Media

Overflowing.

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Being diagnosed with diabetes as a young adult came with its own, unique set of challenges. I had lived a ‘normal’ life for 17 years, and then all of a sudden I had this new condition that I had to find a place for in my life.

Nobody around me knew that I had diabetes, and it was difficult to explain such a complex condition to the people around me. In some ways, it was just easier to deal with my diabetes in private rather than having to try and explain what I was doing in the middle of another frustrating high blood sugar.

Today, I think my diabetes is pretty visible. Whether I’m talking with the pump in my hand, checking my blood sugar in the inventory office at work as someone comes to interrupt me, or walking back out again crunching down glucose tabs.

It’s fair to say that I have a pretty big interest in diabetes today. I spend a lot of my spare time writing here, freelancing over at Diabetes Daily, posting about diabetes on my social media, attending community events, as well as being part of a diabetes Committee here in Perth.

“Are you going with the diabetes group?” is now a fairly standard response from colleagues when they hear that I’m taking annual leave from work.

“What are you doing?”

“What’s that?”

I spent so long imagining people’s reactions to a finger prick or an insulin injection. Today, it often feels like they simply don’t take any notice. Those explanations of the condition that I live with don’t seem to have any effect when the same questions pop up again and again. Perhaps others are just sparing my feelings by not asking me what I am doing.

However after National Diabetes Week, it finally began to feel like those messages of awareness were getting through to the people who needed to hear them the most.

The response to my diagnosis story that was shared on Diabetes WA’s Facebook page last Sunday was phenomenal. The story that appeared in The West Australian on Thursday was absolutely huge.

Despite my repeated arguments of just how terrible that photo was, two colleagues at work pulled the newspaper out of my hands on Thursday morning, took it over to the photocopier and stuck it on the staff room wall at work. “It’s a really important issue that could affect the people you work with!”

Doing media is a really big thing, even for an over sharer like myself, but I couldn’t be prouder of the outcome.

After a big week spent raising awareness of diabetes, and hearing stories shared from fellow people with diabetes, my cup is well and truly overflowing.

This is what National Diabetes Week is all about.

itsabouttime.org.au.

Kicking off Diabetes Week with some of my tribe last weekend.

That Time I Was In The Newspaper

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A few weeks ago, I agreed to be a media ambassador for Diabetes WA’s National Diabetes Week campaign. If you’ve been living under a rock this week, the campaign is calling on earlier detection of the signs and symptoms of diabetes.

Obviously the urgent and life threatening nature of type 1 diabetes is what picked the Editor’s interest the most, and I was told that The West Australian newspaper was interested in running a story. This is despite Diabetes WA’s media release providing equal attention to type 2 diabetes. (However, I do not know if the person with type 2 diabetes profiled in the release was prepared to do media).

The West Australian, in my opinion, are notoriously bad. The quality of journalism, in my opinion, is absolutely terrible. Unless you regard AFL footballers, Channel Seven personalities and Channel Seven television programs as news. The last diabetes article I read had the headline ‘cash strapped diabetic sufferers.’

So, it’s safe to say that I was feeling my fair share of nerves as I opened that newspaper to read how the story was covered yesterday morning.

I found out that The West were planning on running this story last Tuesday. The Editor left me a voice message late on Friday, which I promptly responded to with another voice message outlining my availability and willingness to chat. After a few SMS exchanges a day later, a photograph was arranged for Wednesday morning during Diabetes Research WA’s event for National Diabetes Week.

I was so looking forward to getting a professional photograph done, and jokingly told the photographer to make sure that I was smiling. I like to call myself Chandler Bing, because I always think that I am smiling during a photograph, only to see a very serious looking end result. I was also looking forward to getting a cheeky Instagram of me being photographed, and was bitterly disappointed to be told that I wasn’t allowed to.

We made our way across the road to the beautiful Lake Monger reserve, overlooking the city skyline and glorious Perth sunshine. Instead, the photographer placed me into the bushes, stuck a camera onto one of the trees and told me to walk toward him while looking sideways at this camera. I was then asked to go back and repeat the exercise, this time looking forward at him.

“Shouldn’t I be smiling?” I asked after realising that this was not a warm up exercise but the real thing.

“Isn’t this supposed to be a really serious story?” He replied.

After taking a few photos of me smiling, purely to humour me, our exercise was over.

As I made my way back toward the event I was attending, I expected that the Editor did not plan to ring me as she had said and that I would not have a chance to deliver some key messages on language.

I knew that I would have to get in touch with her and politely deliver the two key messages I had developed from some crowdsourcing during Tuesday night’s OzDOC chat, along with a copy of Diabetes Australia’s Position Statement on Language and Diabetes. I didn’t even care if my message didn’t get through, I only knew that I wouldn’t be able to live with myself if I hadn’t seized this chance to put my case forward.

