It seems that in diabetes, we spend a lot of time looking back.
But there is nothing we can do about what has happened before this moment. There is nothing we can do about days, weeks, years, decades of doing less diabetes than we would like to. There is nothing we can change about using less advanced tech, or less sophisticated insulins. There is nothing we can do about years of not seeing diabetes healthcare professionals, or seeing health professionals who weren’t giving us the best care. There is nothing we can do about missed screening appointments. There is nothing we can do about forgotten boluses and the days of above range glucose levels.
There is nothing we can do about the time before a diagnosis of a diabetes-related complication, and equally, there is nothing we can do about the time before a diagnosis of type 2 diabetes.
That time is behind us, and no amount of regret, or wishing we’d done things differently, or even ambivalence about it, can change where we are right here, right now.
Perhaps that is one of the reasons that the blame and shame that is intrinsically tied up in proclamations of ‘If only you had <insert whatever in the past we didn’t do>’ are so damaging. Because instead of focusing on what can be done now, and in the future, we are dragged back to what we didn’t do earlier.
Those myriad inspirational quotes and memes we see on every social media feed and in posters on office walls about not being defined by the past don’t seem to have made their way to diabetes thinking. Instead, we are faced with heads shaking, fingers pointing, and knuckles being rapped for what are considered failings of our diabetes-past. And our own judgement as well of our own shortcomings.
Of course, we can learn from our history – we can reach back and remember things that we know work and things that don’t, and use those moving forward. But living with regrets will not change the outlook. And regrets will not help with our diabetes present, and how it might shape our diabetes-future.
Dealing with today’s diabetes is already a lot. A. Lot. Looking backwards and seeing a shopping list of missteps just adds extra burden. Really, all we have in our arsenal is what we can do right now, and perhaps the hope of what might be around the corner. That’s what we have. And that’s what we can do.
February 1 and Spare a Rose. The two go hand in hand in my mind. It’s when the diabetes community comes together to support a campaign that gives back in the most fabulous way. For anyone who is new here, or who isn’t sure why the DOC takes on a fetching red hue for the month of February, let me explain.
#SpareARose is a beautifully simple idea that asks people to forgo one rose in the bouquet to their love on Valentine’s Day, and instead, donate the saving from that one rose to a charity that supports people with diabetes in under-resourced countries. That one rose (about $5/£5/€5) covers the monthly cost of insulin.
Since 2013, the campaign has been known as Spare a Rose, Save a Child, and the charity that has received all donations has been Life for a Child. Over those nine years, the diabetes community – people with diabetes, people affected by diabetes, diabetes organisations and diabetes industry – has raised close to US$400,000, providing months and months of insulin to children in under-resourced countries. Plus, it’s raised the profile of the charity. Back when it started, very few people in the diabetes community knew about Life for a Child. Now, it’s supported financially by many, and recognised by even more.
For 2022, the campaign is doing something different and broadening its outlook to support people with diabetes diagnosed as adults, or who ‘age out’ of programs that have an upper age limit. Life for a Child supports people up to the age of 26 years. But of course, type 1 diabetes is for life, as is the need for insulin, diabetes supplies and healthcare.
With this in mind, #SpareARose has changed to Spare a Rose, Save a LIFE to recognise how the campaign will be helping adults with diabetes now, and the new charity partner – Insulin for Life.
Insulin for Life is a global charity and supports people with diabetes in many of the same countries supported by Spare a Rose. It’s so wonderful to know that these people will continue to receive insulin and other diabetes supplies, even once they hit 26 years of age, and beyond. You can read more about the important work done by Insulin for Life here.
Despite these changes, the campaign remains the same. One rose = one month of life. It’s a fabulously simple equation. What also remains the same is that it is a campaign BY the community, FOR the community. Every single person in the Diabetes Online Community can be a part of #SpareARose. We’ve seen tweetchats hosted by people across the world, we’ve seen fun challenges on twitter (remember #SpareAFrown?), we’ve seen videos and vlogs and lots and lots of blog posts. #SpareARose is on Twitter, Facebook and Instagram.
