"I live with an invisible illness"

Image: The author, supplied. 

If you met me and we started chatting, here’s what you’d see:

Most likely, I’d be wearing something stripy; I’d talk too fast and drink too much coffee; I would possibly throw in a quote from a Marx Bros film or The West Wing and it’s probable that I’d be humming ‘Let it Go’ (blame the nine-year-old kidlet for that).

I’d annoy you by taking a photograph of whatever we’re eating and uploading it to Instagram; it’s a given that I would be rocking one of my (very) many pairs of boots and my arms would ‘jingle’ with enamel bangles. I’d be tweeting about the great coffee.

What you probably won’t see is that I have type 1 diabetes, diagnosed when I was 24 years old.

Thanks to a faulty immune system, my body killed off the insulin-producing cells in my pancreas. Without getting all science-y, this basically means that every day I have to give myself the insulin that your body provides automatically. It’s not a matter of inject and forget, however. I self-dose according to what I eat, the exercise I may (not) be doing, the stress I’m feeling, the time of the month and lots of other factors. It’s a fine line between giving too much, too little and just the right amount of insulin. There’s maths involved. Which makes me weep at times.

Diabetes is sometimes referred to as an ‘invisible illness’ because there really aren’t any physical signs that I have a chronic health condition. I don’t look ‘unwell’ – most days I manage to get out of the house dressed, made-up and appropriately accessorised.

But if you look carefully, there are physical signs. Occasionally, I pull out a pager-like device from my bra and press some buttons. That’s my pump, which delivers insulin into my body throughout the day via a little cannula inserted into my tummy. I also check my blood sugar by pricking my finger, wiping the blood on a strip inserted into a machine.

If I lifted my top, you’d see two devices ‘stuck’ to my skin – the cannula delivering insulin and a sensor reading glucose levels. I look like a cyborg. If you looked closely you’d notice lots of little ‘pin pricks’ from old cannulas and sensors. (And that’s the excuse I’m using for not wearing a bikini.)

But here are the things you won’t see; the things that make diabetes invisible:

• You won’t know that every day I live with the knowledge that diabetes-related complications are a reality and a possibility in my future.

• I probably won’t tell you about the exhaustion that diabetes brings or that I had a hypo (low blood sugar) overnight that kept me up for about three hours when you were sleeping.

• You won’t hear about the ‘other’ side of diabetes – the emotional and psychological side of the condition which can, at times, take me to a very dark place from which it’s difficult to emerge.

• You won’t hear about the frustration I feel at times because the media and general public frequently say silly things about diabetes and think it’s okay to blame people because they were diagnosed with diabetes.

• You won’t hear about the judgement that I experience from healthcare professionals who, while understanding the theory of diabetes, have no idea about the day-to-day of it.

• You also won’t hear about the unspeakable fear that keeps me awake nights, as I worry that I’ve passed on my defective DNA to my beautiful daughter and she too will develop diabetes, or another autoimmune condition.

The truth is, I don’t really want to show you these things. My life is about so much more than diabetes (did I mention my amazing boot collection?) and I don’t want you to define me as ‘sick’, because I’m not. While diabetes adds a level of complexity to my life, it doesn’t dictate what I can and can’t do, and it doesn’t define the person I am. It’s just a part of me – often invisible, but always there.

Diabetes cheat sheet:

Type 1 diabetes cannot be prevented, is an autoimmune condition and isn’t caused by lifestyle factors.

Type 2 diabetes can be prevented in about 58% of cases, but genes play a big part as well.

Renza Scibilia is a diabetes patient advocate and a regular speaker at health conferences in Australia and around the world. She also writes one of Australia’s most widely-read patient blogs and is a writer for many diabetes publications. Last year, she wrote a raw piece about her miscarriage for Mamamia, which can be read here.

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