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Just over half way through the Australasian Diabetes Congress and after a massive few days, I’ve lost my voice, my way and, my ability to form coherent thoughts. Thank goodness for links and stuff.
Grumps Down Under
Before the Austalasian Diabetes Congress (ADC) even kicked off, our skies darkened, a final Winter cold-blast hit the east coast of Australia and The Grumpy Pumper arrived. Oh, and Melbourne lost our World’s Most Liveable City crown the day Grumps arrived in my hometown. I’m not necessarily saying these things are connected, but that’s a lot of coincidences…
Anyway, Grumps and I spent the next few days drinking Melbourne coffee and tackling the issue of language and diabetes, and Grumps spoke about his #TalkAboutComplications work. The ACBRD team has written about his visit last week here.
Coffee. Because: coffee.
Once Melbourne had enough of Grumps, we headed to Sydney to do more work, including visiting the offices of Life for a Child and catching up with some of the team there.
#OZDSMS
After arriving in Adelaide, it was straight to the conference centre for the first gathering of Aussie diabetes advocates and bloggers for Ascensia Diabetes Care’s Social Media Summit.
Grumps was the special guest and as well as speaking about diabetes complications, he and I led a discussion about decision making in diabetes technology.
You can see what all the chatter was about by checking out the #OzDSMS tag on Twitter, (there was a lot of discussion!), and I’ll be writing more about it in coming days.
Hard at it!
DIYAPS at ADC
The next day, ADC kicked off with a symposium on the Brave New World of Diabetes Technology. Three early Aussie loopers – Cheryl Steele, David Burren and me – took to the stage and you can watch all our talks here:
New DIY Diabetes Technologies Position Statement at ADC
And if you make it all the way to the end (the symposium went for 2 hours all up), you’ll see Diabetes Australia CEO, Greg Johnson, launching Diabetes Australia’s new position statement about Do It Yourself Diabetes Technologies. I am so proud of this world first position statement, something that all diabetes stakeholders from all over the globe have been crying out for. (A reminder to anyone asking ‘Why don’t we have one of those?’: please don’t reinvent the rule. Adapt and use this for your jurisdiction and get it out there to start the conversation.
(Click link to go to position statement)
PWD on stage at ADC
Later in the day, the stage in Riverview 7, I was pleased to stand on a stage crowded with some wonderful diabetes advocates for an ADC first – a symposium on Co-design. More about this another time, but some familiar Aussie advocates shared their work which has really advanced the role of people with diabetes in the development and delivery of diabetes services, activities and resources. I was so pleased to be able to show the new Mytonomy ‘Changing the Conversation’ video as an excellent example of co-design.
Melinda Seed and Frank Sita at the co-design symposium
Sexy new pump hits Australia
And rounding out day one was the official launch of the Tandem t:slim pump which is making its way to our shores next month. This is a sexy, sexy little pump and I know there are going to be a lot of people very excited about it! (The pump is being distributed by AMSL Diabetes in Australia, so keep an eye on their website for more details.)
PWD at ADC
Pleasingly, there has been a presence of people with diabetes at ADC. Probably this is most visible when reading social media updates from the #DAPeoplesVoices. David Burren, Melinda Seed and Frank Sita have been invited by Diabetes Australia to provide updates and commentary of the Congress. They are tweeting machines and have been covering sessions, live-tweeting throughout. But that’s not all! Ashley Ng facilitated a Twitter workshop, encouraging HCPs at the event to get on Twitter and share what they were learning. Kim Henshaw is here from Diabetes Victoria; Tanya Ilkew from Diabetes Australia is also here. Grumps is here. And I’ve been doing what I can in between presenting and meetings.
I crashed last night with my voice gone, and fell asleep wrapped in the memory of a brilliant few days of impactful and meaningful advocacy efforts. There’s so much more to do. But these sorts of events, and opportunities to spend time with other people with diabetes who are certainly on the same wavelength and have the same commitment to bringing in the voice of PWD to all discussions, certainly help to advance our cause.
And one more thing
It looks like it’s that time again, Australia…
Disclosures
I was involved in the planning for the Ascensia Diabetes Care Social Media Summit and attended and spoke at the events Grumps attended. I did not receive any payment from Ascensia for this involvement or for attending the Summit. They did provide lunch and dinner, and gave me a free Contour Next One blood glucose meter. And an almost endless supply of coffee. Ascensia has not asked me to write about any of the work I’ve done with them. But I will, because I like to share and I know there are people who are desperate to know what was going on while Grumps was here!
