You are currently browsing the category archive for the ‘Diabetes’ category.

C/W This post contains content about diabetes and suicide and intended self-injury. 

If you need help, this Wikipedia page has a list of mental health crisis lines around the world.  And for a list of contacts actively updated and maintained by the Wikimedia Foundation, go here. 

We talk a lot about taboo topics in diabetes.  For years, there have been concerted efforts to shine a light on many of the issues and topics that have not received enough attention but are very important to people with diabetes. Often it is people in the diabetes community who find ways to delicately begin conversations, and that is then followed by an interest from researchers and clinicians.

But there are still some topics that are often seen as just too difficult, just too fraught, just too scary. 

Suicide and intended self-injury (ISI) fall into that group. 

At EASD this year, I was invited to join a meeting for the RESCUE Collaborative Community, a project that is lifting the veil on one of the most difficult issues in diabetes mental health. The name of this project is a clue to what it is trying to achieve: RESCUE (REducing SuiCide rates amongst individUals with diabetes).

The mission of this project is:

To reduce rates of intended self-injury (ISI) and suicidal acts by people with diabetes through improved understanding of the risk factors and implementing strategies to address them.  In support of this mission, RESCUE works with stakeholders across the health spectrum including patients and care partners, academia, healthcare professionals, advocacy groups, industry, payers, federal and state agencies and regulatory bodies.

This is a big issue and a difficult one. There is a lot to think about, a lot of unknowns and a lot of questions to be asked. To work out how to help people with diabetes who are at risk, there needs to be a better informed workforce, with evidence to develop strategies that are going to help. And we also need to know how to approach the very basics when talking about suicide and ISI in relation to diabetes. 

When it comes to diabetes and mental health something comes up frequently: there is limited dialogue and understanding between diabetes HCPs and mental health HCPs. I remember hearing Georgie Peters speak at the IDF World Diabetes Congress in 2017 about living with diabulimia. She said that she would be told to ‘go home and take your insulin’ – a completely inadequate approach. In her talk, Georgie said that is the same as telling someone with anorexia to ‘go home and eat’. But when trying to navigate care from two highly specialised health areas, that sort of response is rife. 

And so, how to we make sure that when looking at diabetes and suicide and ISI, we are mindful of the specific diabetes issues that need to be considered? 

At the meeting last week, we spoke about trying to identify people with diabetes who may need attention. Contemplating how insulin may be used as a way to self-harm is one consideration, so people being admitted to hospital with frequent DKA, and people admitted for a serious hypo could be a starting point to investigate. Of course, not everyone who has DKA or a serious hypo is self-harming. Diabetes gonna diabetes and sometimes, things just happen. But it certainly does seem a good place to begin, with targeted approaches to ask questions in an appropriate way that might help identify people who need mental health support, in particular about ISI and suicide, with an aim of reducing risks. 

One of the other discussion points was asking about the role of peer support and the community when talking about suicide and diabetes? Is peer mentorship an idea? How can peers support each other? In the way that #TalkAboutComplications kickstarted meaningful community discussions about the taboo topic of diabetes-related complications and helped people with diabetes feel safe to first open up and speak about their own experiences of living with diabetes-related complications, could there be a way to signpost discussions about serious mental health conditions. And would this break down stigmas, help people realise they are not alone, and seek help, or at least ask where to seek help? Or, is this a burden too big for peer support?

There’s a lot to unpack here, and there really are no simple answers. But this work spearheaded by Professor Kath Barnard-Kelly with a team of dynamic health professionals, with input from diabetes advocates is lifting a veil to start to look for those answers. 

For more information about the RESCUE Collaborative Community, click on the image above.

MORE

#dedoc° voice, the brilliant Niki (@WhatNikiDidNext) live tweeted a symposium on suicide and ISI at EASD, and you can see her tweets here. Presenters at this session were Kath Barnard-Kelly, Marissa Town, Tadej Battelino and Simon O’Neil.

Disclosure

My travel and accommodation were covered by #dedoc°, where I am employed as Head of Advocacy. Thanks to EASD for the press pass.

I was invited to attend the RESCUE Collaborative Community meeting. I was not paid for my time to attend.

The last time I was in Stockholm was seven years ago for the 2015 EASD Conference. This year, as I walked to the conference centre from the train, everything about the venue flooded back. ‘Here we go again,’ I thought. Except this time was different.

I wrote this about #EASD2015:

‘There is much mention of the ‘patient perspective’ and on Monday there was an entire symposium dedicated to it. Unfortunately, there wasn’t an actual ‘patient’ on the panel, which surely is weird...But despite the limited presence of PWD in the official programme, there are a lot of satellite events and activities taking place.’

