I wrote a piece last week about how nervous I was about a talk I was giving at the Victorian ADEA Branch Conference about my personal Loop experience. The conference was held on Saturday, and I did my talk and escaped unscathed. It’s a good news story!

Thanks to everyone who encouraged and sent me words of support before my talk. I decided that I’d come clean before starting and admit to the audience that I was feeling a little nervous because I understood just how contentious many may consider what I was about to say.

Having legendary CDE Cheryl Steele share the stage with me – and her story with the audience – certainly helped!

Here are my and Cheryl’s talks.

A reminder – I am not recommending using Loop. This is my personal story and my personal experience. If you would like more information, please search ‘Loop’ on the blog. (There’s lots here because I keep banging on and won’t shut up about it!)

I am frequently the only non-health professional in meetings or on panels at conferences. I admit to it having taking me a number of years to completely feel that I belonged at the table. Imposter syndrome is real and despite my seeming (over) confidence, I often have to give myself a little pep talk reminding me that the PWD voice is the most important voice, that I have every right to be there, and that I should speak up.

At a recent meeting, I was speaking with a group of healthcare professionals about diabetes complications screening. There was a break in the formal part of the day, and as we stood around drinking our coffees, the first comment came that made me prickle. ‘Screening is available. People just need to stay in top of it.’

I took a deep breath. ‘Um, it’s not really as simple as that.’ I said. ‘You have made an assumption there that people know what the screenings are and how frequently they are recommended. That’s not really always the case. And there are a lot of factors as to why someone may not be up-to-date with their screenings.’

‘Such as?’ asked the person who made the original comment.

‘Really?’ I asked. ‘You need to ask that? There are so many.’ The group was looking at me, waiting for a response that, personally, I thought was a little redundant.

I took a deep breath. ‘Well, to start with, not everyone is in regular care and if they are not seeing someone regularly for their diabetes, they may not be up to date with screening. Also, a lot of people are terrified of diabetes-related complications and that may make them nervous about having the check done. If they don’t feel that they can approach the topic of how anxious they are feeling perhaps they decide that it is easier to simply not know. ‘

I was getting a lot of blank looks, so I did what I do in situations like that. I kept talking.

‘Also, there is a lot more to complications than… just complications… By that I mean that the way complications are communicated is fraught. Often there is a lot of judgement and stigma. People feel ashamed. They think it is their fault if they develop them because that’s the way it’s been framed to them. And of course we all know that’s not true.

The look I got from the others suggested that no, we don’t all know that to be true. So I kept going.

‘Plus…life gets in the way sometimes. Everyone falls behind with the things we perhaps know that we are meant to do regularly. Which reminds me,’ I continued in a moment of realisation, oversharing and far too much information for a group of people I don’t know. ‘I need a pap smear.’

I was about to say something else and then stopped myself, deciding I’d said enough.

‘But surely people need to know. So they can be treated. You all know that early diagnosis means better treatment, right? So why don’t you just stay on top of things. Isn’t that your responsibility to do that. If you find out you have retinopathy or something and you’ve missed five years of eye tests, you can really only blame yourself. A lot of people just don’t care or want to know. You do know that diabetes complications are serious, don’t you?’

I looked at the person who had just said that. Was he actually diabetesplaining diabetes complications to me? Was he diabetesplaining how people with diabetes feel about complications to me? Did he just diabetesplain what people with diabetes know?

I wasn’t sure where to begin. But tried to anyway.

‘Well, no. Not everyone necessarily knows that early diagnosis means better treatment and not everyone knows how frequently screening checks should happen. There is always so much to keep on top of when it comes to living with diabetes that sometimes things slip through to the keeper.

‘And sure, it’s may be my responsibility to keep on top of things, but I have a lot of other responsibilities. I mean, it’s your responsibility to do 30 minutes of exercise every day and eat five serves of veggies. Do you manage that every single day?

‘And blame is a really, really unhelpful word here. It suggests that someone wants to develop retinopathy and so they have wilfully ignored their eye checks. No one wants to develop diabetes complications. I can promise you that.’

