Living a life of advocacy
Over the last two decades Renza Scibilia has transitioned from being newly diagnosed with type 1 to an influential diabetes advocate and activist and a vital part of the team at Diabetes Australia. And she’s not done yet.
When Renza Scibilia was diagnosed with type 1 diabetes in 1998 she was 24 years old, didn’t know anything about the disease and was running her own business teaching music. As a classically trained flute player, she’s the first to admit it wasn’t exactly the obvious training ground for a future career in health advocacy. Fast forward to this year and a few months ago she was speaking at a virtual World Health Organisation event that brought people from all over the globe together to talk about diabetes.
“I’d never say diabetes is a blessing,” she says. “I hate diabetes and I find it really tough to find positive things about it. But at the same time the life I have now and the incredible opportunities I’ve had – including speaking at events and the chance to, in my role with Diabetes Australia, help influence health policies with the aim of improving the day-to-day life of people living with diabetes – wouldn’t have happened without it.”
Still, being diagnosed with diabetes is one thing, making advocating for others living with it a big part of your life is another. Renza says that journey began on the day she learned she had diabetes.
“My GP made me an appointment with an endocrinologist for that same day and while he was lovely, he was also pretty old-school. So his explanation of diabetes was not only incredibly simplistic, at that first appointment he showed me some really confronting photos of long-term complications, including amputations and people on dialysis. It not only made managing diabetes sound easy – when in reality there’s nothing about diabetes that’s easy – being told that if you don’t look after yourself this is
what’ll happen to you, without any context or explanation, was terrifying.
“I’m fortunate that I’m health literate enough and had the resources available to me that I could decide that actually no, that approach wasn’t for me, but so many people don’t or aren’t able to do that for all sorts of reasons. And that’s really damaging because if you feel like you’re being threatened or judged by your doctor rather than supported, there’s a risk you’ll put your head in the sand instead and not go back.
“I think it was realising that and feeling like I wanted to do something about it, that’s one of the biggest reasons I’ve gone down the path I have.”
Adding her voice to the cause
What started out as a volunteer role at Diabetes Victoria eventually led Renza to her current position as Diabetes Australia’s manager of type 1 diabetes and communities. In the middle of that journey she also launched Diabetogenic, an award-winning, popular blog where she shares her real-life journey with diabetes. “I started the blog because I was looking for a way to feel connected to others but also because I wanted to write about diabetes-related things that don’t get talked about enough, like women’s sexual health and fertility and mental health.”
But the thing Renza is most passionate about advocating for is that there’s no one way to do diabetes. “It would be wonderful if there was but that’s not how it works. So, where possible, my whole thing is helping people understand that they have choices and knowing how to ask for what they want.
“That’s a talk I’ve given often at events and still give often even though it’s 2021, both to people living with diabetes and to healthcare professionals. I encourage people to interview their healthcare professionals so they can find one who suits their needs and preferences, and I encourage healthcare professionals to expect and accept that people have the right to do that.”
Still, Renza says that while that kind of person-centred approach to diabetes would ideally be the norm, we’re not there yet. “Sadly, there are still some very big gaps in terms of the care people receive and as a result, living with diabetes is very tough for some people. So while I really hope that the work I do has made a difference, until diabetes care is a level playing field for everyone in Australia, I won’t feel like we’re done.”
And of course Renza’s work has already made a real difference to a lot of people. “I got an email recently from a woman who was at an event I spoke at 17 or 18 years ago, and she’d sent me a photo of herself with her daughter. It was significant because when I met her back then, she said she’d been told that being type 1 meant she’d never be able to have a healthy pregnancy or baby, and she’d been astonished to hear me say the exact opposite. To see a photo of her with her daughter and know that something I’d said encouraged her to seek a different opinion and explore her options, it’s always really wonderful to hear those stories.”
Visit Renza’s blog at diabetogenic. wordpress.com ■
There are still some very big gaps in the care people receive and living with diabetes is very tough for some people