Peer Support

My Own Worst Critic

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Throughout my childhood, my parents constantly told me that I shouldn’t compare myself to others. Unless I had done poorly on my Year 12 English exam, in which case it was perfectly okay for them to ask me what scores the other guys in my class had obtained…

It’s easier said than done, right?

When it comes to diabetes, I am my own worst critic.

It’s so easy to feel guilty when I wake up to a number that’s out of range.

It’s so easy to place blame for a hypo that was caused by a lapse of better judgement.

It’s so easy to feel anxious about my future during times when my diabetes management might not be so smooth sailing.

Connecting with, and meeting other people with diabetes has been nothing short of amazing. Everyone has their own, unique story to tell. Everyone is passionate about their story, and the way that they manage their diabetes. I drank in the knowledge. I felt inspired, motivated, and dare I even say passionate about diabetes. I no longer felt so isolated, or so alone when it came to living with diabetes.

However after immersing myself in this world for a while, there also comes a point where I might begin comparing myself to other people.

Why aren’t I going for a run every morning?

Why am I not able to wear a CGM without letting it overwhelm me?

Why aren’t I eating clean?

Why don’t I have that hba1c?

Why isn’t my graph as flat as that one?

Why don’t I practice mindfulness?

Why am I not bursting with energy when I woke up this morning?

As amazing as this world is, there also comes a point where I have to put all of these perspectives into a box and focus solely on my own. 

I am not that person who goes running every morning. I am not that person who is reading my latest blood sugar levels from an array of devices. I am not that person who is eating clean, super mindful and bursting with energy either.

I’m no Matt or Joe or Anna or Angela.

I’m just Frank.

And that’s all that really matters.

Deeper than Diabetes

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Yesterday was a glorious day. The sun was shining, a breeze was blowing, and I had finally found success with my new afternoon basal rate which has been a real work in progress. We’ve been without a patio at home up until Monday, while a much needed new one has been in the process of being built. Inbetween miserable weather and construction, I’ve sorely missed afternoon coffees in the fresh air and sunshine after work. So when yesterday’s OzDOC chat rolled around, I made myself a coffee, grabbed my Macbook and took a seat outside.

As I scrolled through the OzDOC feed on Twitter, it looked like it would be a quiet night. Some of our regular contributors thoughtfully popped in and out to make their apologies. I was fully prepared to take a raincheck on the chat for this week, rather than endure a slow moving chat with few participants.

But conversation continued to flow in a more casual format.

Our moderator, Kim, expressed that she was separated from her daughter on her birthday, and the #dlove flowed.

I mused that I had a damp cloth draped round my wickedly sunburnt arm, and I received some funny sunburn stories from others in return.

Bri from the UK jumped in to tell us that she was starting out on an insulin pump on Thursday, and all I wanted to do was offer her the encouragement I knew she would need as she faces a steep, but worthwhile learning curve.

I was dying to know whether Kim was up to date with Australian Survivor. She was, but she is rooting for Matt, the contestant I dislike the most! I then learned that Matt was an ambassador for a diabetes charity, followed up with a Tweet from the man himself!

Andy popped in with a snazzy new profile pic, and I tweeted hello to Melinda who I haven’t chatted with in a couple of weeks.

Ashley and Glen, both of whom were multi tasking last night, stuck around during much of the conversation.

Bec popped in briefly, and I reminded her of the two places in Melbourne she absolutely had to squeeze into her short trip.

It was just a simple relaxed vibe, that I think was much needed by the group as a whole.

OzDOC is the one diabetes support “group” that I identify with on the internet. Some people I only know through our interactions online. Others I have been fortunate enough to meet in real life. And there are a few who I have only recently promised coffees with should I ever visit their cities. Nevertheless, they truly do feel like friends. I feel a strong sense of camraderie and spirit during our chats on Twitter every Tuesday night.

And even though last night’s chat was not about diabetes, the great OzDOC spirit that I have come to know and love, continued to flow. Even though we are connected by diabetes, it’s nice to be reminded that our connections run deeper than just diabetes alone.

Watching the last of the afternoon light fade and feeling the wind begin to chill with the relaxed vibe of OzDOC yesterday was absolute bliss. As I went inside to a slow cooked beef casserole for dinner, I felt content.

Finding My Tribe

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People don’t see me at 2.30am in the morning, shivering, and shoving skittles down my throat. They don’t see me on a restless night, rage bolussing stubborn highs that refuse to go down. Or the finger pricks I perform every time I walk out of the room.

People don’t see the insulin pump that I pull out of my pocket underneath the table. They don’t see the loads of discarded test strips and insertion devices underneath the lid of my rubbish bin.

People don’t see the guilt I feel every time I put a donut or a piece of chocolate into my mouth. They don’t see how tied down I feel every time I walk out of the house, with a jacket or satchel stuffed full of diabetes crap. Or the failure I feel at the bruises and scars that are hidden underneath my shirt.

People don’t see the exhaustion I feel, every time the alarm clock goes off to check my glucose in the middle of the night. They don’t see the burnout I feel behind every smile, and every single ‘good morning’ that bounces off my face.

People don’t see the rollercoaster of emotions that flood through my body when the door to my room is closed. They don’t see the fear I feel, every time this condition takes an unpredictable turn. Or the judgement I place on myself, every time I go quiet.

