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This blog has been quiet for the last couple of weeks because, honestly, there is nothing that I had to say that was of any value. Instead, I’ve been listening, learning, talking with friends and family, crying with friends, having difficult conversations with people. And feeling uncomfortable. I’m learning to not fight that discomfort, but instead examine it and work out how I can be involved in change.
Today, I’m dipping a toe back in slowly, and sharing this from New Yorker Cartoons (maybe this blog really is going to become nothing more than an appreciation page of New Yorker Cartoons and Effin’ Birds). This cartoon spoke to me. Because: tone policing.
Recent New Yorker Cartoon by Jason Adam Katzenstein. (Click for source)
I write about being tone policed in the healthcare space, and that is what I am writing about today. It’s happened for as long as I’ve spoken up about my experiences of diabetes and my thoughts and ideas about healthcare. I’ve been called aggressive so many times by HCPs who have not liked it when a mere ‘patient’ has suggested that they are being damaging to people with diabetes in the words they are using to talk to and about us.
The bolshie nuns who taught me at secondary school taught me that when women are accused of being aggressive (or strident), it is usually because we are being assertive. I’ve come to learn that it’s not just women. It’s anyone who has, for too long, been expected to just take what is dished up – and to accept it with gratitude.
Being assertive, being aggressive, being challenging and saying enough is enough should not result in being told to tone down. Or to be excluded from discussions unless we agree to be more moderate. Or more respectful. When that respect is truly a two-way street, then let’s talk about that. But for as long as power imbalances are at play, and HCPs insist on speaking on behalf of us, or only agreeing to speak with us if they like what we are going to say; or when HPCs feature more in diabetes campaigns because they insist on centring themselves rather than actual people living with the condition…well, then we don’t have true two-way respect.
Our diabetes community is not immune from tone policing each other. It’s happened to me. I continue to listen to type 2 diabetes voices because I can never expect to understand what they are experiencing in our community unless they tell me. It may be uncomfortable for me to hear – but that discomfort comes from a place of my complicity. It is not my place to tell them to moderate the way they are speaking about their experiences, just because it makes me feel prickly. But it does happen. In the timeline of my involvement in the diabetes world, I know that when I was first diagnosed, I contributed to the stigma many people with type 2 talk about, and then, as I learnt more, I moved to being quiet about it when I saw and heard it – even though I disagreed with it. Now I am trying to be a better ally and calling it out when I see it. And shutting up and listening and accepting what people with type 2 say.
We learn when we listen. We learn when we are open to accepting that we do not have all the answers. We learn when we stop being so centred on our own experience and try to turn the spotlight onto ourselves when instead we should be shining it on others.
We learn when we don’t tell people how they should feel or how they should speak.
One of the things the diabetes community does best is come together in tough times, and this new initiative from JDRF and Beyond Type 1 is a stellar example of how it can be done. JDRF and Beyond Type 1 formed an alliance last year, and have put together a terrific site providing important, up-to-date information and advise about coronavirus and diabetes.
But this is initiative goes way beyond just two diabetes organisations. In fact, over one hundred diabetes organisations, charities, and companies are helping to spread the word and share the information via their networks
Charities and diabetes organisations from Australia, USA, Canada, Italy, Chile, Portugal, Mexico, Bulgaria, Germany, India, Cyprus, New Zealand, Spain and other countries too are represented. I’m thrilled that Diabetes Australia is one of the community partners on the ever-growing list!
International organisations such as Life for a Child, ISPAD, IDF, NCD Alliance as well as industry partners have also rallied together, joining the other groups. This is big. Big! Huge!
The information on this new site is simple and clear. And it’s available in English, Spanish and Portuguese.
Plus, the advice is all practical and sensible. We might, in ordinary times, think that practical and sensible is boring, but I know it’s something I’m craving at the moment. And I’m also craving information that cuts through all the overwhelming noise and tells me exactly what I need to know.
This site does that.
Massive, massive kudos to JDRF and Beyond Type 1 for getting this initiative up and running. And well done to all the organisations who have happily supported and shared it. This isn’t about ownership and needing to be the holders of all information. It’s about ensuring people with diabetes have access to what we need to know, and what can help and support us. That’s only a good thing, right?
Click on the image below to be taken straight to the site. And stay safe. That’s really what we all want and are hoping for.
