‘What’s the hardest thing about living with diabetes?’
I was asked this question the other day by someone who is not in any way connected to diabetes. He does not have it himself, does not have a family member with diabetes and doesn’t work in the area.
‘The fear’. I blurted out. I didn’t think my response through; it just came out.
I backtracked and gave my usual answer, where I become a little glib because I’ve said it and written it down so many times. ‘Oh – and you know – it never ends. It’s there all the time. There is no rule book. It changes for no reason.’
I smiled at him. I was back on message.
But later on that day, I realised my initial reply was true. I am scared. We constantly hear that we shouldn’t take our health for granted. I always did. But diabetes has robbed me of that.
What I am scared about isn’t the day-to-day living with diabetes. As much as I complain about it and feel it is a pain in the arse, the truth is that I actually can deal with it. The infusion set changes and sensor insertions and BGL checks are annoying disturbances. Counting carbs makes my head hurt and scheduling in doctors’ appointments far more than I’d like are all really annoying. But I just do them. Begrudgingly.
I am scared about the stuff I don’t know about. I’m scared about complications developing. I’m scared about what might happen and I am scared that these things are going to happen soon.
I’ve come to realise in recent times that the things I fear are becoming more and more a part of my emotional self. Where they used to be a passing thought that I could dismiss with a flick of mental power, now they appear and are harder to deal with.
I find myself having these thoughts more and more – often completely out of the blue. And I can’t just acknowledge them, tell myself it will be okay and move on. They settle in, get comfortable and are there a lot now.
Overwhelming. Paralysing. Frightening. Today these are words I use when thinking about diabetes.
And I fear that the fear is going to actually become unmanageable. I fear that the fear is going to make me stop doing things and stop wanting to do things. And I fear that the fear is going to change who I am and make diabetes a thing that suddenly has moved from being an inconvenience to something more. To something bigger. To something ugly and shameful and devastating. I. Am. Afraid.
It’s time for me to do something about my internal dialogue about diabetes. I don’t want to be afraid of diabetes because then it wins. And while this is not a competition (because believe me, there really is no winner) I have to find the way back to feeling better about diabetes. And I will. I have to.