There is a dance I do with diabetes each and every day. I praise, celebrate and highlight the good; I avoid, shut out and ignore the bad. The things that scare me are pushed away – as deep as they can go. When they threaten to rise to the surface, I do the equivalent of sticking my fingers in my ears and start chanting ‘la, la, la’ so they recede to where they belong. Out of sight. Out of mind.
I’ve done this for as long as I’ve had diabetes. From day one, I pushed away the ugly and scary images of diabetes complications. I conveniently ignored the warnings and threats. Obviously. Because no one wants to be scared or warned or threatened the day they find out they have a life-long chronic health condition. Or ever.
I am scared. Diabetes scares me a lot. It always has, but for some reason, it is more at the moment. I don’t know why. Nothing has changed. There has not been a frightening experience or a noticeable change in anything. But as days and weeks and months and years as a person with diabetes gets crossed off some imaginary calendar, I am suddenly feeling that it is a countdown to where the really difficult things start.
I worry about what each passing hour is doing to my body and to my mind. If I’m being particularly forgetful, I wonder if it is because my head is so full of diabetes considerations that there is no room for a synonym for fear (dread, anxiety, terror, dismay alarm….) or recalling what day my kid has library each week.
But thinking about it more, I think the fear comes from the lies we are sold about our diabetes. I was promised the day I was diagnosed by a lovely, but most likely completely out of touch doctor, that diabetes is a matter of maths and that if you do the equations properly, it can be easily controlled.
Diabetes can’t be controlled, and with each moment of failure – and there are many and they are constant – I have feared the consequences. And I fear diabetes. With each missed calculation or out-of-range number or confusion about how the hell this thing really works, I see failure. And fear.
Diabetes is not a matter of maths, and the idea that I can control it results in a constant state of high alert as I pretend to be a body part that, when working, is pretty damn perfect. I am not perfect. In any way. And neither is the way I manage my diabetes. It’s messed up. And I’m messed up about it.
And now, as always, there are the fears. And they seem bigger and bolder all the time. I fear diabetes-related complications – long- and short-term. I fear losing the ability to take care of myself and care for others. I fear diabetes becoming so intrusive that I am unable to do anything else. And I fear diabetes becoming the first, last and only thing others think about when they see me. Perhaps most of all, I fear diabetes becoming the first, last and only thing I think about when I see me…
I wonder just how differently I would feel about diabetes – the known and unknown – if I was told at diagnosis that I would get this wrong more times than I got it right. And that was perfectly okay, understandable and acceptable. I wonder how much less significant the feelings of failure would be. And how much more in check my fears would be.

9 March, 1998. 37 days before diagnosis.
8 comments
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August 31, 2016 at 7:08 pm
Rosie Walker
What an honest post & it’s so hard to know, isn’t it? There is always the ‘what if’ factor’ & you can’t go back and test it, sadly. I have reflected a lot on how the environment and messages at diagnosis are crucially important, especially in creating expectations or ‘mis-expectations’ (e.g. ‘once you’re stabilised…’ or ‘it will be like cleaning your teeth’ and other platitudes) It seems now that there is some evidence that the quality of communication at the start and at medication changes does make a difference (www.introdia.com). I’m sure your words, as ever, will ring true for many others. Will be sharing! take care xx
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August 31, 2016 at 7:26 pm
Jeann
Wasn’t I lucky to have an endo who told me that diabetes is irrational and that it doesn’t follow any rules.
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August 31, 2016 at 8:44 pm
Lis Warren
Take heart Renza – I’m certain this will pass. I recently joined the Joslin Medallists group, consisting of ppl internationally who’ve had T1 for 50 yes – and many much, much longer – and there are thousands of us who live well, happily and long with T1. And yes, we all get it wrong and guilt abounds when this happens, but we move on and try to let it pass. Take care lovely lady, be gentle on yourself and above all, enjoy the good things life offers to the absolute FULL! 💙 And remember: diabetes is only a word, not a sentence.
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August 31, 2016 at 11:14 pm
Gautam
Wonderful. While reading your post, I was feeling as if someone had taken my jumbled thoughts and made beautiful poetry from it. Thank You for a wonderful and truthful post. Have been a type1 diabetic for nearly 30 years, and am daily witnessing children struggling, feeling guilty and developing a complex personality, which I am certain will also make them fearful.
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September 1, 2016 at 4:24 am
Karen
Yes. All of this. I relate so much to all of it!!
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September 1, 2016 at 11:54 am
Rick Phillips
Oh do not even get me started on how we get started. Grrr, the only thing is my start story started before I started so I figure half the damage was already done.
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September 2, 2016 at 9:48 am
adiabeticabroad
I can definitely relate to having felt this way. Thank you for this post.
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September 9, 2016 at 1:13 pm
tl
Thank you so so much for this post. I am 25+ years in and have been struggling so much with ageing. It seems like there are many many more things that diabetes plays a role in than I was ever told (trigger finger, carpal tunnel, bursitis). You’ve articulated so beautifully a place I inhabit and I’m really grateful for how you’ve described it. I have always thought that diagnosis, care around that time and age at diagnosis are really important factors in ongoing attitude/ ability to manage. I’m only now working through the trauma I experienced at this time, having ‘soldiered on’ most of my adult life. Thanks again. Will keep reading.
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