One of those satellite activities was the first ever #docday°. It was in a musty, overheated, overcrowded back room of a co-working cafe, and it brought together a rabble of diabetes advocates from around the world who had somehow made their way to EASD. I think most of us were there with Roche or Johnson and Johnson for one of their blogger events.

But #docday° was different. This one was completely about and by people with diabetes, showcasing community and peer support. People shared their advocacy efforts and what they were doing in their own networks to support people with diabetes, and shared ideas about how others could do the same. Despite being all about diabetes, we were not welcome as a group at the biggest diabetes conference in Europe.

Fast forward seven years to this week, and the same spirit from the first #docday° event was visible. But this time, it was on stage as part of the scientific program at the conference. The #dedoc° Symposium was on the first day of EASD and it set a tone of inclusion and collaboration, making a very clear point that people with diabetes have a rightful place here, at professional conferences.

Adding to the #dedoc° symposium were the #dedoc° voices – diabetes advocates from across the world – participating fully in the conference. This is the largest scholarship program in the world for diabetes advocates and they made sure they were seen and heard! Everywhere! You only needed to walk the corridors of the conference to see the voices collaborating, not only with each other, but with health professionals, researchers and industry. Social media coverage of the EASD is dominated by the constant stream of ‘reporting back’. And almost evert single health professional I spoke with at the conference knew about #dedoc° and supported our very clear mission of #NothingAboutUsWithoutUs. How amazing is that?!

#dedoc° is all about inclusion. That’s why we can, hand on heart, say that we welcome advocates from around the world to become a #dedoc° voice. But it’s more than that. Our events are open to everyone, including our symposia at diabetes conferences. At EASD, our session was the only one that was live streamed to everyone and anyone via our socials channels. No one needed a costly registration to get inside the Stockholsmassan or another way in. Everyone could see Andrea Limbourg speak about some incredible work from advocates in Indonesia, France and Ireland, and Jeff Hitchcock explain how Children with Diabetes managed to keep supporting families of kids with diabetes throughout COVID, and Tom Dean share details of the brilliant #DiabetesChat and how he has embraced the idea of providing a truly welcoming platform for diabetes friends from around the world to gather on Twitter Spaces for a weekly chat. And Bastian Hauck tell the story of that overheated room for the first #docday° and how what happened on that afternoon planted a seed for a global movement of people with diabetes. #dedoc° provides a platform to elevate others. It’s a privilege to be part of it. 

If you missed the #dedoc° symposium at EASD, here it is!

Disclosure

My travel and accommodation were covered by #dedoc°, where I am employed as Head of Advocacy. Thanks to EASD for the press pass.

Diabetes comes with a side serve of guilt in so many ways. Glucose levels above target? Guilty that I’m contributing to developing diabetes-related complications. Need to stop to treat a hypo? Guilty that I’m not participating fully in work, or focusing on family and friend. Forking out for diabetes paraphernalia? Guilty that the family budget is going to diabetes rather than fun stuff like (more) doughnuts from the local Italian pasticceria. Eating (more) doughnuts from the local Italian Pasticceria? Guilty that I’m not eating the way most diabetes dietitians recommend. Depositing the pile of diabetes debris on the bedside table? Guilty that I’m the reason the world is going to hell in a handbasket because of all the waste. 

The other day, I did a show and tell of diabetes tech. I brought along all the things I use, and things I don’t use. I’d been asked to show and explain just how the tech I use works and what it all looks like, but I wanted to show that there were other options as well. The people I was speaking with had a general idea of what diabetes was all about but didn’t have the detail. So, while they understood what an insulin pump was, they didn’t really understand what it means when someone says, ‘I need to change my canula’.

I did a pump line change to show the process and all the components. I didn’t need to change my sensor, so I brought along a spare and a dummy kit that is used for demo purposes. I also had some disposable and reusable pens and pen tips, blood glucose strips and a meter, alcohol wipes and batteries for the devices that need them. 

At the end of my demonstration and discussion, someone looked at all the debris. ‘That’s a lot of waste, isn’t it?’ I nodded. ‘It really is. And I think about that all the time. I hear people with diabetes lamenting just how much there is.’

‘It seems that what you use produces more waste than if you were using the reusable pens and a meter you showed us. Wouldn’t it be better for the environment if you did that?’

