To Share or Not to Share the A1c

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This post is largely a reply to an interesting post by Moira McCarthy who has a daughter with type 1 and blogs at Despite Diabetes.  She makes great points about the Diabetes Online Community being more careful with the way they share A1c results.  I agree with that but I feel strongly on the subject of feeling shame.  I used to feel a lot of pain, shame, and jealousy but no longer since changing my way of thinking in the last few years.  It’s a much happier way and this is what I’ve learned:

First of all, I can’t help but ask…

Should we not share news of a pregnancy because it may bring shame to someone who can’t get pregnant?

Should those who get job promotions not share their happy news so as not to shame the unemployed?

Do we not buy a nice car because those unable to afford it might be ashamed?

Should I not mention my weight because someone heavier could be ashamed?

I couldn’t afford a Christmas tree last year, does that mean no one should have put one up so as not to make me feel ashamed?

Should we all take off our jewelry and wear frumpy clothes as we walk past the homeless?

Does it hurt you to know that someone else has “more” than you?  Looks “better” than you?  If so, the problem is not them, it’s deep within you, or us, rather.  If that sounds harsh, don’t worry, this happens to every one of us at some point or other.  We’re all in the same boat, trying to do our best with what we have or don’t have.

I appreciate people sharing their A1c’s because it’s information and some of us really like information.  For those who don’t, don’t pay any mind.  And certainly don’t let that make you feel bad.  I’m sure you have plenty of qualities I wish I had.

When we feel shame, the root issue has less to do with other people and more to do with our self esteem and to think the answer is other people’s actions makes us victims of ourselves.  To feel shame means to lack confidence or to feel guilty or fearful or unsure of one’s actions.  I’ve felt enough shame during my most difficult years with diabetes to know that when I feel it, I feel guilty that I haven’t been doing what I would like to be doing.  This causes me to reflect and know that I have issues to tend to or feelings to release and acknowledge.  Nowadays, instead of feel shame, I try hard to just be open to the truth.  What do I need to change or do differently?  I try to focus on doing my best and when I fail I feel a lot better than I used to because I have an inner confidence that no one can take away from me.  I don’t do this 100% of the time but with practice and mindfulness it does get easier.

One of the best things children can be taught is to be responsible for their own feelings and thoughts and actions.  You allow yourself to feel blame, shame, and guilt.  To point to others for doing this to you is to remove responsibility from yourself and to lose your power and potential.

It’s true that many people and situations out there can illicit painful, shameful feelings in us.  This is because we’re human.  But, we need to spread the message that also, because we’re human, we have this amazing ability to learn how to accept ourselves the way we are, be completely conscious of our own potential, and be aware of how to respect others.

Maybe we shouldn’t share our A1c’s without all the honesty we can attach to it.  I have learned not to just fling out my A1c and say all is well.  I have a non diabetics A1c but I make it a point to tell people that I am aware of how that A1c is still very different from a non diabetics.  A low A1c doesn’t make me feel certain that no harm will come my way.  It’s as important to me as my blood pressure and lipid profile because it’s all valuable information.  When I share my A1c  I try to explain what I sacrifice and what I do in order to get there.  I’ve mentioned that being at home all day makes things easier and others don’t have that advantage.  Recently I mentioned that due to low hematocrit levels my A1c is possibly reflecting a lower number than it really is.  I also explain that years ago when I had low A1c’s they were a mix of many highs and lows and it was not at all ideal or healthy.  And I have talked about my high A1c’s and why I think they happened and how my experience with them has been.  When others do the same I feel like I learn more and gain insight.  I do however, appreciate when others share the broader story to go along with that number and that’s what I try to do, too.

I totally agree that no one should be using an A1c in a bragging manner or as a way to feel more credibility or to try and bully someone else.  But rudeness come in all forms, every day, and we have to be strong and confident in the face of it.  Especially since we’ve all done a rude thing before and can understand how easy it is to make that mistake.  Not to mention, sometimes all it takes to be rude is to be happy for yourself and someone feel unhappy about themselves.

All in all I hope that next time you see an A1c that bothers you, ask yourself why that is.  Then follow your own path to feeling better.  The first step is to take responsibility for your own feelings.  All you need to feel better and do better is within you.  No one deserves to feel badly about themselves when they have diabetes.  This disease works against our self esteem every single day.  I think we can learn to have more days where we are confident and self assured.  I know I have more of those days than I used to and it’s worth it.

There is no room for guilt, or shame, or blame, just respect, love, and understanding.

Thank you, Moira, for gracefully shedding light on this issue.  I write this post because of my own experience with shame and my opinion about how we should strive to completely own our feelings.  However, I do agree that if each person sharing an A1c (or any great info for that matter) thinks of those who aren’t in the same place, a kinder way of sharing will emerge.

