I’ve been pondering this for so long. It’s a biggie. The link between living life with type 1 diabetes 24/7/365, and the mind of the diabetic in question.
*adopts brace position*
As a diabetic, mental wellbeing is SO freaking pertinent. Vital. Crucial. Mind-blowingly important. And seriously overlooked.
Here’s the thing, as I’ve come to understand it, in my non-medical and non-verified experience:
Type 1 diabetes this is a condition measured by the physical; the black and white nature of numerical results. Our life revolves around the digits as we test and measure and count and dose. BUT it is a condition that could not be further from being black and white because it is driven and governed by hormones. Weird, emotional, invisible, incalculable hormones.
If it were as simple as working out our insulin to carb ratio, we’d all have perfect blood sugars all of the time, quicker than you can say Novorapid.
NEWSFLASH: this is impossible.
Even if you don’t drink, are eating 100% healthy, non-processed foods, living in cotton wool, never do anything sociable or out of routine and are exercising five-seven times a week, you will still get blood sugars below 4, and above 8. I’ve done most of that leg work. It’s cool and all, but chocolate is fun, and so is LIFE.
So why the jeff are we categorically and only measured by the numbers, all of the time, when clearly there’s so much more to it?
I had a HbA1c of 5.8 last year, below 7.0 for the first time since my pancreas quit on me 18 years previously. I was drinking, eating chocolate sometimes, and a slice of pizza here and there. (It’s since gone back up above 7 but hey, memories were made).
So what was this magical formula?
I’d connected/unearthed/paid attention to the missing link between the physical demands of having type 1 diabetes on my body and… *drumroll* my MIND. And more to the point, I’d done something about it. Yoga. Meditation. Self-respect. Self-care.
I didn’t even consciously clock that there WAS an emotional impact of living with the condition (although I was a living, breathing, at times absolute hurricane of an example) for over a decade, because no one encouraged me to be aware of it.
The light bulb went off when I was categorically drowning in the emotional toil, though.
It was, without quite realising it at the time, the reason I started this blog. I wrote back in 2010, on the first iteration of the ‘About’ page: Because in all the reading I’d done, there was nothing out there that told me about what living with this thing is like for a person who loves to live.
I wanted to make sense of my own situation in my mind, AS WELL as addressing the numbers.
Our minds literally have control over our lives – they are our most powerful tool, yet they can be our biggest enemy. Thoughts are just that – thoughts. But we have a tendency to form patterns of behaviour because we think these thoughts more than once, and thus they become our reality. This is tough, and made immeasurably tougher when your reality also involves grappling with an exhausting, relentless and incurable condition.
My life is shit.
I’m a terrible diabetic.
I’m failing at this.
I will never be like my friends.
I honestly think that a sustained period of not ideal numbers on the blood sugar scale is a reflection, not the cause of a period of negative thoughts. Stress will get you because, as mentioned, it’s all about hormones, innit?
We constantly berate ourselves for not being good enough (because we’re measured by the numbers, and the numbers suggest we’re either right or wrong and nothing in between), yet if we were at least made aware of how dangerous (and more often than not untrue) those thoughts are that say we’re a terrible diabetic, it would be easier to maintain perspective, which keeps motivation higher and stress lower because you cannot fail if you’re trying, and the numbers will follow because you are giving it your best, and knowing that that is enough. There is no such thing as being awful at this – we are constantly learning, growing, evolving and adapting – to our mood, to stress, to the weather for god’s sake, and yet we are never offered this clarity.
So why then, despite all the amazing technological and medical advancements that we’re so lucky to have, is there such a big gap in the psychological support that’s so crucial to making all this kit and medicine work for us? I appreciate that there are huge, crippling demands on our incredible health service, and this is far from the only or most debilitating condition in the world. I know that this is now a *thing*; there are murmurs in professional circles, and discussions at conferences. But there must be a reason why our HbA1c levels are among the highest in Europe…
It’s no wonder the diabetes online community are so vocal, and peer-to-peer support has become such an important tool in self-management. Until the birth of the internet, we were all wading through this alone.
And it’s not that we’re drowning in it all of the time. I can go for days where I don’t see my condition as anything more than background noise, and I’m fine and healthy and living and happy and diabetes is just a thing that I have, that I manage.
But sometimes, as you crash around at 3am with a low blood sugar, struggling to make sense of your thoughts because you can’t really breathe or see, you wonder if you can do this.
But you just do. Because the numbers are screaming at you, and it’s the numbers that matter the most.