Grumps was here as a guest of Ascensia Diabetes Care, who brought him to Australia to be the keynote speaker at the Ascensia Australia Diabetes Social Media Summit and to speak at other events about his #TalkAboutComplications initiative.
There is never a better time to employ the WAIT (Why Am I Talking) philosophy than when speaking with someone newly diagnosed with diabetes. Even if there is lots I’d like to say, as I wrote in this oldie from the archives.
________________________________________
She called me because someone had told her to get in touch. ‘Speak with Renza. She gets it.’ Is what she was told. She we organised a time to meet and over coffee we talked. And she searched my face for reassurance as she told me how scared she was feeling.
When I meet someone who has recently been diagnosed with diabetes, I say very little. I listen. I ask questions and gently try to find out what is going on in their head. I don’t say much about my own diabetes, because I don’t want to imprint my experience in their mind. Everyone feels different at the time of diagnosis and working out exactly what they are feeling needs some time.
I listen and sit there quietly and try to reassure and be positive. I nod a lot, and let them talk and vent and, if they need to, cry. Usually people cry. And I let them know it is okay. I did all of this with the woman who called me. She did cry and she did vent. And then she cried some more. And I said hardly anything.
But this is what I wanted to say:
- It is okay to feel scared and uncertain. Or angry. Or completely and utterly ambivalent.
- Because, you see, there is no right way to feel right now – or ever – about living with diabetes. And equally, there is no wrong way to feel.
- You don’t have to work this all out this week. Or next week. Or next year. In fact, you never have to work it out.
- But do work out what you can manage today and do that. And whatever it is, it’s enough. It. Is. Enough. And well done you for doing it!
- Find your tribe. In fact, this is what I want you to know more than anything. Others who are also ‘doing diabetes’ will help you make sense of this new world. You have to be ready to do that, but do be open to the idea. I wish that someone had introduced me to others with diabetes when I was first diagnosed. It took me over three years to meet another PWD and I felt so alone in those three years.
- And when you do meet people, don’t think that anyone has this diabetes thing worked out completely. Even those who say they do…
- …because, there is always more to learn, which is daunting and exciting in equal measure.
- I promise you – whatever you are feeling, whatever you are thinking, someone has had that same feeling and same thought. You are not alone. (Reading diabetes blogs will prove that to you!)
- Diabetes may feel like it is about to take over your life and it probably will for a little bit. And there may be times that it does again. But it will not define you for the rest of your life or determine who you are. It can be as much or as little of your identity as you choose to let it.
- You will be okay. You will be okay. You will be okay. (And, yes, I am saying that for your benefit as much as my own!)
- There will not be a cure in the next five years. Or even ten. I am not saying that to be pessimistic, I just want you to understand that hope is really important in living with diabetes. But unrealistic expectations that won’t come true are not going to give you that hope; they will destroy it.
- Ask questions. All of them! You may not like the answer (i.e. see previous dot point), but ask anyway. You will be amazed at the things you learn.
- Your diabetes; your rules. This will become more and more apparent the longer you live with diabetes. You don’t need to explain, apologise or justify anything you do to manage your diabetes. Ever.
- Anyone who makes you feel crap about your diabetes – whether it be the fact you have diabetes, or how you are living with it – needs to fuck off. (And if you can’t tell them that, find someone in your tribe who can! I am happy to be that person. Truly! I have the mouth of a trucker and I’m not afraid to use it.)
- Do not watch Steel Magnolias. Ever.
- Right now, this probably seems like it is the worst thing that will ever happen to you. This may sound odd, but actually, I hope it is. Because I know you can get through it.
- You will laugh again. And smile and feel light. You will not think about diabetes for every minute of the rest of your life. It will be there, but it does not have to rule your very being. It certainly doesn’t rule mine. You will learn where to place it in your world, and that is where it will sit.
- You do not need to feel grateful that you have been diagnosed with diabetes and not something else. Because it does suck. It’s good to remember that and say it every now and then. Or shout it out. While drunk.
- Go buy a new handbag. Trust me! If you want, I can help you to justify it as needing a new bag to cart around all your diabetes crap, but just do it for yourself. And while you’re at it, a new pair of shoes. Just because!
- Call me. Anytime. If you want. Only if you want. And even if it just to hear me tell you that you will be okay.