DISCLOSURE
I am employed by Diabetes Australia. I am on the Beyond Type 1 Leadership Council.
Until about three weeks ago, I’d never seen the words ‘social’ and ‘distancing’ in the same sentence. And then, suddenly, we were all being urged to practise this new form of keeping away from people.
What became apparent very quickly, however, was that social distancing could very easily lead to social isolation and that is not what the aim of keeping away from others was all about. Rather, it was about being physically distant from others. No more physical hugging, or cheek kissing. No more pats on the back or hand shaking.
But stopping physical contact doesn’t mean becoming disconnected to people. In fact, if there was ever a time that we need to feel connected to people, it’s now. And for me, I have never needed my diabetes tribe more. I think that a number of others might just be in the same boat.
I can’t begin to count the number of times I’ve spoken or written about how much I need my friends living with diabetes to help support my daily life with diabetes, or how they are an essential part of my diabetes management tool kit. In fact, I use this tweet so frequently when I am taking about diabetes peer support because it perfectly illustrates just how essential it is to me.
At the moment, as were locked in our homes, maintaining connections to others is far more difficult. My sister has just returned to Melbourne after over a year living on the west coast and apart from sitting in her garden while she stood at her front door, I’ve not seen been able to welcome her home. I’ve not hugged my parents for weeks, again seeing them only from out the front of their house as they stood on their veranda.
But when it comes to our diabetes peers, I’ve found it a little easier. Our DOC lives over the interwebs. We are physically distant pretty much all the time because most of the people that I spend my time talking to are literally in another country! I may not get to see my friends at conferences and meetings much in coming months, but that hasn’t stopped the messages and photos and videos and video calls.
Each night, before I turn my light out, I message friends to check in to see how they are. It takes nothing to send a quick message but the reassurance that there are others in the same boat, feeling the same fears and frustrations seems to calm and alleviate some of my stresses. And when I wake up there are always messages from friends who were awake while I slept checking back in on me. There are group chats with discussions that range from the incredibly serious to the (thankfully and much needed) absurd. Memes fly around and eyes are virtually rolled at some of what we are seeing online. And sometimes, but only sometimes, we talk diabetes…
I know that pretty much everyone around the world right now has some sort of concerns about COVID-19. Diabetes adds extra to that (because diabetes is a shit and just makes everything more difficult!). And that means that we want to unite with those who understand the extra bit of stress or pressure or anxiety. Find your tribe. And love them so, so hard. (Just do it from a distance at the moment….)
The other day, I went to a local pharmacy to buy some pump lines. There is one pharmacy in my neighbourhood that usually has insulin pump consumables on the shelf, so I don’t need to order them in. I just pop in when it’s time to top up my supplies and get what I need. I asked for a box of the lines I use. ‘There are two on the shelf,’ said the sales assistant. ‘Do you want both? You probably should stock up.’
‘No thanks,’ I said to her. I only ever buy one box at a time, usually when I am down to my last three or four lines. With the new box, I would easily have a six to eight-week supply.
‘Oh,’ I said to her. ‘You really don’t need to encourage people to buy more than their usual order. We don’t have shortages – that has been confirmed by Diabetes Australia and the Department of Health. Suggesting people stockpile is not a good idea at all.’
Are you stockpiling, or thinking about it? If so, I’m ask you to please reconsider.
I get that these are confusing and stressful times. I haven’t seen a roll of loo paper on the shelves at my local Woolies for weeks now. Other pantry staples are in high demand. And since the weekend, fresh fruit and meat sections have been almost stripped bare. Despite being told that we don’t need to panic buy, we’re seeing this behaviour and it is causing a great deal of distress to a huge number of people.
The last thing we need is for there to be the same situation when it comes to diabetes meds and supplies.
Here’s the deal: we are okay. There are no shortages. We don’t need to panic and stress. That has come directly from the Department of Health who has oversight of all drugs and NDSS supplies. It has also been communicated from Diabetes Australia*.
Where things have the potential to go the way of loo paper is if people suddenly start changing their buying behaviours. Then we have problems.
Think about it this way: before coronavirus, when was the last time you couldn’t find loo paper if you needed it? Never, right? And now, because there was some weird idea that toilet rolls were going to run out, people bought packs and packs of it. I know people who have hundreds of rolls of loo paper stocked up in their houses at the moment. I also know people who have been down to their last roll and are desperately trying to find kindly neighbours who will happily and readily spare a square (or two).