Yes, friend. Yes, it would. But it wouldn’t be good for me, my mental health or my diabetes. I was reminded of when our little girl was new and a man at the supermarket saw frazzled new-mum Renza covered in baby vomit and probably wearing my PJs, juggling baby and a box of Huggies and asked why I insisted on using disposable nappies rather than cloth. ‘Disposable nappies take 100 years to break down.’ In my new-mum fog, I looked at him, wondering what on earth I’d done to deserve this unsolicited approach, and said ‘Yes, I know. But if I had to deal with cloth nappies it would take me 100 seconds to break down.’ I blabbered on about other ways that we are more environmentally responsible, and then scurried away, adding environmental guilt to mother guilt and diabetes guilt

Diabetes waste is horrendous. There’s a lot of it. And we should think about it. I love the work that Weronika Burkot and Type1EU led a few years ago. You can still find details of the Reduce Diabetes Technology Waste Campaign online. The project aimed to highlight the amount of diabetes tech waste one person with diabetes produces in 3 days, 1 week, 2 week and 1 month. It was startling to see the piles of trash accumulate. 

But it can’t be solely the responsibility of the of us living with condition to address the issue. It’s brilliant that we talk about it – and we should do that. The Type1EU campaign got a lot of people thinking and talking about it for the first time. And we absolutely can and should do what we can to minimise our waste. I make sure that everything possible is recycled; I stretch out canula changes to four days when I feel it’s safe to do so; I restart sensors three or four times; I refill pump cartridges, sometimes to the point of them getting sticky; I use spent pump lines to tie the rose bushes in the garden; I’m using a fifteen year old pump – the last time I bought a new one was in 2013. I do all these things to try to reduce waste. I do what I can. I last changed my lancet one 2018. And, as an advocate, I have sat around tables with device manufacturers and begged that they consider how they can be more sustainable in their approach to diabetes tech, asking them what can be reused? What can be easily recycled? What can be removed from current packaging?

But the reality is, we don’t get a choice in how products are packaged. We don’t get to choose what the devices look like or the excess packages that surround them. We don’t get a say in the requirements of regulators who place stringent demands on manufacturers to make sure products meet safety obligations. 

Laying into people with diabetes as needing to be more responsible without looking further upstream at just who is responsible for the product we pick up from the pharmacy, or have delivered to our door, seems unfair. 

I gently pointed out to the person who was (most likely unintentionally) piling on the guilt with his comment about how I was contributing to the despair that is the condition of our environment, that his comment really was unjust and misplaced. To suggest that someone with a crappy medical condition that requires so much effort and attention, abandons the technology and treatments that go towards making it just a tiny bit less crappy is not really addressing the root problem. It can’t all be about individual responsibility. There needs to be scrutiny on everyone along the supply chain, but the least scrutiny and blame should lie at the feet of those of us with diabetes. 

Image is from this resource. I wrote and oversaw the design and photography of the first edition of this booklet years ago when working at Diabetes Victoria.

Sometime last year, I presented a webinar about how to be a good diabetes ally. The webinar was for a startup that would be working closely with people with diabetes. Earlier this week, someone who attended the webinar sent me this neat graphic which captured the main points of my presentation. I know that there are lots of other things that could be added, (and during my talk I covered more than what made this list), but I think that this is, perhaps, a good starting point. I’m especially pleased my point about avoiding hypo simulators made the cut!!

When I think of the diabetes allies I’ve worked with over the last 21 years in the diabetes world, I realise that their main strength is that they made point number one the foundation of their work. I find myself being drawn to the activities of those who centre people with diabetes in meaningful, not token, ways. They are the people who happily step into the shadows so that people with diabetes can be in the spotlight.

A real diabetes ally works with us. They stand with us, not speak for us, because when anyone claims to ‘be the voice of diabetes’ they are simply silencing people with diabetes. We have voices, we have words – our own words – we don’t need others to speak for us. Hand us the microphone.

Being an ally is easy. It really is.

List in black writing on a pink background that says:
HOW TO BE A DIABETES ALLY
a non-exhaustive guide for people working in the diabetes world 
1. Centre people with diabetes 
2. Hand people with diabetes the microphone; 
3. Understand that being adjacent to diabetes isn't the same as living with it
4. If diabetes is the topic, make sure there are people in the room influencing outcomes 
5. You're not being person-centric if people with diabetes are not front & centre 
6. Don't cosplay diabetes 
(AKA: no hypo simulators!)
7. Believe people with diabetes when we say you are not acting in our best interests 
8. Don't excuse diabetes stigma when you see or hear it, and always call it out 
9. Share the words & work of people with diabetes, acknowledging our contributions
10. Recgonise the emotional labour that goes into sharing our lived experience 
11. Don't make us feel like a burden when acknowledging people who support us 
12. If people with diabetes aren't in the room, ask why not
Diabetogenic.blog

More? I’ve written before about how healthcare professionals can be allies to people with diabetes when they see and hear stigmatising comments from their colleagues. A lot of what was in that post is relevant here too.

