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There are a lot of words that get thrown around the diabetes space to describe people involved in advocacy and support. These include (patient) leader, influencer, advocate, supporter… the list goes on. Some people prefer certain terms; others don’t. Some people don’t want to be labelled.
I had no idea the word ‘advocate’ was a loaded word in some places. I sprinkle it around like glitter – because I see it as a term that typically describes people doing really great things – and not just in diabetes.
It’s a word I’m comfortable with for myself.
It’s a word that I connected with others when I first started volunteering in diabetes – before I was working in it – because I could see that there were people with diabetes making a real difference to the lives of others with the condition.
It’s a word that I attach to people standing up, showing up and being counted. I asked on my FB page about the word, and someone said they like it because it not only refers to the person, but also the actions they are taking (thanks for that gem, Cathy).
But while it’s a word that I feel relaxed with, it doesn’t seem to be sit all that comfortably with other diabetes folks around the globe. (Which is, of course, fine. We can use whatever words we want to describe ourselves and what we do.)
I’m not sure if it is a cultural thing, or if it is just a preference. I’ve learnt that some languages don’t have a word that literally translates to advocate, but someone from Sweden told me she uses the English word, because it most adequately describes what she does. And in some places, people are very reluctant to use the word to describe themselves. After I asked about it, a number of people contacted me privately to say that they would like to use it for themselves, but they are worried about what others may think. Interestingly, they were all from the same part of the world.
Last month, I was an invited speaker at an event for people with diabetes in South Africa, and I was asked to speak about how the DOC has been a source of support for me in my years with diabetes. The event was titled Diabetes Influencers Summit. Now THAT’S a word I’m NOT comfortable with! I spent the first few minutes of my talk explaining why I’m prickly about the word and how I see what I do as advocacy, not influencing, and that I consider myself an advocate, not an influencer.
In my mind – and of course this is just my own assessment – influencers are building a brand for themselves, while advocates are more focussed on community. There is NOTHING wrong with building a brand – we all do it to a degree. But the advocates that I met and followed when I first started hanging out in the DOC were the ones that were truly all about community. They’re the ones I engage with now.
I don’t know any advocates who have made a squillion from their advocacy work. I don’t do sponsored posts here (or on any other of my socials). If I have been given product and then choose to write about it, I mention that in my wordy disclosure statements at the end of posts (and frequently throughout them as well), but I have never received money for what I have written, even though I am contacted almost daily with offers. I am a freelance writer, so I get paid to write elsewhere, but that’s my side hustle, writing is my job, and I should be paid for that.
No one has to call themselves an advocate – because of course that’s fine! – but I am saddened when those of us who do use the word are criticised, or considered to be ‘above our station’. (Ugh – just writing that makes me feel sick. Aussies baulk at class systems.)
Being an advocate doesn’t mean that I think I speak for others. I have never heard another diabetes advocate share their story with the message that they are representative of everyone. It also doesn’t mean that the issues that are important to me MUST be important to others – or that they’re the most important issues. I like to think that many of those issues that I’ve spent 20 years advocating for – access to healthcare, drugs and technology; PWD being recognised as experts in our care; respect from HCPs; the importance of using language that builds us up, rather than tears us down; working to diminish diabetes stigma; the philosophy of ‘Nothing About Us Without Us’; highlighting the need for more research about women’s health and diabetes – are universally acknowledged as issues that, if addressed and improved, can mean better outcomes for others with diabetes. But, these are my things and #YDA(dvocacy)MV.
Last week, I attended the Shifting Gears Summit which was coordinated and hosted by the Consumers Health Forum of Australia*, and the word ‘patient leader’ was used a lot. I realised that I was bristling with the term leader, not necessarily because I object to it, but more because I know how others would react if we started using it widely. I wonder why I feel that way. I happily and easily acknowledge many diabetes (and other health condition) advocates as leaders in what they do, knowing that they too may cringe with the label.
And yet, others working in the healthcare space are considered leaders – and usually, quite rightly so. We recognise HCPs, policy makers, hospital administrators, researchers and industry representatives as leaders in what they do, however the term seems to not be quite so comfortably applied to those of us with lived experience. But surely our experience and our role should be equal when all stakeholders are engaged. Otherwise, are we just there as window dressing? When an HCP offers their opinion on a diabetes issue, it does not necessarily mirror that of all HCPs, and yet no one questions their right to share that opinion. But despite this, they will be identified as leaders in their field. Why is that not also afforded to diabetes advocates?
It is definitely worth noting that I have rarely, if ever, seen, heard or had pushback from the HCPs I’ve worked with at the term advocate, or even leader. In fact, on a number of occasions I have been horribly embarrassed with the words – the very kind words – that have been used to introduce me. I’m always very touched that they see me in that light, but I am horrified at how other people with diabetes might react to their words. Why do some people with diabetes (myself included) want to distance ourselves from these descriptors?
Is it because in most cases people who are doing the sort of work we do are unpaid volunteers? Or is it because the status of the ‘patient’ is considered below that of others working in the healthcare space? Is it because there is no formal qualification needed to become an advocate?