This is what happens when people change their buying behaviour and we really don’t want that to happen with diabetes medications and supplies.
WHAT YOU CAN DO
Be sensible! And don’t change from what you usually do.
What is your usual buying pattern? For me, I have always called in my insulin prescription when I open my second to last vial of insulin. That has been my pattern for years.
I buy pump consumables when I am down to the last few of each. A box of lines lasts me around six weeks; cannulas longer because I tend to reuse them a couple of times. I top up blood glucose strips when I’m down to half a box. (A box lasts me forever because I really only use them to calibrate, and I am rather lax at that).
The only, only thing I have a ridiculous stockpile of is lancets. Because: who changes lancets? And the only reason I have that stockpile is because every new meter comes with about ten of them. Plus, I think I still have the same box I bought 22 years ago at diagnosis…
I am making no changes to my buying pattern and behaviour and I would urge everyone to do the same. If people just keep on keeping on, we will not have shortages. If people start to make changes and panic buy, we could be in situation loo paper.
OTHER CONSIDERATIONS
We do have limits on our NDSS usage. I know I rarely think about this, because I never reach mine. I remember needing a special exemption when I was pregnant because I was doing a heap more BGL checks each day, but other than during that time, I have never needed to worry about getting to my limit.
ALL drugs and diabetes supplies have ‘use-by’ dates. The shelf life on some items (such as sensors) is shorter that on others. If you stockpile, there is a good chance that what you have hoarded will be out of date by the time you get through your supply. That will mean that when you eventually go to use them, they are not covered if something goes wrong (such as sensors not lasting their full time etc).
Also, if you reach your limit, that could mean that you are no longer able to access subsidised product, and you may be required to pay the full amount for them. For those of us who remember the days before pump consumables were on the NDSS, it suddenly makes running a pump VERY expensive…
PLEASE THINK OF OTHERS
When I left the second box of lines of the shelf at my pharmacy last week, I did that knowing it was likely that someone else would be in soon after needing the same lines. If you order two or three times more than usual, someone downstream is going to potentially have trouble accessing what they need when they need it.
Some people can only afford their diabetes supplies on pay day, or when they are running really low on supplies. They rely on being able to access things WHEN they need them and cannot stock up beforehand. Please be considerate of people in all situations.
If we all are sensible about this, we can completely avoid supply problems.
WHAT TO DO IF YOU ARE ALREADY STRUGGLING TO GET WHAT YOU NEED
Contact the NDSS (1800 637 700) with every single detail of what is going on in your situation. Provide details of the access point (usually a pharmacy) that has not been able to provide you with what you need. How long has this been the case? What are you trying to purchase? Have you tried somewhere else locally? (Remember that most pharmacies do not keep insulin or NDSS products in stock and they need to be ordered in.)
Also, please, please, please do not engage in online speculation of shortages online. This is what causes panic! If you have a personal experience, contact the NDSS!
TWO FINAL THINGS
- Keep washing your hands!
- IF YOU ARE STOCKPILING LANCETS, STOP IT. STOP IT NOW!! You KNOW you will never use them! And no one else will either, so they will haunt and mock you from your diabetes supplies cupboard/drawer for the rest of your days.
*DISCLOSURE
Yes, I work for Diabetes Australia, however I am not writing this because of that and have not been asked by anyone at Diabetes Australia or the NDSS to write this.
I am writing it because I am a person with diabetes who does not want to find herself struggling to access the meds and supplies that I need to stay alive, nor do I want any of my diabetes brothers or sisters to find themselves in the same situation.
No need to stockpile lancets. Or anything else!
I’m not in lockdown, but I am spending more time at home, and definitely avoiding crowded spaces where possible.
Cabin fever is going to be something that many of us have to deal with – more rapidly for some. I don’t really like being cooped up, and need to have things to keep me busy and entertained. So here are just a few things I’m doing to keep me occupied:
- Baking…lots and lots and lots of baking (So, if I can be selfish, I would ask people in my local area to please not stockpile all the flour, sugar and other baking necessities, because one of my coping mechanisms is getting into the kitchen and creating cakes, biscuits and slices!!)