As expected, I received a pointy email response back highlighting this Editor’s 25 years of medical writing experience. After somewhat defensively being told that terms such as ‘diabetic sufferers’ aren’t used, I had a suspicion that my message had gotten through.

Back to that moment where I was a bundle of nerves, flicking through the pages of that newspaper yesterday morning. Despite the serious photo, I couldn’t be prouder of the outcome.

‘Diabetic sufferer’ is nowhere to be found!

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.

Fear as a Motivator For Health?

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During a diabetes themed episode of Sunday Night this week, I noticed several tweets from Diabetes NSW that had been carefully planted into the #SN7 feed on Twitter (the program’s hashtag). Including this one, which sought to tell us that 7,750 people die from diabetes and related complications each year.

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It’s not the first time I’ve seen these kind of Tweets from Diabetes NSW as of late. During the diabetes community’s I Wish People Knew That Diabetes day last month, Diabetes NSW once again hijacked the feed to fill us in on some of the scary facts.

On both occasions, the Tweets appeared automated and displayed little understanding around the respective hashtags they were hijacking.

After seeing this tactic employed once again on Sunday evening, I couldn’t help but call them out.

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As a member based organisation that supposedly represents and supports people with diabetes, messages like these really do members a disservice. Do messages promoting complications and instilling fear around poorly managed diabetes really motivate individuals to look after their health? I think not. And judging by the reaction I received on Twitter, I am not the only person who feels this way.

While stories like these may be effective on people without diabetes, I feel that they sorely overlook those of us who already live with it. In my opinion, health consequences such as obesity, sugar consumption, physical activity or kidney failure are separate issues that need to be dealt with exclusively from diabetes.

The sad reality is that the wider media eat up the sensationalised stories around the complications and fear surrounding life with diabetes. People without any connection to diabetes make assumptions based on what they see reported. Perhaps that a person with diabetes is not fit to work. That a person with diabetes lives an unhealthy lifestyle. Or in the case of the aforementioned Tweet, that a person with diabetes could drop dead at any given moment!

Yet the positive stories, the ones around people with diabetes being able to live healthy and full lives are often overlooked, or overshadowed by the sensationalised stories. Diabetes NSW were quick to point me to a page of positive “ambassador” stories on their website, including another “Frank” who I reminded them of. Yet I am reminded of this recent post from Melinda at Twice Diabetes. I can’t help but wonder whether they are ambassadors who are truly engaged with the organisation and the community, or just figureheads that are referenced when necessary.

To be fair, Diabetes NSW is not the first organisation to instill these messages. We had the dreadful 280 a Day campaign for Diabetes Week last year in Australia, and more recently we had the very confusing World Health Day.

Shaping the conversation around diabetes in public begins with the organisations who represent us. I only wish we weren’t so hard done by all the time.

Diabetes Horror Stories in the Media

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Last night’s episode of 7.30 was rather confronting with some of the harsh realities of diabetes in Australia. We were introduced to one of Australia’s many diabetes “hotspots,” Blacktown in New South Wales. We were told that 40% of patient blood tests in the Blacktown Hospital emergency room showed diabetes. One third of those patients were unaware that they had diabetes, and another third were pre-diabetic.

We were introduced to a woman who ate her way to type 2 diabetes with junk food. We were told by the CEO of Diabetes Australia that one quarter to one third of hospital beds in Australia were filled with people suffering from diabetes complications. And we were introduced to an elderly woman who thought she had reasonable control of her blood sugar levels, only to be told by doctors that she needed to have her foot amputated.

Honestly, I just feel torn when I see these diabetes horror stories in the media.

Yesterday I wrote about how strongly I feel about not seeing the people around me develop diabetes. And how I am all for doing my bit to help prevent new cases of diabetes.

And then I see stories in the media like the one I saw last night. Stories that leave me stunned. Stories that leave me fearful. Stories that make me want to find a corner and curl up into a ball.

It doesn’t matter how average, how decent or how good of a job I feel like I’m doing. I see stories like these and all of that work is reduced to shreds. I’m beating myself up again. I’m thinking about all of the bad decisions I’ve made. I’m thinking about all of the potential damage I’ve done to my body. I wonder if I will be one of those diabetes horror stories, one day. And I wonder if there’s any point in trying.

But these stories are true. They do happen. Is it fair for me to attack them, or to pretend that they don’t happen in real life? I don’t know.

I guess all I’m trying to say is that there are people watching these stories who are already living with diabetes. Some of the people seeing these stories are trying their very hardest to manage, and stay on top of this rollercoaster of a disease. And horror stories like these don’t give them much of an outlook, or motivation to keep going.

Prevention is important. But support and encouragement for those already living with this disease is equally important, too.

The transcript from last night’s report on the 7.30 program is here. You might be able to watch the report too, depending on geography restrictions.