*this is the most redundant blog post title ever.
Yesterday, I was invited to speak with the Roche Diabetes Care team at their annual meeting so they could hear from a real-life-walking-talking-person-with-diabetes.
The idea of the talk was about how I try to make diabetes – the most complex health condition in the world – simple. Which, as I pointed out at the very beginning, is laughable, because diabetes and simple are words that should never be in the same sentence.
I started by saying that the idea that diabetes is a simple mathematics equation with the factors energy in, energy out, insulin and current glucose level is wishful thinking. There is a lot more than those four factors affecting glucose levels. And thanks to diaTribe, I was able to show them a list of 42 of them!
And I explained that the 121 diabetes decisions I make every day are all my own responsibility, because, you know, we only get about 4 hours of time with our HCP team.
I’m sure there was nothing new in there for them. At least, I hoped that was the case.
‘To manage diabetes, I have had to wear many hats,’ I said, and then listed all the things I have had to become just to try to deal with diabetes. These included:
- A one-person multidisciplinary healthcare team – because my team are not – and should not – be on call to be 24/7.
- A mathematician – because I do use algebra every.single.day. And do fancy pants calculations.
- A detective – because somehow I have to sleuth my way through health advice from Khloe Kardashian and Dr Oz.
- A scheduler – because of the regular ‘check-up’ appointments, complications screenings, blood work and anything else that needs doing.
- Fluent in a new language – the language of diabetese.
- A technology geek – because of all the devices I have stuck to my body and reading to my phone need to be driven by someone. And that someone is me.
- An advocate – for myself firstly, and then became one for others too.
- An engineer – because I did, after all, build my own artificial pancreas (lots of disclaimers after that saying that really all I had to do was follow step-by-step instructions much the same as one does when putting together Ikea furniture with an Allen key).
- Thick skinned – to deal with everyone who wants to tell me what I should be doing better to better manage my diabetes.
- A data analyst – because there is fucking data everywhere.
- A negotiator – mostly negotiating with myself to try to do better.
- A word nerd – because #LanguageMatters (Also, I am incapable of giving a talk and not talking about language it seems…)
- A comic – because finding the funny side of diabetes is sometimes necessary o get through the day.
- A social media whore – because I have found my tribe, love them hard and because so many of them live on the other side of the world, we hang out in the cafes of Facebook and Twitter lands.
The thing about diabetes is that apart from being the very opposite of simple, the thing that all of us living with the condition know is that even those things that are meant to help streamline our management, often add to the complexity.
It was at this point, I spoke about technology. ‘I love technology. I love diabetes technology. I want to be the first person using things. I will jump on a diabetes tech bandwagon as quickly as I can,’ I said. ‘But the thing about technology, is that while it may make some things easier, it can also create more work.’
I spoke about the work insulin pumps can be – the need for very regular glucose checks, the needing to make sure there is enough insulin to last the day, changing sites and checking them for infection, feeling frustrated when there is a technology glitch. And of course CGM – as wonderful as it is – can be frustrating, beeping, alarming and causing nothing but angst.
The tech is great when it works, when it is doing what we need it to do and when we feel that we are able to operate it as best we can. That’s certainly not always the case. And it’s important for people to understand – especially the people who make the technology and are speaking about it – to know that.
That was the take home message from my talk. Well, that and a reminder that even with the myriad hats that I wear to try to manage my diabetes, the hat that is by far the most important is the one that I wear when I am with the people I love, doing the things I love….and that is never, ever diabetes.
Roche Diabetes Care invited me to speak at the meeting. They covered my flights and transport costs.
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March 16, 2018 at 11:09 am
Rick Phillips
See it turned out really well. Congratulations !!
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