Of course, it’s not just financial contributions that make #SpareARose the success it is. It’s also about the community raising its voice to a veritable roar, and elevating the campaign and its charity partner. If you can donate, please do. If you can share, please do. Every time you share, someone might be click on the donate button, or the share button.
#SpareARose to Save a Life. Is there a more meaningful gift to make in the name of a loved one, a friend, a colleague, or in your own name? I really don’t think so.
I’m so honoured that I get to be involved in this campaign by sharing and promoting it as widely as I possibly can. I have spoken about #SpareARose across the globe and written dozens of pieces to raise awareness of this fabulous grassroots campaign, and anyone and everyone can do the same thing. Really, I have no disclosure. I volunteer my time, along with a number of other diabetes advocates from around the world who drive socials to talk up #SpareARose. We also work with diabetes organisations and industry to encourage donations. If you would like to get involved, please reach out. The more the merrier!
I talk about peer support being life-changing and life-saving. I say those words frequently when asked to speak and write about why peer support is so important to me, and what I hear about the value of peer support from others in the diabetes community.
But does it get more life changing than this?
Today, I’m writing about Jason and Irina, a couple of people I’m lucky to call friends.
They met during the weekly OzDOC tweetchats back in October 2016. Those weekly, rapid-fire hours of diabetes chatter fostered many great friendships. And this particular friendship, formed in between 8.30pm and 9.30pm on a Tuesday evening, led to Jason moving states to be with Irina.
They really did start with a tweet!
This is one of those magical stories where diabetes may be the thing that brought people together, but the connection is so, so much more than that. I’ve been lucky enough to catch up with Jason and Irina a few times in person over the (pre-COVID) years. I remember after the first time I met them, I walked away thinking what a magical couple they are – so right for each other.
It really wasn’t a surprise when I found out that they were engaged. Jason kept me updated with their wedding plans and I was so honoured that my family was invited to share their special day.
And then COVID happened.
There’s no need to talk about how the pandemic threw everything it could at this couple to try to disrupt their wedding. I lost count of the number of times their big day was rescheduled, Omicron being the most recent attempt to try to stop it.
But, as it turns out, Jason and Irina’s yearning to get married was way, way stronger than even the most virulent strain (so far) of COVID. A couple of weeks ago, Jason messaged to say that they were going ahead, with a smaller celebration.
And so, on Sunday of last week, the happy couple got married in what Jason described as a fairy tale.
So much love to the two of you. I can’t take any credit at all for this gorgeous union – all credit for that goes to these two lovebirds. But I can say that it started with a tweet in an OzDOC tweetchat. And that is pretty damn amazing!
Toby Ziegler : Of course I wrote a concession. You want to tempt the wrath of the whatever from high atop the thing?
Sam Seaborn : No.
Toby Ziegler : Then go outside, turn around three times and spit. What the hell’s the matter with you?
This is from a scene in an episode of the West Wing, one of my all-time favourite TV shows. It’s election night, and President Bartlet’s staff are waiting for the call to be made. His communication director, the ever-curmudgeonly Toby Ziegler, is admonishing his deputy, Sam Seaborn, for making any sort of prediction or assumption about the outcome of the election, even though the President is a shoo-in for his second term.
I get it – the idea of jinxing things is one of those superstitions that many of us hold close. I believe in science and evidence and research and nothing else, but even so, I throw salt over my shoulder, tap the table (or my head) and say ‘touch wood’ anytime I predict or claim something positive is going to happen.
This introduction is purely to lay the foundations for a lot of tapping on wooden doors and tables, throwing salt over my shoulder, wearing an evil eye charm, and making the ‘cornuto’ sign (Italians will know…) at my laptop at the end of each sentence, because I am sure that by the end of the week (if not sooner), this post will not have aged well at all.
