. It just makes me question my doc’s judgement more. However, my previously endo was totally happy with an A1C .9 points higher, so….

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  6. Good points! I’m currently interested in others’ a1c numbers for future conception purposes, but otherwise you’re right. I can’t help but compare myself to those that share their actual numbers and feel either defeated or superior. But I’ve also been motivated by the DOC like never before. It’s up to each blogger to make this call :-)

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  7. Scott, I don’t share my number (anymore). There are many reasons for that, but mostly it’s because I don’t want others to feel good or bad because of my number or their number. It’s just a number (and numbers don’t define us, right?). But ultimately, it’s an individual decision, and I applaud you for doing what you think is right.

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    • It IS an individual decision, and I certainly didn’t intend to upset anyone who makes a different one. But I can’t dismiss THE NUMBER’s value as “just a number” either. It is a very meaningful number that can conjure up lots of thoughts and emotions, even if it doesn’t absolutely correlate to effort put forth or potential complications.

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  8. I don’t share my numbers on my blog or anywhere else on the Internet. I tend to get very “good” numbers and there is some of the Straight-A student embarrassment with sharing. I also know that these numbers are only part of the equation. No matter how low my A1c is, my blood sugars are no where near to being normal. I have Type 1 diabetes and that is not going to change.

    What I find ironic is that my A1c has not changed more than + or – 0.5 in ten years. In that time I have started pumping, using a CGM, and significantly lowered my carbs. I feel good, I think I have less variability, and I definitely feel safer with my Dexcom. But my A1c has not changed.

    I try to cheer others’ achievements and not judge their setbacks. I am a better person because of everyone I’ve met through the DOC and that has nothing to do with A1c’s. I hope I’ve been able to help and support others as everyone has helped and supported me.

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  9. My numbers games are purely a battle with myself! Though as a relative T1 newbie I was curious at first about how I was doing in comparison to the veteran’s results. For me there are also other important markers that I use to track my health. For example, at the moment taking Chinese herbs involves a lot of mirror gazing tongue inspections, which is fascinating (and helpful) as a well-being indicator. T1 is just one aspect of my overall health.

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  10. I don’t share my A1c for similar reasons. Also, it is subject to change despite my best efforts. Lie is full of ups and downs, and I do my best to roll with it all. My last A1c had me high five my doc, and that felt pretty good. When i had a lower A1c I also had lows all the time and that was too hard. I’m glad you met your goal. Keep rolling.

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  11. I had never shared my A1c results before. Mostly because I was never very proud of them, and because I had no one to share them with. No one who really understood the importance of them anyway. Then I found the DOC and thought, well, this group would really get why this number means so much to me.

    When I recently let out my newest results I had gotten such wonderful feedback, it felt great. Then a conversation I had with a friend put a damper on my personal joy. They said that they had gotten a “decent” number..something closer to 7.0 and how that was such a terrible number. They had wanted something much lower. They went on and on about how horrible they felt for getting a 7 and all that..

    I know they meant no harm in their remark but I reconsidered my excitement. I had received a 7.0. My doctor had congratulated me and everything. So now, I am feeling like you.. maybe this particular thing is not for sharing. Just for my own personal state of mind.

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  12. I honestly don’t see what the issue is. A lot of people are using the A1c as a goal or target when it really should just be another reading. If we can’t share A1c’s, then we should also not share BG readings, or CGM graphs, or anything surrounding numbers and diabetes because anyone can take offense to it. Just my take on it.

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    • Everyone has their different thoughts on the meaning of an A1C, but I see it differently than an individual reading. Everyone expects to have fluctuations throughout the day, so one isolated reading is pretty much meaningless. It’s pretty much impossible to “evaluate” someone based on one BG reading. A1Cs are more comprehensive.

      That said, there is something honorable about divulging anything and everything. It really helps to express the challenges and battles that we go through. Two very different views at the same issue, I suppose.

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  13. I agree with Katie above, how I have benefited from hearing about A1C’s of other women who are trying to conceive or have conceived because I feel like doctors put such a strict limit on it that it sometimes feels unattainable and unlikely I will ever get there and as a result not be able to get pregnant, but then I hear other people who have had higher A1C’s and the babies have turned out perfect.

    With that being said, I can see both sides of this argument. Sometimes I get down hearing about how perfect everyone’s blood sugars seem to be when I find it so hard to get my A1C down or my numbers in good control. But at the same time, I love hearing about the A1C #s because I know its achievable and in this diabetic life, it’s nice to have something to celebrate, even if it’s for others :)

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  14. Interesting take. I am a “sharer” mainly because I’m planning a pregnancy and that’s the focus of my blog. However, I 100% see your point. The week I got my a1c of 6.8 which I worked really, really hard for and was so happy to get as my endo wanted me below 7.0 before trying to conceive, a few of my blog friends posted their a1c results and they were all better than mine. This made me feel a little defeated because I was so excited that I kicked major diabetes ass, but they kicked it more. I felt like I could and should do better, even though I have been putting in 110% effort.
    But at the same time, it motivated me to try even harder to tighten my control.
    I think there’s no right answer here. If you want to share, great. If not, that’s OK too. I think it’s up to the reader if they want to compare their own numbers with the numbers of others. Which, being human, is really hard not to do.

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