- Homemade bread – this is new for me, but it is such a lovely and relaxing and rewarding thing to do
- Reading books that I have already read and love – comforting and familiar is good at the moment, but I’m keen for suggestions
- Netflix binges (Anyone watched Cheer?)
- Watching Nigella re-runs and getting cooking ideas
- Going for walks in the park with the dogs, and just hanging out with the pups. (They’re fun and don’t keep telling me how at risk I am)
- Cleaned out the pantry. (I know: odd, but it was therapeutic and very satisfying!)
- Effin’ Birds. Just do it – it will make you feel better!
I know this seems somewhat frivolous considering what is going on in the world, but sometimes, a distraction from the constant stream of bad news, and increasing numbers on a graph is a good idea.
And so, with that in mind, I’ll keep adding to this list, or do separate posts for recommendations. Help me out with book, and tv and movie suggestions. And recipes! Let’s see how people in our diabetes community are keeping distracted in the time of coronavirus.
Baking therapy.
Look what our community did! Here is the just released #SpareARose total for 2020. What a remarkable effort from a remarkable community!
The grand total of USD$73,748 will mean that, through Life for a Child, 1229 children with diabetes in under-resourced countries will have access to insulin for the next year. Amazing!
I guess there’s nothing more to say for this year, other than thank you, thank you, THANK YOU to all who contributed – whether that be through a donation or sharing the campaign.
Spare a Rose, Spare a Child will be back next year. Each year, we promise it will be bigger and better, and I’m sure that will be the case for 2021. Just watch us all go!
‘Art is not a mirror held up to society but a hammer with which to shape it’. (A quote usually attributed to German playwright and poet, Bertolt Brecht, but actually first said by Trotsky.)
Using different artforms as advocacy platforms is not new. In my time working in diabetes (18 years), I’ve been lucky to be involved in a number of different initiatives with foundations very much in creativity and the arts. Perhaps my previous life as a musician – and being married to one for over 21 years – means that artistic approaches are always on my mind when looking at how to tell the story of diabetes.
When planning for the IDF Congress last year, a gap came up in our session on advocacy and diabetes awareness initiatives. Our Living with Diabetes stream committee wanted to look outside the box and move away from traditional awareness campaigns. ‘How about we get Appleton in?’ And that’s how we had a street artist from New York appear on the program in Busan last year in a session with the same title as this blog post!
At that time, I’d not met Appleton in person before, but I had come face-to-face with his artwork. (He’s on Insta here.) There is something quite magical when wandering the streets of NY to look up and see a bottle of insulin stuck to the wall of an old building in SoHo, or in Chelsea. I’d snapped photos and shared them to Facebook, wanting to learn more about the artist: Who is he? What is his story? What is the response to his artwork? After meeting him in Busan, and then again at a mutual friend’s place for dinner in NY, Appleton hosted me and my family in his New York studio one rainy afternoon in January and I learnt a lot about his work.
Appleton on W 23rd street.
But even before meeting Appleton, I’d seen the power of how different artforms have the potential to talk diabetes in different ways.
Australian actor and playwright, Alan Hopgood’s play ‘A Pill, a Pump and a Needle’ from a few years ago, told the story of three women living with diabetes. Chatting after a chance encounter in a café over coffee and cake, this was a quintessential Melbourne story! But it was also a great way to start a conversation with those who were lucky enough to see the play. I sat in the audience a number of times, then took to the stage to be part of the panel discussion. Mine was one of the stories that had been brought to life on stage and it was incredible to hear the number of people who watched the play and said that they could see themselves in the women’s stories. ‘Their stories are my stories are their stories,’ I would think to myself.
One year, my team at Diabetes Vic held an art competition for World Diabetes Day, asking children living with diabetes to submit an artwork depicting diabetes. The only requirement for submission was that the artwork needed to somehow incorporate the Blue Circle. I remember the way these pictures offered a most meaningful and impactful representation of life with diabetes – in ways that we’d not seen before. I still have one of those artworks hanging in my office. Its 14-year-old artist managed to perfectly capture the pain of diabetes balanced perfectly with the hope she felt. I’ve been looking at it a lot in the last week, breathing in deeply and letting her feelings of hope wash over me.
