You are currently browsing the category archive for the ‘Real life’ category.
It’s not really a great day in diabetes with news all over my SoMe feeds about a study published in Diabetologia which links high glucose levels with dementia, and a report from the Baker Heart and Diabetes Institute showing Aussies with type 2 diabetes are twice as likely to suffer sudden cardiac death.
Perspective is really important on days like today. I’m not in any way wanting to minimise the significance of the these reports – obviously we should take them seriously. But equally, I think we also need to find some positives in the diabetes space and remember that it is not all dire and critical.
Diabetes is serious and anyone who thinks otherwise doesn’t know diabetes. This weekend, a true giant in Australian diabetes died. Hal Breidahl was a pioneer who co-founded the Australian Diabetes Society. In a piece he wrote back in 1980 (and the language reflects that it was written in 1980!!!) about what people with diabetes want to know he states:
All diabetes is severe – unless adequately controlled. Patients often want to know ‘how bad is my diabetes?’ or ‘how severe is the condition?’ or ‘how high is the blood sugar?’ The notion that ‘I’ve only got a touch of sugar’ or ‘I only have mild diabetes’ should not be allowed to remain…
We get it. Diabetes is serious. Nasty things happen. We know it.
But I want to add to this. There is – there has to be – more to diabetes than the negative stories that make the news. Because in amongst those stories there are these things to remember, and I seek them out each day:
- Diabetes is serious, but it is also the condition I need to live with and find some semblance of balance as I work out how to fit it into my life.
- I need more than just the negatives, or bad news highlights. Because not offering the things I can do to live as best I can does nothing for my mental health – or for my diabetes health.
- Attention grabbing headlines that only tell part of the story do nothing to make me believe that I will be able to live well with diabetes. Also, ‘live well’ means different things to different people and it’s a moveable feast, but I know that the idea that we need to be complications-free to be living well is a flawed and dangerous idea.
- There is a lot of positive research about diabetes and we need to know about that too. Like this which reports people with type 1 diabetes are living longer.
- There is an undeniable truth that reading over and over and over again that diabetes is going to increase my risk of <insert whatever you bloody well feel like> is exhausting. I feel as though I have been kicked in the gut every time it happens even though I know that I am living the best diabetes life I possibly can.
- While diabetes may increase the risk of all sorts of things, sometimes it just doesn’t, because sometimes it’s not diabetes. If others could remember that, it would be useful so that any other affliction isn’t automatically lumped in the ‘It’s because you have diabetes’ basket, and not investigated properly.
- If you are talking about the nasty things that diabetes seems to increase the risk of, please acknowledge that the tools we have to live with this condition are not up to the task. Any failure is not mine as a person with diabetes. It is the failure of a body part that decided to not to what it is supposed to. It is a failure of the insulins currently available not being able to act fast enough. It is a failure of monitors not being accurate enough and delivery devices not delivering properly. Please remind people of that when you also mention that out of range glucose levels (AKA diabetes) means that we’re at a higher risk of not-so-great things.
- The bad stuff? It may not happen.
On a day like today when I am reading a lot about the diabetes things I really don’t want to think about, it is especially important for me to find some of that balance and search out the good news. Because otherwise diabetes tips into a really dark place where good self-care becomes almost impossible. There is light in diabetes. And sometimes, we need some help finding it. Sometimes we need to search a little harder to see it. Today is one of those days.
There were some really important and impactful sessions in the Living with Diabetes stream at #IDF2017 in December last year, but perhaps one of the most significant was the final session. Chaired by Professor Jane Speight, the session was titled ‘Diabetes and mental health: distress, diabulimia and emotional wellbeing’.
Talk about finishing with something to get people thinking and talking!
Bill Polonsky kicked off the session with a talk about how emotional wellbeing is affected by diabetes, and offered some ideas for addressing these issues.
(Can I just say what a stroke of genius it was to have Jane Speight and Bill Polonsky on stage together?! To have two champions of diabetes behavioural psychology in one place was definitely a highpoint of the Congress, and anyone who chose to go to a different session missed out. Big time! … Credit where credit is due to us all, Manny, Mary, Hakeem and Kelly!)
The session ended with Erika Backhoff from Mexico who gave an outstanding presentation on diabetes distress and the importance of appropriate training and understanding of the difference between diabetes-related distress and depression.
But for me, the highlight of the session – and one of the highlights of the entire stream – was Georgie Peters speaking about diabetes-related eating disorders. (Georgie writes a great blog that you can read here.)
