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.
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.
I asked via our Facebook page and Twitter feed (you are following us, right?) about whether or not folks share their A1c results. And no surprise, what came back was quite the varied reaction!
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!
I rarely share my A1c with anyone other than medicos, because the only people who understand it might get upset if their control is not as good. That being said, most diabetics I know aren’t freaked out by me asking them about it: It DOES generally give one an idea how you’re doing. I recently brought mine up when a Physician’s Assistant said that I’d “had a lot of trouble with control.” It cheesed me off because as difficult of a patient that I have been, once I was correctly diagnosed as a Type 1, I was able to have very good control. After I mentioned that my last three were quite good, he looked at my numbers and had to agree.
Allison, did you see Mike’s post the other day? http://asweetlife.org/michael/blogs/blood-sugar-control-blogs/failing-the-hemoglobin-a1c-test/26580/
As for choosing to share – it’s so individual, just like each case of diabetes. I know that in Mike’s case, sharing his frustration about his A1c helped him, as did the comments and feedback he got.
As with all things in life (not just A1c), it’s great to be happy for the success of others, and work hard to be your best.
I agree with everything you said, I wrote about it too a while back:
http://thegirlsguidetodiabetes.com/2012/01/09/share-share-a1c
Great post, Allison. I think it’s great to be aware of all what is involved in sharing A1c results and how we can comfort others in the process-by sharing our struggles as well as our triumphs.
I am glad other people have shared their good numbers because it makes me realize it could be possible for me to do better.
I share my numbers with anyone who asks. What makes me angry are the form letters I get from my doctor which are designed for folks with the big D. They always say my A1c is high. No indication that it has come down, gone up, stayed the same, good for me, bad for me, or any other variation of “normal”. I hate those letters.
So how is a diabetic person ever able to be perfect when you have a disease which makes that impossible! All of our “numbers” are indicators of how we’re doing at this moment – but as well all know, tomorrow is another day!
I suspect most of us have an idea of our A1C number before we ever see the lab result. And it’s only part of the big picture.
Good blog – you hit so many of the perspectives on this and I love the numbers you share (I am very similar to you)! But, please ask the >7.2% what she does. We can always learn from others.
I’ve had A1Cs from 10 to 6. At each stage I was using the amount of motivation and information I had to do what I could. That’s it. I believe it can usually get better, but only to the degree that we are ready and to the degree that we decide to sacrifice other aspects of our lives in order to achieve it. That means, sometimes we don’t do more, and it’s okay.
I think the part about learning from each other is the only reason that sharing A1Cs makes sense. If someone has helpful information, it’s great to be able to be objective and explore what it might have for us. If I let the ADA tell me what my A1C should be, and how to achieve it… I’d be lost. But, instead, I have learned from other diabetics about what they have done to get better results AND improve their lives.
If we can detach ourselves from the results and figure out ways to improve them it will be better for everyone.
I will share my results, but am very suspect about doing so on-line due to security concerns.
Thanks for the shout out to my article on Diabetes Health! My name is mis-spelled though in this post as Meagan Ensler…should be Esler. Thanks again though! My A1C has been alllll over the board in my nearly 18yrs of diabetes unfortunately, though I’m getting better with age!
I feel very similarly about sharing my A1C. I’ve recently become more involved in online diabetes communities and hate it when others share theirs, especially when they are less than 6! I guess I feel like I’m a failure compared to those people and it makes me angry, like they are flaunting their fabulous A1Cs. I know they have every right to feel proud of their amazing control, but it still makes me feel bad to know that I can’t fathom of that sort of number. Don’t get me wrong, I have great control, but I still don’t feel like I can compare and end up feeling embarrassed. I wrote a blog about this very source of frustration a couple weeks ago: http://collegeveganista.wordpress.com/2012/04/05/d-for-dummies-whats-normal-anyway/
It’s an interesting conundrum, isn’t it? You want the pay-off of feeling proud when your A1C is under 7%, yet we can also say we should only look at numbers as guideposts and not judgements of our self-worth. My left brain understands that numbers are best used as information, but my right brain moans every time a number shows up I don’t like.
For the past several years my A1C has been in the high 5s. My endo told me to get it up, because yes, I was having lots of lows. Last few tests it’s been in the low 6s. Best I can tell you why is I eat a very low carb diet so I take few excursions on that “roller coaster” and I walk an hour a day which keeps me insulin sensitive. I know because when I’m sick and don’t walk, my blood sugar shoots up. I don’t say any of this to seem virtuous but to offer a path that may help.
The A1c is a bit like a student loan to me – whether it’s high or low, I would never ever judge someone based on it. There should never be any shame!
Allison: You have opened a can of worms here, to be sure! I am a Type I who will have had this illness for 40 years this summer, and I don’t Tweet, but my story sounds like the one you mentioned. I have been frustrated, of late, because my A1C has been 7.0, where (at least since they have been testing A1C’s – which they DIDN’T for the first 10 years that I had the illness – we had neither blood glucose meters nor A1C tests!) mine has been in the 6′s.
