Diabetes and the Online Community

Time to Rethink National Diabetes Week?

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As I watched the response towards an amputation-themed National Diabetes Week escalate late last week, I’ve been thinking about my own stance on Diabetes Australia’s campaign. I made my opinion clear though my vlog last Monday (which you can watch here), and have steered clear from most of the conversation since. While it was disappointing to see some of the commentary getting out of hand, it will not make me feel any less guilty for having an opinion of my own. 

Diabetes Australia advocates for the language used when talking about diabetes, and for the way it has the power to shape our thoughts, beliefs and behaviours. I support this wholeheartedly – both online and off. To quote Diabetes Australia’s Language Position Statement:

“Language needs to engage people with diabetes and support their daily self-care efforts. Importantly, language that de-motivates or induces fear, guilt or distress needs to be avoided and countered.”

I can’t help but feel that a campaign focussing on diabetes amputations does induce fear, guilt and distress, and contradicts this language position statement. Two diabetes educators in our community even went further to suggest this:

“In my practice I’ll be working with newly diagnosed and people who have had diabetes for years and dealing with the heightened anxiety that comes from the strong messaging around this. Powerful messaging can do more harm than good and many people choosing this style of awareness campaign are often not at the clinical coal face dealing with the aftermath” – Ann Morris, Facebook.

“Diabetes distress is real and palpable when people talk about their fear of complications – especially in relation to the fear of foot or leg amputation. Fear is further fuelled by the negative campaign being run in this year’s Diabetes Awareness Week. We shouldn’t be surprised if they disengage about their risk or move to a default mode of thinking that they are ‘here for a good time not a long time’, then adopting behaviours that increase complication risk.” – Jayne Lehmann, Ed Health Australia.

Diabetes Australia admirably responded to some of the criticisms of the campaign in a Facebook post on Friday afternoon, which you can read here.

Diabetes Australia were campaigning for a Diabetes Amputation Prevention Initiative from our government to help prevent 85% of diabetes related amputations each year through early detection and proper care. We were also told that the campaign was not really about the person with diabetes, but to help make the broader public more aware of this issue.

While I don’t doubt the seriousness of this issue, I do question whether a very public National Diabetes Week campaign was the appropriate avenue for this lobbying. People don’t know enough about diabetes. People don’t know enough about what it is, what it entails, and how to best support those of us living with the condition. This was supposed to be our week, where we raise awareness and be proud of the condition we live with. A campaign focussing only on one issue – a negative one – does not achieve this. It only creates stigma.

I blogged about National Diabetes Week positively. I vocalised my feelings about the campaign with those around me. I enthusiastically followed the #NDW16 hashtag on Twitter all week. Yet from what I saw, very few people were actually jumping on board. Yes, there were plenty of automated-looking tweets from diabetes and health-related organisations. There were some retweets. However I saw very few people actually jumping in and talking about it.

Diabetes Queensland and Diabetes Victoria were both calling for submissions to their Diabetes Life Hacks and Diabetes Won’t Stop Me campaigns, and I don’t feel that either gathered the momentum they deserved in terms of social media engagement. I would go as far to suggest that even these more positive campaigns were overshadowed by a negative national theme.

Watching many passionately vocalise their feelings (some inappropriately) towards the campaign on Facebook, I couldn’t help but wonder what the outcome would have been if the campaign were a positive one. 

Okay, so the theme was foot health. The underlying message was to look at and take care of your feet. Why not set up a few booths across the city where people could get their feet examined for free? The CBD, universities, shopping centres, etc. Create a cool hashtag, and encourage people to post photos on social media as they’re getting their feet examined. Make an event out of it, and give people something to remember when it’s time for their next foot check.

I thought Diabetes NSW were onto something by staging a Guinness World Record – it’s just a shame that they went with “Standing on One Leg,” which seemingly made a mockery of amputees. 

I personally did not like the theme of this year’s National Diabetes Week. And if the response on social media is anything to go by, Diabetes Australia will need to reconsider their messaging in 2017.

Finding My Tribe

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People don’t see me at 2.30am in the morning, shivering, and shoving skittles down my throat. They don’t see me on a restless night, rage bolussing stubborn highs that refuse to go down. Or the finger pricks I perform every time I walk out of the room.

People don’t see the insulin pump that I pull out of my pocket underneath the table. They don’t see the loads of discarded test strips and insertion devices underneath the lid of my rubbish bin.

