DOC

Outside the Bubble.

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“Diabetes! Diabetes! This way!”

The lady behind the counter was shouting and gesturing wildly as I entered the rec centre for an evening on exercise and nutrition put together by my fellow Young Adult Diabetes Committee members.

The YADC came to life a year ago and has since grown into a vibrant community of young adults living with diabetes, who are predominantly type 1s. As I found myself explaining to someone in attendance that night, this group really came about to fulfil a need that was currently missing in the Perth community.

As I took a seat and the evening’s proceedings kicked off, I found myself mentally nodding as I heard concepts being explained by our guest speakers that I was all too familiar with.

I looked around the room, glancing at some of the other people with diabetes and their loved ones in attendance. I observed many of them listening attentively, taking in all of the information they were hearing or jotting it down in note form. My own two parents were sitting behind me, and I wondered how easy this information was for them to take in.

They know the concepts behind managing type 1 diabetes quite well. At home, I find myself talking a lot about some of the exciting developments I read about in the DOC, my advocacy activities and diabetes related travel.

However, I’ve always been very independent in the physical management of my condition. I don’t bother them with all the nitty gritty stuff, like trying to figure out the best time to bolus for a high fat high protein pub dinner when my blood sugar is x mmol.

The evening broke off into group sessions, where I found myself chatting with some of my fellow type 1s in the room. It was nice (but also saddening) to hear other experiences in public hospital diabetes care that mirrored mine, while there were also some inquisitive questions asked of the pumpers and CGM users.

I departed this event with a far greater insight from all of the different perspectives I had heard and observed in the room during the course of the evening, and all of the different motivations for attending.

During our committtee meetings, good ideas simply seem to pop among this very bright group of YADC members. I spend my spare time trawling social media, squealing with excitement over the latest device or venting my frustration over the latest coverage of diabetes in the media. I get to catch up with people in the industry and other diabetes bloggers when I’ve received opportunities to travel, who are people just like me.

This event, however, had finally brought me outside of the diabetes bubble that I so often find myself sitting in. I just need to figure out how I can spend some more time here.

Yesterday’s Incident.

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Over the weekend, an uncomfortable incident caught my attention in a closed diabetes Facebook group. A new member to this group introduced himself as a health coach, sharing a before and after graphic depicting drastic weight loss and an image of a book he was publishing. Apart from the brief mention of the words ‘T1D for 20 years,’ there was no real substance to his post and I seriously doubted that he actually did have a connection to diabetes.

While the moderators of this group were likely out enjoying their Sunday, the community in this Facebook group impressively called this behaviour out for what it was. This man was clearly soliciting his products and services, and many in the group made it clear to him that this kind of a post did not belong in a peer support group.

While many healthcare professionals are still skeptical of online communities replacing their fundamental role, I felt that yesterday’s incident was an impressive example of how peer support is clearly not a place for medical advice.

The Diabetes Online Community typically does a stellar job at self moderation, with the community fostering a culture where participants feel welcomed, encouraged and able to seek support from those who truly ‘get’ it. 

Sure, a big part of our involvement in peer support is asking questions and sharing experiences, but the majority of the community embraces the philosophy that ‘one size does not fit all’ and that ‘your diabetes may vary.’ The DOC does not belong to any one person, and I believe that the majority of the community truly embraces this.

In my experience, keeping these philosophies in mind has made my experience an overwhelmingly positive one. Sure, I have witnessed uglier corners of online communities, and for the most part it’s where participants fail to acknowledge perspectives that might not be aligned with theirs.

One of the best things that has come from participating in the DOC is hearing these diverse perspectives, that have opened my eyes to the reality that not everyone is in as privileged a position as I am.

As for this individual, I expect that he is likely no longer a part of this online peer support group. I, for one, am glad that the DOC has the best interests of each other at heart.

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.

In and Around the DOC of Late II

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I feel I’ve been quiet in the DOC chatter while diligently working on my own blood sugar levels and stalking my glucose meter, so here are a few items that have caught my interest lately.

Allison at The Blood Sugar Whisperer is sharing a unique perspective into preparing to conceive a child with diabetes. I’m working diligently towards bringing my A1C down, so I can relate a lot to that aspect of Allison’s writing.

Speaking of A1C, being able to look beyond the less than ideal number that I wrote about last week was crucial. This post from Mike at Diabetes Mine really hit home, and it’s great to see that there’s conversations happening in the US around re-evaluating the A1C as the sole assessment of diabetes therapy.

