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On Saturday night, before delving into the craziness that was White Night, I attended the launch of a terribly exciting new resource. Enhancing Your Consulting Skills; supporting self-management and optimising mental health in people with type 1 diabetes is described as an ‘education resource for advanced trainees in endocrinology and other interested health professionals’. That’s right. It’s written for health professionals who will be working with and for people with type 1 diabetes. 
I attended with a dear friend who shares my pancreatically-challenged state. We also share the same endocrinologist – one of the collaborators on the resource – and were there at her invitation. We know just how lucky we are to see an endo who understands self-management, ‘gets’ the fact that burnout happens and doesn’t have a judgemental gene in her body. We know that having an endo who we can email in between appointments is a privilege we would never abuse. And we know that living in the inner city means that we have access to healthcare that many others can only hope for.
Hopefully, this resource will mean better education of new endo trainees and that the care we are so fortunate to receive will be available to many more people with diabetes.
This resource is a huge step forward in medical education. It is the first time that the needs of people with type 1 diabetes have been directly addressed with a strong focus on self-management and mental health. As Professor Alicia Jenkins highlighted in her speech, people with type 1 diabetes spend, on average, three hours per year with their healthcare team. The remainder of the time we’re doing it alone. There is no treatment option other than self-management and an understanding of how HCPs can support that is critically important.
Endocrine trainee, Michelle, gave a candid speech how she has come to view people living with diabetes. She said that when she first started attending a young adults with diabetes clinic, she was frustrated and said that she blamed her patients for not getting the results she expected. This honesty was refreshing and it was so pleasing to hear how she now knows to focus on the positives rather than negatives when working with PWD.
Dr Jennifer Conn gave a warming speech about how she never stops learning from her patients. This humble attitude is one of the reasons that this book is so well written. It acknowledges the expertise held by the person who lives with diabetes and knows their condition better than anyone else possible could.
I looked around the room and saw that there with the glitterati of the diabetes HCP world, were some of the pancreati – the people with diabetes who the book was written for. It’s a tribute to the writers and organisers of the launch event that people with diabetes were invited.
I’d like to congratulate the team who have put this together, and the NDSS for supporting the development of the resource. This is a win for people with type 1 diabetes and I can certainly see similar volumes being written for type 2 diabetes and, indeed, other chronic health conditions.
At the end of the event, I wandered back out onto the Melbourne streets, waiting for nightfall when the city would light up and fill up with hundreds of thousands of people. I looked at my friend and thought how lucky we are – a night of Melbourne brilliance kicked off with hope for a better future for people with diabetes.
Disclaimer
One of the collaborating writers involved in this resource is my endocrinologist. I was asked to provide comment on some sections of the book and my photo and a screen shot of this blog are included in the final book. I did not receive any payment for any of this involvement.
The development and printing of this book were funded by the National Diabetes Services Scheme (NDSS) which is administered by Diabetes Australia. I am employed by Diabetes Australia – Vic.
I couldn’t be more excited to receive this in the mail today:
And I couldn’t be more proud of the wonderful Kerri Sparling who I am lucky enough to call my friend.
Run, don’t walk, to order your copy of Balancing Diabetes now!
‘I’ve been compliant,’ I said to my ophthalmologist with great pride. ‘Compliant’, I said again and smiled at him and waited for a pat on the back. It didn’t come. So I tried again, emphasising my point. ‘Four times a day; both drops in my eye. Just like you said. Didn’t miss a single drop. I was com-pli-ant.’
If there is a word that is evokes rage in me it is compliant. When used in terms of diabetes management, it makes me see red and start imagining the painful things I’ll do to the person using the word. Actually, it’s usually used with the prefix ‘non’ to give the word noncompliant which is even worse.
At the World Diabetes Congress last year, Twitter nearly broke thanks to a group of DOC renegades sitting in a lecture given by a doctor who insisted on using the term ‘noncompliant diabetics’ to illustrate the point that some of his patients were having difficulties following their diabetes treatment plans. There we were, non-compliant diabetics because we couldn’t keep our BGLs perfect and follow the rules and do the things we ‘should’ do and, you know, do it all with a smile. Bad, bad, BAD diabetics. This photo shows how happy I was:
So with this hatred of the word, why was I bandying it about in front of my ophthalmologist like there was no tomorrow? And saying it so proudly? And frequently?
The answer is quite simple. Following the treatment plan I’d been given after my cataract surgeries was easy. Two different eye drops; four times a day; for 4 weeks. Then it was over. It was something that, for me, was manageable. There was a point where it would stop and then I wouldn’t have to think about it again.
The complete opposite of living with diabetes where there is no end point and no time where a box can be ticked and it will all go away. It was so lovely to be able to do something that was predictable, easy, knowing that there would be a time when it didn’t have to happen again.
Understanding the relentlessness of diabetes management is difficult to communicate. I don’t really expect people to truly appreciate what it is that is so frustrating and annoying and challenging. But I do expect a little respect and a little acceptance when things are not going to plan. I also think that using judgemental words that suggest that there is a deliberate attempt to ‘break the rules’ is unfair and lacks any sort of comprehension about a condition that never goes away.
