Taking a Plunge Into the Diabetes Twitterverse

I was extremely hesitant about taking a plunge into the Twitterverse a year ago. Unlike Facebook, my name, my photo, and everything I posted could be seen by anyone on the internet. When I first joined I would upload a profile photo, Tweet a few things, and then delete everything on my page again. I did this a few times before I eventually had the confidence to stick with it.

I seriously considered Tweeting under an alias for a while. But inspired by others I saw in the diabetes community, I decided to go with a first name and a profile photo. I wanted people to be able to connect with me, and I felt that this did me better justice than an alias.

I also feel that putting my name to my posts on social media makes them more honest and genuine. I think it’s a lot easier to be dishonest and disrespectful on social media when you’re posting behind a mask. If you’re serious about the “a” word (advocacy), then this is definitely something to consider too. I know that when I’m scrolling through my Twitter followers, I’ll follow back genuine people with diabetes rather than the account called “Diabetes Cures.”

It’s fair to say that Twitter has surprised me. I thought that Twitter would be pointless for someone like me, who was relatively unknown and far from the likes of being a celebrity. I never thought that I would make connections, or find any meaning to it. That is, until I began using it with a focus on diabetes. I have discovered a whole new meaning to Twitter since I began using it with a focus on diabetes.

A lot of people with diabetes use Twitter. If your Twitter profile identifies as a person with diabetes, chances are a lot of these friendly folk will follow you back. There’s just something so meaningful about being able to reach out or share with people who just “get it.” Waiting out a hypo at 3am? Support on the other side of the world is just a Tweet away. Have a question? There’s a good chance someone else in your circle has gone through the very same thing. Having access to this kind of support 24 hours a day is very meaningful to me.

I love that Twitter is so short and sharp and to the point. It’s also very stimulating. It’s the first thing I check when I’m sitting at the table with my coffee in the morning. It’s something I relish during a break in the afternoon. I’m always finding something interesting to read, or jumping into a chat such as #OzDOC or #DCDE. It’s the place where I initially became passionate about diabetes (outside of my blog, of course).

I also love my hashtags. Owning a genuine Tweet about diabetes with the hashtag #diabetes is just so empowering. Everytime I use the hashtag, I mentally picture my Tweet thwarting 10 other Tweets in the #diabetes feed promoting cinnamon and weight loss and cures. I’m proud that I’m putting genuine information out there.

I love Twitter. It’s helped me to find a community, become an empowered patient, and feel less alone with my diabetes in general. Although I haven’t met any of these folks in real life, many of them do feel like friends. When you live with something as isolating as diabetes, that’s not a bad thing to have.

Why Isn’t Online Peer Support Encouraged?

I first ventured online a year ago, shortly after I started this blog. I didn’t really know what was out there. I didn’t even think that there was anything out there where diabetes was concerned.

Even today, the size of this online community continues to amaze me. There are blogs, there are podcasts, there are news sites, there are friendly Facebook groups, there are the TuDiabetes forums filled with lively discussion, there are Tumblr pages filled with gifs and humour, and there are Twitter support chats.

It’s fair to say that my experience in online diabetes support has surpassed my expectations.

Online peer support has changed the way I live with, and view diabetes. It’s empowered me. It’s given me a voice for my diabetes. It’s given me a lot of confidence in the way that I live with, and manage my diabetes in real life. It’s given me a space to connect and to share with other people who are going through exactly what I deal with each and every day. It has empowered me to challenge myself, and to seek out alternative tools that will better help me to manage my diabetes. I seriously doubt I would have even considered an insulin pump if it weren’t for this sense of empowerment, and support from DOC connections.

One online peer support space that I truly champion here in Australia is the Oz Diabetes Online Community. If you follow the hashtag #OzDOC on Twitter every Tuesday night (that’s tonight) at 8.30pm AEDT (GMT+11), you’ll find a group of us sharing answers around a topic related to life with diabetes for one hour. Everyone is so friendly and welcoming, it almost seems as though we know each other in real life! I’ve joined in almost every Tuesday since I found it. It’s both thought provoking and supportive at the same time. All you need is a Twitter account, and you don’t have to use it for anything else if you don’t want to! You can lurk until you are comfortable to join in, and nobody will be any wiser.

I don’t know many people with diabetes in real life, so online peer support has certainly helped me to feel less alone with my diabetes. It’s just a shame that it took five years of life with diabetes to finally seek this community out. Nobody told me about it. Nobody encouraged me to do it. I just somehow stumbled upon it one day.

In all honesty, I’d love to see online peer support groups encouraged by healthcare professionals. I’d love to feel more comfortable talking about it, without worrying about receiving funny looks in return. I’d love to see posters hanging up in clinics and offices, and for diabetes professionals to suggest it to their patients. I’d love to see more open minded Australian healthcare professionals join in our social media activity.

On that note, I am going to make it my mission to plug the OzDOC community a little harder this year. I’ve joined a team of moderators who are bringing some fantastic topic ideas to the table for chats in the weeks to come. I’m going to plug it a little more in my blog posts and social media on Tuesdays. I’ve even snuck some posters into the waiting room at my Diabetes Clinic. I hope you can join us tonight.

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The Power of Words In The DOC

It’s the smallest things that mean the most to me.

Like the surprise e-mails that arrive in my inbox from time to time. I need only tap the title card and I’ll almost certainly be guaranteed warm words. The greeting, so friendly and so personal, it could be from someone I saw only yesterday. The narrative, so open and inviting, as though the person writing it could be someone who knows me in real life. The kindness, so real and so genuine, that I don’t know what I’ve done to deserve it.

This week, I was absolutely touched by a relatively new friend in the diabetes online community. I had the widest grin on my face when I read that they were so inspired by my “non-championed, non elite” account of life with diabetes.

Was I touched to receive a compliment? You bet. I’d be lying if I said otherwise.

However, it was the power of those words themselves that were even more touching.

I am not a celebrity. I am not an athlete. I am not one of the cool kids. I am not the biggest Facebooker, Tweeter or Photographer. I am not a genius. I am not rich. I am certainly not the kind of person who can sugar coat everything and tell you what you want to hear. And I certainly don’t have diabetes all figured out, either…

However, I can write. I love to write. It takes time. It’s creative. It’s thoughtful. It’s very meaningful. I find it extremely empowering, and even a little therapeutic at times. I channel a lot of my creative energy into my writing week in, week out. Writing is my passion. It’s something I would happily do for the rest of my life.

I think it’s simply amazing how something as ordinary as words can be so powerful. It’s amazing how these words can form a connection. A bond to someone on the other side of the world, who I don’t even know. It’s amazing how words can usher in this sense of community. A space for support and security, that I rely on each and every day. It’s amazing how something as consuming as diabetes can be overpowered by reading simple words that I can relate to. Words that urge me to respond with “I get it.”

I am simply an ordinary person, who also happens to have diabetes. It was one of the very reasons I began to blog just over a year ago. It was one of the reasons I was so touched by that compliment.

Words are powerful. Words are the reason I write. Words are the reason I will continue to exist in this diabetes community each and every day.

Until we find a cure, know that your words mean as much to me as mine hopefully mean to you.

Happy Friday!

Diabetes Online Community Down Under

I have very little Australian spirit. You need only watch me shouting at the overhyped Aussies in the Australian Open. Don’t even get me started on Nick Kyrgios…

However, in the spirit of Australia Day tomorrow, I would like to acknowledge some awesome people in our Australian Diabetes Online Community. Also because I’m going from memory here, I apologise in advance if I’ve gotten any of my facts wrong!

Melinda, one half of Twice Diabetes, always brings a great deal of knowledge, experience and helpful advice to conversations in the DOC. She’s also not afraid to call it like it is where diabetes organisations are concerned.

When I first connected with Maureen at Mum of Type 1, she was concerned about a future for her teenage son with type 1 diabetes. She’s since joined the ranks of the Twitterverse, written to politicians, fundraised, and continues to blog as her secret therapy!

Renza at Diabetogenic is very honest and relatable, and she’s not afraid to tell us that diabetes is plain crap to live with. Working for a diabetes organisation in Australia, her writing also gives us the insider’s view on her advocacy work.

I feel like I have a lot in common with Georgie at Lazy Pancreas. We were both diagnosed with type 1 in 2010 at roughly the same age. A diagnosis with type 1 presents unique challenges at every age, and Georgie articulates in her writing what I often feel myself.

As the title of her blog suggests, Rachel at Yoga For Diabetes lives and breathes yoga. When Rachel was diagnosed as a LADA a few years ago, she wanted to show others how yoga could benefit people with diabetes. She now has dedicated social media channels, and a book in the works.

Kyle at Training T1D displays admirable determination in not letting diabetes get in the way of his cycling. He impressively navigated his blood sugar levels through the JDRF Ride to Cure Diabetes in South Australia this month, and raised over $4,000 in doing so.

Ashley at Bittersweet Diagnosis was initially diagnosed as a LADA before becoming insulin dependent. Ashley is a dietician, and recently travelled to Vancouver where she was elected as President of the International Diabetes Federation’s Young Leaders in Diabetes program.

I’ve always wondered what life would be like if I was diagnosed a few years earlier while I was still at school, and everyone ‘knew.’ Bec at A Diabetic’s Rollercoaster handles it with a lot of enthusiasm and humour, and I enjoy reading about how she navigates diabetes among her friends as a young adult today.

Then, of course, there’s the awesome Oz Diabetes Online Community who hangs out on Twitter every Tuesday night. I appreciate this group so much. I can’t say how awesome it is just to casually chat, bounce ideas and thoughts about, and laugh with a group of people who just get it.

Our online community here in Australia may be relatively small (to my knowledge, at least), but know that I really appreciate each and every one of your voices.

Happy Australia Day!