I’m a positive person. I’m also a person with diabetes. Does that mean I’m positive about diabetes? I could cry out a resounding YES in response, but I’m not sure you’d be convinced. The truth is that I don’t always know the answer to this myself, so I see this blog as a good opportunity for reflection. The feelings and thoughts I put down here are already relevant to this topic. It is what I define as an important part of my happiness. Writing. Sharing. Capturing experiences by linking them with words.
I was 14 when I was diagnosed. Before that, my childhood had not always been as carefree as it should be for every child, but nevertheless I had sailed through my younger years. Now and again, I’d be called a ray of sunshine. No idea whether it was my bright blonde locks as a child that had that effect on others, but it is true that I’ve always had a keen sense of humour. This underwent a striking evolution from everyday kid jokes to the slightly sharper sarcasm it has become today.
During that evolution, there were plenty of dips after diabetes casually popped its head around the corner to say hello. At first I nodded back with shyness, given that diabetes was just this odd thing that I couldn’t really get my head around, and neither could the people closest to me. Perhaps that’s why the first years had been so peppy. Because I didn’t applaud it as I might now with a charmingly failed kind of conviction. So sorry, diabetes, if I didn’t really welcome you with open arms when we first met, when I was lying dazed on a too-white hospital bed with a sky-high Hba1c value in my blood.
We’re now 12 years on. I have had to deal with plenty of other striking evolutions. Acceptance of my body, of my self-care, of my diabetes, and of my individual as a whole were such unfathomable steps that I just happened to take somewhere along the way. Accompanied all the time by the well-known metaphor of seeing life as a rollercoaster, with all its ups and downs. So is living with diabetes, and all the high and low blood sugar levels.
Aside from giving it space and lots of insulin, one of my main mechanisms for dealing with this damn diabetes is – most importantly – to give it an identity. Diabetes isn’t written all over your face, but why not give it a face yourself? Washi tape, colourful stickers, and a personalised mini chest of drawers for needles, lancets and alcohol wipes are just a few of the items that help individualise my diabetes care. If you prefer to stick to a nylon black diabetes bag to store your diabetes supplies, I still believe that it doesn’t have to be something to get depressed about. Although that’s hard to imagine for someone like myself with such a colourful wardrobe.
Individualisation goes much further than that. It’s about being yourself at work, because secretive injections and/or bolus doses in the toilets aren’t a permanent option. Still, I give a lot of credit to anyone who’s courageous enough to see this as a temporary option. It’s about your personal insulin schedule, because only you need those units of insulin of that specific type at that specific time. It’s about your friends making sure there’s Coke Zero at a summer barbecue, because they know by now that, after a cocktail, that’s what you’ll need to hit if your blood sugar level has to stay within a target range and limits.
It’s about myself posing with a sugar cube on a thermometer, so the world would know for sure that sugar doesn’t literally make me sick. It’s about yourself, on both your worst and your best day. It’s about doing everything you can to finally make a bit of progress. But all we can do is take a gamble, even if we ourselves don’t always know the answer to the question of how we are doing. We are daredevils, even though the autistic side of diabetes can’t afford to be reckless. We take every chance we get, no matter how big or small.
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Sielke is 26 years old and has had type 1 diabetes since 2009. Do you want to know more about Sielke and her attitude to life with diabetes? For more tips and tricks, follow her on her Instagram account @sugarandsick.