Schiphol International Airport is one of the busiest transit hubs in Europe. The train station and airport merge into each other and there are people everywhere.

It’s bright and early and I got off the train from Nijmegen where I’d been for the HypoRESOLVE AGM. A 6.28am train does not make me a happy lass, so I was dreading negotiating an airport that is quite manic before 9am on not enough coffee.

Dropping off my suitcase was easy and I had a boarding pass. Security was the only thing stopping me from sitting down and having more coffee. Standing in line, I started the familiar dance of getting myself ready to pass through the security area. I pulled my laptop from my bag, removed my Apple Watch and medical ID bracelet; my leather jacket came off and I unwound my scarf from my neck.

‘Good morning,‘ I said to the person directing the traffic to the different gates. ‘I can’t go through the full body scanner – I am wearing some diabetes devices that can’t go through. I think I’ll need a pat down.’

‘Not a problem,’ he said. ‘I’ll organise someone. You can have a full massage!’ He smiled cheekily at me.

‘Great,‘ I said. ‘A manicure and pedi would be wonderful too.’ 

He laughed and directed me through to the woman waiting to do my pat down.

I greeted her, still smiling. ‘I’m wearing medical devices. I have one on my arm,’ I signalled to my Dexcom. ‘And two here.’ I pointed to where my pump and RileyLink were comfortably housed in my bra.

She started to pat down my arm. ‘I can lift my sleeve,’ I said. ‘It’s a glucose monitor.’

‘Oh,’ she said, stopping for a minute. ‘You have diabetes?’

‘Yes, I do,’ I said.

‘So does my son. Type 1. He was seven when he was diagnosed. He’s eighteen now.’

‘I have type 1 too.’

‘Do you need to see my insulin pump?’ I asked as she resumed patting me down.

‘No – it’s fine,’ she said. ‘My son doesn’t use a pump. He’s a teenager. Diabetes isn’t the most important thing to him.’

‘It’s not to me either,’ I smiled at her. ‘It’s not all that much fun.’

I looked over to my travel companions who were making their way through security.

‘My friends over there also have type 1,’ I said. ‘Having friends who understand helps a lot.’

‘Like a diabetes club,’ she said. She had finished now and we were just standing there chatting.

‘Not a very cool one, and not really one that I want to be part of. But yes,’ I looked carefully at her. She had that look that I see anytime I connect with someone from our diabetes world. A bit of sadness; interest in talking to others who know, and hope. Always hope. ‘I hope your son is doing well.’

‘He is. He has some friends with diabetes. It does help.’

We said good bye and I was joined by my band of friends. And we went to get more coffee.

DISCLOSURE

My flight to Amsterdam and train travel to and from Nijmegen have been covered by the HypoRESOLVE project.

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I’m in beautiful Nijmegen in The Netherlands for a couple of days for the AGM of the HypoRESOLVE project. We’re in the midst of a very busy time of meetings, updates, sessions about data and statistics (my jet lagged brain is doing its best to keep up!) and discussions about just how significant hypoglycaemia is to people living with diabetes.

Here’s what I wrote after the kick off meeting twelve months ago. The project has made lots of progress and there will be more about that as it all comes to hand. But in the meantime, here’s what happened back in May last year in Copenhagen when the project was launched. (My disclosures remain as per the end of this post.)


I’m back from a very busy week in London and Copenhagen. I arrived back in the door at home exactly two minutes after Harry and Meghan got hitched, so I missed the whole happy occasion. If only we had some sort of magical way to see photos and videos and relive beautiful experiences like that. Oh well, never mind.

The main reason for my trip was for the kick-off meeting for Hypo-RESOLVE, a new four-year project focusing on better understanding hypoglycaemia. I’m there as part of the Patient Advisory Committee (PAC), which is made up of advocates from across Europe. Obviously, it is now legislated that an Australian also be included in any European diabetes advocate activities. I believe it’s called the Eurovision Law.

