Three life lessons from 21 years of living with type one diabetes
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This National Diabetes Week (running until Saturday 19 July) our Online Editor shares some more life lessons as she reflects on 21 years of living with type one diabetes.
Who knew that a Barbie doll with an insulin pump and a pretty blue dress would make me burst into tears early one morning?
I was diagnosed with type one diabetes in 2004, at the age of five. Growing up, I rarely saw someone like me in the media. The closest (and most memorable) moment was reading Ann M. Martin’s The Baby-Sitters Club series and the pure joy I felt when in The Truth About Stacey it was revealed that Stacey McGill (the coolest baby-sitter in my opinion) was also a type one diabetic. She was someone like me – a young woman battling a chronic, invisible illness who understood what it was like. Yes, she is fictional. But to a primary school student with a vivid imagination, she felt real. She felt like a friend.
So, earlier this month when Mattel unveiled its first Barbie with type one diabetesv – complete with a pink insulin pump, continuous glucose monitor (CGM), heart-shaped medical tape, and a phone that displays a CGM app for tracking blood sugar levels – it was hard to hold back the tears. And I wasn’t the only one, because as the news circulated across the online diabetic community, Barbie fans wrote beautiful, heartbreaking comments about how much this moment meant to them.
Mums wrote about buying them for their children, women in their 50s wrote about how much it would have meant to them growing up. Young women like me hit ‘pre-order’ without a second thought to heal our inner child.
We feel like we’ve finally been seen.
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Every year when National Diabetes Weeks rolls around, I decide to put pen to paper (or fingers to the keyboard) to share a little bit of insight into the chronic illness I and 135,000 Australians live with. This year, following the launch of the Barbie and the anniversary of 21 years of living with type one diabetes, I thought I would share three more life lessons I’ve collected throughout my journey.
You can read my original four life lessons here.
And for any type one diabetics out there reading this, I see you.
Diabetes is not ‘one-size-fits-all’
Anyone can be diagnosed with type one diabetes at any age. While the approach to management is the same – injecting insulin, monitoring and treating blood sugar levels and living a healthy lifestyle – over the last two decades I’ve learnt that is there really is no “one-size-fits-all” approach. It’s been a hard lesson but the realisation that I could do the same thing every day (wake up at the same time, do the same exercise routine and eat the same food) and I would still be fighting an uphill battle has been freeing.
As a chronic perfectionist, it’s easy to feel like a failure when living with a chronic illness. It’s easy to feel like I’m falling behind, even though everything I’m doing is technically right. From check-ups with my endocrinologist to scrolling social media and seeing other diabetics talk about how they keep their blood sugars balanced while running marathons, jumping off cliffs and lifting weights – all while looking like an Abercrombie and Fitch model while doing it – there have been many moments when I’ve thought “But why can’t I? What am I doing wrong?” It’s a crushing feeling trying and failing to control a chronic illness.
But something I’ve had to remind myself lately is that what works for them might not work for me. And it doesn’t mean they don’t have late nights, messy, emotional days or moments when they want to scream into a pillow. They’re human. So am I. And it’s okay not to be perfect.
You’re not alone
With no known cause and no cure, being diagnosed with type one diabetes can feel like playing a game of Russian Roulette – you can never exactly know what’s going to happen next.
According to Diabetes Australia, diabetes is the epidemic of the 21st century and the biggest challenge confronting Australia’s health system. There are currently almost 1.5 million Australians (about 5.5 per cent of the population) living with all types of diabetes (including type one, type two and gestational diabetes) along with up to 500,000 people living with silent, undiagnosed type two diabetes.
Those numbers are staggering. And heart breaking.
Type one diabetes (and I’m sure both type two and gestational diabetes) is an incredibly isolating illness. It comes with physical and mental challenges and it’s not unusual to feel exhausted, frustrated and worn down. And because it’s an invisible illness, no one can really see how you’re feeling – everything is happening below the surface. But after opening up to my loved ones, asking for help and validating my own feelings, I feel less alone. They might not ever truly understand – that’s when I turn to the small type one community I’ve built for myself – but it doesn’t feel like a fight I have to face by myself.
And the small things they offer – a shoulder to cry on, a ear to listen to my frustration and a hand to open the lolly jar – makes all the difference.
Life doesn’t have to stop
There was a moment early in my diagnosis when my mum was told I would never be like other kids. This is true. I will always have to make an extra 180 decisions a day about my health. I will always have to inject myself with needles and I will always be thinking about my diabetes. But that doesn’t mean I have to stop living my life.
All of these things impact me in different ways, but I refuse to let them stop me from doing the things I want to. I’m working my dream job with HerCanberra, I travel, I teach Pilates for fun, I do things that bring me joy and I refuse to leave this Earth as a young woman with a lower life expectancy – 10 to 12 years less than the general population – not living my life on my terms.
As Barbie said in Greta Gerwig’s Barbie movie: “I want to be part of the people that make meaning, not the thing that is made.”
Otherwise, what’s the point?