In my opinion, if you have a great A1c or blood pressure or toddlers that talk (mine don’t), or a full bank account (mine isn’t) then share away.  I’m happy for you.

13 Comments

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Well said… Hugs…

Wonderful post. And all so true.

I just worry about the newer D-moms who hear all these crazy (and by crazy I mean amazing) a1cs and beat themselves up if they are not there. I’m actually not jealous or envious . . . while my daughter’s a1c may not be “frame it and admire it-able”, she is a well-rounded and fabulous person who is doing her best becoming an adult with Type 1. She is completely convinced she will never be able to have children because of all the a1c’s she’s seen of pregnant people but I tell her …. wait until that time and deal with it then. I think some of the sharing leads some to think they are failing when they are not.

Then again ../ I drive an 11 year old car with 240k miles on it when I could easily afford a new one. So I’m kind of weird!

BTW I love your blog — and it’s name.

PS and I guess I also would not post a picture of my expensive new car or my huge Chrsitmas tree and write “I’m awesome!” :-)

I blogged about this topic as well but for my stage of being a mom, the a1c tends to reflect little on my children and more on me as a parent. With that aside, I am also very honest and open about the a1c. It doesn’t take into account 99% of what we have going on in our family… good or bad. It is merely a number that does change on average. I take that with a grain of salt and continue to do my best with managing two pancreas that are not mine and try to ensure that the my children are happy AND healthy!

Wonderful post. I too, recently touched on this topic on BHS….after a litany of comments made about to share or not. Thank you for sharing your experience. I am a parent of a child with diabetes…and I believe in sharing the numbers…as I can only learn from through experiencing the real life experiences with a child with diabetes.

Great blog Sysy! I’m here to tell you that I also have felt shame & guilt sometimes during my 35 yrs. with T 1. It can come from Drs.,and often other diabetics. One Dr. scolded me for not having a good A1c test,and said I was the only patient he had that was keeping him from being able to show his surpior’s how well his patients all were doing. Another Dr. threatened to take me on a tour of the hospital’s ICU to show me what can happen to diabetics that don’t take care of themselves. Really made me feel pretty shameful. Now I have a great Dr. and am doing better in every way. Sure, I still have my tough days with tests, but I ,like you, have an empowerment that I have the confidence to stay motivated. Thanks for presenting this subject and writing such an interesting blog!

I agree. If you want to share, share. If you don’t want to share, don’t share. Don’t feel guilty. If your insert stat/whatever here is great, then it gives something for others to shoot for.

You make very good points. As a parent of a child with d, I have swung back and forth on whether or not to share these numbers. But, I think what you said that rings true for me the most is that when I see others post a1c…I learn something from it. If no one ever posted them, I would only have the word of my dr to go on. Seeing other people’s experiences, whether like ours or different, help me to move on and make better choices for my daughter.

Thank you! My daughter’s A1c is always slightly higher than other peoples, even kids. But all of us can celebrate a drop, and commiserate an increase.

Great post. There is a lot of baggage attached to numbers sometimes, but it’s always healthy to get away from that, be objective and try to learn from each other. This whole online community isn’t worth as much if it’s purely therapeutic and no one actually achieves better health. I learn more from these interactions than visiting my doctor.

The burden of managing a child’s diabetes is different, you feel responsible, but are not entirely in control. I know a lot of people want to do everything right for their kids, but, in the end, the biggest positive improvements are going to happen when the child chooses to be proactive and do everything they can to get good results. Making that the long term goal for their child is the best thing a parent can do. In my experience, our bodies are usually resilient enough to ride the numbers roller coaster till we get there.

Nathan, that’s such a great comment. I agree completely. I hope parents take these words to heart. They are in a uniquely difficult position being outside the body they are managing diabetes for and definitely don’t deserve to feel guilty for any of their hard work.

A1cs, or in my case HbA1c (UK). I’d always had great numbers yet I never did anything to get them!

Turns out that firstly I was anemic, secondly I also suffered with hypos – bearing in mind at the time I wasn’t on medication. In the end I got annoyed at my HbA1c because it wasn’t showing me what I wanted to see so that I could show my doctors!

My GP told me that all the HbA1c shows is how long your cells are holding onto glucose for, in my case to begin with they were coming down in around 2hrs, this prolonged to ~5hrs eventually with a HbA1c of 7.3%. And actually my endo isn’t too worried about that HbA1c although its significantly raised from before, he seems to get that it doesn’t always reflect your levels :)

[…] would also add that just like many people (Hallie, Meri, Allison, Abby, and Sysy) have written about recently, sharing A1c values and judging a person’s diabetes success or […]

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