People don’t see the guilt I feel every time I put a donut or a piece of chocolate into my mouth. They don’t see how tied down I feel every time I walk out of the house, with a jacket or satchel stuffed full of diabetes crap. Or the failure I feel at the bruises and scars that are hidden underneath my shirt.

People don’t see the exhaustion I feel, every time the alarm clock goes off to check my glucose in the middle of the night. They don’t see the burnout I feel behind every smile, and every single ‘good morning’ that bounces off my face.

People don’t see the rollercoaster of emotions that flood through my body when the door to my room is closed. They don’t see the fear I feel, every time this condition takes an unpredictable turn. Or the judgement I place on myself, every time I go quiet.

You don’t see diabetes, when you look at a person like me. You see normal. I daresay you even see healthy. You see me drinking coffee and eating donuts, just like everyone else. You don’t see all of the tasks that managing this condition entails. You don’t see the isolation I feel, living with a condition that you need to experience to fully understand (and trust me, I wouldn’t wish that on anyone).

For me, a big part of what was missing from my own diabetes equation for the first four years was peer support. Nothing really does beat the feeling of hearing someone else say the words “me too.” “I get it.” Or “I hear you.” Nothing beats the anticipation I feel, every time I refresh my diabetes feed reader. Nothing beats the enthusiasm I feel during OzDOC chats every Tuesday night. Nothing beats the sense of community I feel every time I am glued to Twitter, that makes me feel far less alone with my condition. Nothing beats being able to lean on my family for support when I need it, something that I simply wasn’t able to do after my diagnosis.

There’s an old saying that goes, “find your tribe and love them hard.”

I’ve definitely found mine, and they certainly won’t be going away anytime soon.

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Why Matters of Diabetes Ignorance Won’t Bother Me

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I’m posting this with a little nervousness today (please don’t shoot me).

I won’t be bothered by the matters of diabetes ignorance that circulate around the diabetes community.

Am I saying that it’s okay to discriminate against people with diabetes? Absolutely not. 

I just don’t feel compelled to get angry about an offensive sign that was put up on the other side of the world, or a message written on a coffee cup. I wouldn’t personally feel compelled to speak up unless I felt that it directly affected me.

I will point out for those who remember, that I did write an angry post about the CrossFit debacle a year ago – something I am not proud of today. In hindsight, I simply don’t think it was worth my attention.

Being diagnosed at age 17, I see diabetes from both sides of the fence. I didn’t know the first thing about it before I was diagnosed. Thinking back to the days before my blog, I knew very little compared to what I do now. Even today, I’m still very much learning new things about diabetes each and every day. Last week alone, I had two conversations where I had to explain that I did not get diabetes from eating too many lollies (or in my case, chocolate).

These days, I actually love being asked about my diabetes. I feel very confident when talking about diabetes to others. I feel proud of the knowledge and insight that I can offer to help others better understand the condition I live with – something that wasn’t true two years ago. I don’t feel that anger would ever produce the same result.

I simply think that there are greater issues worth my attention. If the e-mails I receive each week are anything to go by, I would hope that my writing here brings to light the realities of life with diabetes. I would hope that others will discover the power of peer support that I did last year, and realise that they are not alone in this.

I guess another thing that bothers me is that lack of respect in each other’s different opinions towards these types of situations. Craig over at Insulin Nation penned this piece in response to one recent matter of ignorance, and to be frank some of the commentary I witnessed in response to his opinions were nasty. 

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My opinion on the issue of diabetes ignorance certainly isn’t the only one, or the right one. It is however, my own, and one which I hope will be respected. If you feel like the matters of ignorance are important to you, I’ll certainly respect that. (So long as you’re not a walker, of course).

A Rough Patch

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I’ve been going through a bit of a rough patch with my diabetes lately.

I’ve been using an insulin pump for six weeks now. I am loving it, and I do genuinely feel a greater sense of control compared to what I did on Multiple Daily Injections. I feel that I am putting far more effort into my diabetes than I did towards the end of my reign on injections, which is a good thing. I feel motivated to put that effort in, because that effort does produce both results and less stress.

Yet at the same time, the insulin pump has been one of the greatest challenges I have faced in the course of managing my diabetes. There are an endless number of variables I can program for with the pump. Fine tuning the pump settings has taken a great deal of time and incredible patience. With a job that entails physical activity, this workload is essentially doubled. As I’ve somewhat come round full circle in fine tuning my pump settings, I am finding that my basal insulin requirements need to be lowered further. I’m needing to go round the clock again with basal testing (urgh).