Whatever it is, I don’t think we do ourselves any favours, or any favours in the endeavour to ensure the lived experience voice is considered as important – if not THE most important – in discussions about diabetes. In fact, that sort of rhetoric does nothing more than keep us in our place – that of a measly patient who can do no more than share their own tales of woe. When we say, or are told, ‘You’re only telling your story’, that devalues the contribution of advocates. It’s already hard enough to be heard, but then to be told that our story doesn’t mean much is offensive and harms us. I would never think to tell another PWD that, and it saddens me that others do.
We don’t have to label ourselves in any way we don’t feel comfortable, and we can describe ourselves and what we do in diabetes how we would like. I’ll keep throwing around the word advocate, and use it to describe myself. And continue to elevate the people with diabetes in the community who I see as being advocates, too.
*DISCLOSURE
I received a scholarship to attend the CHF Shifting Gears Summit after applying through an open submission process. Registration was paid for by CHF. I was not paid to attend.
Living a positive, sanguine life with diabetes is not impossible. And by and large, I don’t spend most of my time thinking about the scary stuff and asking myself ‘what if?’. But it’s not always easy, even for those of us with a mostly Pollyanna-ish disposition. Whether it’s hearing difficult stories or seeing a crappy diabetes health promotion campaign, I find myself frequently triggered and start to think about how that very first introduction to diabetes that so many of us receive, sets us up to believing that there is nothing more than doom and gloom ahead of us.
But with all the worry about what diabetes could bring tomorrow, how much happiness and light are we sacrificing today?
I worry about things and I know they may never happen; things that are not even hinted at today when I have my annual screening checks. But even as I breathe a deep sigh of relief after seeing my ophthalmologist, or receiving the results from my kidney check, I don’t stop worrying. The ‘All is good’ in this snapshot moment is reassuring, but somehow never enough.
Perhaps it’s because diabetes has a way of never just being about the here and now. The way it’s often spoken about means there is so much pressure to do right today in order to be right tomorrow.
The ‘What if?’ questions that I seem to have on repeat cast a constant cloud, sometimes more thunderous than at other times, over so many of my days.
Over the years, this has been one of the issues I’ve addressed with my psychologist. I have learnt to respond to ‘What if?’ questions with ‘What if it doesn’t happen?’, or to be practical rather than theoretical. This has been hugely helpful. As has saying ‘You are not at that bridge right now; you don’t need to know how to cross it.’
Just how much am I robbing myself in the here and now when I spend too much time thinking of hypotheticals of the future? How much happiness have I already lost to those hypotheticals? How much time and energy have I wasted being drawn into moments of doom, when the reality is that, in the moment – in my diabetes present – there are no clouds? No clouds at all…just blue skies.
Last night, I had the honour of speaking at the World Health Organisation Informal Consultation on Diabetes, which is currently taking place as a virtual event. It’s a three night/three day (depending on where you are in the world) event that has brought together people living with diabetes from all corners of the world.
This was a widely advertised event, and anyone could apply. The expression of interest call out was all over Twitter, Facebook and diabetes community groups. Unlike some other initiatives and programs, PWD didn’t need to be nominated by a diabetes organisation or HCP to be part of it. You just needed to fill out the application form (which didn’t take too long), and submit. Clearly a lot of people with diabetes saw it and thought it was something they wanted to be involved in! I’m not sure of the overall numbers, but there is certainly terrific representation from a number of communities.
On my Zoom screen I could see a combination of familiar faces, faces of people I know of but have never met or engaged with, and a whole lot of new faces. Hearing their stories, and reading the discussions that are filling up the chat box are enlightening. And reassuring. Because once again I was struck by how strong, vulnerable, admirable and strong-willed others treading the diabetes path can be. There are striking similarities and glaring differences. But common threads that run through the narratives we heard And mostly? There is support and gratitude to be there and to bear witness to others sharing their stories, ask questions and learn. Not a single snipy comment or passive aggressive remark – not because we all agree or are a homogenous group. But rather because we respect and value and admire the people who have the courage to stand up and be present.
I was invited to speak in a session about diabetes advocacy. The session’s title was ‘Strategic communication in global diabetes advocacy’, and it included Christel Marchand Arpigliano from Beyond Type 1 and Lauren Carters-White, a research fellow from the University of Edinburgh. Christel spoke about how when we tell our diabetes stories, we are translating the language PWD use – language that makes sense to us – into words that reach a broader audience.
Lauren used some terrific examples from around the world to show the impact data and evidence can have in advocacy efforts.
And I rounded out the session by talking about how when we bring the two together, we win the hearts and minds of the people we are trying to influence – decision makers, legislators, policy makers, educators, healthcare professionals and researchers. Because when we have the emotional pull of how diabetes impacts on daily life, combined with the evidence to show what that means, we can’t be ignored! I highlighted how working with healthcare professionals and researchers to further our messages means that our lived experience can’t be dismissed.
I also spoke about how the power of stories is magnified when there are many voices and many different narratives. I have rarely, if ever, heard someone share their diabetes with the pronouncement that they speak for all with diabetes, or that their story is THE story. But they are all experts in their own lived experience and that certainly should be celebrated. And its power should not be underestimated.
