It was around this time 18 years ago when I was diagnosed with type 1 diabetes. That 18 years has come with some hard earned lessons that I think, had I known them when I was diagnosed, would have saved me from a lot of worry and frustration. By coincidence, last week I was introduced to someone who had just been diagnosed with type 1 diabetes as an adult. We went for a coffee and these were the things I shared with him.
In hindsight some of these now seem obvious but at the time they weren’t. Here's what I've learned:
1. There's no fixed formula for your insulin needs
In the beginning I thought diabetes was a set of calculations to figure out and master. I just needed to work out my exact basal rates by the hour and my insulin to carb ratios and if I got those right and carb counted accurately that would mean my blood sugars would stay in range.
When my sugars would inevitably go out of range I thought it was because I wasn’t doing it right, I hadn’t got the calculations right and was constantly fiddling with the formulas and settings. I didn’t know the full list of things that can impact your blood sugar and the perils of doing absolutely any unplanned movement with insulin on board. The reality is that dosing insulin is a lot more variable than it seems at the beginning and it doesn’t mean you’re doing it wrong.
2. Don’t treat diabetes test results like exam grades
I’ve written before about how, as an academically minded goody two shoes, I first thought the dynamic between me and my endocrinologist was like one of teacher and student. She’d teach me how to manage my diabetes, I would go away and do my homework diligently, and then I would have my blood tests and they would show what a good job I was doing. This was NOT a helpful way to think about things (see 1. above). When you’re following the instructions (or not, see “burnout” below) but then getting blood test results (specifically hba1c which I still don’t like having) that don’t make you feel good, it’s easy to feel like you’re failing a test and being judged. This can create a negative feeling around your relationship with your healthcare team when what you really need is support from them. It helps to have an honest conversation with your healthcare team about what you need from them and what is most helpful to you.
3. Your diabetes will change, your management should too
My diabetes has changed a lot over time because my lifestyle and phases of life have changed as well. It’s easy to get into a state of inertia where you just do the same thing without really thinking about it, you stick to the same routines and don’t take stock from time to time to see if there is anything you could be doing to make your life a bit easier, or make tweaks to try to increase your time in range. Sometimes it feels like there’s no point in making changes because perfection isn’t attainable, or because diabetes becomes such a background thing that we don’t think about it very much.
Now that I am using a hybrid closed loop it’s easy to tell myself that I’ve outsourced all of the thinking to the algorithm but in reality there are still plenty of variables I can control – the timing of my insulin, the type of insulin, the tech I use, the amount of exercise I do, my stress levels and my routines. I find making the time for small tweaks in what I do more satisfying and sustainable than trying to drastically overhaul my management or diet.
4. Learn as much as you can, not just at diagnosis
When I was first diagnosed I bought loads of diabetes books and studied them closely. That gave me a good grounding in what was going on with my body and I didn’t really try to seek out more information until I was looking for help with dealing with diabetes burnout (see 6 below). Once I got over my burnout I became a lot more energised about learning what was going on in the world of diabetes research, treatments and technologies. While diabetes is very boring to live with, as a topic of interest it’s endlessly fascinating and reading about it helps me stay optimistic and hopeful about the future of diabetes care. Self managing diabetes is its own job so think of this like a special category of continuing professional development.
5. Keep up with technology
I totally get that not everyone is into diabetes technology, but I fully embrace mine. For the first 10 years of living with diabetes I was pricking my fingers to get blood sugar readings and I used a pump that my clinic recommended to me. I had no particular interest in what other types of pumps were out there, or what technology was being developed. It all seemed too hypothetical and irrelevant. I’m now much more experienced at using diabetes technology and aware of what is coming down the track so I can make better informed decisions about what to use (and what to ask my clinic for). After all, these devices become part of our every day experience and it makes sense to give them a decent amount of attention. I’m currently using the Medtronic 780G system and working out what to use next.
But even with the best technology, diabetes management isn't just about having the right tools, which brings me to something I wish I'd known was completely normal...
6. Burnout is to be expected, it comes and goes
There aren’t many things in life that you can’t take a break from if you get fed up.
Diabetes is one of them. The relentless nature of it, the frustration, the interruptions, the alarms, the admin. Sometimes you just don’t want to do it anymore. Then burnout happens.
When this first happened to me I had absolutely no idea what to do about it, it made me feel bad and guilty, and made me want to avoid my clinic. I’d flunked off school, hadn’t done my homework, didn’t want to go to the principal’s office (see 1 above).
I wish I had known that this was common. That feelings of burnout would come and go, to different degrees, over my life with diabetes. It’s OK sometimes to do the absolute minimum to stay safe while you gently coax yourself back to ‘doing diabetes’ again.
There is support available if you’re having a challenge with diabetes burnout and it should be something that we feel we can freely talk about with our healthcare teams. I wish I hadn’t struggled on my own with it for so long.
7. Make your diabetes life as easy as possible
You’re the boss of your diabetes management so it’s down to you to make it as easy as possible to do your diabetes tasks. I think you can view diabetes management as a set of ideal habits so it has been very helpful to learn about the psychology of habit formation. Make the good things easy to do, reduce friction, reduce the amount of thinking you need to do about them and make them take as little time and effort as possible. Try to make your burden as light as you can. A few easy things I do are: order prescriptions through the NHS app and get them delivered; auto-order insulin pump supplies so I don’t have to remember; and keep a stash of all my regular diabetes supplies in a container under the bed so everything is in one place ready to go. Here are some of the other things I do to lighten the load.
8. You don’t have to do diabetes alone
I spent the first 10 years after diagnosis doing diabetes completely in my own head, not really talking about it much and not knowing anyone else with type 1. Finding the diabetes community online was a game changer. I joined Twitter back in 2018 and this led to me attending the TAD talks in London where it was great to meet some of the people I had connected with online. It was such a comfort being able to interact with other people in the same club, making light of annoying things, sharing in-jokes, trouble shooting and supporting each other. It’s not been the same since Twitter changed to X but the communities are still around on other social media channels (mainly Instagram and LinkedIn), in Whatsapp groups and in person events. I would urge people of any age not to try to do diabetes in isolation – the only people who truly understand what it’s like are other people living with the condition.
9. Don't hide it
In the early days it would be normal for me to leave a lunch meeting and bolus somewhere that nobody could see. Many an injection was done in the bathroom. I kept my pump hidden under my clothes. I didn’t like the way it looked. I only told a trusted few about it. I was worried about being judged, or perceived that I might be less able to do my job.
As CGMs came on the scene, hiding diabetes became harder. If it was summer, you could see it stuck on my arm. Now my pump can often be seen on my waistband. I think over the years since I was first diagnosed there has been much more acceptance of showing off technology. It’s often not only accepted but celebrated. I know I am positively influenced by seeing people with pumps and CGMs on show and I feel like being open about my own tech helps to normalise it.
10. You’ll be OK
Finally, if I think back to the 26 year old me who had just been diagnosed, the most important thing I want her to know is, you’ll be ok. Having T1D hasn’t stopped me from doing anything – I’ve worked, travelled, got married, had 2 kids, moved countries, run a half marathon, spoken in parliament and been made an honorary professor. Obviously I wouldn’t choose to have type 1 but it has taught me a lot about my body, I’ve learnt about biology and technology, met some great people, travelled the world going to diabetes conferences and maybe had a richer life than I would’ve had without it. Who knows?
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