Type-1 diabetes: the guilt of an A1c

The guilt of an A1c:

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For over 30 years, my HbA1c has haunted me

Growing up I felt shame every time I saw my endocrinologist with an A1c that wouldn’t budge below 10%.

Now, I have those same feelings with my A1c consistently hovering between 5.5 to 6.6%.

And you know who I have those feelings around?

You, my T1D peers.

What the frickety frick?

Let’s talk about this.

A few years ago a friend and I were chatting about our respective diabetes. I’m not sure exactly how the conversation went, but at some point our HbA1c was brought up. When I shared mine, which at the time I had no problem doing, her partner dropped his jaw, and my friend said: yeah, but her blood sugars are always low.

Hold up, what?

That was the first time I felt the guilt.

Fast forward to present day:

I was recently part of a conversation with a larger group of T1Ds when one person asked us all what our A1c’s were. She said she struggled to get hers below 8% no matter how hard she worked.

The moment the question left her mouth:

  • I started to slouch.
  • I gritted my teeth.
  • I dug my nails into my hands.
  • I averted my eyes.

I did not want to answer this question.

Why the heck are we continuing to define ourselves and our health by a number?

I did not want to hear the responses of those around me either.

And yet, there I was, listening.

Nearly everyone in the room nodded in solidarity.

They, too, had those same struggles.

They didn’t feel comfortable with a lower A1c, some said.

It wasn’t actually healthy to have an A1c of 6 or less, others advised.

The only way to have that kind of an A1c is to consistently run low, some scolded.

Cue the shame.

For 15 years, I’ve consistently run an A1c between 5.5 and 6.6%.

My blood sugars do run on the lower end of the in-range spectrum.

I do regularly hover between 4.5-7.0 mmol/L, but prefer 5.0-6.9.

I do carry Starburst, Skittles, or dried apricots in my pockets at all times to ward off lows.

I do experience lows.

Not always every day.

Not always all the time.

But sometimes every day, sometimes multiple times a day.

I also scan my Libre or test my sugars frequently – like 12+ times a day.

I do check my blood sugars in the night every time I get up to use the loo.

I do adjust my basal down when I see the arrows nose diving below optimal.

I have not had a low requiring help in nearly 20 years.

My blood sugars rarely spike.

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My only tattoos are my finger prick tattoos. 

I know my body extremely well and recognize when my BG is dipping long before it gets to the danger zone.

I’m not saying this to brag.

Many people would find my T1D strategies exhausting, but for me, they work. I do not do well with hyperglycemia. I am not functional with highs. So I do everything in my ability to avoid them.

I don’t like lows either, but I find them much easier to manage.

I recognize what works for me may work for some, but likely not others. And by that same token, what works for you may not work for me.

We need to stop judging our fellow peers with this disease.

We need to stop pushing our ideals on others.

Just because you have type-1 diabetes, just because you’ve figured things out for your body, doesn’t mean it’s a perfect strategy for all bodies with this disease.

This disease is not a box. One size does not fit all.

So, before we get all judgy judgy on each other, stop and think about what you’re about to say and think about whether or not you’d like to be on the receiving end of that comment yourself. It may seem harmless to you, but is it harmless to all around you?

It’s okay to start a conversation, it’s okay to contribute to a conversation, but it is not okay to say that your way is the only way.

Just a little food for T1D thought, my friends 😀

 

2 thoughts on “Type-1 diabetes: the guilt of an A1c

  1. I agree that A1C’s have been the bane of my existence over the past 30 years. And it’s a number that no longer reflects the accuracy of how well a T1D controls themselves, anyway.

    I was at an information night with Medtronic Canada last summer, where they explained that all new models of insulin pump now focus on “time in range” as opposed to A1C, since A1C’s can be manipulated through extreme highs and lows so it’s way less accurate.

    I’m guilty of having less-than-ideal A1C readings over the last ten years. Most of the time, I’ll work out to an extent where I drop, then I’ll over adjust and spend the next twelve hours yoyo-ing back and forth. I’ll admit I’m tired of doctors saying, “We need to get that A1C down…”

    1. I get that! It’s tough not to play the adjustment game, especially with the instant feedback we get from our CGMs and Libre’s, hey. I know time in range is the new percentage that we’re judged on, but I still don’t agree with focusing so heavily on the number, any number. I think we need to look at people as a whole (even those of us with T1D) and work with them to optimize their health as a whole, not just trying to better the numbers. Because once we start focusing in on little things, little changes, the bigger things may change as well.

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