But anyway, here goes…
COVID has made its way to Casa Diabetogenic. We’ve spent the last two years desperately doing all we could do avoid it, obsessively following health orders to the letter, being super cautious about being in crowds, amassing a huge collection of masks (and wearing them any time we left the house), and being a pin-up family for vaccinations, getting our jabs the minute we could, and boosted to boot.
Despite that, COVID announced itself on Sunday morning after a round of RATs. In the olden days, we would go out to brunch. In the present days, we do a saliva test to see if we have the plague.
Two of the three inhabitants of the house were positive. The one with diabetes (me!) was not. And I remain that way (salt over shoulder) forty-eight hours later, (touch wood).
The positive tests became hour zero and from then on, we were in full isolation mode. Aaron was confined to our bedroom, the kidlet to her own. If either of them need to leave their room for any reason, they send out an alert, and mask up, and wipe down any surface they’ve as much as looked at sideways, and empty half a can of Glen20 in their wake.
I prep and deliver all food and drinks to rooms and am at the beck and call of the infirm. We Facetime each other throughout the day to chat and check in on symptoms. I bossily remind them to keep up fluids and eat the segmented oranges I’ve delivered to them. I am annoying myself, so can’t even being to imagine how much I’m annoying them. We haven’t been in the same room as each other at all, and only see each other in the flesh when we are eating meals in the garden – sitting away from each other, necessitating speaking in very loud voices, giving our poor neighbours unwanted insight into our conversations.
It’s slightly absurd. Until those two lines appeared on those two tests on Sunday morning, we had been carrying on as normal and not giving a thought to needing to isolate from each other. I’d just gotten out of bed, a bed I’d been in for eight hours with my COVID positive husband lying right there. I’m pretty sure the night before I’d handed him my fork so he could have a taste of something I was eating. While we were super cautious about being around others, we didn’t for a second think that we needed to worry about our little unit. Home was meant to be a sanctuary. Now I’m trying to elude the little virus that could from inside our own home. It’s the shittiest game of dodgeball I’ve ever played.
My anxiety has remained mostly in check. I’ve gone into fight mode as I desperately try to disinfectant spray any hint of the virus. I only care that my family is okay and not feeling too poorly or taking a turn for the worse in any way. I’m worried that they won’t recover easily and quickly. I can’t stop thinking about long COVID.
And then there are the flashes of terror (like the middle of the night when I’m lying awake) and I wonder how my body WILL behave when (if?) it gets COVID and then, for a few moments in the cover of darkness, I find myself becoming a statistic, explained away by my underlying condition. They’re the words that ring in my ears thanks to every single presser from the NSW government. It’s so bleak and terrifying in those moments, and all I can do is remind myself that even though there are no guarantees, I am doing all I can.
I’m obsessively checking my CGM because if ever there was an early warning alarm system, it’s my glucose levels. It’s a reliable tell to let me know that an infection is brewing. Straight, steady, in-range numbers greet me in the mornings, insulin doses not needing to be superpowered by Loop to keep me that way.
All the while, I’m trying to understand how it is possible that I remain COVID free (cornuto sign). Because that makes no sense at all. Other than to believe I am some sort of extraordinary, turbocharged powerhouse of immunity (I mean, the vaccines and boosters probably have something to do with it too…)
Friends and family keep checking in and I boast about how, for once, my broken body is being legendary. ‘Are we…superhuman,’ asks my friend Georgie who has also managed to remain COVID-free despite being exposed left, right and centre, even though her immune system and mine match in their hopelessness. (Georgie, I just waved my evil eye charm around for you.)
I have developed this ridiculous superiority complex that is bound to be my downfall. Is it possible that my stupid, fucked up, overactive immune system that hasn’t shown any reason for me to believe it knows what it’s doing and keeps killing off things it shouldn’t has decided to be overactive in the right way, destroying COVID as it’s tried to move in? Do I have an invisible protective shield around me that has transformed me into some sort of crusader, fighting the evil coronavirus and winning? (There is a small salt mountain now behind me. Also, I’m an idiot.)
