Home Health Life lessons after living with a chronic illness for 19 years (and what I wish other people knew)

Life lessons after living with a chronic illness for 19 years (and what I wish other people knew)

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Sometimes I can’t help but look at my life and wonder what could have been different.

In 2004, at the age of five, he was diagnosed with type 1 diabetes.I often write about my chronic illness and advocate for others living with it (you can read my story here), and in 2023, 19 years after my diagnosis, I can’t help but reflect on my journey.

It’s been a chaotic road, and it’s almost impossible not to wonder what life would have been like if I hadn’t been one of those predicted. 1 million Australians have diabetes. Will I be who I am? Will there be the same person in my life? Could I be happier?

I never know But there are some life lessons that I gleaned along the way.

It’s okay to mourn what you’ve lost (even if you don’t remember it).

The other day, while I was taking a walk with my mother, we were talking about how grief is not easy.

She turned to me and said: But you were only five years old. I had no idea what I was missing or what I was going to miss. I think it’s different now. “

she is right She doesn’t remember what life was like before she was diagnosed with diabetes. Living with diabetes has always been normal for me.When I was younger I knew I couldn’t Exactly What other children can do. I knew I had to eat candy when I felt dizzy (but only when I was dizzy) and I had to get an injection.

Now it’s very different. You may not remember the freedom to eat as much as you want without injections, make spontaneous plans, or just live without decision fatigue (type 1 diabetic). 180 additional decisions each day compared to the average person) but I miss it. I miss the feeling of being a little kid instead of having to grow up too fast to survive.

I also lament the future I should have had. I’m her 24 years old. It’s not on the cards anytime soon, but I’m thinking about whether I want kids. However, I am type 1 diabetic, which puts me at a higher risk of pregnancy complications. I also have a short life expectancy, 4.5 times more likely to die young.

I’ve known this for a very long time, but the older I get, the harder it gets. No, it’s human.

It won’t get easier, but it will get stronger.

Even after 19 years, I’m embarrassed to admit that I really hate needles. I feel like a girl.

I am currently using an insulin pump. This is a small electronic device that mimics the way a healthy pancreas works, replacing the need for frequent injections. However, you will need to change your infusion set every 3-4 days by injecting a small cannula somewhere on your body.

Last year I moved in with my partner and started having panic attacks every 3-4 days.

I went through the process of setting the infusion set without fail, held it over my skin, put my finger on the button, and it started shaking. Then I cried and thoughts raced through my head: what if it didn’t work? What if you get ketoacidosis? I didn’t have time to get sick.If so hurt?

And in the end, what else can you inject it with? And it hurts all the time.

When you have a chronic illness, the amount of care you need for your mental and physical health is astronomical. But even if you don’t want to be strong, you’ve learned to be strong.

Now you can change your infusion set in minutes. Still flinch.

It’s okay to ask for help.

I have communication problems. As a journalist, I know how ironic that sounds. I internalize everything I feel. Build a wall to hold me up when cracks start to form around me. Because when you grow up with an invisible chronic illness, it’s hard to feel that people really believe in you when something goes wrong.

A bad blood sugar day usually doesn’t show any external signs or symptoms, such as dizziness, weakness, or nausea. On a normal level, there’s a battle going on under my skin.

I get tired quickly, my immune system is weakened, I am more likely to develop eye, kidney and nerve health complications, and even chronic depression.

I am now learning how to ask for help, how to admit how bad I feel, and how sometimes I can’t keep up with others. However, after a few experiences where I pushed my body a little too far, I was finally able to hear it.

Sometimes it’s nice to have someone help you open a jar of candy.

You are not your diagnostician.

Your diagnosis is what you live with. It’s a roller coaster (sometimes really bad). This is a set of words that medical professionals use to help you. But it’s not you. It’s not your smile, your goals, your dreams. It may affect you and your approach to life, but it should never become your life.

I think this is the most important lesson. And every day I am still learning.

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