Let’s talk about perimenopause, periods, and diabetes. I’ll just wait a moment while a heap of people log off right now.

.

.

.

.

If you’re still here, hi! Shall we go on? 

For the first, I don’t know, maybe 12 years I had my period, I had absolutely no regularity to it at all. I could never understand people who told me they got their period like clockwork, because for me the clock worked intermittently. It was less ‘that time of the month’ and more ‘that time of whenever’. Sometimes it came every three months. Sometimes every four and a half. It was a little surprise that showed up without warting when it felt like it, stayed for a few days, was minimally annoying (never particularly heavy and hardly any cramps at all), and then disappeared again, only to appear when it next felt like it. I spoke with my GP, and they weren’t concerned, and told me to celebrate the fact that I didn’t need to deal with period palaver each and every month. 

This was all good and well until I was ready to have a baby.  A regular period suggests that ovulation is happening regularly and that is kind of important if you need an egg to be fertilised. That wasn’t happening for me. Some fun fertility treatment (‘fun’, in this instance, means ‘frustrating, lots of tears, desperation and wondering why my body wasn’t doing what it was meant to do’), and I managed to get pregnant and have a baby. 

And then, from six months or so after I had our daughter, my periods started happening regularly. Like clockwork. It was as though pregnancy had rebooted the reproductive bits of my body and for the last 18 years, I’ve been paying GST on period products every month. 

During this time, I learnt that periods and diabetes don’t play nice. I’ve struggle to find patterns in my cycle so as to run different temp basal rates on my pump to accommodate. Anytime I’ve thought I’d nailed it and settled into a neat routine, the next month everything would go haywire. I guess I settled into another routine: a routine of no routine, where I just had to wing it at whatever time in my cycle things started to look a little sketchy. Loop certainly helped. I could see there were days each month when it was working overtime for no apparent reason, but those days didn’t correspond with the days the previous month. Or subsequent month…

And so, that brings us to present day when it’s time for another life transition or whatever euphemism you want to use to avoid using words that distract attention from hormones, uteruses, blood, and vaginas. 

The pretty regular cycles have stopped. I’m not back to three or four (and a half) monthly, it’s more like six weeks or three weeks or some other weird timeframe. My period is on the most bizarre schedule now that is, quite frankly, bloody (yes, I know) annoying. And when it does deign to stop by, it either stays around longer (as in days…) or pops in for just a day or two. Or, even worse, seems to be done after a few days, only to return a day afterwards. Truly, it sucks!

I have made an appointment with my gynaecologist to check-in (it’s probably cervical screening time again) and for a check-up. I know that my experiences are in line with what heaps of other diabetes friends have experienced (yeah, we turn to each other because where else is there to go?), but I have a heap of questions to ask, and accept that there may not be answers. 

And I’ve spoken with my endocrinologist. I think that I only ever think of my endo as my ‘diabetes doctor’ but really, her expertise in hormones is pretty bloody useful right now. And the fact that she does some work in a menopause clinic is hugely useful! 

But here’s the thing. There are not pages and pages of information out there about diabetes and menstruation or diabetes and menopause. Or how diabetes affects your period during perimenopause. In fact, as with so many things that affect those of us dealing with periods (when they start, when they happen and when they stop), there is a dearth of information and very little research. I mean, it’s no surprise, because the patriarchy in health (as everywhere else) is all powerful. (Don’t believe me? Look at the number of resources about, and treatments for, diabetes and erectile dysfunction as compared with diabetes and menstruation or diabetes and menopause…)

Meanwhile, I just keeping trying to work it out, and speak with friends with diabetes to listen, learn and laugh as they share their stories. And watch as we start to open up more and write more and talk more in our own communities and advocate for more attention. Because that’s the story of diabetes community – we start the conversations that need to be had and that sets off a chain reaction where others get on board. So…get on board!

A photo of my hand holding Dr Jen Gunter's book 'The Menopause Manifesto'. Black writing and a megaphone on the pink cover. There is a blurred bookshelf behind.
Dr Jen Gunter’s Menopause Manifesto is really an incredibly useful resource. It’s not diabetes specific (although, there is general information about diabetes that is excellent). Click on the image for where to purchase. 

More? Here’s The Diabetes Menopause Project.

One of my favourite memes on social media is the response to people who tell the world they’re taking a break from or leaving social media groups or platforms: ‘This is not an airport. There is no need to announce departures.’ (Aussie airports at the moment are full of cancelled flights, so departure announcements seem to be few and far between, but I digress.)

