Diabetes and the Online Community

A Whole New World of #DOC on TuDiabetes

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Does the DOC ever end? I’ve joined TuDiabetes recently, where I have discovered a whole new world of People With Diabetes to connect with. I’d heard of the name before, but I had no idea what it was. And it wasn’t until a prompt from my friend Rick at RADiabetes a few weeks back that I decided to join.

The biggest drawcard of TuDiabetes for me would have to be the forums, which are filled with lively, supportive discussions relating to almost anything I can think of. Chances are that if you have a question, there is probably already a discussion going on about it over on TuDiabetes. And while I’m hardly qualified to give advice, here are a few words of encouragement I’ve left in the forums recently.

In response to feelings of weakness and self defeat:

“Firstly, don’t compare yourself to others. You are your own unique, wonderful person. I’m sure that those other T1Ds have their own struggles. You probably just don’t see them, or they don’t show it in public. If anybody said diabetes was easy all of the time, they’d be lying. Secondly, don’t think of those setbacks as defeat. Think of it as knowledge you’ve gained that you can apply to the situation next time to ensure you won’t have a setback again.”

In response to not feeling human (which actually inspired last week’s post A Letter to My 17 Year Old Classmates):

“I was diagnosed a week out from my 18th birthday. Everyone else was out drinking, doing Shisha, living off Red Bull and generally abusing their bodies. And yet I was the good, sensible guy who ended up with diabetes. I get it.

Unfortunately, having diabetes means constantly having to field questions about why you’re not having cake or why you look so miserable. There’s no point in setting boundaries, because people aren’t going to remember. My best advice would be to come up with a strategy to deal with these questions, such as politely declining the cake, or politely telling the in laws you don’t feel like talking about diabetes today. Don’t let it bother you, because we all get those “stupid questions” all the time. And they only do it because they care (I know, I have a hard time believing it sometimes too!)

Finally, don’t be too hard on yourself. Diabetes is ALWAYS changing, and sometimes diabetes is more to blame when things go wrong.”

Another big drawcard of TuDiabetes is the interviews and other interactive activities which I can live stream from my computer if I so wish to. Sadly, the majority of these events happen while I’m fast asleep in the early hours of the morning! Ditto for the chat feature, which is pretty much like Facebook chat. I have my own profile page, which displays my latest activity. There are also diabetes resources and fact sheets at my disposal too.

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I know what you’re thinking – another social network? My thoughts exactly. Blogging and Twitter take up a lot of my DOC time, so I only check into TuDiabetes occasionally. However, many people do get their source of DOC support from TuDiabetes, and perhaps you will too.

You can sign up for TuDiabetes at www.tudiabetes.org.

Like my blog? Follow me on Facebook: facebook.com/type1writes.

My #OzDOC Story

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When I first started this blog a few months ago, I felt rather lost. I’d had Twitter for some time, although I thought it was absolutely stupid. I didn’t really see the point of following people I didn’t know. I felt so out of place trying to find diabetes stuff to tweet, which at the time didn’t sound even remotely interesting. And I felt like a desperate idiot tweeting my blog posts with every popular hashtag that I could think of.

Then one day, I stumbled upon somebody’s retweet from this Twitter account called the Oz Diabetes Online Community. It’s a Twitter chat for people with or affected by diabetes here in Australia. For one hour every Tuesday night, we introduce ourselves and answer a series of questions around a set topic of the week. We’ve talked about things like germs, exercise, team work, a cure and National Diabetes Week, to name a few. The best part about it is that anyone can see the chat just by typing #OzDOC into your Twitter search bar, and you don’t have to join in until you are ready.

Ever since then, OzDOC has been the place to be on a Tuesday night. OzDOC really got me started in the Twitterverse and the Diabetes Online Community, and helped me to feel less like a stranger. They are an amazing, friendly, welcoming, supportive and inspirational group of people. They were among the first of the #DOC friends that I made. Although I don’t know any of them in real life, they certainly have come to feel a little like family. And I don’t think I’ve missed a single chat since I first found it.