I happen to be single (neither hubby nor kids.) When I was diagnosed I was told I could/should not have kids. My life expectancy was to have been reduced by 20%. I’ve had at least 2 guys break up with me, over the years, because of their fear of Type I diabetes. So now, into middle age, I have me, myself and my Type I diabetes to care for. It’s like a second career (and yes, I do have a full-time job, too.)
When I was diagnosed I spent 2 weeks in the hospital, I read books about Type I diabetes. (I know, no one’s insurance company would ever pay for that luxury now!) I memorized the Food Exchange Lists. I measured my food using measuring cups and a scale. In order to keep my BG’s on an even keel, I still (despite pumping and a CGMS) eat precisely the same breakfast and lunch, at least Monday through Friday. I exercise at least 5 days a week at the gym. I test my BG at least 12 times a day and, before pumping, it was not unusual for me to test my BG 20 times per day (yes, 20 – that is not a typo!) However, as I pointed out, I have me, myself and I to take care of. At this point in my life, my chances of finding a husband are pretty slim. I will never have kids. If I develop complications, I’ll have to take care of myself. I feel I cannot afford to develop complications, so I live as I do. The only person I knew with Type I diabetes before my diagnosis was a young lady who was diagnosed at age 6 months and died of bedsores at age 30 (blind and in kidney failure.) It scared me half to death.
Would I like to have had a different life – complete with offspring and a husband? You bet I would!!! That’s just not the way my life has turned out. I don’t focus on that, and instead try to enjoy all that this beautiful world has to offer.
I work with a young Type I lady (in her 20′s) who eats with much more abandon than me, and takes injections rather than pumps insulin, and she is getting married this summer. She swears she’s never had an A1C above 6.5. (I didn’t force this information from her – she volunteered it!)
So … I don’t pass judgement on others with Type I, and how they manage their diabetes. This disease is awful, and I’d give it up in a second. Everyone’s body is different, everyone’s life situation is different, etc., etc. YMMV. We’re all in this together. I’m ready for a cure, but sincerely doubt I’ll see one in my lifetime. I hope you younger Type I folks WILL see a cure (or at least a fantastic working artificial pancreas!) in your lifetime.
Don’t forget: The grass is ALWAYS greener on the other side of the fence (until you get to the other side and find out what is really going on!)
P.S. In case you were wondering, Dr. Richard Bernstein WOULD NOT be pleased with my blood glucose control. I am not perfect, and refuse to go on a low-carb diet.
June
June–The guys who didn’t stick around because of your Type 1 diabetes were never the right ones anyway. At least you didn’t get married to one of them and get divorced later (like I did). Also, I did have two children…one of whom is has such a high intelligence level, I marvel at him; but my daughter is intellectually disabled. Do I worry that my diabetes may have affected her developmental issues? Yes, I do. Even though my A1c’s were in the mid-5 range for both pregnancies. There is nothing I can do now except love both my young adult kids (ages 21 and 23) and try to be as healthy as I can for as long as I can. My A1c’s run in the low 7′s and that truly bothers me. I wish I could go below 7!! Janet
Janet, you need to remember that non-diabetic mothers have disabled babies, too. So don’t blame yourself for something that might have been due to something entirely different. Just keep on loving your wonderful daughter! And I think it’s better to just live each day as best as you can, and NOT regard the A1c as a report card. Life with diabetes is hard enough without worrying what your “grade” will be!
I have talked about A1c’s on my blog often in the past, not knowing how hurtful or seemingly “flaunting” they seem to others until my daughter and I both had A1c’s that have started to climb. Now I cringe everytime I see someone post thier A1c because I realize how it doesnt always reflect effort, knowledge or mental sanity! I believe in being proud of your hard work, and I can understand why people DO post their result..but at the same time I think talking about A1c’s is like talking about weight. You just shouldnt do it because someone’s feelings WILL be hurt.
Just because someone is “skinny” doesnt mean they are healthy or in good physical shape, and it certainly doesnt mean they eat right either. The body is an amazing MACHINE and we can only do our best as a pancreas. SO many physical factors (muscle mass, metabolism, hormones etc) can influence Diabetes “control” so what is the point in “comparing” at all?
For a Diabulimic, A1c is always high. I won’t share my A1c because it’s just like sharing my weight. I’m already a failure (perceived or otherwise) in both areas. A1c becomes a symbol of “success” in diabetes, a measure of how “good” or “bad” you are. When an A1c is high, you are a “bad” diabetic, you aren’t working hard enough, you aren’t “controlling” your diabetes. But focusing on that “perfect” (lots of quotes here) A1c leaves out the psychological aspect of what is in a number. When other people share, it hurts me. When other people ask, I am ashamed. When other people comment, they chastise or disparage me.