And so, I didn’t announce that I was taking a little break from the online world. It wasn’t really planned. But it has coincided with a couple of weeks break from work and it’s been nice to step away a little and just be. Plus, it’s given me a lot of time to write and write and write and smash deadlines for some of the freelance work I never seem to have enough time to get done. (My submission emails inevitably start with ‘I’m so sorry for the delay in getting this to you…’) But here on Diabetogenic, I’m the editor, so delays are only holding me up and it would be weird to apologise to myself for repeatedly missing deadlines, especially when I don’t even have deadlines (mostly because I don’t set them because I know I’d never meet them) and there I go digressing again and is it any wonder I get nothing done?!

Having said that, I’ve received dozens of emails from people asking when to expect a new post, so to everyone who has messaged or wondered: ‘I’m so sorry for the delay in getting this to you…’.

But here I am back again, with a heap of great things I’ve seen recently and I want to share them here in a bit of an interweb jumble!

I’m writing

Yes, I know it’s weird to share my own writing on my own blog, but whatever! Plus,, there is nothing wrong with a bit of self-promotion. I’m back writing for diaTribe and absolutely delighted to have had these two pieces published recently.

This one is about how it’s important to tell stories of people with diabetes who choose to not run marathons or climb mountains in amongst stories of those who do. 

And this one is about a new type 1 diabetes screening program for Australian children. I write about the reservations I had about having my daughter screened when she was little, but how things might be very different with research like this. The response to this article has been lovely and a lot of parents with diabetes have reached out to say that they have had similar concerns and feelings to those I articulate in the post. 

Advocacy through art

I’m a huge fan of Jenna Cantamessa’s artwork, and this beautiful image and accompanying post is one of the reasons why! Click on the artwork to be taken to the TypeOneVibes Instagram account to read Jenna’s words.

Stripped Supply

I’m always happy to promote smart women doing smart things and so let me introduce you to Ashley from Stripped Safely. Here we are at the recent Australian Diabetes Congress.

When Ashley’s boyfriend was diagnosed with type 1 diabetes, she realised there was a gap in the market when it comes to mail ordering NDSS supplies. Remember the old days when we used to be able to easily place an order online and have our pump lines or BGL strips delivered straight to our front door? Well, Ashley is making that happen again. It’s a subscription service and is super easy to use. Details about how to use Stripped Supply here.

Gong

You bet I’m proud to share this! Diabetes Australia’s Heads Up on Diabetes campaign recently received an award from the Australian Patients Association. The campaign was recognised as the Best Patients’ Campaign and how wonderful that shining a spotlight on diabetes and mental in such a powerful way has been awarded. 

I’ll just say that while it is truly amazing to be acknowledged in this way, the real measure for me of the success of a campaign is how the diabetes community responds and it was clear from year one of this three-year campaign that people with diabetes from across the world absolutely loved it, as evidenced by the number of times the campaign videos were shared online. Oh, and there’s something quite incredible about sitting in a conference room and seeing our work played back to us by someone from outside the organisation. Yeah – that’s happened a number of times! 

The Human Trial

So much buzz in the diabetes world at the moment about the incredible documentary out of the US, The Human Trial. Until 9 September, you can stream the film for free by going to this link. You will be prompted to make a donation if you can. All funds raised go to diabetes research.

More about this documentary soon.

Advocacy through poetry 1

At the recent Australian Diabetes Congress, I had the honour and pleasure of chairing a session with an brilliant array of diabetes advocates from Australia and across the world. One of the speakers was Ash Byrne who began her presentation with an incredibly powerful poem and then went on to speak about the mental health burdens of diabetes. You can see Ash readying her poem, Invisible, at this Facebook link.

Advocacy through poetry 2

Aussie diabetes advocate and #dedoc° voice, Leon Tribe shared this poem on Twitter earlier this week which beautifully explains the power of language and communication between people with diabetes and our healthcare professionals. (You may need to click on the image to read the poem more easily.)

Stigma – diabetes and beyond

I have a new thing, and I didn’t want to talk about it. In part, because of stigma. Mostly, because of stigma.’ 

This is the start of a powerful post from Dana Lewis where she shares how the stigma that comes with diabetes has influenced how she feels about being diagnosed with another autoimmune disease. Read it here.

TEDx does diabetes advocacy

I’ve been a long-time fan of Grainne Flynn’s advocacy work and have shared her posts here before. Recently, she did a TED Talk about grassroots advocacy. It is all shades of brilliant and an absolute joy to watch. So… watch!

#dedoc° is busy! 

There is a lot going on in the world of #dedoc°! Here’s just a taste of upcoming events that everyone can get involved in. Plus, the #dedoc° voices program will be kicking off again later this month at EASD with a cohort of new voices and alumni on the ground in Stockholm as well as following along virtually. 