I frequent Facebook, Twitter and a lot of diabetes blogs for my dose of DOC. One blogger who is doing it differently is Drew of Drew’s Daily Dose. Drew is an exercise physiologist and diabetes educator who lives with type 1. I first met him in Sydney this May, and he primarily runs a popular Instagram account focussed on his passion for exercise, fitness and type 1 diabetes. Check it out here.

Steptember. The idea is that you take 10,000 steps a day for 28 days and get people to sponsor you along the way. Although this is a fundraiser for Cerebral Palsy, I still think it’s a great idea for diabetes and getting active. steptember.org.au explains what it’s all about.

One of my favourite writers on the other side of the world is Sarah of Coffee and Insulin, and some of her recent posts have been exceptional. Sarah’s writing is just so captivating, and her lust for travel, adventure and life shines through in her writing. Happy 11th Diaversary, Sarah!

Back on the home turf, the Australian Diabetes Society and Australian Diabetes Educators Association held their annual scientific meeting last week. Tweets were rolling out from some of the passionate advocates in attendance, and you can catch up by following #adsadea2016 on Twitter.

Congratulations to Kelley at Below Seven and Kerri at Six Until Me on the recent arrival of their newborn boys. Maria at My Life: A Long Trip With T1D is also expecting, although I’m not sure her new employer realised straight away!

Tuesday night is OzDOC night. Follow @OzDiabetesOC and #OzDOC on Twitter to connect with other people with diabetes.

Last but not least, I must have missed the memo that Friday was National Dog Day. This little man has been holidaying at my house for the past two weeks, and he absolutely hates the camera. Although he did promise that he would guest blog again soon to make up for it…

 

Is the DOC Inclusive?

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I’ve only been a part of the Diabetes Online Community for a little over a year.

When I nervously took part in an OzDOC chat for the first time, I felt very welcome. Strangely welcome, because the discussion was so friendly it looked like these guys all knew each other in real life. Somehow Renza stumbled upon my (very crappy at the time) blog, and offered me encouragement. Mike was one of the first people to leave me a comment, welcoming me into the Diabetes Online Community. I later learned he worked for a little site called Diabetes Mine and had included my post in their monthly blog round up. 

I found my place in this community quite easily, and I continue to participate quite actively. It stimulates me, it offers me support when I need it, and it inspires me to do better with my own diabetes.

Yet the other day, I felt compelled to agree that I sometimes I do feel hesitant to speak up because my opinion might differ from that of the majority.

To this day, one of the hardest things for me to accept is that not everyone is going to agree with me. I constantly try to remind myself that we are all different and naturally won’t agree on everything, but it’s still hard. I guess I find it hard to separate the difference of opinion with a dislike for my character. Silly, I know…

There have been some issues circulating around in the DOC that people have really strong opinions about. #DiabetesAccessMatters and Low Carb High Fat diets, are two examples that come to mind. Sometimes as a witness to these intense discussions and advocacy, I do feel hesitant to jump in with an alternate opinion for fear of being attacked or banished from a community I genuinely do love.

Social media only gives us a really small window into a person. When I first jumped in, I knew nobody with diabetes. I know for me, even just meeting a small group of peers at DX2Sydney this May has given me a lot of perspective in regards to the person with diabetes versus the Twitter window. It was a really valuable experience that carries me forward in my online activity to this day.

Some of my peers in the Australian community have set a great example for me in the use of diabetes social media. When I write here, I am increasingly conscious of trying not to “bash” the alternative opinion, or claim that my opinion is the right one, instead focussing on my own experience.

One thing I do admire is this community’s eagerness to comment and voice their thoughts. I often struggle to fit my ideas into 140 characters, and I’m terrible at keeping up in fast paced Twitter conversations. It often feels easier to lurk than to comment, and I feel I could be more inclusive by not being a stranger so often! 

I feel that Diabetes Daily and Diabetes Mine also do an outstanding job of being inclusive of the wider DOC. Diabetes Daily feature a wide variety of perspectives on diabetes management that I find myself reading more and more of. And you need look no further than the @diabetesmine Twitter feed to see how engaged the folks at Diabetes Mine are with the wider community.

Reading Renza’s post on the issue of inclusiveness yesterday really put my mind at ease. We don’t have to agree with one another, but we certainly need to be respectful so that others don’t feel afraid to voice their thoughts. 

I don’t really know how I come across online. But I hope that others would feel that I am respectful towards other opinions, even if I don’t agree all the time. 

Be kind to one another.