I think the thing I have felt most strongly in that Zoom room is the camaraderie and solidarity – again, not because we are all on the same page and all want the same things. But rather, everyone truly supporting each other and bringing others into the conversation has been an overarching quality of the meeting. No one dominates; no one is more important than anyone else; no one claims to be THE advocate. We are all advocates working together, and supporting each other for a bigger cause.
Of course, we want, and expect, to see action come from the three days of meetings and workshops, and I have confidence that will happen. But in the meantime, to have such large group of dynamic people come together whose only agenda is community and to build each other up, rather than tear each other down, reminds me that THIS is what diabetes advocates can do and what the community is mostly about. Those snippy voices who try to minimise people who are truly trying to improve outcomes for people with diabetes aren’t present. Because what a waste of time that would be!
I may have spoken about, and given tips about how to win others’ hearts and minds in my talk, but it’s my own heart and my own mind that have been won over by my peers in this event.
(You can follow along the discussion by using the hashtag: #WHOPLWDs)
Disclosures
None. I am not being paid to attend this event, and have not received payment, honoraria or in kind donations for my presentation, and am attending in my own time. I might need a nap later today though, because the 11pm-3.30am time for Aussies on the east coast is tough going!
Every year on International Women’s Day, I write a post about the incredible women in the diabetes world doing remarkable things for the community. I’m going to link to some of them at the end of today’s post because they highlight some truly brilliant women making a difference in the lives of so many, and their stories should be told, and contributions shared.
But today’s post isn’t about that. Today’s post is more about the way that women in diabetes often get treated. I should point out that a lot of what I’m writing about isn’t unique to diabetes. It’s seen time and time again in healthcare, and in health communities. But my space is the diabetes world, and that’s what I write about, so here goes.
So-called ‘women’s issues’ continue to be under-represented in research. Those issues and concerns are dismissed and ignored, and women are simply told to ‘deal with it’. Sexual function can be as relevant for women as it is for men with diabetes, and yet, do a search using the words ‘sexual dysfunction and diabetes’ and you’ll need to scroll a long way into the 32,000,000 results before women are mentioned.
I have sat on panels and been spoken over, and sat in audiences as I’ve watched women be spoken about and over. Last year, I spoke in a session at an international conference and then was the only PWD in the panel discussion at the end of the presentations and the chair (a male HCP) answered all questions directed at me.
Conference organising committees continue to be majority male, and award lectures seem to be more frequently given by men – and white men at that.
I sat in an online conference last year and was astonished to see that the woman whose contribution to one of the most significant advancements in diabetes tech in recent years was minimised. Thankfully a number of women in the audience corrected the misconception, and then had to deal with having mansplainers tell us all the ways in which we were wrong. (Spoiler: we were not wrong.)
I have heard so many mothers (and sometimes fathers too, but usually mothers) of kids with diabetes tell stories of being dismissed when they took their kid to the GP with symptoms of diabetes. They were told that they were imagining things, and there was no need to investigate further.
Remember the furore we saw when the IDF dared to focus women for WDD a few years ago? So many fragile egos were hurt because the challenges unique to women were centred in this ONE campaign.
I’ve been called a girl in meetings (still, at 47 years old), and seen the same happen to other women – women who are professional, qualified, experienced and absolute leaders in their fields.
And then there are the words used to speak to and about when, because of course, I’m going to talk about language.
I asked about this on my Facebook page the other day and these were some of the words and phrases that women who had called out shitty behaviour from men were called:
Angry. Aggressive. Hysterical. Dramatic. Attention-seeking. Pushy. Loud. Hormonal. Over-sensitive. Too much. Shrill. Strident. Opinionated
We’re told to calm down, moderate our words, and when we dare call out crap, we are gaslit and belittled, and told that we need to chill out.
How often do you see the same language used to describe men when they are calling out crap? It’s more likely they will be identified as brave, assertive, progressive …
In our own diabetes online community, it is fascinating to see how often this happens when women share experiences or lousy experiences, or simply have an opposing view. I have never believed that everyone needs to get along, but look at how comments, subtweets, even direct messages work and you will see the gendered language that is used to scorn and dismiss women. The label of the ‘angry woman’ is alive and well when a woman stands up. For extra credit, the ‘angry old woman’ tag adds some ageism to the sexism.
These words are used to minimise, dismiss and silence our voices. And it works. The number of women I know who have stepped away from support communities because of the way they have been spoken to or about is significant.
I usually like to use this day as a chance to celebrate women, because we deserve to be celebrated. Our contributions to the diabetes world are significant. The diabetes community has been fashioned by amazing women doing amazing things.
But it has also been shaped by women being silenced, reduced and curtailed. And that also needs to be recognised.
Previous International Women’s Day posts:
2020 – Strident women
2019 – Interweb jumble – the IWD edit
2018 – The women
2017 – Hear me roar
2016 – The F word
One evening this week I made pizza scima, a flatbread from Abruzzo.