‘And to your last point: Yes. I know diabetes complications are serious. How much do I know this? It keeps me awake at night. I actually feel terror about developing them because I am scared that I won’t know how to cope. Before an eye screening and while waiting for my ophthalmologist to tell me what he sees at the back of my eyes, I hold my breath until I hear him tell me that there is no retinopathy. When I have my kidney function checked, I am on tenterhooks until I hear from my endocrinologist with the results…

‘Really – there is nothing you can say that will increase my awareness of how serious diabetes complications are. I know it. I live it. I breathe it. Every single day. That’s what people with diabetes do.’

Thankfully, we were being called back into our meeting and the conversation came to a slightly awkward conclusion.

Maybe, because of all the work I’ve been doing around diabetes complications recently, I’m on high alert, but it seems that I have had more than my usual share of similar conversations recently. And each time I am left with a sour taste in my mouth. I also feel disappointed, sad, tired and a little defeated that there are still so many misconceptions bandied about, continuing and feeding the stigma associated with diabetes complications.

But every single one of these encounters strengthens my resolve to reframe the way we talk about diabetes complications. We need to bring discussions into the open. We need people who have been diagnosed to be given an opportunity to talk about their experiences, so that their stories are heard loud and clear. We need to call out anyone who perpetuates stigma, judgement and blame around complications.

Diabetes complications are a reality for people living with diabetes – either because we are living with them or we are constantly thinking about them. We don’t need HCPs to tell us how to feel about them. We need HCPs to provide information and support us.

 

*this is the most redundant blog post title ever.

Yesterday, I was invited to speak with the Roche Diabetes Care team at their annual meeting so they could hear from a real-life-walking-talking-person-with-diabetes.

The idea of the talk was about how I try to make diabetes – the most complex health condition in the world – simple. Which, as I pointed out at the very beginning, is laughable, because diabetes and simple are words that should never be in the same sentence.

I started by saying that the idea that diabetes is a simple mathematics equation with the factors energy in, energy out, insulin and current glucose level is wishful thinking. There is a lot more than those four factors affecting glucose levels. And thanks to diaTribe, I was able to show them a list of 42 of them!

And I explained that the 121 diabetes decisions I make every day are all my own responsibility, because, you know, we only get about 4 hours of time with our HCP team.

I’m sure there was nothing new in there for them. At least, I hoped that was the case.

‘To manage diabetes, I have had to wear many hats,’ I said, and then listed all the things I have had to become just to try to deal with diabetes. These included:

  • A one-person multidisciplinary healthcare team – because my team are not – and should not – be on call to be 24/7.
  • A mathematician – because I do use algebra every.single.day. And do fancy pants calculations.
  • A detective – because somehow I have to sleuth my way through health advice from Khloe Kardashian and Dr Oz.
  • A scheduler – because of the regular ‘check-up’ appointments, complications screenings, blood work and anything else that needs doing.
  • Fluent in a new language – the language of diabetese.
  • A technology geek – because of all the devices I have stuck to my body and reading to my phone need to be driven by someone. And that someone is me.
  • An advocate – for myself firstly, and then became one for others too.
  • An engineer – because I did, after all, build my own artificial pancreas (lots of disclaimers after that saying that really all I had to do was follow step-by-step instructions much the same as one does when putting together Ikea furniture with an Allen key).
  • Thick skinned – to deal with everyone who wants to tell me what I should be doing better to better manage my diabetes.
  • A data analyst – because there is fucking data everywhere.
  • A negotiator – mostly negotiating with myself to try to do better.
  • A word nerd – because #LanguageMatters (Also, I am incapable of giving a talk and not talking about language it seems…)
  • A comic – because finding the funny side of diabetes is sometimes necessary o get through the day.
  • A social media whore – because I have found my tribe, love them hard and because so many of them live on the other side of the world, we hang out in the cafes of Facebook and Twitter lands.

The thing about diabetes is that apart from being the very opposite of simple, the thing that all of us living with the condition know is that even those things that are meant to help streamline our management, often add to the complexity.

It was at this point, I spoke about technology. ‘I love technology. I love diabetes technology. I want to be the first person using things. I will jump on a diabetes tech bandwagon as quickly as I can,’ I said. ‘But the thing about technology, is that while it may make some things easier, it can also create more work.’

