Navigating hyperglycaemia avoidance and emotional wellbeing in type 1 diabetes
I’ve been meaning to write this blog for a long time. It’s really been a case of classic Tony: Olympic level procrastinating, the Rembrandt of putting things off, the Messi of messing about without achieving.
I think the past couple of years, though, have really helped get me to a place where I can make a start. It’s been a really emotional time. I lost my brother in 2022 and then my dad died suddenly in April last year. I think I went into auto-pilot with my diabetes. Fortunately though, I was assisted by some great tech in the form of Tandem’s t:slim with Control-IQ, ably supported by the Dexcom G6 (now G7). For me, during this tumultuous time, my type one diabetes (T1D) was somewhere well down the list of worries, something which it hasn’t always been.
Tony prepares to refill his insulin pump and change his site. Source: Tony Fox.
I’ve always felt incredibly passionate about the mental and emotional aspects of our condition, having been through several — no scratch that — MANY periods of burnout and the associated bouts of depression. This is something I feel we don’t talk about enough (even more in T1D men): mental health in general, and particularly health related aspects of our emotional wellbeing.
Following some sessions with a clinical psychologist a few years ago, I found lots of intertwines between my condition and my personality. Having been diagnosed so long ago and at such a young age, I’m always interested in how much my relationship with diabetes has dictated who I am and what I do (in terms of behaviours and emotions).
Diabetes UK Professional Conference: mental health and emotional wellbeing on the agenda
In April of this year, I was selected as a #dedoc° voice to attend DUKPC 2024 — the Diabetes UK Professional Conference — in London. It was a massive honour to be awarded a scholarship. I was really proud to be part of a small group of T1Ds bringing our lived experiences of the condition to the largest UK gathering of healthcare professionals (HCPs) specialising in diabetes care and research. Attending the conference gave me the opportunity to listen to some incredible presentations on a wide range of subjects. Of particular interest to me were the sessions on advances in research, and also the emotional and psychological aspects of living with diabetes.
Tony and other #dedoc° voices attend Diabetes UK Professional Conference, which took place in April 2024 in London, to represent the voice of people living with diabetes. Source: Tony Fox
On Friday morning in the main auditorium there were a series of talks on how the changes in diabetes management technology were changing the ways that psychological distress presented in clinic. The session highlighted these issues and how they could be addressed from a research, clinical and lived experience perspective.
Dr Vicky McKechnie, a clinical psychologist from Imperial College London, presented a session called ‘Technology and Hyperglycaemia Aversion’. This was followed by a session called ‘Understanding And Responding To Psychological Issues With Technology’, presented by Professor Pratik Choudhary and Dr Nicole De Zoysa.
Hyperglycaemia avoidance in type 1 diabetes
Dr McKechnie’s session was a real light bulb moment: it was like she was reading my notes, describing my relationship to my condition, in scarily exact detail. I’d not realised before that hyperglycaemia avoidance was such a defined thing and her description of the psychological behaviours matched my emotional reaction every time I ate, watching the subsequent and predictable rise in blood glucose from my CGM.
The definition of hyperglycaemia aversion seemed to fit me exactly. Having been diagnosed in the late 1970s, the fear of complications hung like a sword of Damocles at every clinic and GP visit. This was a time long before #LanguageMatters: terms like “bad diabetic” were all too common, and I grew up coming to fear the implied ‘threats’ of blindness, amputations and kidney failure if my control was anything but perfect. ‘Technology’ then consisted of home urine tests and a glass syringe, a whole lifetime away from where we find ourselves today with hybrid closed loops. This feeling of not if, but when, I’ll get complications was burnt into my subconscious in those early years of living with my condition.
Tony’s type 1 diabetes medical alert and awareness tattoo. Source: Tony Fox
Staying as low as possible meant some form of perceived control amongst the day-by-day chaos of diabetes. I’d always prefer the possibility of hypo if it meant I wasn’t high and consequently running the risk of complications later on in life. For me, it was the lesser of two evils. I could actually do something about a low, pop in a few jelly babies, wait a few minutes and pop some more if I was still low. Sooner rather than later, I’m no longer shaking like Shakin’ Stephens and Robert’s your Father’s Brother.
Being high was massively problematic though, particularly in the days before the convenience of insulin pens and decent insulins. Having to correct and then wait hours for my blood glucose to drop meant that those hours were slowly adding ‘currency’ to the imaginary ‘bank account of risk’ that could see me lose my sight, kidneys or my feet. For me, it was an easy choice, stay as low as possible. Far better than complications.
Diabetes technology and mental health
Over time, better and smarter blood glucose meters, then flash glucose monitors and CGMs, came along and made walking the tightrope a little less cumbersome. The downside is that a lot of us started to micromanage our diabetes. Being a programmer by trade with an interest in data, I probably obsessed even more than most with numbers and stats. It’s no coincidence that since having access to better tech, I’ve had more episodes of burnout. The perfectionist in me is always trying to achieve absolute control over a condition that is impossible to get right all of the time.
Following on from Dr McKechnie’s presentation, Professor Choudhary’s and Dr De Zoysa’s session contained some brilliant guidance on how HCPs can respond to the psychological impact that technology can have on type 1s. One of the takeaways from this was Professor Choudhary’s advice (and I’m paraphrasing this because I’d forgotten the exact words): “Measure > Eat > Inject > Forget”. Basically check your blood glucose, eat the meal, evaluate and dose the appropriate amount, and then just let the insulin do its job. Yes, your blood glucose will rise but the insulin will sort that at some point over the next few hours. Looking at your CGM won’t make it work any faster or better, and it’s only likely to feed your hyperglycaemia avoidance in the meantime.
Since April, having tried my best to stick to that sage advice, I’ve been amazed to find myself a little less anxious. It’s been hard. I think I’m too pre-wired now to completely stop checking my t:slim and/or Dexcom app for the two hours after dosing, but I’m getting there. It seems to be working though. Tonight, I had pizza, split bolus a couple of hours ago but I’ve not looked since. Don’t intend to, either. The alarms will do their job if I’m low, they’ll do their job if I’m REALLY high (because I’ve tweaked the Dexcom G7 settings) and Control-IQ will hopefully do its job overnight. God bless Professor Partha Kar for his amazing drive and vision in the field of hybrid closed loop for T1Ds, Dr Mohammad Karamat, Karen Bartha DSN and all the other amazing folks at my clinic at Heartlands in Brum.
Technology isn’t a cure. It just makes the rubbish of living with T1D less rubbish, easing the burden massively and making life more normal and controlled. Big wins such as going to sleep without worrying whether or not I’ll wake up. That sounds dramatic, but I now realise I used to live with that feeling of dread by probably emotionally blanking it all off. The gallows humour of having T1D.
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This article was originally published on Tony’s blog, Type 1 Tony, on 29 May 2024.