A number of years ago, The Diabetes Hands Foundation asked for submissions for an anthology of poems by people with diabetes. Selected poems were compiled in the book ‘No-Sugar Added Poetry’ – a copy of which sits on my bookshelf and is frequently pulled down and perused. In her introduction, Lee Ann Thill says ‘From words, carefully chosen, purposely arranged, emerges a shared experience and mutual understanding’. In other words, peer support through poetry.
And while mentioning Lee Ann… Diabetes Art Day was created by this dynamic advocate and art therapist to encourage people affected by diabetes to use whichever artform they wanted to express diabetes. I remember sitting around the kitchen table with my family, trying to show how we feel about diabetes with coloured paper, glue sticks and rubber letter stamps and ink.
Illustrator, Janina over at Miss Diabetes is absolutely brilliant in her depictions of diabetes. And, of course, comics by Claire Murray are still my favourite diabetes superhero tales. And my friend Weronika at Blue Sugar Cube, creates stunning pieces – her Spare a Rose designs were so gorgeous.
Click to be taken to Weronika’s Insta page.
Australian advocate Jenna’s artwork is nothing short of stunning. I bought one of her beautiful images earlier this year and need to get it framed so I can stare at it endlessly when I should be writing!
Click to be taken to Jenna’s Insta page.
Melissa Lee has combined her beautiful voice, brilliant sense of humour and story-telling powers to sing diabetes in ways that get us thinking, smiling, laughing…and crying.
As for me? Well, I create through baking and have managed to create some pretty damn fun and delicious cookies to mark important days and initiatives in the diabetes calendar.
And of course, storytelling is an artform, and I know that for me personally, that is how I have connected and felt supported by people affected by diabetes from every corner of the globe. Words have a power that can convey the very helplessness, hurt, hope and heartbreak that is real in diabetes, and as I frequently say, the stories people tell have always helped me make sense of my own diabetes.
Art has the power to reach people in ways that other, more traditional methods don’t. Health campaigns are important, but sometimes they seem just one step removed from the reality of real life. Art has the power to bridge that step and bring people together, and provide a fundamental understanding of the story being told, and the people behind those stories.
So back to the quote that opened this post: art can – and does – shape how diabetes is seen within and outside our community; it can influence how people outside the diabetes community understand diabetes, and within the community, offer different ways to think of things. It can start conversations that encourage us to consider others’ ideas; it pushes boundaries and forces us outside our comfort zones; it gives voice to people in the community who don’t necessarily want to use words to express how they feel. Advocacy using art can also cut through the white noise of health campaigns – often they all look and sound so similar that they are easy to ignore. But for me, I think the most powerful thing they give is humanity and hope to a condition that is often so misunderstood.
In a couple of weeks, the diabetes conference juggernaut will descend on Madrid for ATTD.
This one is all about new treatments and technologies in the world of diabetes and, in its thirteenth year, looks to once again be a busy and enlightening meeting.
There is so much on the program that focuses on user-led technologies and initiatives. I think it’s fair to say that PWD have long recognised that technology in diabetes is more than just the devices we wear on our bodies. We have long used technology for support and to connect to others who help us manage the day-to-day life of diabetes, and to learn and share. DIYAPS may be about the systems, but grasping the role of online platforms and support is essential in understanding the #WeAreNotWaiting movement as a whole.
It’s great that a number of PWD already know that they will be part of ATTD this year, attending satellite events run by different device and drug companies. Some are on the program and some will be there through other opportunities and work.
The more the merrier, I say! Different voices with different experiences sharing and learning is always a great thing. And having the opportunity to meet people in real life after only seeing them online adds another dimension to our peer support networks.
For European diabetes friends yet to secure a place at ATTD, there is another possible avenue in, but you need to be quick. Launching at ATTD is the new #dedoc° voices program. Although #dedoc°has its foundations in Germany it is truly an international community, involving people from all over the world. #docday° events (always a highlight at these conferences) involve diabetes advocates from across Europe and the US, and even the odd Australian, too. It’s great to see this new initiative is helping more advocates get a seat at the diabetes conference table as active participants.
APPLY NOW
If you want to be considered for the #dedoc° voices program, you need apply, which is super simple – just go here, where you will find out all about the program and how to throw your name in the ring! Applications close on Friday, so chop chop!
Successful applicants will have their travel and accommodation costs reimbursed, and will receive full registration to the conference.
