health

'I'm terrified I've passed my genetic condition onto my daughter. It keeps me up at night.'

This week is National Diabetes Week in Australia. But for me, every week for the last 18 years has been diabetes week. This is how long I have lived with diabetes.

Most people know someone with diabetes and considering that there are 1.2 million people in Australia diagnosed with the condition, that’s not a surprise. (There are another 500,000 with type 2 diabetes who don’t even know they have it!) However, despite being very common (or maybe because it is common), there is still a lot of misinformation about diabetes. As someone who deals with it every day, it can get a little bit annoying at times. And by ‘little bit annoying’, I mean it makes me swear like a trucker.

"There is still a lot of misinformation about diabetes." (Image supplied)

I have type 1 diabetes which is an autoimmune condition. In type 1, my immune system decided – for some unknown reason – to attack the insulin producing cells in my body so now, I have to act like a pancreas and do it manually. That wouldn’t be a problem if insulin was a set-and-forget drug. But doses vary according to pretty much every factor you can imagine: food, exercise, stress, hormones, adrenalin, being sad because the heel on my favourite boots just broke, eating too many carbs, eating not enough carbs.

Type 2 diabetes, which is by far the most common form of diabetes (about 90% of cases), occurs when the body becomes resistant to insulin. The body may also lose the capacity to produce enough insulin. Type 2 diabetes has strong genetic risk factors. In almost 60per cent of cases, it is preventable.

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Because there is so much misinformation about diabetes, I spend a lot of time gently correcting people when they say things that are wrong and often quite offensive. A lot of times their comments are just poor manners. Frequently I find, the most difficult part of living with diabetes is having to deal with the misconceptions and assumptions people make about the condition.

I wish people didn’t think that it was okay to comment on what I am eating. I am a grown up and capable of deciding what goes into my mouth.

Also, even though Dr Oz may have said he can cure diabetes. He can’t. And neither can random celebrity chefs or your mate’s personal trainer! I know Khloe Kardashian once said ‘kucumbers kan kure’ diabetes, but they can’t (kan’t?) and also, she’s not a doctor so she probably shouldn’t provide medical advice.

I really wish that if someone sees me injecting insulin they wouldn’t say ‘Ew – do you have to do that here?’, ‘I could never do that to myself’, or ‘I hate needles.’ Because truthfully, ‘Yes – I do have to do that here otherwise I will feel unwell’, ‘You absolutely could do it to yourself if it were a matter of life and death and it kinda is’, and ‘Actually, I really hate needles too’.

Mostly, I wished people would remember that behind the diabetes diagnosis is a person trying to manage a busy life AND diabetes. Spare a thought for the new Prime Minister of Britain. She’s got to manage Brexit and type 1 diabetes! There is a lot more to diabetes than the medication I take and the food I eat. The emotional side of it is probably the hardest thing for me to manage.

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Why? Because it manages to weave its way into most parts of my life. I have a beautiful daughter and getting her into this world took a herculean effort thanks to the extra work diabetes demanded before and during my pregnancy. And now, I am terrified that my dodgy genetic matter has been passed onto her. THAT is what keeps me awake at night when thinking about diabetes – not the thought of sticking a needle into my own skin.

You know how on the news when they talk about diabetes and there is always stock footage of an overweight person eating a hamburger? That’s not okay. Because it perpetuates the myth that someone asked to get diabetes. It doesn’t matter if it is type 1 or type 2 diabetes, no one asks to get it. Stigmatising a health condition that is bloody hard to live with is nasty and helps no one.

"The emotional side of it is probably the hardest thing for me to manage." (Image supplied)

You might also have heard diabetes can cause some pretty nasty complications. On the day I was diagnosed, I was warned about these and I can still remember the terrifying photos of eyes, feet and kidneys affected by diabetes. It didn’t make sense at the time, but it terrified me nonetheless.

It still does. I have the whole complications thing in much better perspective now and I do the best to manage my diabetes as well as I possibly can in the hope that I will live a very long and healthy life, with as few diabetes-related complications as possible. If I do develop complications, I want to be able to still live a really full life.

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But I also understand how important it is to talk about all the impacts diabetes can have, not only on me, but on our society generally. This week, as Manager of Type 1 diabetes Advocacy for Diabetes Australia I’ve been involved in our new campaign – “Amputations – 4,400 reasons to take diabetes seriously.”

It is tough to confront the reality of diabetes but it is something we need to do if we want to see our governments, at Federal and State level, implement the policies we need to support people with diabetes. There are 4,400 diabetes-related amputations every year and, sadly, 85% of these are preventable. That means with the right changes to our health system we could potentially prevent more than 3,700. Australia needs a national Diabetes Amputation Prevention Initiative to help people with diabetes avoid amputations.

Diabetes isn’t the most important thing about me, but it is a balancing act I do every single day of my life. It’s tough and dealing with people’s misconceptions is part of that. If you want to support people with diabetes be polite, courteous and try and find out a little more about the condition.

This week is Diabetes Awareness week. For more information, Mamamia recommends you visit this website.