Georgie began by sharing her own story of insulin manipulation. I’m not going to write anything about this part of Georgie’s talk, because you can see and hear it all here. (You’ll need to have a Facebook account to view it.)
Often, when people speak about living with a health condition, they are called ‘brave’. I absolutely hate it when people refer to me as brave because I live with diabetes (and all that comes with it). I’m not brave, I’m just doing what I need to do to stay alive.
But Georgie WAS brave and I’ll explain why.
Often, when we hear from people living with diabetes, what we hear about is people conquering mountains (literally and figuratively). We hear tales of the super heroes running marathons and winning medals. These are the socially acceptable stories of living with a chronic health condition: the ‘I won’t be beaten’ anecdotes. They give hope, are meant to inspire and make those not living with diabetes feel better about things because suddenly, it seems that this health condition is manageable and everyone with it is a champion.
But the reality for most people with diabetes is the same as most people with diabetes – we don’t run marathons, we don’t climb mountains, we don’t win gold medals. We are just doing the best we can with the hand we’ve been dealt. And sometimes, we deal with difficult stuff.
Sharing stories of the tough times and the challenging things that often go hand in hand with diabetes is not always easy – for the person sharing the story or for those reading or listening to them
But perhaps that’s exactly why we do need to hear about these stories, and ensure stories like Georgie’s are heard and given a platform.
Just because something is difficult or uncomfortable to listen to doesn’t mean that it should be hidden. This is why people don’t seek the care and assistance they need. It’s why people think they are the only one’s struggling and why they don’t know where to turn.
I could see some people in the audience shifting uncomfortably in their seats as Georgie eloquently, determinedly – and completely unapologetically – shared her experience and, most usefully, offered suggestions for how to work with people with diabetes and eating disorders. I know that I left with a far better understanding of the topic. And an even more resolute desire to keep these types of issues in the public domain.
Disclosure
I was the Deputy Lead for the Living with Diabetes Stream, and an invited speaker at the 2017 IDF Congress. The International Diabetes Federation covered my travel and accommodation costs and provided me with registration to attend the Congress.
Georgie owning the stage at #IDF2017
Towards the end of last year, I wrote about some things happening online trying to encourage people to openly and freely speak about being diagnosed and living with diabetes-related complications.
When conversations about diabetes complications are brought into the public domain, often two things happen.
Firstly, people start to talk. That whole cornerstone of peer support – reducing isolation and sharing stories – flings doors and windows wide open, and people, often gingerly at first, start to offer their own experiences. Inevitably, someone will say that they don’t speak about their complications because they fear the judgement that will follow. Or that they believe they are the only one their age facing complications because they have never met another person, or read a blog post from another person sharing a similar experience.
Secondly – and most damagingly – there is judgement. And it comes in spades, often sending some of those who had started to open up retreating back into the depths of diabetes taboos. This is not helpful for anyone.
So I wasn’t surprised when, during a useful discussion starting online about living with diabetes related complications – which resulted in some people willingly talking about their own experiences – the horribly judgemental comments started infiltrating the conversation.
I shared this post that I wrote almost five years ago about why we need to reconsider the way we speak about diabetes complications as I thought it was relevant to the current online conversation. In fact, everything I wrote in that post was still true because diabetes continues to be a terribly stigmatised condition and, within that, those of us living with complications seem to face additional stigma and judgement.
If for one second anyone doesn’t believe that statement, here are just some of the comments that I received (on LinkedIn and Twitter) after sharing the post:
‘If considering that many people who are type 2 diabetic quite simply exercise too little and eat too much fat…… which has immense financial consequences for the provision of healthcare…….. how else do you propose to get these people to lose weight and stop emburdening (sic) themselves on our NHS? If you take away the need to shame them you take away the most powerful way of making them take responsibility for their health.’
‘Sorry Renza but if we get complications of diabetes then we have failed. We are each responsible for own health and must try to maintain it at all cost.’
‘Diabetic complications do not happen with ‘perfect’ blood sugars. I agree that we must be supportive and sympathetic and the insulins available don’t help but it’s still the patient’s responsibility and not the doctors. Sorry if this doesn’t bode well with you.’
Is it any wonder that people are reticent to speak about developing complications if people are thinking like this?
I have written before that I believe diabetes has an image problem, because I can’t think of any other health condition that, if a treatment does not get the desired outcome, the person living with that condition is blamed. I have never heard someone being blamed if the cancer for which they are being treated does not end up in remission. I don’t know of anyone with rheumatoid arthritis who is blamed if their pain increases or their mobility decreases. I’ve not heard of someone with psoriasis being accused of not caring for themselves if their skin flares up.
