In the talk I gave the other day at a diabetes educator conference, I shared my most recent A1c result with the audience. I did this after very careful consideration, because I generally don’t share that information.
But I decided that the context and situation was right – the room was full of HCPs who still often use A1c as the way to measure the success of a diabetes treatment or technology. Plus, I knew that there may be a lot of concern about the off-off-off label technology I was using. Surely a way to win over the crowd and point to the value of Loop was to play to my audience and give the crowd what they want.
When I announced my A1c to the room, the audience clapped. That’s right; they broke into spontaneous applause. I responded by asking them to stop – to please not applaud an in-range number.
I felt extraordinarily uncomfortable hearing the applause, because I couldn’t help but feel that if instead I’d declared an A1c out of range, the response would have been the sound of sharp intakes of breath. I know this, because I have spoken about high numbers before, and that is the noise a roomful of HCPs make when I talk about double-digit A1cs.
This week, I’ve been thinking a lot about how the impact of what we are told about many different aspects of diabetes – and the way things are framed – can be long lasting. And as my head is increasingly in the communication around diabetes complication space, I keep coming back to the need to reframe the way we present diabetes.
My newly-diagnosed self wouldn’t have batted an eye lid if I heard of HCPs applauding at an in-range A1c, because that was what I was told was a measure of success, and we applaud success, right? Just as that newly diagnosed me truly believed that someone being accused of failing to care for themselves because they had developed diabetes complications was a fair call.
These were the beliefs that were anchored in my mind as the absolutes of diabetes. But all they managed to do was anchor me to feeling as though I was constantly failing.
It took a long time to overcome those biases that seem to be the lifeblood of the diabetes narrative. I wish it happened sooner. I wish I hadn’t been anchored down for so long. Now I understand that we can acknowledge effort, but not applaud a number. How liberating this is; how much lighter I feel!
More musings on A1c
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March 23, 2018 at 7:18 pm
Jeff Foot
Nicely explained Renza.
The headmaster at the secondary school our kids went to made a constant point of talking about effort as well as attainment (and also always described pupils as “our young folks”). He felt very strongly that the success of managing to remain determined and focused should be recognised and applauded as much as the success of achieving great exam results, because otherwise how else do you continue to encourage people to keep trying?
He was very unusual in my view, but exemplifies the attitude you’re saying is important for HCPs to have to support the life long efforts required of someone with diabetes. I agree entirely.
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March 23, 2018 at 8:15 pm
Chris Perry
Hi Renza,
I was there on Saturday, and I applauded you, it was in response to you announcing your HbA1c, but I was not applauding the number per se. Having followed your blog for quite some time now I have a small picture of the significant effect hypos have had on your life, and a snippet of the level of consideration and decision making you maintain on a daily basis.
I felt overwhelmed with happiness for you that you no longer have hypos! Please know that we as CDEs talk about Diabetes 100% of our working day, and we are speaking to PEOPLE with diabetes. The numbers are just data, they do not reflect a person’s effort or level of knowledge or their attention to lifestyle factors. Any HCP with an ounce of experience and a genuine interest in people should surely be supporting the whole person, because life happens, and continues to make a complicated management regime even more so.
I applauded your creative brain, and the incredible achievement of making this device that works for you, I applauded your bravery for actually attaching it to your body and running with this concept. I applauded your comment (I can’t remember your words now) – meaning that you are less bogged down by thinking about every little adjustment, I’m genuinely so happy for your new degree of relative freedom.
I could also sense exactly what you were thinking when you asked us to stop, and I felt sad about that, that we are seen as focusing on and celebrating targets above all. I assure you this is not the case for myself and my colleagues.
Thank you for this presentation. I’m sorry you felt so nervous in the beginning. This is really important information to share, I’m so pleased I was there!
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March 23, 2018 at 8:17 pm
RenzaS / Diabetogenic
Thank you so much for your comment and insights, Chris. I really do appreciate it. And thanks for reading!
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March 24, 2018 at 1:11 pm
Rick Phillips
I am often embarrassed by my A1C as well. I was once at 4.3 and my DE gave me the what for. She was upset for being too low. She called it dangerous and absurd. I knew that could never be true, I demanded a recount, they had not gotten enough blood on the in office device. I was really 5.4 and I still got a good talking too. I love my DE and doctor and in this case they saw right through me. I had several deep lows and I was no where near that good or bad depending on how you view things.
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