Baking bread became a pandemic hobby for me. I love it, but the process takes time. Time to knead and time to rise. Time to punch down before the second rise. It’s a slow and calming practice that I have learned to appreciate. Baking bread became abeautiful way to mark the hours of a lockdown afternoon and I delighted in stopping in between work calls to take a peek under the cloth that was covering the dough, as it was snuggled – and getting ever more snuggly – in a bowl by the heater (in winter) or sunny window (in warmer weather). The oven would heat up the kitchen and as we sat down to dinner, a golden, crunchy loaf would emerge, ready to accompany whatever was being served up.
But days are returning to somewhat (new) normal here and there is less time. No lockdown means a different pace during the day, because I now inevitably rush out during lunch hours to run errands or stop off for a quick visit to the fruit and veg market before work gets started. Or I’m slowly venturing back into the office for a day here or there. All this means that those minutes that lent themselves to slow food activities now run into each other again: time is not as leisurely as it was, and suddenly it’s dinner time without time to make a loaf of bread.
But on this day, I wanted bread; fresh, homemade, just out of the oven, bread.
And so, I made pizza scima! It’s a five-minute process where all the ingredients: 00 flour, olive oil, salt, bicarb soda and white wine get tossed into a bowl, mixed together and then flattened on a tray. The dough is scored, and the oven does the rest. No kneading, no proofing, no resting, no rising.
Half an hour later, a stunning crispy on the outside, chewy on the inside flatbread emerged and honestly, it is the best bread hack there is to know. (Plus, the recipe calls for only a little wine in the dough meaning you have something to drink with dinner!) Viva gl’Abruzzesi!
There’s nothing like adding a sneaky little shortcut to your repertoire – whatever that may be. I think that often people with diabetes become super smart at finding these sorts of little techniques that become a snappy solution to a diabetes problem.
Yesterday, I learnt a new diabetes hack thanks to Kelly Kunik, DOC old-timer who writes at Diabetesaliciousness. Here is what she shared via a collaboration with Ascenisa*:
This reminded me of one of the topics for Diabetes Blog Week. For newer folks to the DOC, DBlogWeek was an initiative of Karen Graffeo who used to write at Bitter~Sweet Diabetes (seriously, check out all these people and their blogs). Each year, Karen would coordinate this monster effort, coming up with different writing prompts and then setting up a platform for them to all be collated in one space.
Back in 2014, one of the topics was diabetes hacks and ninety-five diabetes bloggers all wrote posts sharing tips and tricks they have discovered that goes towards making their diabetes a little easier. Here’s what I wrote. I’m so pleased to find that all the other contributions are still all together on this link, and I’ve just spent a delightful hour scrolling through and re-reading some of them, getting a refresher on some super ideas from super people!
Call them hacks, call it inspired improvisation, but MacGyvering the fuck out of diabetes is a talent worth cultivating, because you never know when a diabetes moment will call for it.
DISCLAIMER
I am on the Editorial Board for Ascensia Diabetes. I am paid for the pieces I write that appear on their blog. Kelly is also on the Ed Board. Sharing this for no other reason than it blew my mind!
There is so much about diabetes that can’t be simply explained or managed. And even if we understand the mechanism behind why something happens, we can’t necessarily fix it!
The intersection between diabetes and anxiety is certainly one of those things. When I am anxious, I go high. That’s the way it is. If I am extremely anxious and have a panic attack, the adrenalin rush sends me to insanely high glucose levels that I know I can’t treat by just bolusing insulin, because there will a swift, aggressive crash at some point and any excess insulin will make it worse. Much worse, because nausea often accompanies how I am feeling in the moment, so the thought of an ‘eat-the-kitchen’ hypo is not great at all.
I was feeling pretty anxious yesterday. It was a medium level hum that at times swelled to a loud banging noise, and I could sense that there was a topple on effect with my glucose levels. Except there wasn’t. At least not one that could be detected on my CGM graph, which was chugging along in range, albeit at the slightly higher end of that range.
But Loop was working hard to keep it that way. Micro changes to basal insulin showed a Loop graph of constantly changing dosing throughout the morning – at the same time I was feeling loud-banging-noise-anxious. At the moment there was a surge in anxiety levels – and I can pinpoint that moment – there was an accompanying surge in my insulin dose, but only for a little while. Because as my anxiety ebbed and flowed, so did my insulin dosing. All with me doing nothing.
Living with anxiety is one of the things that makes diabetes super difficult. I mean, there are so many things, but anxiety is a next level issue because the very idea of thinking about dealing with diabetes while dealing with an intense moment of anxiety is, quite simply, impossible. But even if I could, there is no way that I would be able to predict just how my glucose levels would respond, or the timing of that response, to act effectively.
As ever when writing and thinking about automated insulin delivery it comes with a very honest understanding, and acknowledgement of my privilege and knowing that I am extraordinarily fortunate to have at my disposal the technology that can help me in this way. I’ve written and spoken about this a number of times, and I am always acutely aware of the advantage of having a system that takes away so much of the brain power needed to manage such a complex health condition. I say this not as an afterthought – it is an ever-present thought.
