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The fiction new releases section at Readings Books in Carlton is on the lefthand side, right as you walk into the store. It’s often the first place I stop on my frequent visits to my favourite local bookstore.
On Sunday night, as we wandered in after grabbing a coffee and bigne San Giuseppe at Brunetti’s across the road, I turned left as we walked in. I slowly wandering around the high table in the middle of the section before turning my attention to the shelves along the wall, book covers facing outwards, enticing browsers to read them.
That’s when I saw this:
I quickly picked it up, opened it to a random page about a third of the way in and realised quickly that one of the characters had diabetes. That was enough for me to buy the book.
I spent the Monday public holiday wrapped in quilts, slurping tea and whizzing through the book. I couldn’t read it fast enough!
After finishing, I searched online and found an interview with author, Sascha Rothchild, where the book was referred to as ‘diabetes noir’, a genre where tales such as Reversal of Fortune (which is based on a true story) and other death-by-insulin crime thrillers, along with a few episodes of Law and Order, neatly fit. Perhaps ‘insulin noir’ would be a better label.
It turns out that the author’s husband has type 1 diabetes, and that was the catalyst for her writing a book featuring a character with diabetes. I’m not going to give anything away, other than to say that it was diabetes that hooked me in, and it was diabetes that saw me turning pages at lightning speed, even though I could see just where the storyline was headed.
The details about diabetes are accurate, and only mildly sensationalist. Really, only one aspect is slightly overplayed, but I willingly overlooked that because it was necessary to the narrative. There were certainly some very clever diabetes observations that wouldn’t be out of place on any given day in the DOC, such as the protagonist commenting on how, when finding out about someone with diabetes, random strangers insist on sharing their own ‘worst case scenario’ stories, which inevitably involve someone losing a limb and being blind, and what the bedside table of a PWD might look like.
This isn’t really the story of a person with diabetes, and diabetes is not the main character. But it threads its way through it, popping up now and then in a way that, for this reader with diabetes, kept my attention throughout. I suspect for people not familiar with diabetes, or new to the diabetes world, it could be a little chilling and unsettling, but probably not for anyone familiar with the story of Sunny and Claus von Bülow.
Obviously, I’m desperately keen to hear what others with diabetes think of the book. I know I can’t be the only PWD drawn to narratives about diabetes to see just how we are represented in literature and on film.
So, please go read it. It’s available everywhere online and from bookstores. It’s also available to download and as an audio book. Ask your local library to get a copy in if they don’t already have it. And then get in touch so we can have an informal book group chat about it. I’m sure that we’ll have lots to say!
Stress impacts diabetes in different ways. And of course, everyone’s response is going to be different.
Before Loop (which now feels like almost a lifetime ago), the effect of stress on my glucose levels was tricky and unpredictable. At times, it would make me high. Other times, I’d be in Hypotown (the town no one wants to visit) for hours, without any respite. The clever Loop algorithm tidies most of that up for me these days.
But when it comes to diabetes, stress doesn’t only impact what I see on my CGM trace. It’s far more than that. Loop can only do so much… Insulin automation doesn’t mean diabetes automation. And it certainly doesn’t mean life automation.
Let me talk about how it’s affected things in the last couple of months …
To some, it might look as though I have become lazy about my diabetes management. I have run out of insulin in my pump more times than I care to admit, scrambling to find my spares bag to refill the canula. I ignore the alerts, silencing alarms and putting the task that needs to be done out of mind.
I’ve let the batteries on my pump and RileyLink wear almost right down. In fact, the batteries have got to the point where they are so crucially low Loop has stopped working. Even the Red Loop Of Doom on my Loop app hasn’t been enough to swing me into action.
I’ve almost run out of insulin. I never do this. Ever. I have a system that works for ordering new scripts to make sure that there is always at least two weeks’ supply, and then back up plans for my back up plans. And yet, there I was, staring down the last few drops of insulin in a penfill. I don’t use insulin pens. I use vials. But I’d run out of vials and was using a penfill that I have for absolute emergencies.
This had become an emergency.
Same goes for pump consumables. I was reduced to searching the depths of my diabetes cupboard and discarded handbags looking for an infusion set, desperately hoping that there was at least one, somewhere, that would do the trick before I had to knock on the door of my neighbour, asking her to tide me over.
This is one part of diabetes burnout for me – the way that I deal with my diabetes tasks. It’s not feelings of resentment that I must do those tasks; it’s not feeling distressed that I must do them. It’s not even feeling a paralysis about doing them. It’s simply not caring enough about them to take the time and energy to engage my brain and actually do it.