But then I remember that pride comes before a fall, and that this body of mine and this immune system of mine are not the sharpest tools in the shed at the best of times. And that thinking, let alone writing for anyone to see, that perhaps I might escape this round of COVID is only going to come back to bite me. And I think that I really should listen to Toby Zeigler, because truly, the last thing I want to do is to tempt the wrath of the whatever from high atop the thing. Probably best I don’t hit publish in that case…
It seems fitting that for my first post for the year, (happy 2022, friends!), I look at how diabetes #LanguageMatters is, (once again), colliding headfirst with COVID communications.
It’s the age of Omicron, and we are repeatedly, almost obsessively, reassured that this particular strain of concern of the virus we’re all completely sick of (and, for many, sick with) is mild. Mild. Mild. Mild.
And all I can think about is how damaging that word has been in diabetes communications, and, it seems, it’s quite problematic in COVID circles too.
Mild suggests that something is inconsequential; that it is minor; that it is easily resolved. Mild doesn’t consider the emotional toll and worry people might be feeling about being exposed to a virus that is spreading like wildfire.
When we talk about mild hypos in diabetes, we’re referring to those pesky hypos that are fixed with a few jellybeans and a couple of profanities. It’s a wham-bam-thank-you-ma’am low that is done and dusted in a few minutes. It’s a quickie.
Calling them mild has meant that these types of hypos are dismissed, and seen as something that, as well as being easily resolved, can be easily prevented. That’s not how hypos work, and framing them that way can lead to people with diabetes being blamed for not doing what they should have to prevent them, or that they are not something that needs attention.
Talking about the effects of Omicron is important. It’s good to know that, in general, early results are showing that Omicron is causing less severe illness, despite being highly transmissible. But a mild dose of a serious virus that still has so little known about it isn’t unimportant. It may be less dangerous than previous strains, but it can still be serious.
There is a flow on effect to defining Omicron as mild. It can mean that it’s not being taken seriously, and people are, perhaps, not being as cautious as they could be. Anti-vaxxers are using this definition as ammunition to further shape and spread their unhinged views, and ignore simple public health efforts, such as wearing a mask and maintaining physical distance. I know this group doesn’t need any help in pushing back against evidence-based measures that clearly help stop the spread of contagious diseases, but I’ve seen them bleat with delight ‘OmiCrOn iS mILd’ as part of their deranged rants, because that’s what they keep seeing and hearing.
Sadly, calling something mild has led to lousy planning (some would say sheer incompetence) by the government and government agencies. It’s this planning that is needed to help people properly prepare and protect themselves and their community.
I wonder if we were to ask people what their stress levels are like as they can’t access rapid antigen tests, or can’t afford to pay for them if, by some miracle where the planets have aligned, they find somewhere that has a hidden stock somewhere. And how they’re feeling as supermarket shelves are emptying, lines for PCR tests thread around (many) blocks, and their workplaces are needing to close because so many people are home from Omicron.
I’m guessing if they were asked, the answer wouldn’t be ‘mildly stressed’. Nor would they necessarily rate the situation in which we find ourselves as ‘mildly inconvenient’.
Mild doesn’t mean insignificant. Anyone who waits for daily numbers and has seen hospitalisation, ICU and death rates climbing knows that. Families of people who are seriously ill, or who have died know that. People like me who have spent the last two years doing everything I can to protect myself because I’m so terrified about getting COVID know that.
Communication around COVID has been a disaster from the beginning. And two years on, it hasn’t improved. Because here we are: less than two weeks into the new year, and about a month into a new variant and it’s as though we haven’t learnt a bloody thing about how and why words matter when speaking about health.
Christmas eve and Melbourne is turning it on. Gorgeous sunshine and divine mid-twenties temperatures. It seems perfect and would be if it weren’t for the C word’s new O variant that is looming heavily. I went to the Queen Vic Market this morning with my sister for our traditional oyster breakfast, and kept having to talk myself off the ledge of overwhelming anxiety at the thought of being amongst far more people than I’ve grown comfortable.
