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.


Monday Vibes


Today, I’m in the midst of a glorious long weekend here in Western Australia.

I woke up on an 8.4, which is not too shabby considering I’ve given myself a break from middle of the night checks this weekend.

The nights are much more pleasant for sleeping now that it’s officially Autumn, and the air conditioner is off more than it’s on.

I’m just back from breakfast by the beach. I resisted the temptation of a big breakfast and instead went for a pancake stack with maple syrup, berries, mascarpone cheese and a pre-bolus of 12 units of insulin at the ready.

I’m thinking about getting a Fitbit. But at the same time, I can’t be bothered wearing a watch or my Medical ID bracelet…how long would this fad last?

New episodes of The Walking Dead and Once Upon a Time today.

Hopefully something more substantial tomorrow.

Happy Monday!

Textbook Diabetes

I’ve been thinking a lot about a promise that I made to my diabetes educator during my last visit. I promised that I would stop being so slack and start logging my insulin doses with my Freestyle Insulinx meter. “You need to be logging your insulin doses, otherwise it’s no better than any other meter” keeps ringing in my head.

The thing is, I’ve been spending considerably more time around my diabetes healthcare professionals since I began to ponder an insulin pump a few months ago. My team, and what they’ve asked of me, has been at the forefront of my mind in my day to day decision making a lot more often than usual. 

In contrast, I’ve spent a great deal of time over the past year engaging in the Diabetes Online Community. With people just like me, who are living and dealing with diabetes on a day to day basis. I’ve found my voice, and become a lot more confident and empowered to make diabetes decisions on my own terms.

So when I’m around healthcare professionals who don’t necessarily have that element of actually living with diabetes, it really hits home in front of me. And I am suddenly reminded of something I haven’t engaged myself with in a very long time. Textbook diabetes.

My diabetes healthcare professionals are fantastic, and I know that they only have my best interests at heart. But I can only wonder whether they realise just how hard it is to do all of those little things on top of diabetes itself. I can only wonder whether they realise just how hard it is not to have any more than two hypos per week. To log every blood sugar level, and every insulin dose. To follow what’s written in a diabetes textbook, when you know that the textbook isn’t going to produce the results.

While I certainly don’t claim to be an expert, I know how to look after my diabetes better than anyone else. I live with, and manage it around the clock. It’s like a pet. I know how much to feed it. I know what upsets it. I know what makes it sick. I know what it likes, and what it dislikes. It might go against everything ever written in a diabetes textbook, but I know it works for me.

I promised that I would e-mail my educator the meter reports so that she could begin to work out insulin ratios for the pump, and help me to fine tune things. And I want to. I really want to. But the reality is that I haven’t. While everything has been going well lately, there’s still been a lot of fine tuning around my insulin requirements. That meter data doesn’t mirror textbook diabetes at the moment. And right now, I’m not comfortable trying to justify my intuition over textbook. Better luck next week, eh? 

Diabetes Food Guilt

Let’s just say I have a bit of a love hate relationship with food. I liken it to a kid with a toy. You tell him he can’t play with it, and it only makes him want it more. That’s the way I feel about food.

My family was never very restrictive around our eating growing up. We ate breakfast, we rarely (if ever) brought our lunch from the school canteen, and we ate home cooked meals at dinnertime. But when it came to things like cordial, soft drink, chips, lollies, chocolate and ice-cream, we were never told that we couldn’t have it. Mum and Dad did buy these things when they did the grocery shopping, and we did enjoy junk food quite often after school.

So, throwing a diabetes diagnosis into the mix after 17 years did complicate things. Suddenly, I saw these afternoon indulgences as foods that I shouldn’t be having. I experienced the mess these foods did to my blood sugar levels. Most of the time, it was a delayed effect that happened after bedtime and left me high when I woke up in the morning. I often find myself riddled with guilt after eating less than ideal foods.

To be fair, nobody makes me feel guilty. Everyone around me is extremely supportive, and I can’t ever recall being told that “you can’t have that.” Healthcare professionals were also very supportive of managing diabetes around what I already ate after I was diagnosed. Then there are the extended family members who love to throw in their advice and tell me about their friend’s mother’s cousin who also had diabetes and did this to manage and maybe I should try it too…

But at the end of the day, the guilt is mine. Nobody causes it, and nobody forces me to feel this way. Except for diabetes. Yes, diabetes makes me feel this way. Let’s blame it on diabetes. I associate these foods with bad blood sugar levels. I sometimes find myself thinking about the long term damage I am doing to my body when I eat them, and possible future complications. I see these foods as things I shouldn’t be having, which has led to me binging in excess when diabetes hasn’t gone right.

There are a few things I like to remember, however, when diabetes food guilt comes to the forefront of my mind.

I do feel much more comfortable about what I put into my mouth now. Looking back at life before my diagnosis, I knew nothing about food. I was absolutely blind to things like the Glycemic Index, sugar content, carbohydrates and fat. I have made plenty of positive changes to my diet staples, which I am extremely proud of.

I am trying. I am ALWAYS trying. Just because I stop for a coffee and cannoli, it doesn’t mean that I am not trying. I put a lot of hard work into enjoying it. Like testing, carb counting, bolussing, and testing again afterwards.

Finally, I have never let diabetes stop me from enjoying the same foods I did prior to my diagnosis. I still eat (for the most part) what everyone else eats at get togethers and big events, so I have never felt as though I was missing out. I just work around it.

Life is too short to miss out on all the good stuff. Good food is one of the things that makes me feel the very best in the face of life with diabetes.

If you want to chat about more thought provoking topics like this one, I strongly encourage you to join in our supportive weekly OzDOC chats on Twitter every Tuesday night at 8.30pm AEDT. Just follow #OzDOC on Twitter