But all bets are off when it comes to diabetes and fingers are pointed fairly and squarely in the face of the person living with diabetes if they develop complications.
Diabetes complications happen. It is, unfortunately, a reality for many people living with diabetes. I’m not trying to be negative or scare people, but we know that the longer we live with diabetes, the more likely we are to develop complications.
In this post, The Grumpy Pumper says: ‘Complications are a hazard of what we have. Not a failing of what we do.’ Maybe if we take that as the starting point we can take away the blame. And maybe if we take away the blame, we break down the stigma. And maybe if we break down the stigma, we can start having a real discussion about how we treat complications if they develop, and get to treating them.
And maybe if we stop thinking that developing diabetes and anything that happens after living with it is a shortcoming we can stop feeling so judged and shamed, because others will stop judging and shaming us.
More to read on this topic:
Riva Greenberg shared this one.
Sarah K from Sugarbetic wrote this.
I wrote this post on this day last year and today, when it came up in my TimeHop app reread it and realised it is a good one to consider at the beginning of the year as I’m trying to get myself in order. I’ve made some edits to some of the points due to changes I made last year in the way I manage my diabetes. (The original post can be found here.)
I suppose that I was reminded that being good at diabetes – something I’m afraid I miss the mark on completely quite often – does involve others who sometimes don’t necessarily understand what it is that I really need. And I can’t be annoyed if they don’t intrinsically know what I want and need if I can’t articulate it. This post was my attempt to do just that.
______________
Sometimes, I’m a lousy person with diabetes (PWD). I am thoughtless and unclear about what I need, have ridiculous expectations of others – and myself, and am lazy. But I’m not always like that. And I think I know what I need to do to be better.
Being a better PWD is about being true to myself. It is also about reflecting on exactly what I need and I hope to get it.
- I need to remember that diabetes is not going away
- I need to remember that the here and now is just as important as the future
- I need to remember that I don’t have to like diabetes, but I have to do diabetes
- I need to remember that the diabetes support teams around me really only have my best interest at heart, and to go easy on them when I am feeling crap
- I need to empty my bag of used glucose strips more frequently to stop the strip glitter effect that follows me wherever I go – edit: while this is true, I do have to admit to having far fewer strips in my bag these days due to my rather lax calibration technique
- I need to remember that it is not anyone else’s job to understand what living with my brand of diabetes is all about
- I need to remember that the frustrating and tiresome nature of diabetes is part of the deal
- I need to be better at changing my pump line regularly – edit: even more so now that I am Looping and think about diabetes less than before.
- I need my diabetes tasks to be more meaningful – quit the diabetes ennui and make smarter decisions
- And I need to own those decisions
- I need to see my endocrinologist – edit: actually, this one I managed to nail last year and even have an appointment booked in for a couple of months’ time!
- I need to decide what I want to do with my current diabetes technology. There is nothing new coming onto the market that I want, but what about a DIY project to try something new? #OpenAPS anyone…? – edit: oh yeah. I started Looping….
- Or, I need to work out how to convince the people at TSlim to launch their pump here in Australia – edit: even more relevant now after yesterday’s announcement that Animas is dropping out of the pump market in Australia
- I need to check and adjust my basal rates
- I need to do more reading about LCHF and decide if I want to take a more committed approach or continue with the somewhat half-arsed, but manageable and satisfactory way I’m doing it now – edit: sticking totally to the half-arsed way and happy about it!
- I need to remind myself that my tribe is always there and ask for help when I need it
- I need to make these!
And being a better PWD is knowing what I need from my HCPs and working out how to be clear about it, rather than expecting them to just know. (I forget that Legilimency is not actually something taught at medical school. #HarryPotterDigression)
So, if I was to sit down with my HCPs (or if they were to read my blog), this is what I would say:
- I need you to listen
- I need you to tell me what you need from me as well. Even though this is my diabetes and I am setting the agenda, I do understand that you have some outcomes that you would like to see as well. Talk to me about how they may be relevant to what I am needing and how we can work together to achieve what we both need
- I need you to be open to new ideas and suggestions. My care is driven by me because, quite simply, I know my diabetes best. I was the one who instigated pump therapy, CGM, changes to my diet and all the other things I do to help live with diabetes – edit: And now, I’m the one who instigated Loop and built my own hybrid closed-loop system that has completely revolutionised by diabetes management. In language that you understand, my A1c is the best it’s ever been. Without lows. Again: without lows! Please come on this journey with me…
- I need you to understand that you are but one piece of the puzzle that makes up my diabetes. It is certainly an important piece and the puzzle cannot be completed without you, but there are other pieces that are also important
- I need you to remember that diabetes is not who I am, even though it is the reason you and I have been brought together
- And to that – I need you to understand that I really wish we hadn’t been brought together because I hate living with diabetes – edit: actually, I don’t hate diabetes anymore. Don’t love it. Wish it would piss off, but as I write this, I’m kinda okay with it
- I need you to remember that I set the rules to this diabetes game. And also, that there are no rules to this diabetes game – edit: that may be the smartest thing I have ever written. I’d like it on a t-shirt
- I need you to understand that I feel very fortunate to have you involved in my care. I chose you because you are outstanding at what you, sparked an interest and are able to provide me what I need
- I need you to know that I really want to please you. I know that is not my job – and I know that you don’t expect it – but I genuinely don’t want to disappoint you and I am sorry when I do
- I want you to know that I respect and value your expertise and professionalism
- I need you to know that I hope you respect and value mine too.