But amongst it all, Christmas is here. A huge jar of buttery shortbread stars sits on the kitchen counter, grabby hands reaching in anytime we walk by. Crostoli have been made, eaten and more made. The Christmas tree is decked and glittery, wrapped gifts strewn. There is freshly assembled tiramisu in the fridge, time doing its magic so that when it’s served up tomorrow, it will be a perfectly pillowy delight of coffee and mascarpone. There is lasagna ready for this evening’s small gathering here. Tomorrow will see another two family get togethers and Boxing Day will be the final of the family assemblies.
I feel oddly relaxed, which is lovely because often at this point of the game, I’m a stressed mess with a list the length of all the versus of the 12 Days of Christmas, wondering where I can still find wrapping paper, and hopeful that the local bookshop will still be open for those last minute presents I forgot.
And so, I’m signing off for a few weeks as I enjoy some time off, dappled sunshine to light my days, memories to be made with my beautiful family, a new kitten cuddle, pups to take to the park, friends to hang out with, including some I’ve not seen in two years who somehow miraculously booked tickets on flights that actually made it to Australia. There will be walks along the beach, afternoons languishing on the back deck with my Christmas books (presumptuous of me, but it’s a good bet), outdoor tables at cafes where I’ll sit for hours, alternating between hot and iced lattes, and lots of food. And as little time as possible dedicated to dealing with diabetes, because I am so lucky that Loop has been part of my life
Two years ago, I was wrapping up one of the busiest advocacy years I’d ever had. My passport had been stamped well over twenty times as I flew in and out of countries across the world, presenting, running workshops, sitting in ad board meetings, fighting the good fight. It was exhilarating, exhausting, exciting. And 2020 started off in the same way. Until the world changed. But the advocacy efforts haven’t stopped. In fact, this year was probably my busiest ever. 2022 is already shaping up to be just as involved as this year, more so probably. I’m already scared to look at some months on my calendar, as dates are filling fast. I wouldn’t want it any other way. But that’s next year.
Thanks to everyone who has stopped by this year. I’ve had the most gorgeous messages from people – words of support, asks for help, messages of solidarity. I’m always so grateful to people when they reach out. And I’m grateful to everyone who has taken the time to read my words. I’ve always said that hearing the stories of others helps me make sense of my own diabetes. I hope that perhaps my stories here have helped others in similar ways.
And so, there is only one thing left for me to do before I close my MacBook and let the battery run flat over the next couple of weeks. And that’s make a donation to Insulin for Life’s Secret Santa campaign. Thanks to everyone who has already donated to #IFLSecretSanta this year. Hundreds of dollars of donations followed my earlier post about it. If you’ve been meaning to make a donation, please do. It is truly one of the most important things you can do at this time of the year.
I’m dedicating my donation to diabetes friends who have been incredibly important to me over the last year. Peer support continues to be a cornerstone of my diabetes management – I can’t see that changing any time soon. And I can’t see a better way to say thank you to those who have helped me by supporting a charity that helps others with diabetes.
Last year, facing the first Christmas in the times of COVID meant that for many people, celebrations were very different to other years. Our huge Italian family gatherings were put on hold because the idea of sharing food around a table, sitting in close proximity, and basically bringing together thirty or so loud Aussie-Italians, all shouting, because we all believe we need to be heard over everyone else, was considered not especially COVID-safe. Instead, we met in parks for catch ups, physically distanced and masked up.
We also waived gift giving for the year. Instead, I made donations in the names of all my cousins’ kids, and for the Secret Santa gifts we (thankfully) didn’t have to buy. (I remain especially Grinch-like about this particular Christmas activity and you can read all about why here.)
Charities are continuing to do it tough. Not only are fewer people able to donate, but more and more people are relying on their services to get through.