I’m so excited to be part of the #dedoc° symposium at EASD! Delivering a community led and focused symposium as part of the scientific program at a professional is a Big.Deal. We’re continuing to live and breathe #NothingAboutUsWithoutUs in the most impressive ways!

Disclosures

As always, I am thrilled to share things that I’ve found interesting, but disclosures are important. I’ve not been asked to share anything you see here, but figure if I find something interesting (or feel like doing same shameless self-promotion) you might too. I also figure that being transparent is important as is reminding you to consider my bias when sharing things.

  1. I am a paid contributor to diaTribe
  2. I am the Head of Communities & International Affairs at Diabetes Australia
  3. I am the Global Head of Advocacy at #dedoc°

A new diabetes bag arrived in the mail yesterday and isn’t it an absolute joy and delight?

I have so many of these bags from Monica at Casualty Girl, but when I saw this new colour way, I knew this rainbow design was was being added to the collection as soon as I saw it on Monica’s Instagram. As my guitar-collecting husband keeps telling me, the right number of guitars is ‘one more’. Guess the same can be said for these pouches!

You can get your own bag just like this (or one of the many other designs) from the Casualty Girl e-store. She also sells gorgeous clothing, phone cases and other things to inject (yeah, I know) a little bit of fun – and colour – into diabetes. Which is always a good thing.

(I purchased my own bag because supporting diabetes artists and creators is good for the soul.)

(And no, I didn’t buy it just to style this photo, but it was literally the first thing I did as I took it out of its packaging and I’m not mad about it.)

It’s very late in Australia and I’m hypo. And I’m angry, so there’s a trifecta that suggests the last thing I should be doing is publishing words. Especially when it’s a post about something I’ve written about a heap of times before.  

And yet, I’m going to write about it AGAIN because for some reason people down the back have not yet got the message that diabetes is not an amusement park ride for their entertainment, and the devices we use to, you know, keep us alive, are not trinkets to play with for kicks. 

Just stop it. 

This is, of course, off the back of yet another article by another person without diabetes who whacked on a CGM and then was horrified because their glucose trace trended upwards when they ate carbs. It obviously returned to an in-range number within a short time because their body works as it is meant to. I don’t know about you, fellow friends with diabetes, but I really am sick of people with working pancreases wearing diabetes devices to demonstrate to us that they don’t really need to be wearing diabetes devices. We get it; your beta cells know what to do. Stop showing off. 

In this article, the writer referred to wearing a Libre for two weeks as ‘an experiment’. Cheers for that. People with diabetes wear these devices because they keep us alive, give us data that is essential for accurately dosing the drugs that keep us alive, and alert us to glucose levels that can plummet or skyrocket, two things that we try to avoid. So we can stay alive for longer. It’s less of an experiment and more an act of survival.

Using this tech to prove to yourself that a high GI piece of fruit or a bottle of Coke makes your glucose levels go high is not an experiment. It is basic science that anyone with year 8 biology, or access to an iPhone and IFL Science could figure out. 

But okay, call it ‘biohacking’ and knock yourself out as you believe that this little investigation is contributing to scientific discourse.

Look, we can just think this sort of stuff is a bit of mindless, meaningless faff, and it would probably be good for my blood pressure if I could do that. But honestly, I think it is far more problematic. 

Last year, we had some influencer talking about how she uses CGM as a weight loss tool. What a mind-bending disaster that was as I tried to hold onto years of retraining my thoughts, and not fall down the rabbit hole of diet culture and lousy body image that has hounded me for pretty much my whole life.  

In this latest article we have gems like this one: However, my daily graph unfolds like a polygraph test: reaching as high as 7.9mmol/L after I’d had dinner.’

Sure, let’s present the food decisions people with diabetes make as lie detector tests. We already are made to feel guilty for looking sideways at a piece of cake, so cheers for adding to that. 

And while we’re here, let’s demonise food and food groups, because the thing we want now is for able bodied people to start judging people with diabetes for eating half a banana, or a chocolate croissant. (Two examples given in the article that resulted in glucose spikes. Because of course they did and many people with diabetes could explain why.)

I really don’t know why people without diabetes keep doing this. I don’t understand what they are trying to achieve. Every single time an article like this gets published, it annoys and infuriates people with diabetes. And nothing new is shared. There is literally nothing in this article that we don’t already know or hasn’t been written by the latest non-PWD who decided to whack a Libre on their bicep. There is no illuminating factoid that suggest wearing a diabetes device is a good idea of people without diabetes. There is nothing that makes me think that people with diabetes will be better off because of this article. 

