Alex's story
Stock image.
Alex was diagnosed with type 1 diabetes during the first week of Year 9, when he was 13½ years old. After a long summer of constant thirst and a brief visit to the doctor, a blood test confirmed what the doctor suspected. “The diagnosis came as a complete shock. We have no family history of diabetes, and it was as unexpected as it was life-changing. Since then, we have learned that type 1 diabetes can happen to anyone, at any age, and is often diagnosed in children and teenagers.” Alex’s mum tells us.
“The excitement of starting college was suddenly overshadowed by the diagnosis and the need to adjust to a completely new way of life.”
Three months later, Alex was also tested for coeliac disease - another autoimmune condition that commonly occurs alongside type 1 diabetes.
“Unfortunately, although he had no symptoms, the test came back positive. Once again, we had to rethink our approach to food and diet. In many ways, coeliac disease has had an even greater impact than diabetes. With diabetes, you can still eat almost anything - you simply need to count the carbohydrates and manage your blood glucose levels as carefully as possible. Living gluten-free, however, is far more restrictive. You quickly discover that gluten is hidden in an astonishing number of foods, making every day eating and social occasions much more challenging.” Says Alex’s mum.
Alex is now halfway through Year 12 at college and is already thinking about university, possibly in another city. Despite the challenges of living with both conditions, he continues to pursue an active lifestyle. He enjoys mountain biking, skiing, target shooting and, most of all, tramping.
His mum shares that “living with diabetes has undoubtedly helped Alex mature more quickly and become exceptionally organised and responsible. The daily discipline of managing type 1 diabetes and coeliac disease has not prevented him from pursuing the activities he loves or from looking forward to an exciting future.”
At school recently, one of the writing assignments given to the class was an essay. The writing prompt was to write about something that annoys them.
“The example poem we were shown was He Had This Thing by James Norcliff, talking about flies. Since all the various alerts and alarms all my diabetes equipment makes get annoying very quickly and have to be very loud for me to hear, it seemed like the perfect jumping-off point. I was aiming to show how constant and common the noises are. This is not a job where you can clock out; it can be every day and every night.” Says Alex.
Alex’s essay shares the impact of the mental load of managing diabetes, beyond the physical side of the condition. Alex explains, “I think that beyond the stress of actually keeping your sugar in range, it gets quite frustrating when you are out of range. Whenever you are low, or especially when you are high, all the alerts feel far more annoying than they really should be, and you might start to feel frustrated. For me, at least, I flip between not caring enough and caring too much about my sugar levels, and I usually don't correct properly. It's when you need to care and have patience the most that you don't have it.” He has shared his essay below.
“Writing it down, I found there was a sense of catharsis, getting it out onto paper and into the world. I saw how silly it could seem, but I don't think I have really changed how I feel about all of my alarms. They are all still constant, and they are still annoying.”
We ask Alex, what helps, on the harder days? “With my CGM, I can see how well I have kept in range over different periods of time. It feels reassuring to look back and see, wow, I had 82%," or wow, I had 87%. Celebrating the small victories, it feels like it's repeatable, that it isn't impossible.”
Alex’s advice to other young people: “There will be a way to make the noises tolerable. Look into your settings, turn the volume down or set them to vibrate. The alarms, however annoying, are trying to tell you something, so please don't shoot the messenger.”