The occlusion I wrote about yesterday was the last straw. It set off a rollercoaster of emotions. Sadness, failure, anger and frustration. I’ve been snappy. I’ve been quiet. I felt very tempted to rip out the pump and take a break last weekend. The words fucking diabetes have often been on my breath. I’ve even wished my diabetes away, something I can honestly say rarely happens. Opting out of renovation work last weekend was a tough, but necessary call so that I could have some time alone.

My diabetes educator recently reminded me that sometimes we need to take a step back from diabetes. Not literally, of course. I guess more like trying to put it to the back of my mind, and bringing some of the non diabetes stuff to the forefront.

For me, a big part of dealing with this burnout has been taking a step away from social media. I’ve really just needed a break from reading and engaging myself in the the constant conversations about diabetes online. I’ve pulled out a book, and started reading again. I even finished it. (If you know me, you will know how much of an achievement this is). I made dinner on Thursday night. I’ve focussed my attention finding some different stuff to snack on. I’ve also been ducking out into the Winter sun when it makes an appearance, too.


At the moment I’m just trying to look at my diabetes day by day, and trying not to set unrealistic expectations in fine tuning my insulin pump. I’ve put a plan in place to move past that occlusion. I’m giving the centre of my stomach an indefinite break from insulin pump sites. I visited my doctor last week, and am subsequently applying bruise cream to the centre of my stomach to hopefully heal some of that scar tissue. I’m placing my pump sites on the outer edges of my stomach, and drawing dots in permanent marker to track my rotations. I’m also checking my pump sites when I get dressed each day for signs of bruising and bleeding.

This week, the bruises are finally starting to fade. And with it, I feel like some of that burnout cloud is beginning to clear, too.

In and Around the DOC of Late

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I’m going through a bit of a rough patch with my diabetes at the moment. I haven’t felt like writing too specifically about pump or blood glucose tethering issues, and I’m taking a bit of a back seat on social media. But that’s not to say that there hasn’t been a lot going on in the good ol’ DOC.

One thing that I am reminded of during this rough patch, is that I have excellent tools available to me in order to manage. I’m wearing a Libre sensor on my arm, which gives me the convenience of scanning as often as I need to. I have a $9,000 insulin pump attached to me, which allows me to set temporary basal rates to settle stubborn glucose levels, or conveniently bolus from the comfort of the couch. I also have plenty of spare insulin, glucose meters, skittles and test strips in reserve.

Not everyone in the world does.

T1International is currently running an appeal to provide insulin, syringes and glucose monitoring supplies to an estimated 2,000 Syrians who are in dire need. Just under $20 Australian dollars will provide a month’s supply of insulin, which I easily spent at Woolies yesterday alone. You can read more about the appeal here, and make a donation here.

If you’ve read a diabetes blog recently, there’s a good chance that you’ll see a comment from Rick at RADiabetes. Rick invests a lot of his time each week into reading the mass of diabetes blogs in our community, and curating the blog page at TuDiabetes which you should definitely check out here.

There’s a new diabetes forum/app from Beyond Type 1 for people to connect, share and inspire each other to not only live, but thrive with type 1 diabetes. I must admit I’m not too keen on another password to remember, but I am definitely feeling tempted to sign up after a peek at some of the forum activity from new and familiar faces. Check it out here!

There’s a new book which aims to help children better understand diabetes self care and the use of equipment. Diabetes veteran Yerachmiel Altman from New York began photographing stuffed animals taking shots, doing finger stick tests and using an insulin pump as a way to help a family dealing with a newly diagnosed six year old son. You can buy the book, I Can Help Take Care of Me here.

Helpline Live is a free service offered by the team of experts at Diabetes Queensland. If you’re a part of the Twitterverse, you can tweet a question under the hashtag #HelplineLive, and the team from Diabetes Queensland will get back to you with an answer. They’re live every Tuesday morning from 9-10am, but will answer your questions outside of those hours, too!

You might have heard of Jayne Lehmann before, but she is relatively new to me. Jayne is a self employed diabetes educator from South Australia who is actively connecting and learning from people with diabetes on social media. Her latest blog post explores the implications of the upcoming NDSS changes, which you can read here, and be sure to follow her on Twitter here.

Yesterday was officially the shortest day of the year, meaning we are well and truly in the depths of Winter. I’m reminded of this freezing yet glorious afternoon at Lake Burley Griffin in Canberra last July. Take me back!

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Hope you’re keeping warm, and that your Wednesday is filled with stable glucose levels.