Insulin for Life is once again running its Secret Santa campaign and what a great way to share some love this festive season! All donations make a difference, but to give you an idea, if you can spare $5, you’ll be providing a week worth of diabetes supplies – insulin, syringes, and glucose strips – to someone with diabetes in an under-resourced country.
There’s lots of information available on the Insulin for Life website, but this one statement certainly brings home just how dire the situation is for so many of our diabetes brothers and sisters around the globe: For every two people alive with type 1 diabetes, one person has died prematurely due to lack of basic care.
Let me just share that again:For every two people alive with type 1 diabetes, one person has died prematurely due to lack of basic care.
Even though I have been volunteering for years now for different diabetes-related charities that support people with diabetes in under-resourced countries, I haven’t become immune to feeling shock when I see the stark truth written out in such simple terms.
Every single person can make a difference and improve the situation for people with diabetes in these situations. Donating is not possible for everyone, but there are other ways to help. If you are on social media, you can amplify the cause and share this blog post, or the donation link with a few words explaining how impactful donations can be (use the hashtag #IFLSecretSanta). You can organise a fundraiser at work, school or with friends – doing the legwork to make things like that happen are important and make a huge difference too. You could do a Facebook or Instagram fundraiser. You can pass a hat around at Christmas drinks and ask people to throw in any loose change they have. No amount is too small. Every contribution matters.
I was just chatting with some of the amazing people from the Insulin for Life team, and I was thrilled to hear donations are already coming in from the community. Of course, I’m not surprised. The diabetes community has always been amazing at giving back, as evidenced by the amazing efforts seen over the years with Spare a Rose.
Insulin for Life’s Secret Santa campaign is just getting started. Last year was the first year, and the community stepped up. And in 2021, even after the absolutely horrendous year so many have had, there are people in the DOC showing up to support the campaign once again. That’s what this is all about. It’s what it’s always about.
The very first time I ever saw or heard anyone speaking of an insulin pump was about 14 months after I was diagnosed. It was National Diabetes Week in July 1999, and I attended an event organised by Reality Check, and supported by Diabetes Vic. Reality Check was a support group of young adults with type 1 diabetes. I don’t remember much from the program at the event, but I do remember a woman called Cheryl Steele. Cheryl was living with type 1 diabetes, and she was sharing her story of using an insulin pump and how it had completely revolutionised her type 1 diabetes management. Three moments from Cheryl’s talk stood out for me: the first was that she was able to be more flexible with what she was eating, the second was that a pump gave her more flexibility with being able to sleep in. And the third was that she loved her pump so much that she threatened to cut the arms off anyone who tried to take it away from her.
The first time I heard about CGM was years before we had the devices here in Australia. I read about them in online blogs and in support groups led by PWD in the US. I read stories about how this technology was changing the way the managed their diabetes in ways I could only imagine. I heard about Libre for the first time a number of years later when I met Claudio Pelizzeni at EASD, and he shared his experience of using the device as he travelled the world (without taking planes).
The first time I heard about DIYAPS was at an informal lunch thrown by Medtronic (I think) in 2015 (I think) in Boston (I think). I’m sketchy about the details, but I do remember with great clarity that at the other end of the table was a woman called Dana Lewis who I had seen online and read about, and knew to be amazing, but not yet met in person. She was talking about…well, to be honest, at the time I had no idea what she was talking about. All I could see and understand was that she was doing something that sounded like science fiction. She had a number of devices linked together and there was something totally magical happening.
The first time I heard about Loop (the DIYAPS I went on to use) was on a rainy New York night in January 2017 at a pub in the financial district. I was having a drink with a friend and just as he was taking the first mouthful of his stout he said, ‘Hang on, I need to bolus’, and he pulled his phone from his pocket and pressed some buttons. ‘What the what?’ I asked and he proceeded to explain Loop, how it worked, how he’d woken at between 80 and 100 (4 & 5) every single morning for the three months he’d been using it, and how he was sleeping better than he ever had.