The project is made up of eight work packages, each led and staffed by leading European diabetes researchers and clinicians, and after seeing just who was going to be in the room, I suddenly was struck down by the worst case of Imposter Syndrome I have ever experienced. This didn’t get any better when I was told that the presentation I had been asked to give was not only for the PAC. No – it would be in front of all eighty project participants. I looked at the list of who I would be standing up and speaking to, and cursed the meme- and photo-filled presentation I had prepared, wondering if I could pretend to understand statistics and graphs, and add some to my slide deck to at least try to sound smart.

I decided to stick with what I knew (memes, cartoons, photos of weird hypo tales), and left the slide deck as it was, hoping against all hope that I would manage to keep myself nice, and sound as though I understood what I was speaking about.

I was asked to give a talk about the real life experiences of hypoglycaemia. Fortunately I have kept a pretty good record of the literal lows of my diabetes (which, incidentally, was the title of my talk). Thanks to the search function on Diabetogenic, I was able to easily pull together a number of stories about the lows I’ve had. This proved to be more useful than I realised because these days, lows are few and far between. Since I started Looping, I’ve not had the sort of low that has made me want to write about it and try to analyse what it all means in my diabetes life. In fact, I’ve not had any lows that have required anything more than a mouthful of juice or a couple of fruit pastilles to treat.

Reading back through my blog posts was actually really quite confronting, and I found myself getting emotional as I read details of terribly scary lows and how they had impacted on me – in the moment, and in the days following. As I read, I remembered the anxieties I felt about something happening while low that would seriously affect my family.

I’ve not asked them, but I wonder if the fact that I have so few hypos these days makes Aaron and the kidlet feel calmer about my diabetes. They still see me sucking on a juice box every now and then, but it is done without urgency, and without the look in my eyes that betrays the calm I used to try (and fail) to convey.

In my talk, I really tried to express just how significant hypos have been in my life with diabetes. I tried to explain that even once a low is ‘fixed’ there are often residual effects – effects far beyond just trying to work out what my glucose levels would do after playing the how-low-can-you-go-hypo-limbo.

I spoke about how the emotional fallout after a nasty hypo can be crippling, leading me to second guess every diabetes decision I made, wondering what I had done to cause the low in the first place – because that is the ongoing narrative of diabetes….we did something wrong to cause the hypo (or the complication, or the high, or the technology failure). And I really tried to explain how sometimes there are no answers, no matter how hard we look, or how desperate we are to find something to blame.

Of course I spoke about the language of lows and how the words we use impact on the way that hypos are considered. There is no doubt that ‘severe’ hypos are serious and need urgent attention and investigation, but so-called ‘mild’ hypos can be just as burdensome.

Obviously, everyone’s hypo stories will be different and I took great pains to clarify that I was speaking of my own experiences only. In the past, hypos have terrified, paralysed and alarmed me. I was afraid to sleep, I was afraid of lows when awake. I was scared I would have a particularly nasty low around my daughter and scare her. I am fortunate that my deliberate non-compliance has resulted in almost no lows, and feeling safer that I have ever felt before. My fear of hypoglycaemia is manageable these days, yet I don’t take for granted that it will always be like this. I still carry hypo food around with me – there is no point tempting the hypo gods by not being prepared!

I’ll be writing more about Hypo-RESOLVE in coming days. I’m so pleased to be involved in such an exciting and interesting project; I’m honoured to have been selected for the PAC. I’m beyond thrilled that PWD are included in the DNA of the project – right from the kick-off, not brought in at the last minute for comment when all the decisions have been made. And mostly, I am grateful that hypoglycaemia is being given the attention it deserves. I honesty hope that one day no one ever needs to feel the panic and fear that so many of us have come to know.

Kicking off the kick-off meeting

MORE:

You can read all about Hypo-RESOLVE in the  Innovative Medicines Initiative media release from last week announcing the launch of the project.