I spoke about the work insulin pumps can be – the need for very regular glucose checks, the needing to make sure there is enough insulin to last the day, changing sites and checking them for infection, feeling frustrated when there is a technology glitch. And of course CGM – as wonderful as it is – can be frustrating, beeping, alarming and causing nothing but angst.

The tech is great when it works, when it is doing what we need it to do and when we feel that we are able to operate it as best we can. That’s certainly not always the case. And it’s important for people to understand – especially the people who make the technology and are speaking about it – to know that.

That was the take home message from my talk. Well, that and a reminder that even with the myriad hats that I wear to try to manage my diabetes, the hat that is by far the most important is the one that I wear when I am with the people I love, doing the things I love….and that is never, ever diabetes.

Roche Diabetes Care invited me to speak at the meeting. They covered my flights and transport costs.

Today I’m in Sydney giving a talk to the team at Roche about how I try (and generally fail) to simplify the most complex health condition in the world.

Alas, as I finished prepping my slide deck, I realised I have no real solutions and actually, diabetes remains bloody complex.

As you were…

When I first spoke to my endo about Loop, I wasn’t really all that concerned or nervous. The decision to take my diabetes management in a new direction was mine and mine alone and I knew she would support and work with me. My approach was pretty much the same as when I have changed any aspect of my management, whether it be introducing new tech, a new eating plan or anything else that deviates from the norm.

And after my first post-loop appointment, when she listened to what I was doing and how it was going, her response was brilliant. I guess that after she heard how great I was feeling and how well I was going since looping she realised that this was the best thing for me to do at the moment and she wanted to know how to continue to support me.

But I know that is not the case for everyone and that is especially evident at the moment with more and more people using DIY diabetes technology solutions.

I frequently see discussions online from people who are very apprehensive about an upcoming appointment when they will be telling their HCP that they are Looping. And I have heard stories of HCPs refusing to continue to see people with diabetes who have started using the technology.

This actually isn’t about Loop. At the moment, a lot of the discussion may be about DIY technologies, but actually, this goes far beyond that.

It’s the same as for people who have adopted a LCHF approach to eating and have been told by their HCPs that it is not healthy and they would be better off returning to an evidence-based eating plan.

It is the same as when pumps were new and CGM was new and Libre was new, and HCPs were wary to recommend or encourage their use due to the lack of evidence supporting the technologies.

I am keeping all this in mind as I prepare for a talk I’m giving this weekend for the Victorian branch of the Australian Diabetes Educators Association. I guess I am a little battle-scarred after my talk at ADATS last year, and am being far less cavalier about charging in and extolling the brilliance of Loop. I know that the audience is new to this technology, know little about it, and might be uncomfortable with the idea that I ‘built my own pancreas’. For some, it will be the first time they have ever seen or heard of it.

I’m trying to think of a way to talk about it so that the audience responds positively to the technology rather than the way many responded at ADATS last year.

But I am a little stuck. Because if I stand up there and say that since looping I feel so, so well, have more energy than in forever, am sleeping better than I have in 20 years, feel less anxious about my diabetes and feel safer, don’t have hypos anymore, feel the least diabetes burden ever, and have an A1c that is beautifully in range… and people still question my decision to use the technology, I’m not sure what else I have. I don’t know what more I can say to try to convince the audience just how much this has benefitted me.

The ending I’m looking for in my talk is for the audience to leave feeling interested in the technology and open to the idea of Loop as a possible tool for some of the people with diabetes they see.

But perhaps more than that, it is wanting the HCPs to think about the way they react when someone walks into their rooms, wanting to talk about something different or something new. It’s about being open to new ideas, accepting that the best thing for the PWD is not what the guidelines say, and realising that there is a lot going on out there that is driven by the end user. And perhaps it’s time to really start listening.

The three most important women in my life are forces of nature: My mother, president of union, has instilled in me a desire to do work that helps others. My sister, the fiercest, feistiest, smartest person I know, who constantly challenges me to think outside my comfort zone. And my daughter – my amazing, miracle kid, (and kids like her) – is why I feel that the world is actually going to be okay.