Good luck. And hope you see you there.
Disclosure
I am an advisor to the #dedoc° voices program. I do not receive any payment for this role.
I am an invited speaker at ATTD 2020. Lilly Diabetes is covering my travel and part of my accommodation so I can participate in the DOCLab advisory group meeting held during ATTD.
My packing-for-travel routine is pretty relaxed. We left for New York at 8am on Boxing Day and I started packing when we got home from our five millionth family gathering at about 10pm on Xmas night.
Admittedly, my laid back attitude to diabetes-supplies packing could be because I usually spend my time travelling surrounded by other PWD who are far better organised than I could ever hope to be. I know that if I run out of insulin, pack the wrong glucose strips for the meter I’m carrying or forget a charging cable, someone will be able to help me out. (I know this because these things have all happened. More than once. Way more than once.)
Anyway, I thought that I had done a pretty damn good job of throwing everything I needed together for New York, with back up supplies and contingencies. As we headed to the airport bright and early, still full of my mother’s Xmas zippoli, I felt comfortable that diabetes was going to be a relatively easy companion on this trip.
Turned out that I got it mostly right. Just not completely!
Issue one happened when I got a transmitter low battery warning the first week we were in NY. ‘Bugger,’ I thought, remembering back to the last time I recharged my Fenix G5 transmitter*. It was while I was sitting at breakfast one morning in Boston at ISPAD. I recalled that I definitely hadn’t had the transmitter plugged in long enough for a full charge. At the time, I thought I’d charge it fully the next time I did a sensor change…and then promptly forgot.
Of course, I had forgotten to pack the very specific charger required to recharge my Fenix. And I couldn’t for the life of me remember what it was called. ‘It has two little magnetic-y things on the side. And it’s kind of shaped like this,’ I said sketching a rough picture to the people behind the counter in about fifteen electrical stores around the city.
After getting nothing more than blank stares, I went directly to the source – Facebook – and sent a message to a couple of tech friends back home (including the bloke responsible for building the device). I had a response minutes later, placed an Amazon Prime order straight away and two days later my Fenix was charging on the kitchen counter in our apartment.
I had a re-batteried travel transmitter with me that I used in the interim (with layer upon layer upon layer of waterproof tape over the top of it because I had also forgotten to pack the resin needed to finish off that little device…), but as soon as the Fenix was fully charged, I reset it and shoved it back into the still in situ sensor. Crisis mostly averted.
And then there was the run in with Dex sensors. I’d sited a new sensor a day or two before we left and took two spares with me. I usually get three weeks out of a sensor, so thought that if lucky I wouldn’t even need to change one at all during our time away. But if I did, I would be right and have another there … and a spare just in case.
Well, best laid plans and all… the original sensor failed after less than a week. The second sensor did too, and the third sensor was actually faulty – the needle scarily poking out the end as I released it all from the packaging.
I believe the word I used at that point was ‘Fuck’. Loudly. And then turned straight back to Facebook with this:
A few NY friends reached out and shared the post, and within an hour, I had organised to meet up with someone who could help me out. Thanks a million to Stacey for connecting us, and thanks two million to Caroline who rode into Manhattan with her ridiculously beautiful baby to drop off sensors to me and have a coffee. (Off topic, but Caroline and I thought this was our first-time meeting, but we realised later that we had met for dinner one night in New York back in 2011!)
I am forever grateful for the support I receive from my peers online – and being my back up plan because I am so crap at diabetes. I do promise to try to do better when getting myself organised for travel, but I know that I am still likely to get things wrong. Diabetes is a hard task master and demands a lot. Slip ups happen.
But there is always help at hand. I was off Twitter at the time, feeling particularly vulnerable after the brutal time on there at the end of the year. Thankfully I had Facebook to turn to and a huge group of diabetes friends there to help me out. But what if that wasn’t the case? This is why our online spaces must be safe at all times, and why that power imbalance between HCPs and PWD, and how potentially harmful that can be, needs to be recognised. We need to feel safe reaching out wherever our peers are for whatever support we need. I did that and that’s why this blogpost is called ‘Peer support on the road’ rather than ‘Loopless in New York’!
Back to the important things.
* I use a rechargeable G5 transmitter with my Dexcom, built by a very clever bloke in Australia.
Diabetogenic 