When it comes to technology, it has always been up to me to first raise discussions about different devices or options. After seeing Cheryl talking about her pump, I asked my endocrinologist about getting one and his opening line (and closing line, as it turned out) was ‘They kill people; I’ll never allow one of my patients to use one’. That was the last time I saw him, and I went on the hunt to find an endocrinologist who would support my choice. I started on CGM because I enrolled myself in a trial. I was given my first Libre at a blogger event. I cobbled together my DIYAPS after sourcing what I needed. As brilliant as my HCP team is, they have not been especially proactive about suggesting, or even introducing the idea of, different diabetes technologies. It’s been learning through others with diabetes that has set me on that road.
When I talk about what peer support means to me, it goes beyond moral support and shared experience. It has been the driving force behind much of the way I choose to manage my diabetes. It has been the impetus for investigating if something new might be right for me. It has paved the way for me to start conversations with healthcare professionals to make access happen.
Peer support is absolutely essential for the mutual understanding and the tips and tricks for making day-to-day diabetes easier. And I’ve always said that hearing others’ stories help make sense of my own. But it is about much, much more. I’ve detailed the ‘first times’ when it comes to tech, but there have been so many more moments – moments that have helped make that tech work for me in ways I’d not thought, and certainly not had discussed with me by HCPs.
When I speak with newly diagnosed PWD I ask if they know others. I gently suggest that it may be a good thing to think about – not necessarily straight away, but certainly at some point. I can never repay the debt of gratitude I have for people who steered me in the direction to the tools that make my diabetes life that little bit easier, but I can do all I can to give back and try to do that every day.
Why does everyone want to cure diabetes? I mean, I think it would be GREAT if someone truly managed to cure it PROPERLY. But in lieu of that, everyone with internet access, a Canva account, and their finger on the pulse of the latest superfood (which, when said superfood is a legume it actually is a pulse), is out there busily curing diabetes with whatever snake oil concoction they can come up with. (At this point in time, I am going to take a MASSIVE diversion and say that Snake Oil is a thing and it is sold by a woman named Caroline Calloway who is a scammer and all that is wrong with the idea that we need ‘influencers’ in our life, and I would urge you to NOT pop her name into a Google search right now, lest you want to lose the next five hours of your life, and destroy a few brain cells while you are at it.)
Anyway, where was I? Yes, scam diabetes cures. Scamabetes cures.
Lucky for me, I get at least half a dozen diabetes cures delivered directly to my inbox each week. By lucky, I mean, I wish the fuckers would all leave me alone, but that’s not happening.
On days where I don’t get cures in my inbox, I get invitations to conferences that aren’t real, or asked to write for imaginary medical journals. The positive is that it makes me feel as though I am highly sought after, and people desperately want to hear from me. The negative is that they’re all a con, and that rather than thinking I’m somewhat brilliant, these scammers are hoping that I’m somewhat gullible.
The scamming is real in the cure diabetes world, and it never ends. Just at the point where you think it’s been rather quiet in the dodgy-cure entrepreneur corner of the globe, there is suddenly a concerted effort to get you to drop some coin on a turmeric and kale chai teatox for the low monthly price of $39.99 plus tax. What have you got to lose?
How the fuck are we meant to navigate our way through it? Twenty-three years in and being a sceptic with a healthy dose of mistrust in strangers approaching me online asking for money and promising me the world has served me well. I start from a position of disbelieving pretty much everything, which has been super useful in the last two years if you think about the rubbish that people (looking at you Clive Palmer) have claimed to be cure-alls. When future Lin-Manuel Miranda writes a musical about the COVID years, there will be a song dedicated to Ivermectin, drinking bleach, and that weird light thing that Pete Evans was trying to sell us for a cool $15K, and a story of vax-crossed lovers where an AZ and Pfizer jabbed couple try to overcome their differences, succeeding only when they are both boosted with Moderna.