And being a better PWD is being clear to my loved ones (who have the unfortunate and unpleasant experience of seeing me all the time – at my diabetes best and my diabetes worst) and helping them understand that:
- I need you to love me
- I need you to nod your heads when I say that diabetes sucks
- I need you to know I don’t need solutions when things are crap. But a back rub, an episode of Gilmore Girls or a trip to Brunetti will definitely make me feel better, even if they don’t actually fix the crapness
- Kid – I need you to stop borrowing my striped clothes. And make me a cup of tea every morning and keep an endless supply of your awesome chocolate brownies available in the kitchen
- Aaron – I like sparkly things and books. And somewhere, there is evidence proving that both these things have a positive impact on my diabetes. In lieu of such evidence, trust and indulge me!
- I need you to know I am sorry I have brought diabetes into our lives
- I need you to know how grateful I am to have you, even when I am grumpy and pissed because I am low, or grumpy and pissed because I am high, or grumpy and pissed because I am me.
- Edit: I need you to keep being the wonderful people you are. Please know that I know I am so lucky to have you supporting me.
These days, thanks to Loop, I think about diabetes a lot less on a daily basis. I guess it’s to be expected when suddenly my diabetes devices have become far more automated than previously which results in fewer button pushes, fewer reaches down my shirt to find my pump in my bra to make temp basal changes, or even boluses and fewer out of range numbers that need attention.
The downside of this (if there is a downside) is that I lose track of what’s going on.
Because diabetes is rarely front of mind, I’ve found it hard to remember when I did things such as pump line changes. One day during my holidays, as my CGM trace edged up inexplicably one day, I tried to troubleshoot why, but it wasn’t until I was drying myself off after showering that I became aware of how tender the site felt.
I stood there trying to remember when I had last changed the line, counting back the days, before I realised it had been almost a week. After swapping out the line for a new one and examining the site to make sure it wasn’t infected (it wasn’t – just a little red) I started setting a reminder in my phone so that I would remember when it was time for a change.
To be honest, the only times I can rely on thinking about diabetes these days are when that alarm goes off, or another alert reminding me that it’s time to refill my cartridge, restart my CGM sensor or change the battery in my pump. I’m completely dependent on those noisy reminder alarms to make sure I get things done, because my diabetes has become a little bit ‘out of mind, out of sight’.
It’s funny how quickly changes like these become the norm. And other routines have also been given an overhaul.
My waking habits, which always involved reaching for my phone to check the number on my Dex app, is different now. The other day, I came to realise that often I’d be awake, up and moving around for some time before remembering to check my glucose levels. In fact, often it wasn’t until I sat down for a coffee or something to eat that I bothered to glance down at my Apple Watch. I guess that’s what happens when all you see is a number in the 5s every single morning for six months. The novelty wears off and there seems to be little reason to actually check.
Of course, if I felt the gentle haptic of my watch, or vibration of my phone alerting me to an out of range number, I was right on it. But when there was no noise, I simply wasn’t listening to diabetes.
I suppose this is what I meant when I wrote this in my final post for last year: ‘I finish 2017 far less burdened by diabetes than I was at the beginning of the year.’ The burden of diabetes for me has been the monotony of it, the relentlessness of it, the way it permeates every part of my life. I would, quite easily, feel overcome and overwhelmed by these aspects of diabetes.
Without a doubt, that has changed. My new diabetes feels lighter and less encumbering. And with that, my attitude towards my diabetes has become somewhat kinder. I used to say I hated diabetes, but I think what I meant was that I hated how it was so present all the time.
