The longest queue in the exhibition hall at ADA was not people waiting to see an exciting new therapy breakthrough in diabetes. It was not interest in the latest shiny and bright new device. It was not even a line for free coffee.

No. The longest queue was for on the spot A1c checks. Two booths were doing them – Abbott and A1cNow Systems. Abbott had run out after a couple of days, but the A1cNow folks managed to keep up with the demand at their booth.

A couple of my mates with diabetes and I had commented at the never-ending line of HCPs so eager to know their A1c. Why was this the attraction of the exhibition hall?

On the final day the exhibition hall was open, I was doing a last wander around. End of conference fatigue was clearly settling in – the reps on the stands were a little less enthusiastic about approaching people walking by, and conference delegates had lost the pep in their step and seemed to be drifting a little aimlessly. Or maybe people just needed more coffee. But despite the reduced buzz, I saw that yet again (or maybe still) there was still a queue snaking its way around the A1cNow stand.

‘I need to try to understand why they are doing this,’ I said to the friend I was wandering around with. ‘Let’s go and ask them.’

So, we introduced ourselves to a few of the people standing in line. They were health professionals and were happy to chat.

‘So,’ I started. ‘I guess I’m trying to understand just why you are wanting to get your A1c checked. Do any of you have diabetes?’

They all shook their heads. Their responses ranged from ‘I’m just curious’ to ‘It’s free and I many as well have it done.’ One person said, ‘I have a family history of diabetes.’

One of them asked me why I was asking. ‘I’m really understand to know why there seems to be such a keen desire to know what your A1c is when it kind of doesn’t really matter. I generally avoid getting mine done and I am meant to have it checked every three months. I know people with diabetes who have gone years not having theirs checked. For us there is a lot tied up in it. We feel judged by it. It’s often presented as a way to measure our success as a person with diabetes. We are told we are ‘good’ or ‘bad’ depending on that number. I don’t know too many people with diabetes who would voluntarily line up to get it done really.’

Back home, and I was talking about this with my gorgeous neighbour.‘It was the longest queue at the conference. More people wanted their A1c than to get a coffee!’ (Admittedly, this could have something to do with the state of coffee in the US, but maybe not.)

My neighbour rolled her eyes. ‘It’s like at parties when someone sees you do a blood sugar check and wants theirs done. You know – they get all excited and hold out their hands ‘Do me. Do me!’and then you do and it’s four or five and then you do it again and it’s still four or five, and they’re all excited and ask, ‘That’s good, right.’ And then yell out to everyone about how ‘good’ their number is and then they see the 14 on the meter when you do yours and shake their heads and tell everyone how crap that is.’

She’s right. That’s EXACTLY how it happens!

But returning to ADA… I thanked the HCPs waiting patiently in line and walked away, sighing. I wasn’t getting my A1c checked, there was no need for me to be there. Because getting that done takes the right mindset, and a strength that I just wasn’t feeling at that point. I hadn’t psyched myself up and given myself the pep talk I need before having that measurement handed to me.

And then, it all circled around to another example of ‘doing diabetes’ at different conferences, and my similar annoyance at the long lines for hypo simulators. Or my outright displeasure at people whacking diabetes devices on their bodies to learn what living with diabetes is all about.

Setting aside the very high likelihood that I am turning into a grouchy old woman, I really think that these sorts of exercises are problematic for PWD. No one in that A1c queue was feeling any anxiety about the number the machine was going to spit out. I asked if they were worried and they all shook their heads. It was just a thing to do at a diabetes conference for them. Most likely, they were going to come out with an in range number that they would forget as soon as they walked to the next stand.

Hypo simulators make people feel a little wonky for about five minutes after they get out of them and then they are back on solid ground, not thinking about what is really going on with their glucose levels and how they will affect them for the remainder of the day.

And after wearing a pump or a CGM for a week, it can be returned and never thought of again.

I have been criticised when I have said that it is only people with diabetes who truly understand the impact of diabetes on our lives. I’m willing to wear and own the comments I make. I say this without malice or by trying to limit or minimise the experiences of those living around us. I just don’t understand why there is this idea that by ‘doing diabetes’ or rather doing some of things we have to do as part of our diabetes is really useful.

I would love it that if of HCPs lining up to have a pointless A1c check done, they had sessions in the booth given by PWD where we had a chance to speak about why some of us are so anxious when it comes time to having ours checked. We could offer suggestions about how to talk about results in a way that makes us not feel measured or judged.

And instead of hypo simulators, how about a panel of people with diabetes explaining just how we feel about hypos and how they affect us. When I did this at HypoRESOLVE, the researchers and clinicians were astounded and surprised at what I had to say.

There are a lot of ways that people not living with diabetes, but living around it, or working in it can get a better understanding of how we truly feel about having diabetes in our lives. I just don’t think that a one minute, five minute or even weeklong exercise is the right way to get that insight. The best way is to listen to us.

Advertisements