Promises of diabetes cures prey on the vulnerable and the scared. It’s abusive and mean. If diabetes could easily be cured, WE ALL WOULD BE CURED, because I’m yet to meet anyone who wants to live with a lifelong chronic health condition, no matter how much they seem to have their shit together.
If it were as simple as eating a cucumber (looking at you, whichever Kardashian made that outrageous claim), I’d be living on cucumber granola for breakfast, cucumber sandwiches for lunch and having a liquid dinner of cucumber mojitos, and snacking on cucumber dipped into tzatziki. All. Day. Long. And I bet everyone else with diabetes would be too, because even if we all got sick and tired of cucumbers by day three, it would still be a shedload better than dealing with diabetes. Wouldn’t it? Yes. Yes, it would.
In times where it is so easy to spread misinformation as gospel, people with diabetes are taxed with even more. On top of doing the task of one of our organs, do impressive maths calculations throughout the day, act as a multidisciplinary medical team for ourselves, employ some damn impressive detective techniques, and be the most efficient executive assistance in the known universe (all before lunchtime), we also need to sort through the constant stream of information, picking out the trash, and staying on heightened alert. Even though we would probably really like some of those pseudo-science promises to work…even just a little bit.
As I was writing this today, my email pinged and there waiting for me was some ‘research’ (a term here used to mean ‘made up stuff’) suggesting that my diabetes could be cured by taking a daily supplement in a convenient, once-a-day tablet. But wait! There’s more. I could take advantage of the cyber-Monday special and get an extra 23% (random number) discount, if I locked in a twelve-month subscription contract. For the record, even with the discount, I’d be out of pocket for this scam product USD$647 per year. Each ‘film-coated’ tablet contains, cinnamomum cassia, garcinia gummi-gutta, chromium hexahydrate, zinc citrate, glutamine, gymnema sylvestre and citrus extract.
I hit the unsubscribe button, blocked the sender. And instead of ordering that veritable shit salad of ingredients, decided that a better way to ingest citrus extract would be to make some lemon bars, and cinnamon via an apple cake. The rest of the stuff sounds made up and absolutely not likely to make my beta cells start making insulin again.
And so, I donated some of the USD$647 I just saved my not getting swept up in this scam to Insulin for Life. Because you know what? The stuff IFL is giving to people with diabetes in under-resourced countries is something that really works and is really essential. And absolutely, completely and utterly not a scam.
You owe no one involvement in diabetes awareness activities.
You owe no one Twitter fury and outrage when diabetes is misrepresented.
You owe no one a decision to jump on a bandwagon just because everyone else is.
You owe no one your loud voice, your quiet voice, your whispered voice.
You own no one involvement in their diabetes advocacy efforts.
You owe no one blue eye shadow, blue nail polish or blue hairspray.
You owe no one reminders that diabetes doesn’t stop you.
You owe no one explanations for how you choose to advocate or the causes you choose to support.
You owe no one for the type of advocate you are.
You owe no one reasons for who you decide to work with; and who you decide not to work with.
You owe no one.
You owe no one hope.
You owe no one justifications for the technology you choose, or don’t choose.
You owe no one a podium.
You owe no one details for why you are at a conference, a dinner, a meeting, talking diabetes.
You owe no one the right to uses your diabetes as a teaching moment.
You owe no one marathons or mountain climbs or channel swims in defiance of diabetes.
You owe no one your time to just read their blog post, join their support group, sign their petition.
You owe no one a cheer squad.
You owe no one the words and language you choose to use to help make sense of your diabetes.
You owe no one an insight into your diabetes management, your HbA1c, your CGM curve.
You owe no one.
Except.
Maybe…
You owe yourself love and kindness and reminders that on days when diabetes feels too hard, too big, too sad, too … everything … that doing what you can is enough. You owe yourself room to breathe. You owe yourself space to step back and space to step up. You owe yourself pats on the back and high fives. You owe yourself flowers. You owe yourself the freedom to do diabetes your way and in your own time.
Diabetogenic 