Life lessons after living with a chronic illness for 20 years (and what I wish other people knew)
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To mark National Diabetes Week (running until Saturday 20 July), our Online Editor reflects on 20 years of living with type one diabetes.
Sometimes it’s hard not to look at my life and wonder what could have been different.
In 2004, at the age of five, I was diagnosed with type one diabetes. While I often write about my chronic illness and advocate for others living with it (you can read my story here), 2024 marks 20 years since my diagnosis, and I can’t help but reflect on my journey.
Because it’s been one hell of a chaotic ride – and it’s almost impossible not to wonder what life would have been like if I wasn’t one of the predicted one million Australians living with diabetes. Would I still be where I am today? Would have the same people in my life? Would I be happier?
I’ll never know. But there are a few life lessons I’ve collected on the way.
It’s okay to mourn what you’ve lost (even if you don’t remember it).
The other day, while on a walk with my mum, we were talking about how grief isn’t linear.
She turned to me and said “It’s like when you were diagnosed, I mourned for the life you could have had. But you were only five—you didn’t know what you were missing out on and what you would miss out on. Now, I expect it’s different.”
She’s right. I don’t remember life before my diagnosis— for me, living with diabetes has always been normal. When I was younger, I knew that I couldn’t do exactly what the other kids could do. I knew I had to eat lollies when I felt dizzy (but only when I was dizzy), and I had to have injections.
Now, it’s very different. I may not remember the freedom of eating whatever I want without injecting, of making spontaneous plans, of just living without decision fatigue (those living with type one diabetes an extra 180 decisions every day compared to the average person) but I miss it. I miss the feeling of being a little kid, instead of one that had to grow up way too fast just to survive.
I also mourn the future I could have had. I’m 25 – it’s not in the cards anytime soon but I’m thinking about if I want children. But as a type one diabetic, I have a higher risk of complications with pregnancy. I also have a lower life expectancy and I’m 4.5 times more likely to die young.
I’ve known this for a very long time, but as I age it hits harder. And I’ve learned it’s okay to mourn and grieve the life you could have had, the one you may have envisioned for yourself. It’s nothing to be ashamed of, it’s human.
It doesn’t get easier – but you get stronger.
It’s embarrassing to admit that even after 20 years, I utterly, truly detest needles. I have a very vivid memory of hiding in a corner of my room crying not long after being discharged from the hospital, my mum begging me to let her inject me, just so my body could continue to survive. Some days I still feel like that little girl.
Currently, I’m using an insulin pump, a small electronic device that mimics the way a healthy pancreas functions – replacing the need for frequent injections. However, every three to four days I need to change the infusion set by injecting a small cannula somewhere in my body.
Last year I moved in with my partner and every three to four days, I started having panic attacks.
Without fail, I’d go through the process of setting up the infusion set, holding it over my skin, fingers on the buttons, and I’d start to shake. Then I’d cry, thoughts racing through my mind: what if it didn’t work? What if I went into ketoacidosis? I didn’t have time to be sick. What if it hurt?
And then—eventually—I’d inject it because what else could I do? I want to live. And it always hurts.
The amount of care you need to take with your mental and physical health when you have a chronic illness is astronomical—because it never gets easier. But I’ve learnt you do get stronger, even if you don’t want to.
Now, I can change the infusion set in a few minutes. I still flinch though.
It’s okay to ask for help.
I have an issue with communication – and as a journalist I know how ironic that sounds. I internalise everything that I feel; build walls and hold them up even as they start to crack around me. Because when you grow up with an invisible chronic illness, it’s hard to feel like people genuinely believe you when something is wrong.
When I’m having a bad day with my blood sugar, I don’t normally exhibit externally visible signs or symptoms – I’m dizzy, weak, or nauseous – but the truth is that while I may look fine and I may be functioning on a normal level, there is a battle happening underneath my skin.
I get tired quicker, I have a weaker immune system and I’m more likely to develop health complications with eyes, kidneys, nerves, and to top it all off, chronic depression.
I’m only now just learning how to ask for help, to admit how sick I feel and that sometimes I can’t keep up with everyone else. It’s taken a while (years to be exact) but after experiencing a few times where I pushed my body a little too far, I’ve finally learned to listen to it.
And sometimes it’s nice to have someone help you open the lolly jar.
You are not your diagnosis.
Your diagnosis is something you live with. It’s a rollercoaster (sometimes a really sh*t one). It’s a string of words used by medical professionals to help them help you. But it’s not YOU. It’s not the way you smile, your goals, and your dreams. It may influence you and how you approach life, but it should never become your life.
I think this is the most important lesson – and every day I’m still learning.