DISCLOSURE

My flights and accommodation to attend the Hypo-RESOLVE kick off meetings were funded from within the project. PAC members are volunteers on this project.

I like your phone case.

I looked up from my laptop and over at the woman sitting next to me in the crowded Qantas Business Lounge.

Oh. Thank you!’ I said to her. We were sitting at one of the high desks, both charging different devices before our flights.

‘I could do with one of those,’ she said to me. ‘I don’t like the word non-compliant, but to be deliberately compliant sounds like a lot of fun. Where did you get the case?’

A friend designed it for me and started to sell it on his online shop after I spoke at a conference for healthcare professionals. I’m with you on not liking the word. I’m a diabetes advocate and to me, non-compliant is a dirty word.’

I saw the woman sit up a little straighter. ‘You have diabetes?’ she asked.

‘Yep. I’ve had type 1 for twenty-one years.’

‘My daughter was diagnosed three years ago. She’s eighteen now. She just started at Uni this year. She’s doing really well.’

I smiled. ‘That’s great to hear. What is she studying?’

Music. She’s a singer.’ There was undeniable pride in  her voice. Now it was my turn to sit up a little straighter.

‘Really? I did too. I was a classically trained flute player in a former life, studying at Melbourne Uni. I don’t play anymore, but I certainly loved it at the time. I thought it was going to be my forever ‘thing’. Then I kind of got side-tracked!’

We sat there and chatted more about music and having daughters and watching them grow up. We talked about raising strong and challenging girls, reminding each other that it was good that they were like that, even though we wished they would challenge others more than their own mothers! She told me about her job which takes her all over the world and we compared notes on coping with too much long-haul travel and far too much time away from our families. We complained about coffee in airports and on planes and how ridiculous our first world problems are. She asked me a little about my job and how long I had been doing it. Our conversation was peppered with expletives and laughter.

I heard my flight being called and started gathering all my things, tucking them back into my overstuffed bag.

‘Lovely to chat with you,’ I said as I stood up to leave. ‘Good luck to your daughter with her music studies.’ I began to walk away, but quickly turned back. ‘Oh, and her diabetes, too.’

‘I can’t wait to tell her that I met someone who has diabetes and studied music.’ She paused for a second. ‘I think she’ll be happier when I tell her that we hardly spoke about diabetes though. She hates it when that is all people ask about her.’ 

‘She is so much more than diabetes. We all are. And there are far more interesting things about those of us with messed up beta cells. She sounds like an absolute gem, ready to take on the world.’

I walked to the gate and as I was boarding my flight, I noticed the woman in front of me had a Libre sensor stuck to her arm. And that she was wearing the most fabulous red, high-heeled boots. I smiled to myself. So much more than diabetes.

Language matters. I feel I’ve said it so many times, and yet I still have people asking me why it is so important. So, I’m revisiting this post from just over twelve months ago which explains just how the words we use to talk about diabetes has an incredible flow on effect. Read on…


I had a great conversation the other day with someone who was interested to talk about diabetes and language with me. ‘I’m trying to get a better grasp of why it’s something so important to you, because, quite frankly, I couldn’t care less what people say about diabetes.’ 

This isn’t the first time people have asked me this. And it’s certainly not the first time I’ve been asked why I spend so much time speaking about diabetes language matters.

I know the reasons, but to be perfectly honest, I’m not sure that I have them especially well mapped out when I need to explain them. So, let me try here.

There is a tangled and complicated link between the words used when talking about diabetes, and how we feel about it and how diabetes is perceived by others. That link then goes off on all sorts of LA-freeway-like tangents to include diabetes and stigma, and discrimination.

The effects of how we frame diabetes can be felt by us individually. But they can also be far reaching and affect how others feel about diabetes.

We know that language has the potential to make people with diabetes feel judged and stigmatised. In fact, most PWD I know have at some time or another faced someone speaking to them using Judgey McJudgeface words. Of course, we all respond differently to this. For some people, it’s water off a duck’s back. They couldn’t care less what people say and just ignore it. For others, it’s almost a challenge – they use it as motivation to prove that they ‘won’t be beaten’.

