I’m a 24-year-old living with type one diabetes—here’s what it’s really like
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Let me start by saying this: no one understands type one diabetes more than a person who lives with type one diabetes.
There’s honestly no easy way to describe it.
When I’m asked what having type one diabetes is like, the question usually falls into two categories: genuine curiosity about how it impacts my daily life, or a shocked exclamation that I don’t look like a diabetic, usually followed by “Oh, I could NEVER do that.”
My answer? If you wanted to survive you would.
After living with my chronic illness for 19 years I’ve become extremely blunt—but this National Diabetes Week (taking place until Saturday 15 July), Diabetes Australia is kick-starting Australia’s biggest conversation about the impact of diabetes in the hope to create change for the future. But how do you even begin to explain the impacts?
So, here’s what it’s really like to live a day in my life.
Every day is the same yet wildly different.
Living with diabetes doesn’t change my basic needs, wants, or desires. What it does change is how I approach them—including everything from work to travel.
An example? Like most people working a normal 9 to 5 job (admittedly with some out-of-hours events thrown in) I roll out of bed between 6 am and 7 am. But unlike most people, my first thought of the day isn’t to cuddle my partner (as much as I would love to) or reminisce about how good (or bad) my sleep was—it’s to drag my ass out of my warm best to test my blood glucose.
Sometimes I sit up and the world tilts, and I know I need to eat something quickly—my hands shaking as I try to find out exactly what my blood glucose is so I can eat the right amount of food—even if the thought of breakfast is incredibly unappealing. Other times I feel great, and I’ll confirm my blood glucose is in range before starting the day with a Pilates workout.
Before I head to work, I test my blood sugar again to make sure I counted the carbs of my breakfast properly and that it’s safe for me to drive. In between meetings and interviews, if I feel dizzy or slightly unwell (we all have those days) I test my blood sugar hourly. I want a coffee? I should test first. Need to drive somewhere? Out comes the trusty finger pricker. Hungry? You guessed it. My day-to-day choices aren’t documented in a Five-Minute Journal—they’re etched in scars on the tips of my fingers.
Those living with type one diabetes an extra 180 decisions every day compared to the average person. And even if I have the same routine and eat the same things every day (which I pretty much do), I can never, ever predict what’s going to happen.
On top of that, there’s the added responsibility of changing the infusion set of my insulin pump, making sure everything has batteries, always carrying snacks, and just making sure I have enough supplies ‘just in case’. My health isn’t something I consider every so often—it’s a constant, never ending thought.
Albert Einstein said, “The definition of insanity is doing the same thing over and over and expecting different results.” This is my life—and the life of the predicted one million Australians living with diabetes.
Food is your friend—and sometimes your enemy.
When I was first diagnosed in 2004, one of the many specialists I had to see to learn how to manage my diabetes was a dietician. I was five, and it was my introduction to the world of counting carbohydrates, looking at the sugar content and the nutritional value of food.
Because my pancreas doesn’t work, I need to be aware of what, when, and how much I eat every day to keep my blood glucose levels within range and to help reduce the risk of developing diabetes-related complications (like nerve damage, kidney failure, and vision loss just to name a few things).
And after staring at the back of food packages and googling nutritional information for most of my life, it’s easy to see why many diabetics suffer from disordered eating.
The way I think about mealtimes and my relationship with food isn’t normal—I have to consider everything that passes my lips, going out to eat is never as easy as picking whatever I’d like off the menu (the fact I can’t eat gluten doesn’t help), and sometimes breaking my ‘normal’ eating habits (like having someone else cook a new dish for me) causes a lot more stress than I would like to admit.
Then add in unwanted advice about what I should or shouldn’t be eating (yes, I can eat dessert) as well as the pressure to keep my blood sugar in range, and food can turn from lifesaving—literally—to another thing to think about day in and day out.
Going out for a few cocktails with my friends is a whole other ball game. But I refuse to hide from life and the life I want to live.
Diabetes never takes a break.
I’ve been lucky with my chronic illness—I’ve never suffered a seizure or been hospitalised from hyperglycemia. But I know people who have.
When you live with type one diabetes, you never get a day off, you never get a break. No matter if it’s a good or bad day, you need to be prepared. It’s not as simple as testing our blood sugar and eating some healthy food (if it was that easy, I wouldn’t be writing this), it’s pushing a boulder uphill, it’s riding a rollercoaster that never stops and sometimes it feels like too much. In a day my blood sugar can swing from 2.0 mmol/L to 18.0 mmol/L and back again. And I have what’s considered ‘good’ control. My mood constantly shifts—I’ve had a few embarrassing emotional meltdowns caused by unbalanced blood sugar—and I deal with headaches, dizziness, nausea, unquenchable thirst, or lethargy at least once a day.
I once said to one of my type one diabetic friends that I wonder if type one diabetes is called “juvenile” because there are moments when it reduces us to an almost infant-like state: pure anger, pure frustration, and pure sadness rolling like waves beneath the surface.
The impacts of diabetes aren’t just physical—they are so much more, and I seem to be discovering a new one every day. It impacts my life choices, my relationship, and my hopes for the future. It impacts my self-worth, my desires, and my dreams. But I’m only 24. My life is just beginning, and I will continue to fight to survive—and to see real change happen.
It starts with people understanding.