These days, I feel less bitterness about my fucked up beta cells and the resulting long term health condition I have. Perhaps I feel ambivalent – but not in a ‘I’m over it and don’t care’ kind of way. No. Now, for the first time, I feel that diabetes and I are coexisting, if not happily, at least comfortably.
My day’s first though of diabetes is just before my first hit of caffeine. (Click photo for where to buy Casualty Girl pouch.)
My post at the end of last year about me limping to the end of 2017 was spot on. I don’t think I realised just how exhausted I was until the first day of my holidays when I slept until almost midday, not even getting up for a pee in the middle of the night. (Thank you, Loop!)
That pretty much set the tone for the next three weeks.
I’m not good at holiday holidays. You know, the ones where you spend all your time at home and just mooch around, losing track of which day of the week it is, and using public holidays as signposts for gentle reminders of how much time you have left until your return to the grind.
As it turns out, that was exactly the holiday I had and, most obviously, was exactly the holiday I needed. The initial pangs we all felt at not being in New York with friends, as we often are at this time of year, was eased thanks to visits from four different groups of NY mates all here either visiting family, or stopping by for their vacation. The brutal blizzards in that part of the world also made not being there a little easier, as instead, we managed to build up some vitamin D stores with leisurely walks around the neighbourhood, visiting favourite cafes or trying (unsuccessfully) to tire out the littlest dog at the park.
I spent time with my nose in books, scrolling through pointless social media feeds, trying to make sense of Trump (failed), binge watching Suits or just staring aimlessly at the sky.
I felt myself recalibrate, regroup and reboot until I knew that my breathing had slowed. The constant feeling of ‘what next’ gave way to ‘I’ll do it later’ and the most pressing thought was whether or not I really wanted to bake something right there and then. Usually, the answer was yes.
I realised that I started 2018 with a very different diabetes outlook to previous years. The same comfortable state in which I found myself once I started Looping seems to have moved in permanently. Perhaps it was having time to really notice it made me realise just how much my attitude to diabetes has changed.
I thought back to an early 2017 post last year where I decided that instead of making New Year’s resolutions I was going to have a word that became my guiding directive for the year. The word was ‘pause’ and I was going to do just that before taking on or tackling things.
Truthfully, I didn’t do too well with it all. I threw myself back into things with typical fervour, and the thing I’d hoped for by thinking ‘pause’ was that I would come to the end of the year and feel less overcome, exhausted and shattered.
Nothing changed and I think perhaps I’ve just come to the understanding that we all get like that at the end of the year.
Still no resolutions this year. But I do like the idea of having a word that I come back to when I need to feel centred. And it became clear and very obvious that my word for this year will be ‘focus’.
I don’t feel particularly unfocused. But I like the idea of a reminder to rein me back in when the distractions make it hard to concentrate on what’s important. Background noise can become overwhelming and losing the ability to stay focused and determined slips away all too easily.
And it’s a word that can mean lots of things. More focus on the diabetes issues that matter to me. Access and affordability to diabetes technologies, treatments and insulin will always be important to me both in my ‘real job’ and in my own advocacy efforts. Reducing diabetes stigma and ensuring language helps rather than harms people with diabetes. And peer support, because we need to know and feel that we are not alone. Plus, more focus on my family; more focus on ME.
We’ll see how it goes…
I’m back at work now: rejuvenated and ready to go. Happy New Year – it’s great to see you here!
Wearing stripes, carrying stripes, standing in front of stripes. Some things won’t change in 2018…
Is anyone actually sprinting to the finish line of 2017? Or are you all limping, crawling and seriously prepared to default and just sit down where you are now, probably about fifty meters from the end and admit defeat?
That’s where I am. I’m conclusively collapsed somewhere near the end: I can see it – but have decided that, quite frankly, the effort it’s going to take for me to cross the line, get a participation ribbon and high five the finish line referee is just not worth it. And I don’t think I have it in me anyway.
So, here I am. At the end of a super busy year. But then all years are busy, right?
But it’s been a good year. A really good year, when I stop to think about it. (Which is what I am doing as I set up shop here at the not-quite-finish-line.)
Lots of highlights, so here’s a bit of a recap:
Kicking off the year at the ATTD conference and being inundated with diabetes technologies and wondering how and when they would actually make their way into the hands of people living with diabetes.
Learning the importance of reframing our stories to capture the positive, not only the tough parts of them – or rather, understanding that the tough parts of what we have to deal with are often positive. Nick Bowditch at HealtheVoices explained that so beautifully.
Being pulled back into why we do what we do with a chance encounter in a café and, in the same week having a technology reality check at the #DAdvocatesDay.