But I didn’t say those things. I only said this: You will be okay. I know this to be true because you are strong and resilient and capable. I know this to be true because many others have walked this path and worked out how to make it okay for them. You will do that too. It will be okay for you.
And I hope that was enough. Or, at least, enough to start with.
I have a very scientific way of collecting info to share in these Internet Jumbles. I make weird notes on my phone that absolutely make sense when I note them down, and then make absolutely no sense when I revisit them to put together the latest edition. (Case in point: ‘DMK mine’ had me stumped for a few hours until I realised that was shorthand for the HypoRESOLVE piece on Diabetes Mine. The DMK is because the meeting was in Copenhagen. Of course it makes sense. Perfect sense.)
Half the time, even after trying to work it out, I still can’t understand my notes, so there is a shedload of stuff I wanted to share that is still a mystery trapped in my iPhone.
But! Here are the ones I was able to decipher. Buckle up…it’s a long one.
Ask patients? That’s novel
Results of a review of international literature examining patient involvement in the design of healthcare services showed that patient engagement can inform education (peer and HCP) and policies and improve delivery and governance.
I am always interested to read these sorts of articles, but must say, my response is often an eye roll and the words ‘No shit, Sherlock’ muttered under my breath.
Research and people with health conditions
What is the role of people with health conditions when it comes to research? This editorial from BMJ suggests that full partnership is the best way.
And this infographic from Public Health Research and Practice about how to involve consumers in health research is also useful.
Thanks for listening
It’s so nice when people actually take home some tips and tricks from presentations I’ve been involved in. This tweet over the weekend from diabetes educator Belinda Moore (referring to a symposium at last year’s ADS ADEA meeting in Perth in which I was fortunate enough to be involved) was gratifying.
Peer support remains an absolute cornerstone of how I manage my diabetes as effectively as I possibly can. It is those others walking the same road who help me make sense of a health condition which takes delight in confusing the hell out of me!
The driver’s seat
This post from Melinda Seed underlines why she believes that the idea of diabetes being a ‘team sport’ is not especially accurate.
Complications and language
The awesome PLAID Journal (which you really should bookmark and read) published a piece just as ADA kicked off about why we need to change the way we speak about diabetes complications.
The piece was written by me and Chris Aldred (AKA The Grumpy Pumper), bringing together Grumps’ #TalkAboutComplications initiative and my constant banging on about language. (I first wrote about needing to reframe the way we talk about complications five years ago in this piece. Every word still holds true.)
You can reads the PLAID Journal piece here. And please share. This is a message that we need to get out.
Wellness is not the same as medicine
My huge crush on OB/GYN Dr Jen Gunter only increased after she published this piece in the NY Times last week.
I have written before about how damaging the ‘wellness industry’ can be in diabetes, including this piece on the language of wellness.
Diabetes Voice reboot
The IDF’s magazine has had a reboot and is not delivered in a digital format. Check it out here.
Well, that’s candid…
This photo of Cherise and me snapped at Diabetes Mine’s DData Exchange is hilarious in itself, but Amy Tenderich’s caption is gold!
(Click for source)
Right device, right person, right time
Dr Kath Barnard’s piece in Diabetes Medicine Matters reiterates her message from the 2017 ATTD meeting (I wrote about it here) about the importance of matching the right device at the right time for the right person.
What are the barriers to preconception care ?
This piece was just published in Diabetes Research and Clinical Practice looking at the reason women with diabetes may or may not attend pre-pregnancy care. (I was a co-author on this piece.)
‘If only there was a….online community for people with diabetes’
That comment came from a HCP at a diabetes conference a few years ago – just after someone (maybe me? I can’t remember…?) had literally just given a talk about the diabetes online community.
The DOC is not new – it’s been around for some time – and this great piece from Kerri Sparling gives a history of the DOC.
HypoRESOLVE on Diabetes mine
I was interviewed by Dan Fleshler from Diabetes Mine about HypoRESOLVE. You can read his piece here – it gives a great overview of the project.
On a break
I’m going to be taking a little Diabetogenic break for the next couple of weeks. The rest of the year is shaping up to be super busy, so I thought I’d use the next fortnight to get myself organised.
I’ll be sharing some old posts from the Diabetogenic archives and expect to be back just in time for the Australasian Diabetes Congress which kicks off in Adelaide on 22 August.
In the meantime, be well and be kind to yourself.
