My Diabetes Inklings

The Legacy of a Raindrop

“No matter what stage you’re at in your career, always ask yourself how do you want to be remembered?”

I didn’t quite grasp this concept initially but the more I think of it, the more I liken it to the ripple effect and our conscious and unconscious impact on the people surrounding us. Somehow, this quote echoed through again as we celebrated the career of Diabetes Victoria’s (now-ex) CEO, Craig Bennett and the achievements of people living with type 1 diabetes for 50 years or more at the Kellion Victory Medal award ceremony.

So now I’ve been pondering over this again as I reflect on my work as a diabetes advocate, as a researcher and as an educator. Now throw in the mix of being a mum and how it’s impacted my ability to fulfil those roles and the importance of those identities to me. I’ve always idealised being a key player of something that will create a huge impact in the community. It’s pushed me to embrace many leadership roles, even when I have no idea what I’m doing, at least I’ve come away from each opportunity with new learnings.

Being pregnant while chasing after a toddler has forced me to slow down. More importantly, it’s made me let go of striving for perfection all the time. It’s been incredibly frustrating as I’m brimming with projects and ideas and wanting to chase collaborations with amazing people I’m meeting. Being one person (or maybe even half a functioning person at this stage), it’s hard to feel like you’ve made an impact at all. But when I look around closely, I am making a difference to people’s lives. The excitement and smile on my daughters’ face when I pick her up from childcare reminds me of that.

Now I need to learn to embrace a slower pace of life in preparation of managing two energiser bunnies under two. I know the next few years are not going to be easy. It won’t be all or nothing though – I just need to work within my limits, set my boundaries and focus on improving the relationships I have around me; from my family and friends to colleagues and students. The relationships that we have makes life so much more enriching and we don’t recognise this enough. For me, it makes the extra hours and effort I put it feel worth it, knowing that I had some role in their success.

Sometimes it’s those people that we invest in who will go on to change the world. So if you feel like a small nobody, please do not underestimate yourself or your power to make an impact. Even if it’s something you might not see straight away, know that to someone, you have made their day or said/done something that changed their lives. It’s all about the ripple effect.

My Diabetes Inklings

Checking my Privilege

I have a secret. I feel like a fraud living with diabetes. Healthcare professionals are constantly telling me that my diabetes is too “well-managed”, or that my A1c is reflective of a person without diabetes or that I’m a “boring patient”. Is it even possible to have imposter syndrome when it comes to life with diabetes?

We know that my type of diabetes is slightly different to the norm. Technically classed as type 1b, my diabetes doesn’t seem to be an autoimmune condition and my pancreas is still producing residual amounts of insulin. I believe that this protects me from getting DKA (pure speculation here). It’s the best of a bad situation.

I worry about taking an ableist view of living with diabetes when I talk about it. Everyone’s diabetes and their journeys are different. While some are able to complete ultra marathons in spite of diabetes, others view diabetes as disabling with how disruptive it is to their lives. I am also acutely aware of the privilege I have of being able to access subsidised insulin, insulin pump consumables and CGM (for now) and afford private health insurance (barely) to get an insulin pump. These technology are what helps me to keep my diabetes in check. Without it, I might not be that “boring patient” who is so “well-controlled”, it’s like I don’t have diabetes.

On the other hand, it has taken a long time to get to this point with years of self-advocacy, tears and frustration under my belt. I’ve had healthcare professionals tell me I’m in denial when I’ve tried to advocate for myself and ask questions. I’ve been tangled in red tape simply because our healthcare system allocates funding and resources based on a nice little tick box diagnosis rather than medical needs. I’m just one of the lucky ones who found light at the end of the tunnel through lots of peer support, trial and error, patience and resilience.

But I think I’ve reached the point where my story has been told to death. Now I feel like quietly checking my privilege and stepping aside. There are so many other stories from people with diabetes who are doing amazing things, navigating their own challenges and who are fabulous story tellers. I see my role now as trying to amplify their voices to keep the slow burn of diabetes advocacy going. And in part, it’s been great see this happening organically and connect with fresh faced diabetes advocates within the community. It’s time for me to let go.

My Diabetes Inklings

Peer Support Wins Again

“When your physical environment is in chaos, it leads to a chaotic mindset.” I remember discussing this with my counsellor a few years ago as it has been haunting me these past couple of week. We’ve just moved houses and have been living among boxes as we adjust to a new neighbourhood and different routines. Towards the end of our second week in the new house, it finally broke me a bit.

I had severely underestimated the challenges of moving with a toddler while being pregnant in the Australian summer. We ended up having to make several extra trips between houses to move everything and clean up the old place. Did I mention our new house is a solid 45 minute drive away? On top of this all, my daughter was starting a new childcare and I’m under pressure at work to get my subjects ready in time for the upcoming teaching period.

Despite constant reminders to take things easy, I found myself suppressing a lot of the feelings bubbling away in order to keep moving. I felt like making an appointment with a psychologist would’ve been a good idea. But it also meant having to start the process of finding a new local GP and psychologist, which is a daunting task in itself.

I took to social media to vent a little about everything. Many of my friends who are mums reached out to share their stories and experiences in support. One of them prompted me to check my childcare subsidy settings. I found a massive error in the amount of reported working hours, which would’ve greatly impacted the amount of subsidy we would be eligible for.

Rectifying that mistake meant that we were able to utilise an extra day of childcare and not stress out so much about asking family to help out while they’re all working too. Another friend reminded me that our kids are only this age for so long and that we don’t have to be chasing our career all the time. Hearing that almost gave me permission to slow down a bit. It also reminded me to stop chasing perfection.

Just those few little mind shifts and chatting to friends when I felt my panic and anxiety building made a world of a difference. I forced myself to step away from work as much as I could this weekend and focus on the social/family events that I was looking forward to. For the first time in a while, I’m feeling slightly more recharged for the work week, settled and calm.

Peer support is such a powerful tool when professional networks aren’t readily available or if a person hasn’t got the brainspace to deal with navigating the healthcare system. Never underestimate the impact of listening to someone else and sharing your story with them. You never know whether that story will make them sigh with relief and say “I’m glad I’m not the only one going through this”.

Ever tried untangling headphones or necklaces when you’re frustrated and in a rush? It’s near impossible. These are times when you need to stop, take a big breath and slow down more than ever.