I feel extremely empowered having a space to share my experiences in managing diabetes, and I take a lot of inspiration from the other wonderful people there too. I love that we can all have a good laugh at ourselves, not to mention our fierce comptition for the wittiest tweet of the night. Having a wonderful community like OzDOC helps me to feel a little less alone with my diabetes. And while I love that the Diabetes Online Community connects me with people from all over the world, OzDOC helps me to feel a little more at home with my diabetes here in Australia.

Have a think about what you share about your diabetes with the people in your life, and what you choose to keep to yourself. Then join in by following #OzDOC on Twitter from 8.30pm Tonight AEST (GMT+10). Hope to see you there! (I’m guest co-moderating this week).

Like my blog? Follow me on Facebook: www.facebook.com/type1writes.

What The #DOC Means to Me

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I joined in a fantastic conversation the other day, regarding whether involvement in the Diabetes Online Community (DOC) benefits or harms patients. Some recent findings by Dr Michelle Litchman suggested that involvement in the DOC was associated with better glycemic control, self care behaviour and quality of life. You can read more about that on Brian’s blog here.

It’s a topic that’s no doubt questioned by diabetes professionals. Last week, for instance, I asked my endo whether she has heard much about what people with diabetes are doing online. Her response was “I can imagine.” She clearly had no idea what I meant, but told me that it was fine to do so.

Outside of this blog and outside of the Diabetes Online Community, I don’t actually know many people with diabetes. I have two extended family members who have type 2 diabetes. My great grandmother, who passed away before I was born, had some form of diabetes in her old age that she treated with insulin. There were two people who I went to school with, before I was diagnosed, who had type 1 diabetes. And there is someone at work who I know of, but don’t really know, who has type 1 diabetes.

That’s about it. I don’t really have anyone in real life who I can talk to about diabetes. Well, I do, of course. But I don’t have anyone who actually “gets” it. And that’s where the Diabetes Online Community comes in handy.

I absolutely love the fact that I can pick up my phone and I’m instantly connected with people on the other side of the world who have diabetes. I love that I can ask my Twitter friend Aaron how his pump is going. I love that I can read moving pieces of writing that I instantly just “get,” like this blog post I Don’t Want Anyone To Know from my #doc friend Malina (seriously, you MUST read this). I love that there are people like Lala, Marian and Aaron who reach out to me with words of encouragement and advice after reading my blog posts. And I love that I have my wonderful OzDOC friends who I can chat and laugh with every Tuesday night.

It saddens me to think that I have lived with type 1 diabetes for 5 long years without knowing that this wonderful community exists. It saddens me to think about how unwise and unenthusiastic I was about diabetes before I started this blog a few months ago. And it saddens me to think about day to day life without the support of this community.

As for the science of it all, it doesn’t matter to me in the slightest whether it’s proven or not.

I know that I instantly feel better by being able to connect with this community of positive, inspirational, supportive and non judgemental people. I know that I’m inspired by this community to live my very best each and every day. I know that this community has opened my eyes and ignited a passion for the very disease that I live with every day. A passion that drives me to write and to share so much, so often. I know that this community has provided me with a cushion of support to fall back on at times. And I know that this community has a positive influence that will motivate me to manage my diabetes in the best way I can.

I get all of that from people who are complete strangers to me. People who I’ve never met. People who I could walk past on the street without even giving a second glance. I think that is bloody amazing.

Some Inspiration from the #DOC

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Okay, full disclosure here, I’ve stolen this idea from Diabetes Mine. Sorry guys! The Diabetes Online Community (#doc) inspires me every day, and here’s what’s caught my attention lately.

Two heads are better than one? In the case of Twice Diabetes, I couldn’t agree more. I’ve really enjoyed interacting with Kate and Melinda on Twitter this month @TwiceDiabetes. Beyond their great sense of humour, there’s also some really well thought out opinions on their blog relating to diabetes advocacy issues here in Australia.

I’m really stoked to see my blogger friend Mum of Type 1 finding her feet in the Twitterverse so quickly. You can follow her @mumoftype1. Her blog initially caught my attention for her raw honesty conveying her feelings about her son’s newly diagnosed type 1 diabetes. Last week she wrote an excellent analogy likening her son’s diabetes to looking after an egg.