But that’s not the case for everyone. For some people, it can be absolutely paralysing.

Fear of being judged and shamed may lead to some PWD to not wanting to attend HCP appointments and, as a consequence, falling behind on complication screening. Some PWD may not even tell their loved ones they have diabetes for fear of being judged. I have met PWD who made the decision to keep their diabetes a secret and for years, not telling another person. This can add to feelings of terrible isolation.

When diabetes is spoken about in stigmatising and demeaning ways, this leads to the spreading of misinformation. And this can have far reaching consequences.

We know that kids with diabetes may be teased by their schoolmates. Their teachers may not respond appropriately to diabetes because of the way diabetes is framed in the media or by others. We can’t really blame teachers. If diabetes is punchline fodder for every B-grade comedian, or an excuse to point fingers at those living with it by every tabloid news outlet, how can we expect anyone to take it seriously?

(And if right now you are thinking ‘This is why we need to change the name of type 1 diabetes’, stop it! People with type 1 diabetes shouldn’t be teased or mocked or judged, but neither should people with type 2 diabetes. This isn’t about people understanding the differences between type 1 and type 2 – this about understanding diabetes.)

The language we use when talking about prevention in diabetes – whether it be preventing type 2 diabetes or preventing diabetes-related complications – means that there is an underlying idea that developing type 2, or complications must be the fault of the individual. ‘If you can prevent it and haven’t, it’s your fault. You obviously lived an unhealthy lifestyle/are lazy/didn’t listen to your doctor/failed to follow instructions/refused to do what you were told etc.’.Can you imagine hearing that, or feeling that is what people think about you – all the time? This is the language – these are the words – used to talk about diabetes.

A couple of weeks ago in the UK, it was Prevent Diabetes Week. I saw countless tweets from people urging, begging, pleading with others to remember that type 1 diabetes can’t be prevented and the week refers only to type 2 diabetes. I wonder if those tweeting realised that comments such as these actually contribute to the stigma associated with type 2 diabetes? Of course type 1 diabetes can’t be prevented. But in many cases, neither can type 2 diabetes. There are so many non-modifiable factors associated with a type 2 diagnosis – factors beyond the control of the individual.

But let’s look beyond individuals, the health system and the education system for a moment. What else happens in other settings when diabetes is spoken about in stigmatising ways?

Health organisations, including diabetes organisations, frequently seek donations from the public to continue the important work they do. There is only so much money in the donation pie, and yet there are more and more competing organisations representing people with different health conditions wanting a piece of that pie.

Donations are harder to come by from the general community when there is the idea – the wrong idea – that diabetes is a largely preventable lifestyle condition that is the fault of those diagnosed. There is not the idea that people who have developed cancer brought it on themselves, even though we know that some of the risk factors associated with a breast cancer diagnosis are the same as for type 2 diabetes.

Research dollars for diabetes are far less than for other health conditions. We see that every year when successful NHMRC grants are announced. Diabetes is the poor cousin to cancer research and CVD research.

Diabetes is just as serious as any other condition that is worthy of research dollars and fundraising dollars. Yet because of the way we speak about it and the way diabetes as a condition has been framed, there is a perception that perhaps it isn’t.

Words matter. Language matters.

So, what I want to say to people who think that talking about language and words is a first world problem that only occupies the minds of the privileged is this: I acknowledge my privilege. But this isn’t simply about words. It’s about perception.

Until diabetes is considered the same way as other conditions that are taken seriously and thought of as blameless, the trickle-down effect is people with diabetes will continue to feel stigma. Diabetes will continue to be the poor cousin of other health conditions and diseases because there is the misconception it is not as serious. People will not as readily make donations towards fundraising initiatives. Research dollars will continue to fall short, instead going towards ‘more worthy’ conditions.

That’s why I care so much about diabetes language. Because, language matters… so much.