Thank you for this discussion. I know people are learning more about diabulimia, and I hope when they learn about this disease, they learn how the numbers can really affect someone like me. Hearing someone is at 7% I want to die a lot.
My heart goes out to you. I know what Diabulimia is, and it is simply not fair that a person should be stricken with both Type I diabetes and diabulimia. I’m sorry if posting my A1C made you feel bad. That was not my intention. I encourage you to find a way to love yourself unconditionally (easier said than done, I know, in a world so competitive and judgemental as ours is.) I pray that, with therapy, you will overcome the diabulimia. Perhaps you could start a blog (wherein everone with diabulimia could post anonymously) in order to “meet” others online with the same afflictions.
I do not judge anyone when it comes to a person’s care of their diabetes or if they choose to share their A1C’s or not.
I have had type 1 diabetes for 33 years and yes I am one of those people that post their results. I do not to brag about it at all. My A1C’s for the past 15 years have been 5.4 to 5.9. I work fulltime and I manage my diabetes fulltime as well.
When I was diagnosed in 1979, there were no home glucose meters or A1C’s. I was in the hospital for 3 months and the only training I was given was to take insulin and not eat sugar. When I was released a nurse told me that I would have complications within 10 years and die by the age of 30. Hmm, I proved her wrong!
Like Jean who posted earlier, I have a very strict diabetes care regime.I am on a pump and I have a CGM that I wear when I make changes in my routine. I eat almost the same thing everyday, I check my bs 12-15x daily and I exercise an hour a day. I try really hard to keep my bs between 89-90 and around 100 when I exercise.
Growing up I saw so many people dealing with diabetes complication (type 2′s) that I was on a mission to try to avoid them. I read every book and talked to so many people that had it.
My endo does not like my diabetes regime at all. I do not have many highs or lows at all and I do not understand why he does like what I am doing. I do not eat a low carb diet and I WILL NOT Eat anything labled “sugarfree”!
I HATE having this disease and I pray that a cure will be found! But until one is, we all have to do what we need to do to survive.
Just remember, that we all live different lives and what works for one may not work for another. Let’s just be supportive and accepting of our differences of how we live with type 1 diabetes.
I meant to say I keep my bs between 80-90
Great write up Allison! Kudos to the ADA, too. “Individualized” not one size fits all, “activity” or “behavior” not the end result, and “learning from” not just sharing our strategies represent the orientation we’ll need to make significant societal change. Those are the pillars of our approach at Type-U (coming soon).
As a person with a NATURALLY low A1c that has nothing to do with what my BGs really are, I applaud you for a serious, in-depth look at the subject. I have never been able to get medical professionals to take me seriously — they applaud me for “excellent” A1cs and never consider that I’m not doing as well as I seem to be. I eventually realized that my A1c has NOTHING to do with other peoples’ — they simply cannot be compared, because comparison leads to NO useful information.
Yes, I think it’s really important to congratulate people and give them LOTS of pats on the back when they’ve been able to get closer to their goal, and to offer heartfelt sympathy and encouragement when they haven’t, but always keep it in the context of THEIR experience, not your own. So, Allison, your actual number is FAR less important than the fact that you’re doing your best.
And a note on the ADA paper. It still misses the point. I’m an older person (64), although still in good health, and I DON’T want anyone telling me that because I’m older, I should aim for an A1c between 7 and 8, because I would have to get myself seriously ill in order to do that. In order to keep myself feeling good, I need to be in the 5′s (I TOLD you I’m a low glycator) and that DOESN’T mean normal BGs for me. Unless you consider a range between 50 and 300 to be normal!
Is there a forum online (here would be great) where we could go to discuss this issue? I know we are all different but there are tips that could be shared, support given and even a “misery loves company” thing that could happen… then each of us could get on with getting on and hopefully doing better. I love the comments just wish there was more of an exchange back and forth.
i tend not to discuss my a1c, i hate seeing the fact its too high no matter how hard i try. like yours my diabetes is very difficult to control to the point im actually having to many hypos at the high a1c ive got.
instead i say if its gone up or gone down, im very proud that ive reduced my a1c by 3% but im still not happy with it
A1c forty years ago! Not available! I’m a 52 year PWD veteran. Do the very best you can possibly achieve, do not beat yourself up, and keep on-livin’-on! Some PWD’s are near-perfect. Who knows how they do it. If you ask me chasing bg’s can be a “crap shoot”. But, hey, I’m still rolling the dice and hoping for the best!
I think sharing A1c levels is a little like sharing salary information. One person is going to feel bad. It’s tricky stuff, especially as diabetics have a screwy emotional relationship with our numbers.
Thanks Allison for a great post.
It’s the same reason why some people put those (IMO ridiculous) running distance stickers on the cars (i.e. 26.2 or 13.1). Some people have self esteem issues and others just need an ego boost. I’ve never felt the need to brag about my a1C and I do my best to be sensitive to those people who are struggling with their control.