The supporting cast of close family – mother-in-law who just happens to be an Australian aviation pioneer, my sister-in-law, aunts, cousins – and friends means that I am constantly surrounded by brilliant women doing brilliant things. I am astounded, daily, at the challenges they overcome, their triumphs, the lives they change, the impact they are making.

And in my diabetes life it is women – the incredible women – who keep me going and keep me motivated. My diabetes healthcare team is made up exclusively of women who truly breathe the whole person-centred care belief system, building me up and then supporting me as I do the best I can with diabetes. The women I have worked with, and continue to work with, in diabetes organisations who champion those who would otherwise be forgotten have become friends, mentors and daily cheerleaders.

It is people like Cherise Shockley, founder of DSMA; Dana Lewis, creator of Open APS; Susan Alberti, philanthropist; Jane Speight, diabetes language forerunner; Taryn Black, Diabetes Australia policy director and champion for having the voice of PWD heard; Riva Greenburg, journalist, changing the way we see people living with diabetes; Annie Astle, advocate and speaker, and the person I am most grateful to have come to know because of diabetes; Monique Hanley, cycling legend; Christel Marchand Aprigliano, advocate leader; Cheryl Steele, CDE extraordinaire and leader in diabetes technology education; Kerri Sparling, author, blogger and incredible advocate; Anna Norton, Sarah Mart and Karen Graffeo, the women behind Diabetes Sisters; Melissa Lee, incredible communicator, singer, former leader of DHF and now at Bigfoot Biomedical; Kelly Close, founder of diaTribe and Close Concerns; Georgie Peters, speaker, blogger, diabetes and eating disorders advocate…

And you know what? I haven’t even scratched the surface. The diabetes world is shaped by women, built by women, sustained by women. Advocacy efforts are often the brainchild and then led through the blood sweat and tears of women. And how lucky the world is!

 

I celebrate these women today and every day!

More writing about women and diabetes, and women’s health.

Hear Me Roar

This is what Diabetes Privilege Looks Like

The F Word

One Foot in Front of the Other

My Fantastic Frankie

A New Diabetes Superhero

The Sex Talk

Pink Elephants

The D Girls

Healthy Babies

 

 

About a month ago, we needed a new Netflix series to binge on and Aaron suggested we have a look at ‘The Good Place. I’m so glad he did. It was fucking forking brilliant.

I adored all the characters and one if my favourites was definitely the name-dropping, poor-little-rich-girl Tahani, played by the exquisite Jameela Jamil.

The other day, while trawling through Twitter for Oscars updates, I came across her extraordinary #IWeigh initiative and have become a little obsessed. Jamil started this all with a blog post following a truly horrendous – as in ‘what the fuck fork were they thinking’ horrendous – photo of the women in the Kardashian family with their weights superimposed over the top of them. The photo was shared on an Instagram account claiming to be about ‘fashion, beauty, lifestyle’ which apparently is code for ‘Your-life-is-not-good-enough-you-piece-of-shit.’. Who knew?!

Anyway clearly Jamil was unimpressed by this photo – not only that these poor women had been labelled by their weigh in kilograms, but then there was a discussion afterwards that included posters doubting the truth of the numbers given. Awesome, not only were these women being judged about the number they see on the scales, they were also being called out as liars.

I looked at the photo and I stopped seeing the faces of the Kardahsians (I’ll be honest – I wasn’t all that upset) and started seeing them as bathroom scales. Oh – the insta post got better: it asked followers to share how much they weigh, because that’s a metric that we are ALL comfortable sharing with an Instagram audience. (Hashtag fitspo/thinspo/any-other-damaging-spo.)

Jamil’s impassioned post called out the bullshit and begging that we stop defining a woman’s worth by her weight, posting a photo of how she weighs her worth:

This resulted in a rush on women listing how they ‘weigh’ themselves.

While I think many women could relate to what was going on here, add diabetes to the mix and we have it tenfold! In diabetes, we get judged by more than just our weight. We become defined in the eyes of some HCPs by all the numbers associated with our condition whether it be the snapshot BGL check we do in front of them, our A1c, our blood pressure, our CGM trace or even our time in range. The measure of who we are is in those numbers, as if a number can define who we are.

But just like women cannot be measured by their weight (stop it! No, seriously – stop it!) people with diabetes cannot be measured by any of our numbers. Because of course, we are always, always, always about much more than that average number.