And, by the way, if you think that non-PWD wearing diabetes devices will bring prices down, that’s not going to happen. Ketone strips have not magically come down in price because every keto bro worth their bone broth keeps a stash in the bathroom cupboard. In fact, the only effect that this increase in demand has caused for folks with diabetes is that it has become more difficult find ketone strips on the pharmacy shelf. 

I’ll say it again: There is absolutely no reason for anyone without diabetes to wear diabetes devices. If you’re doing it because you think it will give you an insight into what it’s like for PWD to wear them, it won’t. Want insights? Ask people with diabetes for their experiences, listen and learn. 

And if you are doing it for some biohacking experiment, just stop it. Please. It’s highly likely that in your excitement to share that the chocolate bar you ate in the afternoon spiked your glucose, the flow on effect will be stigma, blame and judgement hurled at people with diabetes. I get that probably wasn’t the intention, but because the writer lacks the nuances to communicate about diabetes, it is likely it will be the outcome. 

But, if you insist on wearing one, please at least do people with diabetes the courtesy of not writing about it and publishing it in a daily newspaper for clicks. Or perhaps if you do hit publish, and call that article ‘I wore a glucose tracker for two weeks – it’s bad news for my favourite breakfast’ you could acknowledge the good fortune you have of being able to draw a line through ‘wear a diabetes device’ after 14 days and know you don’t have to do that every day for the rest of your life which is what we have do to. 

This year’s eye screening appointment had aspects that were comfortingly familiar, and anxiously new. And I’ve come home with a very different feeling to the way I usual feel.

I’ve been going to the same private eye clinic for twenty years. I usually see the same orthoptist and always see the same ophthalmologist. This year, I saw a (new for me) orthoptist who opened with the clanger ‘Do you check your glucose levels?’ (I wasn’t aware it was a choice…) and followed up with ‘What is your glucose level usually?’. (This is not a question.) The rest of that appointment was comfortingly familiar – no changes in what I can read on the eye chart, excellent eye pressure and no vision changes. She put in drops and sent me to the next waiting room to wait to see my dreamy ophthalmologist.

And he is dreamy. I adore him. I mean, I hate seeing him and I tell him that each year. Then he laughs and thinks I’m neurotic, because I am neurotic, and that is how pretty much each and every year’s appointment starts. Comfortingly familiar. 

This year was no different. He always asks how I am, how my family is, how work is going, what’s going on with my diabetes and other friendly chatter to settle me in and get an idea of what is going on in my world. He asked if I’d had much of a chance to travel and how I was dealing with COVID times, or, as I now think of it, normal life. Comfortingly familiar.

As was the way he shone the Very.Bright.Light in my eyes, made reassuring ‘hmmm’ noises and told me that there was absolutely no hint of any diabetes-related eye stuff going on in my eyes and that was truly great after twenty-four years of diabetes. I always do appreciate the way that he is such a great cheerleader for diabetes longevity and acknowledges what a slog it can be. Comfortingly familiar. 

So,’ he said. ‘It’s all great news again from a diabetes perspective. However…’

Huh? ‘However…’? We don’t do ‘However…’. We do me standing up and promising to return the following year. Not ‘However…’ Yet, here we were. The anxiously new part. 

‘…However, I can see really early age-related macular degeneration in one eye. Really early. There’s nothing to worry about at all.’ He looked at me. ‘You don’t need to worry.’

And then I laughed, and he laughed because the idea of me not worrying is hilarious, and I had already jumped beyond worried and landed somewhere near stressed, anxious and ready to burst into tears. (I at least managed to wait until I got home for the last part.) 

I had questions and he patiently answered all of them. We spoke about family history. Apparently if a parent has AMD, their kids have a 50% chance of developing it. (Looking at this as a positive because it means that my sister might be right. Happy to take this one for the team, Toots!) He then spoke to me about things to do at this stage that help. The first is to not smoke. I’ve never been a smoker, so that’s an easy one. Then he asked, ‘Do you eat well?’ My heart sank. Another food-related thing? Turns out that eating leafy greens is protective which is fine because I love vegetables and it’s mandated in the hipster suburb where we live to eat three serves of kale a day. And finally, keeping up with regular appointments. Annual visits are still final.

‘So, Renza, It’s not diabetes. This is because of your age. After all, you’re 50 next year.’

‘Settle down!’ I said and suggested he dial things back a little. ‘I’m not even 49 yet.’ He looked at my chart again and needlessly pointed out that regardless of my current age, I am still turning 50 next year. (I’ll just point out that this was also comfortingly familiar because he frequently mentions that I am getting older.) 