I was in Sydney last Friday for a day of meetings, and once they were done, I met up with a new diabetes friend, Amira, who I met only a couple of months ago, but had instantly connected with in that way that only those dealing with messed up beta cells do.
I met her at work and then we walked to have a coffee and a chat. After a while, our conversation turned to her work as an optometrist. Amira told me about the camera she uses to do retinal scans.
I mentioned that I’ve never had a retinal scan as part of my eye checks. My ophthalmologist always dilates my pupils and spends a good amount of time looking at the back of my eyes for any changes. This is how my eye care has been managed and I have always been happy with it (and by ‘happy’, I mean: ‘it makes me cry just thinking about it, but I do it anyway’).
‘Would you like me to take a photo of your eyes?’ Amira asked me. ‘You can send the images to your ophthalmologist to keep on file.’
I thought about it for a moment and took a deep breath before answering. ‘Sure,’ I said. ‘Let’s do that! Thank you!’
We walked back to her office and Amira explained how the camera worked and how I needed to position my eyes. After scanning both my eyes, she sat with me and explained exactly what she could see. She pointed out each part of the eye and what she was looking for and patiently answered my questions. She showed me how she could see the artificial lens that had replaced my own when I had my cataracts removed. (And she clarified that the black spot that I was the first thing I saw was actually a mark on the camera – not my eye.)
She told me exactly the same thing I’d heard back in May when I most recently saw my ophthalmologist: ‘Looks great. There’s nothing to be concerned about.’
I wish that THIS was the first time I had ever seen the back of an eye of someone with diabetes, instead of the frightening image shown to me less than eight hours after being diagnosed, when my first endo showed me a photo of an eye with – apparently – diabetes-related retinopathy. I say ‘apparently’ because I had no idea what I was looking at and had no idea what anything meant.
But that image, accompanied by the words ‘This is what happens with high blood sugars,’ has resulted in years and years of seeing an out of range number on my glucose meter and automatically imagining my retina decomposing…behind my very eyes.
This, combined with other scary images used as part of diabetes awareness campaigns, not to mention the occasional poster in the waiting rooms of various HCPs, is why I am so terrified about anything to do with eye care.
And when we also add the blame and shame that inevitably accompanies discussions about complications, using language that disempowers, it is no wonder that my response to Amira asking if I wanted a photo of my eye was to automatically panic.
Despite twenty years of regular checks, with positive outcomes and a supportive ophthalmologist, the legacy of that initial encounter and subsequent frightening images have taken their toll.
Amira emailed me the images of my eyes, and I’ve spent a long time looking at them – because I know what I am seeing (plus, my eyelashes look awesome!). This is information. It is a snapshot in time and, thanks to Amira’s explanations, I understand what is going on .
‘Come and have another scan next year,’ Amira said. I might just do that. While it will be great to have annual images as a comparison, the best part will be I get to spend time with my awesome new diabetes friend!
Amira has provided me with this explanation of the camera she uses and what it does:
‘Ultra Wide Daytona Plus provides contrast and both red-free and green-free filtering, as well as autofluorescence modalities (so we can see layers in front and behind the retina and assess which part is affected).
Photo documentation means we can monitor and track overtime, allowing for early detection. 200 degree retinal scan compared to a standard scan that often gives around 45 degree view.’
Part of my work involves attending diabetes conferences both here and around the world. Sometimes I have a speaking gig, other times I’m there for meetings, and always I’m there to learn as much as I can about the latest in diabetes.
I love this part of my job in equal measure with not loving it. The ‘love it’ part is because I get to meet with and hear from some absolute superstars in diabetes research and get front row preview seats to what they’re working on. And I love it because I get to see other advocates who are there for the same reasons I am.
The ‘not love it’ part is because I spend a lot of time away from my family and ‘real life’. I feel enormous mother guilt (this time I missed the kidlet’s Winter Music Concert) and feel lousy for leaving lists of plans and schedules for people other than me to manage. Plus jet lag. I talk about jet lag so much because these days it is absolutely kicking my arse as it turns me upside down and into a bumbling, confused, unintelligible mess.