But also ever-present is the gratitude that there is something with me that is providing such incredible insight into just how my diabetes behaves, operates and reacts to different situations. That is, of course, what CGM does. But it’s Loop gives an extra layer of insight – it shows me what my body would have been doing if my beta cells hadn’t gone on a permanent ‘tools down’ almost twenty-three years ago. And gives me an appreciation, and a reminder, of just how difficult diabetes is, and how incredibly challenging it is to attempt to perform the function of a highly sophisticated and evolved body organ!
Anxiety is unpleasant. What it does to diabetes is unpleasant. But having the tools to help manage its impacts on diabetes does help. It’s one less thing to worry about at a moment when it feels that I am being engulfed in a whole world of darkness and worry which is how I felt yesterday.
Now if someone could just magic up a DIY tool to stop the anxiety happening in the first place, that would be just dandy!
Here’s some stuff I’ve seen in the diabetes online world that I think is pretty cool. And I also think you might like it too if you’ve missed it.
If nothing else, this serves as a reminder that there are some super talented, smart, funny, productive, and downright awesome folks who are doing some super brilliant things and I am always happy to share that around. (I’m forever grateful when others in the DOC have shared my posts and other work. Building each other up is always a lovely thing to do!)
Vaccine in Australia (finally)
We may be a little behind the curve, but Australia’s COVID-19 vaccine rollout has finally started! Some links that might be useful to folks with diabetes:
- THIS statement from Diabetes Australia (disclaimer: I work there), the Australian Diabetes Society and the Australian Diabetes Educators Association
- THIS piece from Diabetes Mine
- THIS eligibility calculator from the Australian Government which will give you an idea of when you can expect to get your jab.
And THIS message from me (and science):
Diabetes poetry to make you laugh and cry
Kerri Sparling has just released her book of diabetes poetry. It’s called Rage Bolus and it is all shades of wonderful. It’s a gorgeous collection of words that will have you nodding, laughing (chortling) and crying, and is a must on the shelves of all folks with diabetes.
You can get your own copy here.
A new diabetes podcast to check out
Chelcie Rice has been around the DOC for a long time now and frequently provides thoughtful commentary on what’s going on in the diabetes world. And so, I’m thrilled to see that he has just launched a new podcast, ‘The Soul of Diabetes’.
The launch episode can be heard here, and then you should subscribe!
Also, Chelcie shared a video of his thoughts on the recent Dexcom Superbowl advertisement and it’s definitely worth a look.
Clare Diabetes Group meeting
More than a little honoured to have been invited to speak at the upcoming meeting of the Clare Diabetes Group in Ireland. You can register here.
Not an easy read…
Phyllisa Deroze remains one of the most incredible voices in the diabetes community. I have been lucky enough to hear her speak (she is such an engaging speaker!), and read everything she writes because I know it will get me thinking. On Valentine’s Day she wrote about her diagnosis story, which is not an easy read, but it is a very important one.
Phyllisa’s blog is called ‘Diagnosed Not Defeated’ and I don’t think that has ever been more accurate or relevant than in this post. Read it here.
CORONADO Study
Just today DiabTribe has published this great piece breaking down the findings from the latest findings of the CORONADO Study which looks at people with diabetes hospitalised with COVID-19 in a number of centres across France.
Read their article here (and there is a link to the full study there).
Totally not relative to anything diabetes wise, but why?
I’m just going to leave this here…
Can you see it??
Check out this advertisement from Bonds Australia for a bit of diabetes technology on show! A little representation can go a long way! (You’ll have to watch carefully…but check out the 36/37 second mark.)
Keep wearing a mask…
…because the science says they work. And share this with anyone without diabetes who is complaining about just how inconvenient it is to have to carry around a bit of fabric with them when they head out to the supermarket!
Spare a Rose final push
And finally, February is dwindling and that means that the 2021 Spare a Rose campaign is coming to its end. So far, an amazing USD$40,000 has come in from the community – that is, donations from people with diabetes and others affected by or associated with diabetes. There will also be corporate donations added to the final tally.
If you’ve not yet donated, or even if you have and would like to donate again, there is still time to make your contribution count towards the final tally. Every single donation makes a difference to the life of a child with diabetes.
I found myself in A&E in the early hours of Saturday morning, and for the first time in more than two decades, that visit was not because of diabetes. I make it sound as though I am a frequent guest at local emergency departments, but that is not the case. I can’t remember the last time I was there, but I do know it was thanks to the unholy trio of diabetes, gastro and ketones. That would be the only reason I’ve visited in the last two decades.
But before that – back in my pre-diabetes days – the reason was something different. I used to have seizures in my sleep. And at 2am on Saturday morning, I woke up realising I’d just had a seizure.
The first thing I did as I was coming to was check my CGM trace. A neat line that had barely wavered between 4.2mmol/L and 5.6mmol/L. This wasn’t diabetes related.
The last time I’d had a seizure in my sleep was 16 years ago when I was pregnant with my daughter. But that one was because I was low. I knew what to do, I knew why it had happened, I knew that it was just one of those things, I knew it was a pregnancy low that I had read about.
