Today, we're pleased to welcome a fellow diabetes blogger from Australia to share his thoughts here at the 'Mine.
We love our #OzDOC friends on the other side of the globe, and type 1 peep Frank Sita stands out, blogging over at Type 1 Writes. We talk a lot about the value of peer support in diabetes and healthcare generally, and it's great to see this getting more recognition in recent years from the medical community -- yep, new studies are showing it's hugely important. And above all, we appreciate folks like Frank, who share their real-world experiences of how peer support helped break them out of isolation, and how incredibly powerful that is.
Take it away, Frank...
A POV from Down Under, by Frank Sita
I’m one of the privileged few who joined the "diagnosed-a-few-weeks-before-turning-18 club," in terms of living with type 1. That was in 2010, and I was in the midst of a big transitional change in my life: had newfound independence, was midway into my first semester at university, was enthusiastically working my first real job, and driving around in my first car. There was a lot going on at the time, and when that T1 diagnosis came along, I don’t remember actually processing my the meaing of my new illness all that much right away.
Needless to say, being diagnosed with T1D as a young adult presented a unique set of challenges.
For starters, nobody knew that I had diabetes. I didn’t grow up with it, didn’t go through school with it, and it wasn’t simply there for the world to see. I didn’t know life any other way, and went from carelessy eating potato crisps after school to having to think about what they would do to my blood sugar.
Not being exposed to a childhood with diabetes, I didn’t get to experience diabetes camps or other youth-oriented activities that would have automatically connected me to other people with diabetes. As I was fairly independent, I never knew what it was like to have someone assist me with my daily management tasks at home.
My family were there for me in the beginning. They came along with me to clinic appointments and sat in on diabetes education sessions. They constantly reassured my glass-half-empty self that diabetes wouldn’t stop me from living a relatively normal life. They tried to do those helpful things at home, like asking if I needed to weigh my dinner before it went onto the plate.
Despite the support of those around me, diabetes quickly became a very isolating thing to have to deal with. Diabetes didn’t feel normal. I felt awkward. I felt different. Moreso at a time while others my age were venturing out into the night partying and drinking like there was no tomorrow, while I was sitting at home after my 18th birthday party eating my way out of a low.
I didn’t know how to talk about something that felt so unexplainable. It was hard to swallow questions about how my numbers were, when they obviously weren’t that great. Those ‘helpful’ things at home quickly became an annoying reminder of just how different I was. It became easy to keep diabetes to myself, and assume that nobody else would understand.
I was really conscious of my diabetes. In some aspects, my attitude-ridden teenage self wanted to prove that diabetes didn’t make me any different. I would often leave the house without my blood glucose meter. There were times when I was caught outside of the house without anything to treat an oncoming hypo. I felt really self-conscious about giving insulin to cover my sandwich in the library at uni, that I would pack up my things and head to the bathroom. I never, ever, wore my medic alert bracelet anywhere.
This isolation didn’t contribute to the best outcomes in terms of my diabetes management. I wasn’t very motivated or engaged. Despite how determined I was to get a grip on my blood sugar levels, I just couldn’t seem to get it right. When diabetes got tough, it definitely produced a lot of emotion -- and there was no outlet to channel those feelings. At least, none that I knew of at the time in those first five years.
Finding the DOC
Then in 2015, I slowly began to uncover a piece of the equation that had been missing from my diabetes management for so long.
I began writing my blog, Type 1 Writes, started using Twitter, and discovered a group called the Oz Diabetes Online Community (better known as #OzDOC), where weekly diabetes-themed chats took place on Tuesday nights. I participated in my first Diabetes Blog Week, which connected me to other people with diabetes from all over the world.
The Diabetes Online Community (or DOC, as the cool kids call it) was a place where diabetes was normalised. It was a place where people shared their lows, their highs, their pens, their pumps, their opinions and everything inbetween.
I didn’t know another person who had diabetes in my own life, and this community fostered a sense of belonging.
This community also brought to light a wealth of information, things that I wasn’t necessarily receiving from my healthcare team. I found myself feeling more knowledgeable, self-motivated and confident in managing my condition, simply from being a part of it. Today, I’m much more of an open book with my diabetes, and I’ve learned to better lean on those around me, as well.
From Online to Offline Involvement
I’ve been lucky enough to put faces to some DOC folk at a few conferences, events and meetups in my time blogging. Despite my social media renown, I really am just an ordinary guy from the northern suburbs of Perth, and I hope that’s what others see in my writing.
As exciting as some of these opportunities have been, I still feel that I can only look on from home in envy at some of the awesome things going on elsewhere in the world. While kids and families affected by diabetes here in Perth are really well-catered for, the adult offerings don’t particularly appeal to someone of my age.
This year, I’ve been lucky enough to work with a great group of young adults with diabetes here in Perth. There are some brilliant minds in this group, bringing a variety of perspectives and experiences on life with diabetes to the table. We meet once a month and organize events to try and fulfill those unmet needs of young adults with diabetes. Being a part of this group, and having a connection to other type 1s in my community, has likely been the most meaningful thing I’ve done since entering the diabetes space.
The prospect of connecting with other people who have diabetes was initially a very daunting thing. What would you talk about? What else might you have in common? Will it really be worth going along, or joining in the chat? My teenage self wouldn’t have given it a second thought. He would have thrown that flyer for the diabetes event into the trash bin.
But peer support has turned out to be one of the most rewarding and worthwhile things I have experienced as someone with diabetes. I wish my doctor had told me about it over the years, rather than unhelpfully reminding me that my A1c was creeping upwards. I wish more diabetes healthcare professionals embraced it, rather than providing questionable looks. More people need to know about diabetes peer support.
It’s the one thing I would hope to change for other young adults with diabetes who will walk in my shoes.
Thanks for sharing your story, Frank, and we are so grateful that you connected with the DOC and are now so open. Great to have you a part of this community!