I measure my weight as a person not in kilograms or pounds, but in the things that make me who I am. Some of those things weigh me down, others lighten me. But together, they define me and make me who I am.

I’m not sure if it is age, acceptance, or perhaps even an admission of defeat, but these days when I look at my body, I have come to own that it is broken.

I actually say this with a feeling of achievement – I don’t really feel sad about it anymore. I don’t look at it and wish the brokenness away. I don’t want to cry and dream of a day when it will be ‘all better’.

I don’t even really hate what it is anymore, and that is a huge shift from a few years ago.

I have also come to understand – and accept – a lot of those feelings of hopelessness and helplessness were tied up with my fertility, but it has always been more than that.

It has also been about feeling that I am not enough and that my body is not enough. I’m acutely aware of how limiting diabetes can be some days, even if I am the only one who truly knows it. And often, I am the only one who truly knows it. Because my diabetes, by its very nature, has been easy to conceal.

The invisibility of diabetes doesn’t really make sense when it is your body it’s hiding away in. While my diabetes may be shrouded in a cloak of invisibility to everyone else, to me it may as well be covered in glitter, lit by neon and be accompanied by a marching band. There are days it’s all I ever see and all I ever feel.

The confusing thing is that while it has always been so obvious to me, I’ve tried to hide it away from everyone else. Clearly, I don’t mean I’ve tried to hide away the fact that I live with diabetes (exhibits A – Z: this blog/my job/talking endlessly about living with diabetes to anyone who will listen and those who won’t… etc.), but I certainly have frequently tried to hide away how it impacts my daily life.

Some periods in the last (almost) 20 years, diabetes has been harder to hide. Other times, it’s easier. It certainly has been easier since I’ve been Looping because overall, living with diabetes has been easier.

So when something happens that reminds me of just how difficult it can be, it is like a bolt of lightning.

A dodgy sensor on Saturday meant that I wasn’t Looping for most of the day, and that, combined with a shitty chest infection, resulted in some horridly high glucose levels – the highest I’ve seen in over six months. It hit me for six as the limitation of diabetes reared its ugly head. I tried to hide it until the waves of nausea started crashing over me and I took myself home and lay on the couch waiting for it to subside.

But as I dealt with it, I did something I wouldn’t have done in the past. Instead of denying there was anything wrong, or trying to blame anything else I could point my fingers at, I admitted just what it was: it was diabetes.

My broken body is my diabetes body. And it’s all I have. I can’t have one without the other. I may be lucky enough to be able to say that by and large I can manage to keep it in a place I’m happy with. But it is undeniable that there are times I cannot. We can’t always fix what is broken, but we can work around the brokenness. That’s what I do. Every single day.

Broken denim on my broken body. 

Since my talk last at ADATS year about my journey to Loop, I have had many HCPs want to talk to me about my experience using a DIY system. When I was ATTD two weeks ago, several Aussie HCPs also at the conference cornered me, and, in almost hushed tones, asked if they could pick my brains about the whole DIY thing.

I have to keep reminding people that all I can talk about is my own experience – I’m certainly not an expert, my involvement has been following the brilliantly clear step-by-step how to guides developed by a brains trusts of brains far, far smarter than mine could ever hope to be. But I am always happy to talk about my own decision to try Loop, and experiences since.

DIY is not going anywhere and I’m pleased to say that over the next few month I’m giving a number of talks at HCP conferences where I have been asked to speak about how my diabetes management – and attitude to diabetes – has changed since I started Looping. It great to see this on the agenda of diabetes HCP meetings (including the ADEA Victorian Branch conference later this month and the ADS ADEA ASM – or whatever it’s being called now – in August this year. I hope that ADATS will give it more airtime when that come around in October.)

Naturally, and I suppose somewhat reassuringly, the first part of any conversation about Loop is about how safe it is, or rather, questions including varieties of: ‘But the safety! There’s no regulation! There are no RCTs! Where’s the evidence?’ These are often the same things held up by device companies when talking about their products: ‘We are ALL about safety! We have jumped through all the regulatory hoops and come out the other end with flying colours! Here are our RCTs! Here is the evidence!’