This one had nothing to do with diabetes and that left me in a very confused space. I wasn’t sure what to do. Did I need to go to the hospital? That’s what used to happen. But was that still the drill? We made a few calls and we decided that it would be best for me to go into A&E and take it from there.
There is no good time to need to go to A&E. There are just bad times and worse times. Turns out this was a worse time. I arrived at 2.30am, exactly two hours and 31 minutes after Melbourne went into lockdown after a COVID-19 outbreak. Aaron wasn’t allowed to come in with me because new restrictions were in place, so he left me at the door. The waiting room was filed with people who appeared a little worse for wear after their last hurrah before lockdown went askew.
The triage nurse saw me straight away and I explained why I was there. She looked up after asking me if I had any other conditions and I said ‘Yes, I have type 1 diabetes.’ I waited for her next question, jumping in after it didn’t come for a couple of beats. ‘I wasn’t hypo. My glucose levels were steady and between 4 and 6 the whole night. I wear a CGM. It wasn’t from hypoglycaemia.’ She typed that into her computer and then told me to take a seat and someone would be with me. She smiled at me, ‘It’s foul tonight. You’ll be here for a while.’
This is where things diverged from my last A&E visits. I was sent back to sit down and wait. And wait, and wait. There are few upsides to living with diabetes, but one of them is that when it’s the reason for a visit to an emergency department, you are given the VIP treatment and seen straight away. At least, that’s been my experience. Ketones are not to be messed with and as soon as I’ve ever mentioned the word, I have been whisked away behind the locked door and seen straight away.
But not this time. This time I was with the ketone-typical people, and sat quietly until, about two hours later, it was my turn. Blood was drawn, a CT scan was ordered and done, a consult with a neurology registrar happened. I was asked by everyone I saw if I was having a hypo when I had the seizure, but other than that, no one paid any attention to my diabetes. Which was just fine, because Loop was taking care of that for me and I didn’t really feel like having to do a DIYAPS tutorial to explain why I didn’t want anyone managing my diabetes for me while I was there.
After a couple of hours of outstanding care and attention, I was able to leave the hospital and go home with instructions of what to do next, an appointment for an MRI and EEG scheduled for the next couple of weeks, and a subsequent consult with a neurologist. And with a slightly fuzzy head … and a heavy sense of dread forming in my chest.
It’s a couple of days later, and I’m feeling less fuzzy. The only physical remnants I have are achy ribs from the actual seizing. Emotionally I’m more than a little wrecked, and in a state of uncertainty which is never good. I’m terrified of going low and checking my CGM trace every 23 seconds, stupidly jumping at anything that hints that I could be heading into hypo territory – even though Loop is more than capable of taking care of it.
I’m scared that this is not a one off, and instead the start of something else that is chronic and going to take up energy. I’m worried that my usual scatterbrain and forgetting words is actually something more sinister. These are the thoughts that have been going through my head from the moment I woke after the seizure.
On Saturday morning I walked out of the hospital to meet Aaron, the sun was rising, and Melbourne was starting to wake up. I climbed into the car feeling grateful to be going home. And sad. I thought about how over the last three years I’ve managed to get my diabetes to a place that requires little effort and with that managed to claw back so much mental effort that I’d needed to dedicate to my broken body. Was that all about to be redirected to something else? Was I going to have to learn a whole new language for a whole new part of the health system that I am already sick of having to use? Was this my broken body reminding me that I don’t get to feel comfortable in it? That while I may have thought I’d found the magic key to putting diabetes in its place, other things could and would pop up. Not diabetes. But there could always be something else…
Apparently, diabetes blogs are dead. At least, that’s the proclamation that seems to made every month or so. You should very much consider my bias when I say that I don’t agree with that sentiment at all. I mean, I have a shitload of content on this here site – including new and re-visited posts that for me have some relevance to my diabetes life in the moment.
Newer and shinier platforms are here now, so surely that means it’s time to retire WordPress and Blogger. Or is it? Newer and shinier platforms are great, so I’m not here to claim that that they’re a waste of time. Podcasts and vlogs are great tools for sharing diabetes information. YouTube and Reddit are great places to learn. And then there is Tik Tok, but I am too old to be allowed to even log into that platform. (Not true, and I have loved some of what’s been shared there. It can be a brilliant storytelling and info-sharing format!)
I’m here to say that every single platform for sharing a diabetes tale has its place. And blogs are still very relevant: the long-form post is not dead. Not yet anyway.
It is from blogs that I learnt, and continue to learn from others with diabetes. I revisit old posts I’ve read because they remain relevant today, and have many bookmarked and saved because the information shared is so spot on! I use them as research for pieces I’m writing and presentations I’m giving. I send links to old (and new) blog posts to others with diabetes when they ask questions that I know someone has answered so beautifully. And I send posts to HCPs to give them an insight into real life diabetes that they may otherwise have not understood – a glimpse into the things we are hesitant to share with them – and how our interactions with them can leave a lasting impression: both good and bad.