It certainly wasn’t a highlight, although the way the diabetes community came together to try to address the frustration of a health organisation trying to control information at #2017ADA was pretty damn awesome.
And still at #2017, language! Yes, language was on the agenda and this would probably be one of the all-time highlights of the year.
The 4Ts campaign during National Diabetes Week made a lot of people in the Australian diabetes community happy as Diabetes Australia’s awareness campaign highlighted the importance and urgency of HCPs and the community understanding the symptoms of type 1 diabetes.
Convening and being part of the DAPeoplesVoices at #ASDSADEA2017. Not only was I firmly amongst my tribe, but we provided a fantastic stream of information from the conference to people who couldn’t be there. Thanks to Mel, Frank and Ash for being part of it!
Celebrating 30 years of the NDSS and remembering why we are just so damn lucky here in Australia.
Being involved in the IDF2017 Congress – as Deputy Lead of the Living with Diabetes Stream of the LWD stream, chairing a number of sessions and presenting in the Peer Support Symposium. There could not have been a better way to end the year!
But undoubtedly, for me personally, the most important, impactful and significant thing to have happened to me in 2017 has been starting to Loop. Without a doubt, this technology has revolutionised every aspect of my diabetes, from the way I sleep, eat and live. I finish 2017 far less burdened by diabetes than I was at the beginning of the year. I measure time in range rather than A1c to understand why it is that I feel so much better.
I have claimed the label of deliberately non-compliant as my own, and I wear it proudly, strongly, and most, most appreciatively.
So, thank you to everyone who has dropped by here, commented or emailed me to share your story. I continue to write here because of the support and love I get from people (I know, selfish) and am so grateful to everyone who reads Diabetogenic.
I’m going to take a break and will be back sometime in January. Between now and then, I’ll be baking away all my stresses and exhaustion! Much love – and baked goods – to you all during the festive season.
I was thrilled and honoured to speak in the symposium at #IDF2017 all about peer support. I shared the program with Chris Aldred, better known to all as The Grumpy Pumper, and advocate Dr Phylissa Deroze (you can – and should – find her as @not_defeated on Twitter).
Speakers in the peer support symposium at #IDF2017
When we were putting together the program for the symposium, the idea was that it would offer an overview of what peer support can look like, beginning with how diabetes organisations and community health groups can facilitate and offer a variety of peer support options, and rounding up with the perspectives of people with diabetes who provide and participate in peer support.
I spoke about how diabetes organisations in Australia, through the NDSS, offer a suite of peer support choices, urging the audience to think beyond the usual face-to-face or, increasingly, online peer support group. Activities such as camps for children and adolescents with diabetes, information events, education sessions (such as DAFNE) are all avenues for peer support. Peer support need not only take the form of a group of people sitting in a (real or virtual) room talking about diabetes in a structured or unstructured way. It can happen just by putting people with diabetes in the same space.
I’d never met Phylissa before, but I quickly learnt she is the definition of the word determined. She spoke eloquently about her own type 2 diabetes diagnosis which was anything but ideal. Instead of feeling beaten and overcome by how she had been let down by the healthcare system, she turned to her peers, finding a group that not only helped her diabetes management, but also gave her confidence to live well with diabetes.
Phylissa now facilitates an in-person support group for women with diabetes in Al Ain in the UAE, and is a huge supporter of, and believer in, the power and importance of peer to peer engagement and support in diabetes management. You can read more about Phylissa’s work on her website here.
Grumps, in true Grumps style, gave a talk about how his approach to peer support is more organic and certainly not especially structured. Although involved in some more planned peer support, he believes the most effective way he can support others with diabetes is on an individual, more informal way. Kind of like this:
Click image to see tweet.
And as if putting into practise his talk at the Congress, last week he started a conversation on Twitter about his own recent experiences of being diagnosed with an ulcer in his foot opening the door for people to speak about diabetes complications.
Click image to see tweet.
The way we speak about diabetes-related complications is often flawed. The first we hear of them is around diagnosis and they are held over us as a threat of the bad things to come if we don’t do as we are told. They are also presented to us with the equation of: Well-managed-diabetes + doing-what-the-doctors-say = no complications.
Unfortunately, it’s not that easy.
From then on, complications are spoken of in hushed-voices or accusations. Blame is apportioned to those who develop them: obviously, they failed to take care of themselves.
And because of this, for many people, the diagnosis of a diabetes-related complication is accompanied by guilt, shame and feelings of failure when really, the response should be offers of support, the best care possible and links to others going through the same thing. Peer support.