You don’t see diabetes, when you look at a person like me. You see normal. I daresay you even see healthy. You see me drinking coffee and eating donuts, just like everyone else. You don’t see all of the tasks that managing this condition entails. You don’t see the isolation I feel, living with a condition that you need to experience to fully understand (and trust me, I wouldn’t wish that on anyone).

For me, a big part of what was missing from my own diabetes equation for the first four years was peer support. Nothing really does beat the feeling of hearing someone else say the words “me too.” “I get it.” Or “I hear you.” Nothing beats the anticipation I feel, every time I refresh my diabetes feed reader. Nothing beats the enthusiasm I feel during OzDOC chats every Tuesday night. Nothing beats the sense of community I feel every time I am glued to Twitter, that makes me feel far less alone with my condition. Nothing beats being able to lean on my family for support when I need it, something that I simply wasn’t able to do after my diagnosis.

There’s an old saying that goes, “find your tribe and love them hard.”

I’ve definitely found mine, and they certainly won’t be going away anytime soon.

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Making DOC to Real Life Connections

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One of the best things that came from Diabetes Exchange in Sydney was the opportunity to make some real life connections with members of the Diabetes Online Community. In the past year and a half, online peer support has changed the way that I look at and manage my own diabetes.

More specifically, I’ve been drawn to a group called the Oz Diabetes Online Community, where I participate in diabetes support chats on Twitter every Tuesday night. The individuals in this particular group are the ones that I feel I can relate to the most. Theirs were among the first blogs I read. Their Tweets are the first that grab my attention in the morning. They live in the same country as I do, and we likely share a lot of similarities (and differences) about life with diabetes. The chance to meet some of these folks was a dream come true.

Mind you, I still can’t believe that this happened to me. I’m not an athlete or a celebrity, nor did I know anyone of influence in the room. I’m just an ordinary guy who happens to have diabetes. I kept waiting for the event to be cancelled, or to be scheduled on another day where I wouldn’t be able to attend. I was half expecting to be told that I didn’t have enough blog readers, or that I would be too expensive to fly over from Western Australia.

Going into this event, I definitely felt a little bit like the odd one out. I lived on the opposite side of the country, and I was probably the newest of all the bloggers there. I hadn’t met any of the others in attendance prior. I was a little nervous about whether I would fit in, and whether the other bloggers would be as nice as they seemed online.

I was so nervous on the drive to the Ovolo hotel in Woolomollo on Thursday afternoon. I wondered who would be the first person I’d meet. Would I run into Renza getting out of a taxi? Would I walk up behind Ashley at the reception desk? Would I bump into Georgie on the way to my hotel room? I wondered if I would even recognise them outside of their Twitter photo.

I was escorted up to my loft style hotel room, which was like nowhere else I had stayed in my life.


And, sadly, hardly enough time to enjoy it. I was nervously counting down the minutes until 4 o’clock. When I knew I couldn’t put it off any longer, I nervously proceeded to make my way down to the lobby for event registration. I instantly recognised Georgie, Kim and Ashley exiting the elevator on the opposite side of mine, and the nerves were instantly relieved.

It was super weird at first. Even though I knew these guys online, I didn’t know them, really. It was super weird as we sat down, and part of me wasn’t sure what I was going to say to them. Hey, great blog post last week? I’m glad the registration in the lobby lasted an hour, as it served as a nice ice breaker. By the end of that hour, I’d had a decent chat with Ashley, Melinda, and PR ladies Laura and Hannah, and I’d had a few words with Georgie and Kim as well.

It was great to chat with Drew and Matt, who I did not know of prior to this event, over breakfast on Friday. I was honestly in awe of all of Melinda’s life experience with diabetes, which absolutely shines through all of her activity online. I had a nice chat with Kim on the boat, as well as a few silly photos. Renza gave me a few words of encouragement about my upcoming pump day on the way upstairs to pack my bags on Friday morning. Georgie and I counted down together as we inserted the Libre sensors on our arms. I had fun Tweeting with Ashley during Friday’s proceedings, despite the fact that we were sitting next to each other. Although I didn’t get a chance to have a chat with Tanya, I was inspired by the story she shared about managing diabetes and achieving great things in a way that worked for her.

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I guess my biggest takeaway is that I no longer feel like such a stranger around these guys. While some of the bloggers aren’t in the same circles as myself online, I do feel closer to some of the others. I feel like I do Tweet these guys more often. I have now replaced most of their “online” voices in my head with their real ones. And some of them are now Facebook friends, as well.

I feel so privileged to have met these guys, and I’ll remember our time together fondly. Here are the list of attendees and their blogs:

Ashley of BitterSweet Diagnosis

Melinda of Twice Diabetes

Georgie of Lazy Pancreas

Kim of 1 Type 1

Renza of Diabetogenic

Tanya of The Leveled Life

Drew of Drew’s Daily Dose

Matt of Afrezza Down Under

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Disclosure: Abbott Diabetes Care paid for my travel and accommodation expenses to Sydney. I received a FreeStyle Libre reader and two sensors free of charge. There was no expectation that I would subsequently blog, and all opinions expressed are my own.