When I began reading up about Loop, the thing that would make me close my computer, shake my head and pack all thoughts of it away, was not that I didn’t think it safe. It was that I didn’t think I had the technical aptitude to make it happen.

From the very first reading of the documents and listening to others speaking about it, I realised that this was something that had been built from the foundations of safety. Unlike the health condition that moved in almost 20 years ago.

Type 1 diabetes is not no-risk. At the point of diagnosis, we are handed a supply of a potentially lethal drug. I know I don’t like to think of it in those terms– insulin is my lifeline – but anyone who has even an ounce of knowledge about the treatment of type 1 diabetes knows how potent insulin is.

We know that too much insulin – even a tiny bit too much – can be problematic. And that problem spectrum can be from ‘Shit, I need jelly beans’ to … well, to death. We are faced with this reality every day. I have enough insulin in my pump at any time for it to be extraordinarily problematic if overdosed.

With this knowledge on board – alongside that theoretically lethal drug on board – we mitigate risks with every single thing we do. We over treat lows; we err on the side of caution when we bolus – under dosing for fear of overdosing.

We live safety, we breathe safety – all the time – because if we don’t the risks are high. All too terrifyingly high.

I say this without an ounce of disrespect, but when a device company or HCP implies – intentionally or otherwise – that those of us using a DIY system are being reckless and being unsafe, I find it insulting, and a little disingenuous, because any conceivable hazard is highest to those of us who have the devices stuck to our bodies, and using an algorithm that decides how much insulin to push into our bodies.

I feel much safer Looping that I did pre-Loop. Scary hypos are a thing of the past. My glucose levels sit in a straight, tight line for most of the day instead of the rollercoaster I was used to that would send my mind into a permanent state of fuzziness. I am not running low overnight, only finding out for just how long when I finally wake in the morning and see my Dex trace below the red line for hours and hours and hours without my knowledge. My A1c is in the range that means (allegedly) I am least at risk for developing diabetes complications.

I honestly don’t know how I can be any safer while living with a health condition that throws so many unsafe things at me!

I wrote the post below back in 2016 (original version here). The Lancet had just published a piece about the differences in insulin access around the globe and I was once again astounded and pained by just how difficult it is for some people. 

I wanted to share it again because with the #SpareARose campaign finishing tomorrow, I thought that a reminder of just how dire the situation is for people born with diabetes in some countries was timely – especially for those of you who have been meaning to make a donation to Life for a Child, but just haven’t managed to yet. 

Can you imagine if it was you or your child diagnosed, and that instead of heading to hospital for treatment, and then home again equipped with all the drugs and supplies you needed to manage diabetes, you had been handed nothing but a death sentence? To be honest, I can’t imagine that, because my situation – as with most people reading this blog – was not that. 

Please take a moment to make a donation. It takes USD$5 to provide insulin to a child for a month. (And I promise, this is the last time I’ll be writing about this. At least, for now!)

________________________________

The life expectancy for a child diagnosed with diabetes in sub-Sahara Africa is as low as one year. That’s right: one year.

This is a fact for 2018, almost 97 years after the discovery of insulin.

And it is just not good enough.

In The Lancet, this piece was published about the challenges of accessing insulin around the globe. Why is this drug still so unattainable to so many? Why has access to insulin not had a high priority within agencies such as the UN and WHO?

Why are children and adults still dying when there is a medication available?

I am so angry and sad and desperate that this is the situation and while I am pleased that we are starting to increase the conversation about the unfairness of it, it’s just not enough.

Where is the outrage here? We get angry and feel vilified when someone doesn’t understand the difference between type 1 and type 2 diabetes, or because some celebrity dared to say something stupid about diabetes, and we retreat online and complain and bitch and moan. We say that we feel stigmatised and isolated and misunderstood.

And it’s true. Diabetes is stigmatising and isolating. People don’t understand the details. It’s downright, bloody unfair.

But we are not going to die because we can’t get our hands on a bottle of insulin. Perhaps we need to channel some of our oh-so-easy-to-access outrage and frustration towards an issue that can actually save some lives.

A diagnosis of type 1 diabetes in some countries is a death sentence, plain and simple. And a quick one at that.

And this isn’t okay.

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