Perhaps my delight in announcing so loudly and proudly to my ophthalmologist about how clever and bright and shiny I’d been with my eye drops was because for once I felt like I was actually doing something right when it comes to my healthcare. Perhaps I needed recognition (probably more from myself than anyone else) that I could follow directions and get the desired results. Perhaps I just needed to believe that I was doing something that would result in predictability and a satisfactory outcome. Diabetes doesn’t ever provide any of those things. No matter how compliant you are.
Yesterday as I skimmed a few news sites and social media sites, I came across endless diets, weight loss fads and a downright disturbing article about ‘bikini bridges’ which, it appears, is the latest in ‘thinspiration’ trends (we’ve moved on from the thigh gap, apparently). I caught up on a piece about ‘diabulemia’ and thought about how diabetes adds an extra degree of difficulty to all things – even eating disorders.
The relationship between weight, food and diabetes is so complex and confusing. We’re told to maintain our weight to remain healthy (or prevent developing type 2 diabetes in the first place); we’re told to manage our cholesterol for heart health; we’re told that certain foods are taboo; we’re told we need to eat at certain times to prevent lows; we’re told we should eat a lot of carbs/not too many carbs (depending on who you listen to today); we’re told to cut sugar (tweet below gives you some indication to how I feel about that one!) and we’re told that our waist circumference is yet another number to think about.
Quitting sugar (or anything else for that matter) will not cure type 1 diabetes.
Now take diabetes away and we’re told a heap of other things.
There are polls about who has the ‘hottest’ body as if it is something that can be measured, and there are ‘half their size’ magazines at the supermarket. Ads for The Biggest Loser are already on our screens. Faux-concern is directed towards celebs who seem to have lost too much weight. Between fat-shaming and skinny-shaming, it appears no one is safe.
We refer to women’s bodies as ‘hot’ as if they are pieces of meat to be graded. There is no consideration for whether they also happen to be intelligent, have a strong social conscience or are good at horticulture. Or knitting or whatever it is that they are good at. Because it doesn’t matter. As long as they look hot.
Women become known as specific body parts (except Elle Macpherson who is known as ‘The Body’ which means that no one cares what’s going on in her brain). Pippa Middleton isn’t known for being Pippa Middleton. She’s known because her arse looked ‘hot’ in a white dress.
Apparently having a certain body shape makes a woman ‘authentic’. Curves, allegedly make a woman ‘real’, whereas being skinny somehow, miraculously, makes her less real. Believe me, as someone who has at times had some decent curves to hold on to and then at other times can see bones protruding, I’ve always been real.
I don’t think much about my weight. It’s never been an issue for me and I’ve never been on a diet. During periods where I’ve tried to eat better, the focus has been health, not weight loss. Also, I love Nutella too much to even contemplate cutting processed foods out of my life. Also, bacon. And cupcakes.
And yet.
Daily, I find myself struggling with how I feel about the dozens and dozens of images that I see. I’m confused at how I should feel about my own body. Today, I look in the mirror and see that I am probably the thinnest I’ve been in some time, meaning I’m closer to the ‘body ideal’ that the fad diets promise. And yet, I look at my collarbones – all sharp angles – and feel slightly ill.
Where in there is the message that to be happy with ourselves we need to – well, be happy with ourselves? Where are the messages of celebrating who we are for more than how we look in a pair of skinny jeans? In fact, can we stop referring to jeans as skinny, please?
The discussion needs to shift. We need to stop talking about weight loss and ways to look ‘hot’. No one can achieve the things being promised. In fact we’re all destined to fail. But health? Health is something we can all work towards achieving. And if each step is measured by our wellbeing – not the size of our thighs – we’re working towards something worthwhile and meaningful. Feeling better inside. And my guess is that will have far longer-reaching consequences than detoxing for a few days.
Every magazine in the supermarket is warning me that if I don’t start moving NOW my body won’t be bikini-ready in time for Summer. I’d tell you that I’m panicked by this, but I’d be lying. Usually, my eyes glaze over and I reach for another block of Lindt Intense Orange chocolate.
There will be no bikini wearing, but there will be moving. It’s time for me to get back on the walkies bandwagon, and what better way to get going than the threat excitement of a fun run.
I’m kicking off Summer by taking part in Take Steps for Good Health – Diabetes Australia – Vic’s inaugural summer festival. And like the optimistic fool I am, I’m going to do the 8km WALK (not run). There are several reasons why I believe I can safely manage to do this. For starters, I can walk – one foot in front of the other and all that.
Also, I proved to myself earlier this year, that daily walking around a park is actually not too torturous enjoyable, provided you have a friend with you and a football team doing sit-ups nearby. Also, in the last few months, I’ve walked – and I mean seriously walked – around Paris, New York, Barcelona and Marrakech, often for hours at a time. Admittedly, I won’t be able to stop along the way for a cupcake or sangria, but after the walk I will be taking advantage of Summer’s Healthiest Picnic which will showcase healthy living stalls, cooking demonstrations and entertainment.
Plus, I have promised myself a new pair of shoes (runners – boring) for the walk and a new pair of shoes (ballet flats – excellent!) afterwards, so I am looking at this as a win for everyone. Well, my feet.
You can join my team – THE CUPCAKES! – or join on your own by going to the registration page.
Disclaimer
Diabetes Australia – Vic is my employer. I have not been asked to write about this event. I’m just telling you about it so you can a) join me, b) laugh at me c) do both.
Diabetogenic 