On Saturday I was invited by Diabetes Victoria to be part of the diabetes technology panel session at their Diabetes Expo. (Disclosures at the end of this post.)

The session was on the program as being about ‘The ins and outs of diabetes technology’ and promised to offer perspectives from people with type 1 and 2 diabetes, a researcher, endocrinologist and CDE.

The panel involved two of my favourite endocrinologists – Professor Peter Colman and Professor David O’Neil. I have known both for a number of years and they are, without a doubt, absolute giants in the diabetes clinical and research world. I love that they accept and acknowledge there are limitations to current tech and are not afraid of DIY solutions. Even more, I love how they are very respectful of the expertise of PWD and understand that choice is essential. How wonderful to be on a panel with HCPs who regularly deferred to the PWD sitting alongside them to answer questions and further the discussion.

The session got off to a slightly rocky start as we diverted a little from the designated topic, but we got back on track eventually with the panellists being able to share their experiences and views about just where we are with diabetes tech in 2019, how it can help people living with diabetes, the frustrations tech can lead to and what we hope for the future.

I enjoyed the question about whether tech makes life easier for PWD. I honestly believe this is a double-edged sword – technology is designed to make our lives easier and that’s what it promises to do on the box, but the reality can be very different.

This is something I speak about when explaining my love/hate relationship with tech. Getting things right so that I don’t want to tear devices from my body and throw them out the window takes time. My first encounter with CGM was shocking and I swore to never use it again. The first sensor insertion caused so much blood that the Medtronic rep helping to teach me how it all worked actually gasped and then claimed never to have seen anything ‘so scary’ before. That was not reassuring. The words scary and gory weren’t on the box.

Then there was the data overload, unstoppable alarms and inaccuracy. How was this device meant to revolutionise my diabetes treatment (thatwas promised on the box!) if it was inaccurate, caused me to bleed everywhere and caused me so much frustration and distress that I never wanted to see, let alone use, CGM as part of my diabetes management. Ever. (Fast forward a number of years and thank god that’s not the case anymore!)

There was a lot of talk on the panel about how far we’d come and how lucky we are to be living with diabetes in 2019 rather than in 1959 or 1969 or anytime other than now. We were reminded of glass syringes that needed boiling and needles that needed sharpening. And days before home glucose monitoring, back-pack sized insulin pumps and the good old days where things were really not so good. Just old.

I won’t for a moment deny that we have come leaps and bounds since those days. In the twenty-one years I’ve lived with diabetes there have been lots of tech changes and improvements.

We were asked by the panel moderator how we feel about tech in 2019 and the answer from other panellists was that they feel hopeful and appreciative. The CDE on the panel has lived with type 1 diabetes for thirty-seven years and obviously has seen a lot of changes in that time. The two endos on the panel said that they feel that there have been huge strides made in tech – rapid and very significant in recent years.

When it got to me, I acknowledged what the other speakers had said. ‘I am really pleased to be living with diabetes in 2019,’ I said. ‘I use tech and I generally do love that it is available to me to use, despite the frustrations.’ I paused and looked around the auditorium. I had more to say and I had a split second to decide whether I just left it there, saying what I felt people expected me to say. Or I speak the truth – my truth.

I lifted the microphone to my mouth. ‘But actually, I’m angry,’ I looked around again, settling my gaze on the group of people in the room I knew. ‘I’m angry because we are where we are, and PWD are being given a rough deal.

‘Technology should be easy and accessible and affordable for everyone and it is not. I use a DIY system that means that I am the least burdened by diabetes than I have ever felt. But to get this system, I had to build it myself. It is unregulated, it is experimental. And people like me, doing what we do are largely met with scepticism and suspicion from HCPs who don’t understand the technology. We are accused of not taking our safety seriously – often through passive aggressive comments from not only HCPs but also device companies about the only safe devices being those that have been through RCTs and regulatory bodies. When we talk skin in the game, those of us who have these devices actually attached to our skin have the most at stake, so suggesting we don’t care about safety is ridiculous.’