Blogs are also where we hear from those who are adjacent to actually living with diabetes. Reading posts from parents of kids with diabetes and partners of loved ones gives me a perspective that I simply don’t have firsthand.
Advocacy and awareness efforts have been described and fought through blog posts. I’ve used this blog to advocate increased funding for products, research and healthcare. It helps get the message out to people, with simple calls to action so they can get involved too. And the first time I ever heard about Spare a Rose was via this post (the links in the post are not current), and from there so many in the diabetes blogosphere – myself included – jumped on the bandwagon to support this important campaign. We knew that while donating was important, getting the word out was critical too. Since 2013, dozens and dozens of posts have been shared, raising awareness about how this ‘by the community, for the community’ grassroots initiative.
Blogs are where some of those deep and scary issues that we only whisper about or hide away are discussed. It was in blog posts that I first read about just how diabetes impacts on mental health. Experiences about diabetes-related eating disorders were shared without judgement and shame. It was through my writing about infertility and diabetes that I connected with so many other people going through the same thing.
Diabetes blog posts – old and new – are a patchwork quilt of lived experience gold, with the common thread that no one’s diabetes story is more valuable or important, but that everyone has a story to share that is worthwhile.
Some believe that blogs posts are just a way for people to ramble and navel gaze and seek attention. Well to them, I say please enjoy (or don’t) exhibit A – the 1100+ posts here that may be navel gazing to some, but paint a picture of my 22 years of diabetes. It’s not everyone’s experience; it’s not everyone’s cup of tea. And I’m okay with that! If you don’t like the blog format, move on. No one is forcing anyone to read a blog post. Or to get on any other format for that matter. Because, of course, your preferred diabetes info mode may vary (#YPDIMMV).
Someone said to me that reading new blog posts these days is boring because there is nothing new – it’s already been said. And you know what? That could well be true. Diabetes is boring and even though everyone’s diabetes is different, many of us write about similar situations. But actually, that’’s okay. Because for some people, it may be the first time they see or read a post about a particular topic – even if there are five million others! – or perhaps there is a different outlook in there.
I think that people write for different reasons. I write for a creative outlet and writing provides me with a way to explore different ideas about not only my own diabetes, but the diabetes landscape. But mostly, I write to connect with others. I don’t think anything I have to say is particularly erudite or mind blowing. I don’t have any revelations that will help someone else’s diabetes make sense. My own diabetes makes no sense to me, so the chance of it making sense to someone else is very unlikely.
I found most diabetes blogs because their writer shared them on Twitter or on Facebook. Or, others in the community shared them, which is one of the truly wonderful things about the DOC – the way some people elevate others in the community. There used to be an annual event called #DBlogWeek which was a brilliant opportunity to learn about others writing about diabetes. Diabetes Mine’s monthly blogosphere wrap up keeps me updated with some wonderful pieces. (And for German speakers, here you can find a curated collection of blog posts by Bastian from deDOC : I run posts through Google translate to understand them.)
And so, here are some of the brilliant pieces written by PWD I’ve read in recent times. I hope that you enjoy them too.
Corinna Cornejo writes at Type 2 Musings, and is also a contributor to the Ascensia Editorial Board (disclosure: I am too and am paid for my contributions). This great piece about power imbalance in the clinic room.
One of my favourite Aussie bloggers, Frank Sita, wrote this insightful piece about taking a pump break over the festive season:
Diabetes and pregnancy and baby blogs have always been a favourite of mine. I cannot tell you how many I read back when I was at that stage of my life! New mamma Ashley has shared this gorgeous post while (literally) awaiting the arrival of her baby girl.
I loved Dave Sowerby’s 2020 look back in this post.
Kerri Sparling may have retired her blog a couple of years ago, but I was so grateful for this new post on September last year while Melbourne was in the depths of lockdown. I’m sharing it here for others who are locked down at the moment. (And Kerri’s fourteen years of posts are still available at SixUntilMe.com)
Tim Street’s blogs are not for the faint hearted! They are often super technical, but non-techies (my hand is raised) will definitely get a heap out of them. His latest blog post from just a couple of days ago has me thinking about what I need to do to jiggle my basal rates a bit.
I haven’t watched the video that accompanies this blog post from Jen Grieves, but the words expressing how she is feeling in the midst of lockdown resonated so beautifully.
Holly Allen’s post from the end of 2020 about imposter syndrome hit a little too close to for comfort! It’s a recurring theme from some diabetes advocates (and my hand is raised for this one too!)
This from Molly at Hugging the Cactus had me aching as I read it. I miss my diabetes mates so hard and mourn all the opportunities we’ve missed to catch up.
And finally, I’ve not been able to stop thinking about this piece from Cherise Shockley that she wrote for diaTribe recently, and the idea of a carb glass ceiling. I realise that I have a very similar way of thinking when it comes to counting carbs and I love how she has explored the psychology behind why people may think this way.