I realised when I was at ADA in Orlando that all my overseas DOC friends have only ever seen me at my jet lagged, time-travelling worst. They get exhausted, grumpy, vague, annoyed me. And they get me doing weird things like falling asleep in front of them only to suddenly get a second wind and become almost hyperactive where I speak a lot – and really quickly – about weird things such as Australian-isms that I believe they absolutely must start to use in their day to day vernacular. (Only click on this tweet if the eff word and spiders don’t offend you…)
And then, I reach a point where I abruptly stand up and say ‘That’s it!’and just leave and head to bed, often mid-conversation. Why they still want to talk and hang out with me is actually a mystery!
But I am glad they do want to spend time with me, because sometimes, being at a diabetes conference is really hard going emotionally.
We sit there listening to some pretty tough stuff; scary stuff. We hear ourselves being spoken about as ‘subjects’ in research which takes away our ‘human-ness’ and makes us sound like rats in a lab.
We are referred to with words that make us sound like petulant children (‘non-compliant/non-adherent/failed’ etc.) and all we can do is tweet our frustration (and language positions statements) begging that presenters be considerate in the words they use.
We hear scary, scary tales of all the things that can go wrong with diabetes in a variety of different situations. I reluctantly walked into an 8am session on diabetes and pregnancy, and even though that ship sailed a few years ago for me now, I still brace myself for the research showing that diabetes can and will impact on our developing babies, and children once they are born. That mother guilt I spoke of early is gets turned into mother-with-diabetes guilt which is a monster of proportions all to itself. (Of course, the wonderful Helen Murphy’s talk at 8am was not scary or mother-with-diabetes-guilt-inducing. Instead it was full of interesting facts about how APS impacts positively on diabetes pregnancies. Hurrah!)
Diabetes-related complications are spoken about in matter-of-fact ways that zone in on specific parts of our body and suddenly we stop being whole. ‘The diabetic foot/eye/kidney’ is still attached the rest of us, and yet whole sessions dissect them from our bodies and focus solely on that part of us, forgetting how connected we are to them (literally and figuratively!)
We are told about how diabetes increases the risks of so many, seemingly unrelated problems that can only make me feel as though the cards are stacked so against us that, sometimes, diabetes just isn’t fair. (See also – or maybe don’t – this released today…)
We sit there listening to advice on how things could be improved and sometimes, shake our heads at the disconnect between what is reality to those of us actually living diabetes and the ideas from researchers and clinicians. We wonder what – if any – engagement there has been with the people this advice is meant to serve.
It can be – it is– emotionally draining, exhausting, frustrating.
Those moments when a friend’s sideway glance, or eye roll, or a snarky comment in response to yet another kick in the gut because diabetes is all bad news, is a reprieve from feeling a little shaken. (Of course, it’s not all like this. Often we sit in sessions and feel that those presenting are truly championing our efforts and we do high five through those presentations.)
And those evenings when the sessions have finished, and the official dinners are over and we simply sit together, debrief, refocus and put diabetes back in perspective, make me whole again. It’s the same at every conference. The people may change depending on the location of the conference, but there are always people there. And I’m grateful for that, because I may return home exhausted and jet lagged, but I’m not overwhelmed at what I have seen and heard. Which I fear is how I would be if it wasn’t for the caring, smart, understanding, wonderful people in this tribe .
Tribe at ADA
Dear Channel 9
Hi. You don’t know me, and to be perfectly honest, I don’t really know you either. My TV tastes run less to the sensationalist and more to the Netflixist, but nonetheless, here I am writing to you.
You see, I want to talk about Drew Harrisberg for a minute.
So, I work for a diabetes organisation and as a diabetes advocate, and one of the best things about my work is that I get to meet people with diabetes from all over the world and from all walks of life.
One of those people is Drew Harrisberg, who I met through some diabetes device events that I have facilitated.
Drew’s on the far left. With the red circle around him.
Drew is an exercise physiologist and a diabetes educator (as well as a singer/songwriter, model and also probably saves kittens from trees/rescues small children from wells/helps grandmothers across the street with their grocery shopping.) Oh – and he happens to have type 1 diabetes.
I can tell you now, Drew and I have very different interests. He’s all about physical activity. I’m all about sitting around drinking coffee and making cookies. But, we both have AWOL beta cells and love dogs, so there’s something in common there!
Just after the latest Abbott DX2 event where we caught up, I was watching TV and there on the screen was Drew’ face. He was on the promotional advertisements for Ninja Warrior.