I paused long enough only to take a breath.

‘The technology is available to do what I am doing, but it takes so long for device companies to get new things to market and through regulators, and even then we are stuck with set targets and limited customisation. We are languishing with older, nowhere near as useful tech. We are expected to accept that and just deal with it and be grateful for it. THAT is why there is a hashtag and a movement called #WeAreNotWaiting. That is why am not waiting. And it’s why I’m a little angry.’

I don’t know everyone who was at the tech panel session on Saturday, but there was a group that I did know. They were the ones who applauded after my little rant.  When they hear a group of panellists claiming that we are fortunate because the current available tech is so much better than what was available 70 years ago, they shrug their shoulders and know that there is more. They are the ones who have started down the DIY road or the Afrezza road (as one audience member explained).

We should not feel that we have to be appreciative, or that what is offered is the best there is. I am so, so glad that there are people out there who have not been prepared to just accept what was on offer, and instead go out there and make better tools – make the current tech better. They were not satisfied, and their smarts and determination has meant that many more of us don’t have to settle for the vastly imperfect tools available. Sure, DIY solutions aren’t perfect either, but they are certainly better.

I’m not really sure how my comment was taken by the broader audience. I suspect that a lot of them weren’t too sure how to take the woman waving her hands about, even after I promised them that I’m really not angry all that much and that I am actually quite delightful (not sure I fooled anyone on that point).

Probably the message that resonated most throughout the panel discussion was that choice is important and that there is no one size fits all solution to diabetes technology. That is definitely true. But that extends to there being no one size fits all to how we feel about the overall tech landscape. And the way I feel is that I am not willing to accept the status quo.

DISCLOSURES

I worked at Diabetes Victoria from September 2001 until January 2016. I was not involved in the planning of the 2019 Expo. I did not receive payment to speak at the Expo.

Hi, my name is Renza and I never update software, operating systems, apps or anything that needs updating on anything. If I needed some sort of personal software update each year upon my birthday, I’d still be running whatever I was using when I was seventeen. I don’t have auto updates set up because 1. I’m an idiot and, 2. I used to, and once that caused problems with…something. Can’t even remember what, but obviously it left some deep scar somewhere and now I won’t do it again.

Most days, this apathy makes no difference to anything at all. I eventually get around to updating and on I go. No big deal.

Except for when it becomes a big deal. Because then I find myself #LooplessInMelbourne.

On the morning of Good Friday, my Riley Link died. Let me set the scene here by saying my RL had been dying for some time. This was not something that ‘just happened’. It had started needing a charge around mid-afternoon as well as the overnight charge it had been getting since I started using it in August 2017.

But on Good Friday, it decided that was it. No more charging. My Loop turned red and that was it. RL dead. Done. Gone. Finished. Just as it had been warning me was likely to happen for a few weeks.

Now, someone smart would have thought this through as soon as the RL started to need extra charging, and understood the following: 1. RL needs replacing, 2. make sure back up is available, 3. double check Loop docs for how to swap out old RL for new one, 4. follow instructions.

I got as far as step 2, and that was it. I was supercilious in my back-up planning skills and took my spare RL out of my diabetes cupboard, leaving it on my desk as though that was enough to miraculously sort everything. Idiot, thy name is Renza.

On that (not so Good) Friday I put all thoughts of sorting it out of my mind and set about my day. It was a public holiday, so I figured I’d fix it all later. I also thought it would be just a matter of switching RLs over.

Not so much.

Around midday, I sat down and read the Loop docs and immediately realised that I needed to update my Loop app to use the new RL. I’ve rebuilt the app before and I know it is a simple process.

I scanned through the docs and saw that I needed to make sure that all operating systems and apps were up to date. Suddenly every single update notification that had popped up in the last year flashed before me. So did every post, plea, warning to update everything from Katie DiSimone on the Looped Facebook page.