Back to Grumps’ raising diabetes complications on Twitter. After sharing his own story, suggested that we should not be ashamed to talk about complications.
That was the catalyst others needed to begin volunteering their own stories of complications diagnoses. Suddenly, people were openly speaking about diabetes complications in a matter-of-fact, open way – almost as if speaking about the weather. Some offered heartfelt sympathies, others shared tips and tricks that help them. But the overall sentiments were those of support and camaraderie.
The recurring theme of the peer support symposium at the Congress was that we need to find others we can connect with in a safe space so we can speak about the things that matter to us. It’s not the role of any organisation or HCP to set the agenda – the agenda needs to be fluid and follow whatever people with diabetes need.
END NOTE
While we’re talking peer support, how great is it to see that the weekly OzDOC tweetchat is getting a reprise this week, with Bionic Wookiee, David Burren at the helm. Drop by if you are free at the usual time: Tuesday evening at 8.30pm (AEDT). I’ll be there!
Disclosure
I was the Deputy Lead for the Living with Diabetes Stream, and an invited speaker at the 2017 IDF Congress. The International Diabetes Federation covered my travel and accommodation costs and provided me with registration to attend the Congress.
This week has been brutal. I arrived home from the IDF Congress very late on Saturday night after a very long journey from Abu Dhabi and since then, my body clock has had no idea where I am, despite my actual body being very much in the midst of Melbourne’s sometimes sweltering summer. My mind is all over the shop, sleep is something that happens if it wants (which it doesn’t really) and, for some inexplicable reason, I’m off coffee.
So, yes, I am a delight to be around right now. Want to hang out?
My time at the Congress, however, was one of those weeks that makes me feel so fortunate and privileged to do the job I do and have afforded to me the opportunities that come with it. Apart from a very full schedule of outstanding talks from leaders in the diabetes world, the congress was packed with advocates from around the world. I was totally with my tribe.
That’s me talking about diabetes and peer support!
There is lots to write about the Congress and I’ll do so in bits and pieces over the coming few weeks, but there were some stand out moments that I wanted to touch on and thought I’d try to do that now. (I’ve already started this blog post about four thousand, three hundred and twenty-eight times, so who knows how we’ll go here…)
Dot points – because they seem to take less energy and mental bandwidth…
- This is the only diabetes conference primarily aimed at healthcare professionals that has a stream completely and utterly dedicated to ‘living with diabetes’ (LWD). This is, in equal measure, brilliant and problematic. It’s brilliant because it means that there is a real opportunity for people with diabetes to be on the speaker program, have their accommodation, travel and registration funded, and be part of the conversation at the actual meeting. But it can be problematic because it means that often, there are not all that many HCPs in attendance at the LWD sessions. I believe that one way to improve this situation is to include PWD in other sessions as well as have an exclusive stream. More on that another time, perhaps.
Click image to see tweet.
- So with that in mind, if your HCP was at the Congress, I’d be asking them which LWD stream sessions they saw and have a stern talking to them if they reply with ‘not a one…’ Hopefully they will be more like UK Consultant Diabetologist, Reza Zaidi who not only attended a number of the LWD sessions, but also tweeted throughout them and asked questions.
(Click image to see tweet)
- I patted a falcon (not a euphemism). There were falcons at the Congress. I am not sure why they were there. But obviously, I was terrified. I tried to overcome my fear of birds by being brave and patting one. I am still scared of birds.
- There was a language session in the LWD stream (of course), but it was clear that a few of the exhibitors, presenters and those putting together posters for presentation could do with a refresher course on not using the word ‘compliant’. Call me, folks. I can help.
- There was a fascinating discussion during the language session when it was explained by someone asking a question that the word for ‘diabetes’ in Japanese is literally translated as Sugar Urine Disease. And yes – you bet that adds to the stigma of diabetes…
- And one final language point. There was a lot of talk about needing to ‘battle’, ‘fight’, ‘combat’ and ‘challenge’ diabetes as though this is a war. I’m not sure that this is a particularly useful way to think about it all.
Click image to see tweet.
- Getting a break from the Congress proved almost impossible. So I was so grateful to the diaTribe Foundation for forcing us out of the conference centre and into an Art Gallery with one of their Art Walk series events. We got a guided tour of the brand new (as in, open for less than a month) Abu Dhabi Louvre. Stunning!
The amazing Abu Dhabi Louvre at sunset
- For some reason, the IDF put me up in the middle of nowhere on a golf course. Perhaps they were hoping I would take walks. Or improve my swing. I did neither of these things.