I sighed. And got into the car with my dad and told him my news, opening with the comfortingly familiar and then moving onto the anxiously new. We went for a coffee, and I tried to focus on the positives. And then I got home and had a little cry. 

Because here’s the thing. I expect things to break. I’ve been told that things are going to break thanks to diabetes since the day I was diagnosed. And so, whenever something doesn’t break, it comes as a huge surprise. I’ve been holding my breath all week in anticipation of today’s appointment. I know that this is just a tiny hairline crack at this point, but it still has triggered a lot of stuff in my head right now. Sure, this may not be a catastrophe and sure, there is enough rational thinking to know that it’s early, I’m linked in with great healthcare professionals, and we know what to look for. But still. It’s another thing. Another worry. Another concern. Another part of my body not working completely properly, or at least indicating that it’s not going to work properly in the future. 

And so, I’m home now with a very different feeling to the way I usually feel after my annual eye screening. I’m already turning to the community to see who I can find there who might have some advice and understanding. I’m involved in a European ad board which relates to AMD and DME, so know that there is a whole network there who I can talk to. And I’m writing here to see if anyone out there has an experience to share. Because that’s what I do. Turn to community. I have the HCP stuff sorted. Now I’m looking for my people in the real world…

Waiting with diabetes (after dilating drops are in.)

More about eyes

How having a brilliantly kind ophthalmologist means I never miss an eye screening.

A chance encounter with an optometrist friend.

The comfort of knowing how eye screening appointments go.

The time I had a needle in my eye.

Always a worrier when it comes to eye screening.

All about my first cataract surgery. And after my second surgery.

What my dad has to do with my annual eye screening.

Psst…forgotten something?

If you’re in the northern hemisphere right now, you’re possibly all caught up in the sunshine, splashing around at the beach or spending time off work just taking time out. If you’re from the southern hemisphere, you’re either smart and have taken a holiday to Europe because EVERYONE.IS.IN.EUROPE.RIGHT.NOW, or under fifteen quilts in front of a roaring fire, counting down the days until it gets warmer. Sadly, I’m in the latter group.

I get it. Things slip by either way. 

But! You only have a few days left to make sure you don’t miss out on applying for a #dedoc° voices scholarship. Wherever you are, a scholarship means you have something to look forward to in a couple of months’ time and the absolute thrill of either virtually or in-person attending a global diabetes conference or two. That’s right – TWO! EASD (European diabetes conference) and ISPAD (paediatric diabetes conference) are the next international conferences on the diabetes conference calendar. Both will be hybrid, with the in-person locations being Stockholm and Abu Dhabi respectively. 

We’re well over two years into the #dedoc° voices program now, and the awesome thing about it is that it’s not just about the few days of the conference where you get to learn from incredible researchers and clinicians, while waving the lived experience flag and being surrounded by others with diabetes. I mean, that is all pretty great. But being a #dedoc° voice goes way beyond that!  Once you receive a scholarship you are part of a network of remarkable diabetes advocates from across the world, and this network is the most supportive, encouraging, brilliant group of people, always ready to help. Every single week, I see people reaching out for support and advice and the responses are swift and many. I’ve not seen a single example of anything other than support, and have watched advocates truly flourish as they have worked with others, developed mentoring relationships and been supported to do brilliant things. 

Unless you’re part of the program, you wouldn’t know this. And here’s the deal: anyone can become part of it. The #dedoc° voices program is open to people from across the world and everyone is in with an equal chance. You just need to spend some time completing an application. It is a competitive process, and places are limited. The people who get accepted are the ones who have taken some time with their application and really been able to demonstrate just how they are going to #PayItForward to their diabetes community if successful. No one is a shoe in; having a high follower count on socials means nothing if your application is sub-par. We take people who are new to the diabetes advocacy space, and are looking for a hand carving out their space, as well as seasoned advocates who are keen to work with others and become part of a global network, outside their own country.

So, get on it! Click on the image below, fill in the form and join us! You get to work on your advocacy while giving back to the community, all while wearing the #NothingAboutUsWithoutUs badge. How amazing is that?!

More on #diabetogenic about the #dedoc° voices program:

#dedoc° voices helping people with diabetes get into professional conferences

How #dedoc° voices supported people with diabetes in Ukraine

More on why to apply to join the #dedoc voices program

Disclosure

I have been an advisor for a number of years, and am now working with them as Head of Advocacy. 

Follow Diabetogenic on WordPress.com

Enter your email address to follow this blog and receive notifications of new posts by email.

Read about Renza

This website is certified by Health On the Net Foundation. Click to verify. This site complies with the HONcode standard for trustworthy health information:
verify here.

Archives

Twitter

%d bloggers like this: