Diabetes and the Online Community

Why Isn’t Online Peer Support Encouraged?

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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

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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

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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!

Happy Birthday, Type 1 Writes!

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One year ago, I knew absolutely nothing about diabetes beyond my own ability to live with and manage it. I didn’t really know of anyone else living with diabetes. I didn’t think that there were many blogs out there, let alone an active online community. I didn’t think that there would be much to talk about. I knew nothing of news and developments in my own community, let alone the rest of the world. I can’t even say I was very interested. I very much believed that this isolated reality I was living in was as far as life with diabetes would take me.

One year ago today, I began writing about my type 1 diabetes. I wanted my own space to share my thoughts on life with diabetes, something that I did not think there was much of at the time. I also wanted to pursue my dream of being a writer. One year ago today, Type 1 Writes was born.

My initial posts here didn’t even have much to do with diabetes. I spent so much time planning, designing, thinking and over-thinking this blog. I was caught up in trying to make my posts have a mass appeal, rather than just writing from the heart. I was writing about iced coffee, sleeping tips and footwear, for goodness sake! Today marks one year since my journey began, even though the first genuine posts about my diabetes didn’t actually appear here until April.

It was around then that I started using Twitter, and began to uncover that diabetes community. I’ll never forget my first OzDOC chat, and how friendly everyone there was. Weirdly friendly, like they all knew each other in real life! I’ll never forget how surprised I was at some of the follow backs I received. I’ll also never forget how excited I was when Diabetes Mine first retweeted, and included The Things I Don’t Tell You About My Diabetes in their DOC wrap up.

But it was Diabetes Blog Week in May that really inspired this blog. Those seven exhilarating days of reading and connecting with other people’s personal experiences of life with diabetes. Writing about my own diabetes and baring all. I truly felt a sense of community. At the end of that week, I knew what I wanted this blog to be. A blog about my own life with diabetes, written from the heart.

Blogging has certainly been full of surprises, mind you.

I honestly didn’t think that I’d be able to stick with a blog for a whole year, for starters. I never imagined that I would become so interested, and passionate about diabetes.  I never imagined that I would find a diabetes community that means so much to me. Most of all, I didn’t think I would find so much to write about diabetes. Writing that has extended beyond the reach of this site. A column at Insulin Nation, advocating for greater access to test strips. Posts that were featured on Diabetes Daily. A voice that was used to advocate for serious issues like Insulin4All. Experiences that inspired the Beyond Type 1 community.

I am a better person today for being a part of this community. I have never felt more confident with my own diabetes. I have never valued my diabetes with such a high regard. I have never been more passionate about anything in my life. And that cure that I don’t believe will happen, seems just that little more believable today.

It’s been an honour to share this space with you in the past year, and I can’t wait to see what’s in store for the Diabetes Online Community in 2016.

Happy Birthday, Type 1 Writes. Here’s to many more.

My First World Diabetes Day, Twitter Style

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This weekend, I celebrated World Diabetes Day for the first time in the whole five years that I’ve lived with this darn disease.

It was my first World Diabetes Day because, prior to this year, I’ve shied away from my diabetes a lot, which you can read about here. Blogging and connecting with others in the Diabetes Online Community this year has given me a great deal of confidence in the condition that I live with. The Diabetes Online Community has sparked a real interest, and a passion for the disease that I live with. So, a big part of World Diabetes Day for me was being able to join this community for a 15 hour Twitter chat and speak up.

Throughout each hour, a guest host tweeted five questions relating to a particular diabetes topic that we would discuss. There were many thought provoking topics brought up, experiences shared and issues discussed throughout the 15 hours, many of which I’m sure I missed.

It was really great to have one day where the Diabetes Online Community came together to speak, listen, advocate and support each other. I also forged some new connections along the way, some of which I’ll share with you.

First up, Cayla. Cayla is a young college student in the States, and I really admired the enthusiasm that she maintained throughout the chat. At one point I talked about how I would love to fundraise for my Public Hospital Diabetes Clinic, and Cayla told me to go for it. There were many more.

Next up was Kristin. Kristin is the mother of an 11 year old type 1 girl. It was inspiring to hear how Kristin’s daughter leads the diabetes discussions at home, as well as setting the boundaries of what she doesn’t want to talk about. Kristin, I’m sure your daughter has a bright future ahead of her.

Next up was Kate. Kate and I found some common ground chatting about how we both find a lot of support from our families and the Diabetes Online Community, but not as many in real life.

Then there was Karen, who has lived with type 1 diabetes for 49 years. Karen told me that she didn’t feel that a lot of people understood her diabetes. Karen, I’ve felt exactly the same way many times in the past.

Finally, hats off to Chris for a marathon effort for the whole 15 hours of chat.

We’ve actually been following each other for a while, but we haven’t really chatted before. Chris is a freelance writer and owns his own SEO business.

We had a good laugh at the fact that both of our respective school teachers hated our writing, and yet now it is a significant part of each of our lives. You can also check out Chris’ blog, The Life of a Diabetic.

If the sense of diabetes community is something that appeals to you, I strongly encourage you to create a Twitter account. People in the Diabetes Online Community are very friendly, and there’s always somebody around to help you day or night. The diabetes community also comes together every Wednesday night from 9-10pm ET (US) to chat, and you can join in by following the #DSMA hashtag.

Thanks again to all of you who joined in and made my first World Diabetes Day a bright one!