- I am more than used to getting asked about the ‘thing’ on my arm. My Dexcom sensor and transmitter are quite obvious and people are curious. I almost have come to expect it and I am happy to answer questions as long as they are asked respectfully. I don’t, however, expect this at at a diabetes conference. And yet, that happened over a dozen times. But possibly, the most surreal experience was stepping onto the Dexcom stand in the exhibition hall and having a few of the sales reps nearly tripping over themselves to ask what it was, how it worked, what it felt like and why it was on my arm. And then they wanted to see the iPhone and Apple Watch app and ask more questions, suggesting that Congress attendees visiting the stand ask questions of me and another person sporting one of their devices. Obviously, I should be on commission…
- Diabetes conference exhibition halls can be confusing places. There are stands offering products that seem to be so far removed from diabetes that surely the exhibitors have accidentally turned up the wrong week for the wrong conference. I’m still confused by what the fluffy dolphin (pictured here with Annie, Georgie, Grumps and me) has to do with diabetes or what was happening on this stand.
Dolphins and diabetes… join the dots.
- The Abu Dhabi National Exhibition Centre (ADNEC) might look like pretty much every other conference and exhibition centre I’ve ever been to (they all do), but jeez, it was certainly the largest I’ve ever been to. It was, in fact, quite cavernous and a lot of the time seemed quite empty, despite there being over 8,000 attendees. All that space, and still nowhere to get a decent coffee.
- I chaired a really important session about diabetes complications. It was great to have an open, frank and honest discussion about living with complications and how they impact on the lives of people with diabetes. (Although, I could have done without the clip from Steel Magnolias to introduce the session on complications in pregnancy.)
- Finally, it was so lovely to see the wonderful Wim Wienjen’s legacy on show during the hypoglycaemia talk. The book he authored alongside Daniela Rojas Jimenez is due for publication soon.
That’s it in dot points for today. I’ll be back soon writing more about the Congress. (I guess four thousand, three hundred and twenty-nine is a charm….)
Disclosure
I was the Deputy Lead for the Living with Diabetes Stream, and an invited speaker at the 2017 IDF Congress. The International Diabetes Federation covered by travel and accommodation costs and provided me with registration to attend the Congress.
Towards the end of last week, I got a little rant-y at all the ads from Australian-based and owned companies filling up my social feeds, and my inbox, inviting me to shop up big in the Black Friday sales.
My understanding of Black Friday sales is that they happen the day after Thanksgiving. We don’t have Thanksgiving in Australia. And therefore, we don’t have Black Friday. I actually had to do a bit or reading up to find out the history of the whole Black Friday sale thing, because I’ve always associated the term (as do many Aussies) with bushfires from back in 1939 – not a fire sale of bed linen or mascara.
After Friday was done, it wasn’t over! By Saturday, suddenly, Black Friday ads morphed into Cyber Monday ads. And details of more sales flooded every online channel. Cue more ranting from me (who probably should get a hobby and stop complaining about crap).
Today, with all the consumerism over, it appears that it’s time for another catchy day: Giving Tuesday. But this time, I’m all over it and happy to get involved and will be making a couple of donations to charities supporting people who are unable to access basic diabetes supplies.
Diabetes is just such an un-level playing field. Some of us are in Facebook groups trying to work out how to source equipment for our DIY APS builds, while for others, sourcing insulin is impossible.
This quote from former IDF President, Professor Jean Claude Mbanya provides some much needed perspective, reminding us just how different life with diabetes can be around the world.
If you can, please consider making a donation to a diabetes charity. You can choose to go local, and support a charity that provides services to you and people in your area. Or you can look to charities supporting people with diabetes in less well-resourced countries.
Maybe you could get together with some friends or family or work colleagues and donate to the Life for a Child 1,000 Donors Campaign. Already, 113 generous people have pledged to give $1 a day to help provide insulin to children in need.
Alternatively, you can always donate to the Spare a Rose, Save a Child campaign (also supporting Life for a Child) where just AUD$6 per month is all it takes to provide a child with insulin.
Insulin for Life saves perfectly good insulin from landfill and transports it to people in countries where insulin is difficult to access. Learn more about Insulin for Life by watching this short YouTube clip and then donate here.
Giving Tuesday, while really only a US thing, is something I am more than happy to embrace. As we throw ourselves headfirst into the silly season, I think it’s really important to remember those who can do with some help. And with Xmas spending about to hit frenzy levels, stopping and thinking about how you and your family and family can help those in need. (Read here for a slightly Grinch-esque idea, but one that I still stand by 100 per cent!)
Diabetogenic 