Last year, a lot of the work I did centred around mental health and diabetes. It’s funny how things happen – we had always planned for it to be the focus for our National Diabetes Week campaign at Diabetes Australia (disclosure: I work there), and then COVID-19 happened, and it seemed all the more important to make sure that we were flagging just how much people with diabetes’ mental health was being impacted by the pandemic. Spoiler alert – the answer was, and still is, a lot.
Last year also happened to be the year that my own anxiety went from being something I’d dealt with mostly in the past to something that became very much in the present and a bigger issue for me than living with diabetes. I had a few panic attacks that terrified me and had the domino effect of adding to my anxiety as I’d wait for the next one to strike. But it wasn’t just those acute moments that made me feel anxious. It was a low-grade hum that became the soundtrack to every waking moment, sometimes exploding into a roar.
Of course, COVID-19 contributed to it all, because how could it not? But I also knew that these feelings of disquiet and unease had started well before the pandemic was firmly on my radar, before our first lockdown, and before Melbourne’s second lockdown – the longest and strictest is the world.
Trying to keep it all in check was tough but at the time I thought that the fact that there was just so much going on with work was a good thing. I simply couldn’t examine too closely what was going on with my mental health because work was just so, so intense, and anyway, of course I was feeling fretful and anxious because who wasn’t?! Hindsight, of course, suggests that it probably would have been better to stop for a moment and address that hum rather than try to explain it away or drown it out with more and more noise that actually only made it worse.
And so, I started putting words to what I was feeling because that was a first step to acknowledging that I needed to do something. And that I needed help. I started to check in on my anxiety levels each morning. Or when something significant, (or even not all that significant) happened, I’d stop and ask myself how anxious I felt. Starting to be able to name how I was feeling, and rate it, meant I could do something about it.
I had occasional telehealth appointments with a psychologist, to work through and to help develop strategies for coping. And to spend time working out where this anxiety had stemmed from. This is something that has always been important for me to do. When I have had periods of extreme anxiety before, there has been no coming out of it without being able to pinpoint where, when and how it started.
Sometimes that’s not all that easy to do, other times it’s glaringly obvious. When diabetes has been acknowledged as the cause of my increased anxiety, it’s never enough to just say ‘diabetes’ – it’s usually something more nuanced and specific. And so down the rabbit hole I go as I try to pinpoint exactly what I need to work through to start feel better.
But this time, it was clear. It wasn’t having diabetes; it was being in diabetes. I know that sounds ridiculous, but it makes sense to anyone who has ever worked in a diabetes-related job, or spent a lot of time in the diabetes community. It was the latter that was making me very, very anxious. I’d already been aware that I was experiencing diabetes advocacy burnout, but anxiety is different to burnout. It was more than just the sense of feeling overwhelmed and nervous every time I raised my head above the parapet (which is a lot because of my job and advocacy work). So, I had a head start on what needed attention even before speaking with the psychologist, but we did work at narrowing down just what the triggers were for me that increased my anxiety levels, how to avoid them and how to cope if I couldn’t.
I learnt to ‘catch the fall’. That’s why checking in became important to me. When I could start to verbalise how I was feeling, and isolate when anxiety levels were increasing, I could do something. Breathing exercises, grabbing a book – any book – from the bookshelf and focusing on a page of words, going for a walk around the old laneways of our old neighbourhood. These all acted as circuit breakers, allowing me to catch the fall before I started to feel really, really anxious. And managed to catch most panic attacks. In fact, the rare times I actually did have something resembling a panic attack was a trigger that hit me in the face without warning. It happens – those triggers pop up despite best efforts to avoid them.
I’ve just returned to work from almost five weeks of holidays. It had been twelve months since I’d taken any time off, and (again: hindsight) I should have been smarter and taken a break when my anxiety was really starting to affect my day-to-day existence. Because right now, of course I feel like I can breathe freely and as though my head is clear. The dread I’d wake up with – a pressing down feeling that came at me from every angle – slowly lifted. It wasn’t just work that I took the break from. I removed myself from social media completely. Actually, that’s a lie. I doom scrolled my way through Twitter for about two weeks following what was going on in the US, but I had every single diabetes term, hashtag and phrase muted.
I am still anxious. I still do my regular check ins to see just how anxious I am feeling about different situations (the one I did yesterday morning where I asked myself I how I was feeling about actually going into my office for the first time in almost a year resulted in tears, so I rated that as ‘quite anxious’, but I was easily about to understand where that was coming from! COVID-19 is still here, even in Melbourne.)
Unsurprisingly for me, the most anxious I felt (rating: really, really, really anxious right now and can I please crawl under a blanket on the sofa with a doggo at my feet) was when I checked in after spending an hour on Twitter after unmuting the word diabetes. I muted it again, because baby steps and still steps.
And so, this rambling, messy post exploring just how I’ve been feeling in my head has no answers or solutions or ideas. Except I know that 2020 was tough. And I know that I am not alone in having felt that way. I also know that in the scheme of things, despite anxiety, despite COVID-19 and despite…well…everything, I’m mostly okay. And I’m starting 2021 in a place of some clarity and freshness, which I hope means that if that anxiety hum starts to get louder again, I’ll be able to hear that happen. And catch the fall before it’s too late.
Diabetogenic 