I know that when I am stressed, something’s gotta give, and for me, that’s always been doing diabetes.
I cannot tell you how much having automated insulin delivery sweeps up a lot of it. Forgotten boluses get sorted by Loop. Sure, it may take a little extra time and mean a bit of extra time above my upper range limit, but if I don’t engage, Loop will bring me back in range soon enough.
The low-grade nausea I’ve been living with for the last month means that eating is sometimes difficult, but I don’t even need to think about what that means for glucose levels, because Loop mostly does it for me.
And sleep! Sleep the gift that Loop keeps giving has been interrupted, not by diabetes, but by waking stressed. Or, as has happened twice in the last week, with a splitting headache, so painful that the throbbing has woken me from a deep sleep. Pre-Loop, sleep disturbances would wreak havoc with my glucose levels (often because most of the time those disturbances were because of my glucose levels). But now, as I see the upward spike start because I’ve been woken in the middle of the night and glucose is being dumped because apparently, I’m now up and awake, Loop kicks in with an ‘I don’t think so’, and that spike is shut down quickly.
But the nausea is debilitating physically. And being woken in the middle of the night is exhausting. And the stress is leaving me feel a little hopeless all around, to be honest. Teary, emotional, tired. And burnt out.
Many years ago, after a couple of periods of intense burnout, I did a smart thing and found a psychologist to help me. Together, we learnt to identify the triggers that precipitated burnout. This has truly become one of the most powerful tools in my diabetes emotional wellbeing arsenal, because learning when I am heading down the slippery slope of burnout, and realising it’s coming, has meant that I’ve been able to address it before I get so deep into that dark space, it becomes challenging to come back from.
So, right now, I know this is happening. I can feel the stress and the physical manifestation of it, and I can see how it is influencing my diabetes. Today, I spoke with my psychologist – in a way waving a white flag of surrender knowing that I need someone else to come in and help me through this, because I can’t do it myself.
The win is that I’ve seen it and I’ve recognised it. The win is I’m seeking help. The win is that I’ve caught it before I’m plunging to dark depths (I hope).
It’s not a win that I’m feeling this way. It’s not a win that this level of stress has started to affect so much, including my diabetes. It’s definitely not a win that I’ve reached the point where I’m staring down the path to diabetes burnout despite the reason being un-diabetes-related stress.
But that’s how it goes. Diabetes becomes part of it. Of course it does. Because diabetes is always part of it. Always part of everything. Always hand in hand with whatever else is going on. Stress and diabetes leading to burnout. One of the few equations in diabetes that I can count on.
(Click to be taken to Instagram for details.)
How are two separate Twitter incidents in the DOC related when one was started after someone without diabetes made some pretty horrid comments about diabetes and the other was a conversation diminishing the whole language matters movement to something far less significant and important than what it is truly about.
Let’s examine the two.
EXHIBIT A
Sometime over the weekend, someone I’d never heard of came out with some pretty stigmatising commentary about diabetes. This person doesn’t have diabetes. But hey – joking about diabetes is perfectly okay because, why not? Everyone else does it. Jump on the bandwagon!
She deleted her original tweet after several folks with diabetes pointed out just how and why she was wrong. And also, how stigmatising she was being.
In lands where all is good and happy, that would have been the end of it. We would have moved on, lived happily for a bit, until the next person decided to use diabetes as a punchline.
But no. She decided to double down and keep going. It was all bizarre and so out of touch with what the reality of diabetes is, but perhaps the most bizarre and startling of all was her declaration that there is no stigma associated with diabetes. Well, knock me down with a feather because I’m pretty sure that not only is diabetes stigma very real, but I’ve been working on different projects addressing this stigma for well over a decade now.
EXHIBIT B
At the same time this mess was happening, there was a discussion by others in the DOC about being called a person with diabetes versus being called (a) diabetic. I’m pretty sure it was a new conversation, but it may have been the same one that played out last month. And the month before that, and a dozen times last year. Honestly, to me, this conversation is the very definition of bashing my head against a brick wall. If you’ve played in the DOC Twitter playground you would have seen it. It goes something like this:
‘I want to be called diabetic.’
‘I don’t care what others say, I like person with diabetes.’
‘Why should I be told what to call myself?’
‘I am more than my diabetes which is why I like PWD.’
‘My diabetes does define me in some ways, which is why I like diabetic.’
(And a million variations on this. Rinse. Repeat.)
I have no idea why it keeps happening, because I’m pretty sure that at no time has anyone said that people with diabetes should align their language with guidance or position statements to do with language. I’m also pretty sure that at no point in those statements does it say that people with diabetes/diabetics (whatever floats your boat) must refer to themselves in a certain way. And it’s always been pretty clear that those adjacent to (but not living with) diabetes should be guided by what those with lived experience want.
