Complications

Pins and Needles

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When I began experiencing pins and needles in my feet less than a year after being diagnosed with diabetes, I was freaking out.

The minute I was diagnosed, I had been told to look after my feet. To check them every day. To look out for cuts and abraisions. I had been made well aware of the increased risks to the feet for people with diabetes. I cringed at the thought of people needing to have limbs amputated.

I was convinced that I had done something wrong. I cursed myself for how many hypos I had been having at the time. I felt ridden with guilt for not being able to better manage my blood sugar levels. It was my first year, for crying out loud!

Foot complications were all I could think about. Mum was in disbelief when I told her I was thinking of calling in sick to work, in favour of trying to find a podiatrist that would see me on a Saturday. (I was known to be a bit of a workaholic in my first job…)

I remember standing behind a register the following day, unable to think of anything other than the sensation in my feet. I arrived home to an empty house that evening, having self diagnosed myself with circulatory problems. I pulled the cover off of the dusty treadmill that Mum and Dad bought us kids for Christmas, but never used. I put on my sneakers and began running, frantically, in an attempt to boost the circulation in my feet. And I never run!

Of course, I had worried myself over absolutely nothing. With less than one year of diabetes under my belt, it was highly unlikely that I had anything to be seriously worried about. My diabetes educator even told me so much, when she squeezed me in during her lunch break to chat about it the following week. I had automatically associated the pins and needles in my feet with my blood sugars, which did not pose any foreseeable risk.

My podiatrist couldn’t find any circulation problems with my feet either, but commended me for coming in to check. And no sooner than my mind was put at ease, the pins and needles had passed.

My diabetes is getting older. With every passing day, diabetes becomes a larger fraction of my life. I constantly doubt myself. Whether I am doing enough to stay healthy, and on top of this damn condition.

There was a quote I found on Twitter about diabetes complications, that has stuck with me for some time. It went something along the lines of this.

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Every time I’m having a bad day, and every time I’m doubting my self management efforts, I repeat these words to myself.

And again. And again. Until they sink in.

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.

VLOG: There’s More To Diabetes Than Complications

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It’s National Diabetes Week here in Australia, and many of our diabetes organisations are focussing on the dreaded theme of complications.

I know that it’s pretty easy to sit behind a computer screen and complain about something, so I’ve decided to front up behind a camera and address the campaign through a vlog.

All you need to do is hit the play button below.

(And I hope I don’t disappoint those of you hearing my voice for the first time…)

 

Setting the Record Straight

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Diabetes campaigns here in Australia never cease to disappoint me. They always tend to focus on the negatives, such as the complications and the hard hitting statistics which instil fear. Our campaigns lack positivity, and don’t do those of us living with the condition a lot of justice.

In my humble opinion, a campaign for Diabetes Week is simple. One where we encourage people living with the condition to share their stories in order to help raise awareness. Diabetes UK always seems to do this very well, with positive, empowering campaigns that actually engage and involve people with diabetes.

Before I start getting depressed about the awful complication-themed Australian diabetes week next month, I thought I’d add my two cents worth to Diabetes UK’s fantastic campaign for Diabetes Week, Setting the Record Straight. Here goes…

1) A diagnosis does not mean that you’ll develop complications. I heard a lot about complications in the Australian media during the first year or so after my diagnosis. I remember feeling horrified about that possibility, and even writing myself off because of my diabetes in conversations. It took me a long time to realise that this was in fact, not true. 

I still remember a fantastic quote I found somewhere on the internet that went something like “you might feel like crap today, but complications can take years to develop.” It’s a great perspective and it always reminds me that it’s never too late.

2) Diabetes takes time to get right. A LOT of time. After I was first diagnosed, I remember talking to others in the context that I would eventually get it sorted. Once I had everything figured out, I wouldn’t need to test my BGLs so often and I wouldn’t be having so many hypos. Six years later, I’m still trying to get it right!

My diabetes educator reminded me recently that “even though we want to do as much as we can straight away, it takes time to get it right and you need to be patient.” Be kind to yourself.

3) You don’t have to turn your life upside down or give up everything! Magazines are full of ways to change your life and feel better overnight and blah blah blah. Doctors talk as though change can happen with a wave of the magic wand. It’s completely unrealistic. I’ve made a lot of small, gradual changes to my diet and my routine since I was diagnosed. But I haven’t compromised on the things I love. I don’t do dedicated exercise, because I don’t enjoy it. I still eat chocolate. I still drink lots of coffee. I don’t peel the skin off my takeaway chicken. I still enjoy myself at Christmas time. 

A colleague recently told me that “it’s easier said than done.” While I do agree, I reminded her that it doesn’t mean that you have to be unhappy.

4) Finally, I’m loving the Faces of Diabetes campaign that’s going round on social media. Because there are actual human beings behind the condition, and it’s important to keep that in mind when advocating. You can get your picture here.

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Happy Diabetes Week to those of you in the UK! You can find out more at diabetes.org.uk and by following #DiabetesWeek on social media.

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.