Okay – full disclosure here: I had to see the ad half a dozen times before I worked out the name of the show and then I had to Google it to work out what the hell it was all about. I’d never heard of Ninja Warrior before. Now I know it’s a reality TV show involving ridiculously athletic and fit people engaging in competitive torture completing obstacle courses. (I know – it’s an absolute fucking miracle I’m not all over this and wanting to be part of the action…)
Anyway, after seeing that Drew was involved, I did get a little interested. While my reality show viewing generally extends to Masterchef (because: Nigella) or Grand Designs (because: Kevin McCloud), I was suddenly keen to know just how Drew would be presented on the show.
Reality TV show producers love a back story. In fact, they’re ALL about the back story. And I figured that Drew’s back story was going to be about the fact that he lives with type 1 diabetes. I could hear the emotive music playing already and see Drew running slow-mo along the beach, his dog beside him, as his voice told the story of his diagnosis and how, despite the obstacles he faced by diabetes, he could still face the obstacle course of Ninja Warrior (and, fuck! I should be writing copy for that show right now; give me a job).
I do love a little bit of diabetes awareness on mainstream TV. If there is an opportunity to bust some myths and smash some stigma, I’m all over it, and I figured that Drew’s appearance on the show could do that. Plus, I’ve been told that kids LOVE this show, and I thought it would be great for kids with diabetes to see Drew not letting diabetes be a barrier to him being his very-best-obstacle-course-beating self.
So, I was resigned to watching the show when it starts (soon, apparently) and cheering on my mate from the comfort of my sofa (while drinking coffee and eating the cookies that I choose to bake in lieu of doing any exercise). I figured that the diabetes community here in Australia would really get behind him, hoping that he would not have to deal with any pesky hypos just as he was…well…doing whatever one does on an obstacle course.
Except, then I noticed that he was no longer in the advertisements. Where Drew’s face had once been, I suddenly saw the perfect smile of someone else (someone, I assume, with a functioning pancreas). I checked the website and he was nowhere to be seen. It appears that Drew has completely disappeared from all Ninja Warrior promotional materials. (Wait! Is this the ninja part of the show? I still don’t really understand it…???)
Although I may be a tiny bit pleased that I don’t need to commit to a three month reality show, I am so disappointed that having someone with type 1 diabetes on prime time TV has been lost.
So, Channel 9 – any chance you can share what’s going on? What have you done with Drew? Why has he disappeared? Why have you completely forsaken this awesome opportunity to showcase someone on your show who is living with a serious and seriously challenging health condition?
Looking forward to learning the full story…
Best,
Renza
The diabetes online community is big place. It is a global network of many, many people, living many, many diabetes lives, with many, many experiences. Those experiences colour and shape the way we react to certain situations and help to focus our attentions on issues that become our ‘thing’. For some, that may simply be to find and/or offer support from and to others walking the same path. Reducing isolation is one reason that people feel that online support is so powerful, as boarders (of all sorts) melt away.
I have sought great solace in the community many times. This community has seen me through diabetes issues where I have felt lost, hopeless and terrified; they have supported me through times of personal anguish; they have cheered for me when I’ve done something worth celebrating. And they have had my back, shining a light for me until I was able to hold it up myself again to get out of the black tunnel that had engulfed me.
I first joined Twitter back in 2009, but it was in 2011 that I first started to really reach out and connect. It was participating in DSMA chats that first exposed me to the global online community and I was astounded. I truly had no idea that people existed who were genuinely there to support others in truly selfless ways. That support meant different things to different people and was offered in different ways. For some people – well one person – it was starting DSMA and not only asking questions each week as we all came together to share our experiences about a variety of topics but providing a listening ear and helping hand outside that hour of power. For others, it was jumping in when they could to respond to a question, or virtually high five a diabetes victory.
To me, it truly felt like a cocoon of people who were there to do good.
I am not naive enough to think for a moment that it was always perfect or that everyone there was always unflawed. There were the occasional flashes of heat, with disagreements not always being as respectful as they could be. But by and large, I felt that people’s differences were respected.
This community has always been good at outrage. The first time I ever wrote about it was when an Australian comedian misfired a joke about diabetes. I know that this wasn’t the first time the community had used its collective and loud voice to shoot someone down for saying something stigmatising about diabetes, but it was the first time I saw it in such a quick and almost coordinated manner.
But over the years, it seems to happen more and more – perhaps because more and more people have started using online platforms. Or maybe it is because we are getting tired of being the punchline to every poor joke about the latest Starbucks sugary concoction.