AND it’s also been pointed out countless times that it’s not about single words. It’s about changing attitudes and behaviours and addressing the misconceptions about diabetes. And yet, for some, it keeps coming back to this binary discussion that fails to advance any thinking, or change anything at all.
Is there a great discussion to be had about person-first versus identity-first language? Absolutely. And looking at long-term discussions in the community there are some truly fascinating insights about how language has changed and how people have changed with it. But does it serve anyone to continue with the untrue rhetoric that people interested in language are forcing people with diabetes / diabetics (your choice!) to think one way? Nope. Not at all. It’s untrue, and completely disingenuous.
These two seemingly separate situations are connected. And that is completely apparent to people who are able to step back and step above the PWD / diabetic thing. People who know nothing about diabetes keep punching down because they think diabetes is fair game. And people with diabetes are the ones who are left to deal with these stigmatising and nasty attitudes.
I woke this morning to this tweet from Partha Kar.
I was grateful for the tag here because the frustration Partha has expressed mirrors the frustration I am feeling on the other side of the world.
I don’t know why this keeps coming up, I really don’t. I honestly do think that most people understand that we talk language in relation to stigma and to discrimination and to access. That was how it was addressed at the WHO diabetes focus groups earlier this year. That is how it was addressed at the #dedoc° symposium at ATTD. It is how the discussion flowed in last year’s Global Diabetes Language Matters Summit. Most understand that these issues are far more pressing.
If people want to keep banging a drum about the diabetes versus diabetic thing, that’s fine. But I reckon that many of us have moved well beyond that now as we seek to address ways to change the way people think and behave about diabetes so that we stop being the butt of jokes or collateral of people punching down on Twitter.
One day during one of our lockdowns (honestly, can’t remember which one), I was taking a government mandated walk to fulfil another government mandate – supporting local businesses when possible. Living where we do means there were always a variety of cafes to visit to fulfil this mandate.
I was with Aaron and possibly one of the pups and we were walking along our street, happy to be outside the confines of our house, masked to the max and looking forward to some inane conversation with a barista as our coffees were being prepared. Small pleasures made for big excitement during those long and seemingly never-ending lockdown days.
There was a woman walking towards us, so we exaggeratedly smiled with our eyes and murmured hello, because that’s what everyone did when only eyes were visible, and we were all desperate for human interactions.
‘Are you Renza?’ she asked me. Surprised, I said yes. (I was also impressed she knew who I was considering I was wearing a mask.)
Look, I am hopeless at the best of times when it comes to recognising people. In fact, I have the double hopelessness of forgetting names AND faces. But turns out, in this case, it wasn’t my absentmindedness to blame. We’d never met before; she recognised me from here. She had stumbled across Diabetogenic when she was newly diagnosed and doing the unthinkable and Googling diabetes.
She said some very lovely and kind things, and said she was really glad she’d found the blog because it helped her feel less alone. And then, after we had a little chat about diabetes and diabetes things, we each continued our hour out of the house. Once again, a lovely little demonstration of the value of shared lived experience – interactions which will delight me forever.
It never gets old.
There are countless examples of this sort of support in the diabetes community. Just a couple of weeks ago on Twitter, there was a gorgeous discussion as a back and forward chat happened organically. It started with a tweet about how it’s okay to feel that we don’t need to be diabetes superheroes, and ended up with a group of women tweeting about body image, and appreciating what our bodies were able to do, even as they bear (and we wear) the blemishes and scars of diabetes.
The conversation focused on truths of diabetes, with each person in the exchange sharing something about their own reality. These are the snapshots and glimpses of diabetes that are often missing for the glossy marketing materials, social media influencer posts and ‘you can reach the stars’ articles in diabetes magazines.
At one point, the only way I could respond to the familiar tales that were being tweeted from women across the world with such generosity, was ‘I am with my people.’
Despite decades of people with diabetes explaining the value of peer support, and ever-growing research showing how important it is, it’s still up to newly diagnosed people to stumble across others with diabetes thanks to a simple Google search. I don’t know that peer support can be ‘prescribed’, but surely there must be a better way to make sure that people – whatever stage of their diabetes life – at least know that there is a global community out there of people who will ease their isolation and whose stories will help give their own shape and understanding.
But I guess until then, we hope that Google, or whatever other search engine someone uses, will point to blog posts, vlogs, online communities, Twitter chats and other virtual gatherings. Because who knows just where those cyber connections and chance encounters will lead.
Diabetogenic 