My other blogger friend Kyle at Training T1D will be cycling 160km through the Barossa Valley in Adelaide next year in the JRDF Ride To Cure Diabetes. Check out Kyle’s story and fundraising page here. I really admire his determination, considering that exercise is not my sport of choice!

Another person you have got to follow on Twitter is Ally, better known as @verylightnosuga. She may be busy with her studies, but she doesn’t let it stop her from sharing her very honest opinions about almost anything related to diabetes and beyond.

One blog (and person) that I take a lot of inspiration from is Renza at Diabetogenic. Renza’s recent post knocked everyone’s National Diabetes Week complaints right out of the park (mine included) when she told us that living with ALL types of diabetes is crap, and that we would be far more powerful uniting and advocating together for ALL types of diabetes.

I related so much to Kelly’s post last week at Diabetesaliciousness, and how she found support from the #doc during a hypo. 

My #doc friend Laddie at Test Guess and Go wrote a heartfelt letter to her daughters in law earlier this month, in relation to the two infants who recently passed away from undiagnosed diabetes.

I read a hilarious post about type 1 diabetes misconceptions by parenting blogger Stevie at A Cornish Mum during UK Diabetes Week last month. I laughed the whole way through!

My #doc friend Rick over at RADiabetes shares some heartfelt stories about living with both Diabetes and Rheumatoid Arthiritis (hence, the RAD). He’s given me a fair bit of encouragement, wise words and laughs since I connected with him during Diabetes Blog Week. Thanks, Rick.

Well done to all of my #OzDOC friends who participated in Run Melbourne last weekend. We even have a fancy new mission statement. Join in every Tuesday night from 8.30pm AEST (GMT+10) by following #OzDOC/@OzDiabetesOC on Twitter.

I know that’s probably just a fraction of what’s out there. What else should I be reading/following out there in the #doc?

Thanks, #DOC

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I wasn’t feeling my best towards the end of last week, and I just wanted to say a huge thankyou to all of my DOC friends who reached out to me here and on Twitter. Your support meant the world, and is a huge testament to the Diabetes Online Community. It truly is one of the most positive, supportive, non judgy environments I’ve ever found. Its nice to know during times like those that I am not alone.

I also want to apologise if my posts sounded a little too depressing. I know that I don’t always enjoy reading blog posts that talk about the darker aspects of diabetes. But that is a harsh reality. There are good stretches as well as bad stretches. And chances are, there are others out there right now going through exactly the same thing I was. Others who can benefit from reading this, others who can make a connection and realise they are not alone.

I like to think that I strike a good balance between the positives and the negatives of diabetic life in this blog. I also choose to share these experiences for myself. Writing really helps me to process and better understand what I’m going through. Sometimes I use this space as a way to reflect on a situation or to simply clear my head. Sometimes its almost therapeudic. But, its not for everyone.

I’m happy to report that I am in a better headspace today (if only I didn’t have to go to work!). I finished binging on Better Call Saul and Fresh off the Boat, went for a few sunny walks and also woke up to an exciting opportunity in my e-mail inbox on Saturday morning.

And I can’t believe that its almost July. I can’t believe that I’ve kept at this blog for the better part of 6 months. Its hard to believe that six months ago, I knew nothing about diabetes (well, compared to what I know now, it feels like nothing). Six months ago, I had no idea that the DOC existed. And six months ago I didn’t really have much of a passion or a goal beyond my day job.

I’m pretty excited for what’s on the horizon this month. Wimbledon starts tonight. Horray for some long nights rugged up in front of the telly. Fingers crossed those over hyped Aussies will get knocked out quickly so we can see some good matches (where’s my Australian spirit, right?). Under the Dome is back. At the end of the week I’m setting off on a much needed holiday. And hopefully blogging will help me to be a little more sensible with my travel choices this time around (I’m not making any promises, though…). I’ll be joining the National Diabetes Week campaign here in Oz soon, and there are a couple of other exciting things that I have planned for this space.

I just wanted to say a huge thanks for your continued support of this blog, and beyond. It means the world. And finally, a few memes to remind us that we are not alone with diabetes (and to have a laugh, too!).

Thanks, #DOC.

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