Somehow, though, that outrage has turned itself inwards. While many people in the community (and I count myself in there) are spring-loaded and ready to go if someone without diabetes attacks ‘my people’ (i.e. people with diabetes), it seems that these days, a lot of the outrage is directed within the community.
I see that in particular groups: it’s no secret that the first thing that comes to my mind is the LCHF movement, and those within it who believe that the best way to deal anyone not subscribing to their way of eating is to attack, attack, attack. But it would be unfair to suggest that this group has militant outrage all to themselves.
There are also some who are doing work that is genuinely important and critical in supporting those less fortunate, but as they go about their efforts, have become attacking and openly negative about other groups aiming for similar outcomes, but who are choosing to do it in different ways.
But that’s not the only thing that people seem to be antsy about. I’ve had people have a go at me for my decision to use Loop. I’ve seen people choosing not to use CGM be told they’re being irresponsible. I’ve seen people who work with industry – device and pharma companies – be shot down and told THEY are part of the problem when it comes to access to technology and drugs because they are being bought by Big Pharma. I call bullshit on all of, and wish that everyone could remember that there is more than one way to skin diabetes advocacy. (Ugh – that sounds really unpleasant.)
This week while at ADA, I saw one of the people who I have always considered to be a – if not THE – shining light of inclusion (and certainly one of the first people to welcome me into the community) have her integrity publicly questioned. I am, of course, talking about Cherise Shockley. As it turned out, I was sitting next to Cherise as this unfolded, and her calm composure put to shame the rage that was building within me. My trigger finger was itching to fire, but instead, I took deep breaths and waited.
Without going into all the tedious details, Cherise was being accused of not being transparent during a DSMA chat she had moderated a few years ago, the transcript of which was later used in some academic research. Cherise had, of course, disclosed this at the beginning of the chat. At dinner the other night, she sat there until she found the tweet that showed the disclosure, but by the time she shared it online, more and more people had jumped on the outrage bandwagon, joining the choir of accusers. Had any one of these people taken the time to search through Twitter, they would have found the tweet Cherise later shared.
But that’s not how we play in the outrage playground: we just jump on the merry-go-round with everyone else and get faster and faster and faster until the situation is either forgotten (after all, there will be something else to be outraged about tomorrow), or, as in this case, the outrage is shown to be completely unwarranted.
I waited for apologies to follow. They didn’t come. At least, not immediately, and then I decided to stop following what was going on because all I cared about right then was that my friend – a woman I love, who has looked out for and checked in on me more times than I could count – was okay.
I love this community. I have stood up at international conferences and gushed about the value of community, I have written about it and been involved in research about it to help build the evidence base for it, because I truly believe in it. But there are times – increasingly – that I feel I need a time out. And I hate that. Because I need this community: if you are part of this community, I need you.
There is a person at the other end of that Twitter handle, or Facebook profile. It’s easy to forget that sometimes. I don’t know anyone in the community who is actively involved in activism and advocacy who isn’t trying to improve things for people with diabetes. It may not be the way you would do it, it may not be the focus you have, it may not be through partnerships you would encourage.
But that’s okay. Many different approaches are fine. But let’s respect the way we choose to do that. Is it too simplistic to suggest that really, we just need to go back to remembering to be kind? Maybe. Probably. But without any other solutions that I can think of, that’s all I have. Be kind. Always, be kind.
It never fails to surprise me – that instant connection you make with a diabetes peer.
Today, I had the pleasure of meeting Amira who has lived with type 1 for over 20 years. I flew to Sydney to oversee some filming for a work-related project, and Amira was being interviewed.
I listened to her tell her diabetes story (one I really hope she will write about for here!) and afterwards, we had a coffee and chatted. And there it was: that connection that goes far beyond our lazy beta cells, and far beyond both being diagnosed around Easter.
Amira is one of those dynamic, passionate, smart and funny people who helps to make the lives of people with diabetes better. I listened as she explained to me how she works with people with diabetes and instantly I knew she was one of those people I would want as part of my HCP team.
We spoke about every day things that I would speak with any other woman about. But diabetes adds layers and complexities and frustrations and fears. We nodded at each other as we shared those thoughts. Because they resonated straight away. And I was reminded again: the power of peers. That connection of diabetes that goes so deep that it must somehow be built into the DNA of those first encounters.
A new diabetes buddy makes for a good day. Today was a good day!
I’m in London for a couple of days of meetings before flying to Copenhagen….for another couple of days of more meetings. But I was smart this time, managing to set aside a whole day before the meetings start to do this:
These three women – these wonderful women – are part of the lifeline I have to help me manage diabetes. It may have been faulty pancreaes that brought us together, but what ties us together is support, friendship and love.
Thank you Annie, Georgie and Izzy for coming to meet me in my jet-lagged state in London. Thank you for building me up, and filling my jar. I couldn’t do this diabetes shit without you all.
We have a beautiful tree over the back laneway at our place. Usually at this time of the year, it is in full autumn brilliance. The red and gold leaves catch the gorgeous afternoon sunlight, and where the leaves have already littered to the ground, the branches are bare.
But this year, things have been a little different. Our tree brought out its autumn clothes a much later than usual, but sure enough a couple of weeks ago, we noticed that the leaves were beginning to turn. Every day, I’d look over the fence to see a deeper red, a more golden glow. Sure, we hadn’t needed to turn the heating on inside the house yet, and my really warm knits were still tucked away in the cupboard, but the tree was promising winter and cooler days.
Blossom buds. In May…
Over the weekend, as I sat in the kitchen, the back door open letting in a lovely breeze, I looked up at our tree. And there, on the bare branches, I could see something shooting. I went outside to have a closer look and realised that what I could see was the start of the blossom that comes out in the middle of springtime.
Our poor tree was looking mighty confused. I was confused. This isn’t how things go. The seasons are meant to be somewhat regulated and ordered. I like order. Order makes sense. This didn’t make sense at all to my brain, which likes things to be as they should be!
This wasn’t the only confusion I dealt with this week. Last Friday, I spoke about DIY diabetes technology at a health professional event and there was a lot of confusion.
I only had ten minutes (seriously not long enough to talk about something that is a completely novel concept to most of the audience), so I spoke fast, waved my hands around faster and tried to simplify the whole idea of looping into about 8 slides. ‘Renza will be around afterwards if you have questions,’ the emcee announced to the audience who all looked slightly bamboozled and winded after I finished.
There were questions. Lots of them about how Loop works, what it really is and who can use it.
But the one thing that seems to garner the most confusion is the cost. ‘You didn’t say how much has cost you,’ a few people said to me once the event was finished. Actually, I did. (Admittedly, very quickly, because: 10 minutes!) ‘Well, you need to source a pump that works, so that may be costly. And if the person using it is over 21, they will need to fund CGM themselves. Plus, the Riley Link is about $150 and there is a cost associated with becoming an Apple developer,’ I repeated what I’d said in my talk. (Obviously, I was talking Loop, but there was an OpenAPS user in the room too and I think he may have answered a couple of questions about the cost of his set up.) ‘No, no…what about the actual cost to use the app? How much does that cost?’
I have had this question asked probably more than any other. For some reason, people don’t seem to understand the concept of open source information sharing. No one is making money through this. The clever people who have developed DIY diabetes solutions place the details online for anyone to see and use. For free.
But this seems to be a confusing concept for a number of people.‘Wait. So no one is making in money from this? What about the people who worked it out in the first place? They are. Right?’
‘Nope,’I always reply, wondering how many ways I need to say it (along with wondering why I am so lousy at communicating things and also, if my hands waving around are distracting people).
Inevitably, the next comment is ‘Well, I’m not sure why someone doesn’t try to commercialise it. That would get it through regulations, wouldn’t it?’
At that point, it’s my turn to look confused. Why is it so difficult for people to understand that there are actually people in the world who genuinely want to do something good for others? Or that the WHOLE point of the #WeAreNotWaiting ‘movement’ is the fact that there is no waiting for regulations that are inevitable with commercialisation?
I guess that unless you are part of this community, it could be difficult to understand. But the generosity of those in the community is on show all the time. Whether that be the people doing the grunt work behind the scenes to make the dreams of DIY diabetes a reality, or the people who are then writing the step by step instructions so even fools such as me can follow those instructions, or the incredible community members who are ready to jump in any time to answer SOS calls for help when something doesn’t seem to be working, these people are doing it all for nothing more than the gratitude of those of us who are reaping the rewards of their cleverness and kindness.
The confusion – and disbelief – about this community is confusing to me, because every day I see how incredible it is. I only wish I was smart enough to give back even a fraction of what I have received from those brilliant folks who are there for the rest of us. And I really wish I was able to do a better job explaining what a marvellous bunch of people they are!