I set to updating my Macbook, iPhone and Apple Watch. Easily done. Then, I came to Xcode. And the wheels fell off. (Xcode is an app and needed to build Loop.)

I don’t think I’ve updated Xcode since I loaded it onto my Macbook, back when I first built Loop. I do remember it taking FOREVER to upload and install. The update took longer. The first time I tried to update, it took almost three hours to not work. The second time, it took four. By this stage it was late on Friday. Clearly, I was paying no attention to what was going on because when I saw that it had finished updating, I assumed that all was good and off I went to rebuild my Loop app.

Building Loop is simple because the instructions have been written for people like me in mind. Technologically hopeless, but eager to understand. They are step by step and, honestly, if you follow every step as laid out, you cannot go wrong.

So, off I went. Step by step. And then…

Red error message.

I read the errors page and tried all the suggestions, but the same error message came up. It was getting late and I was exhausted, so at 1 am, I went to bed. I was over it and figured that fresh eyes in the morning would do the trick.

I woke on Saturday and with those fresh eyes I realised straight away that Xcode had not updated. That’s right – the second attempt had failed too, and I had been trying to rebuild Loop using an outdated version.

As it turns out, third time’s a charm and while eating Easter lamb at my in-laws, Xcode updated successfully.

After lunch, I opened the new version of Xcode and followed the instructions to build Loop. That took under 5 minutes and no brain power or tech know-how (from me, that is – a lot of people had used a lot of brain power and tech know-how to make it so easy for me).

Shortly after, the Loop app appeared on my phone. I entered all my relevant info (another 3 minutes work from me) and then almost straight away my Loop turned green.

And I’ve been happily Looping ever since.

So, here’s the take home: Keep everything updated. If I had done that, the rebuild of Loop would have taken a total of 15 minutes. And most of that would have been sitting and waiting for Loop to re-install on my phone.

I was telling someone about this whole (actually rather boring) story the other day and a little smugly they said ‘That’s why I won’t use a DIY system. Sounds like a nightmare. They can’t be relied upon.’

But actually, that’s not the case at all. What is unreliable is me and my inability to do the basic updates that all our devices require. Our commercially available apps (such as Dexcom) require us to update occasionally. In twenty months of using Loop, I’ve updated the app once (when I got a new iPhone).

Being #LooplessInMelbourne wasn’t really a big deal. It did, however, remind me why I am a huge fan of DIYAPS as the right tool for me right now. And it also reminded me that I really am not much of a fan of DIYDiabetes. That’s really not for me at all!

Loop’s back, baby!

Some weeks in diabetes feel longer than others. This week has felt like a millennium. And it’s felt nasty.

I took most of the Easter long weekend off Twitter because there was some mean stuff happening, with the usual suspects rearing their bullying heads. I ventured in once but didn’t want to spend my weekend seeing what people were saying about my tweet. Apparently said tweet also wound up on Facebook, because being held up as an example of the hopelessness of the diabetes mafia on just one social platform wasn’t enough.

Whatever.

If I had to say something positive about it all, (being the Pollyanna type), it would be that I do appreciate the lack of passive aggressiveness of these bullies. They let you know where they stand – no Vaguebooking or subtweeting from them!

But then, I also lack subtlety. And so, here’s an unambiguous reminder for everyone. Because after the week that was, I think we could all do with a little bit of kindness.

Dr Jen Gunter* is a brilliant OB/GYN in the US, and she seems to have to spend a lot of time dispelling myths created by looney wellness gurus and Gwyneth Paltrow about things that help women’s health – most of which seem to involve shoving things up one’s vagina. Their non-science approach has included suggestions of inserting jade eggs, glitter and (most recently) garlic cloves in the vagina for all sorts of weird and not-so-wonderful purposes.

So, the good doctor writes blog posts and Twitter threads about why sticking ground up wasp nests (I’m serious) inside our vagina is a very, very bad idea. (I know – that should be self-explanatory. Alas, for some in this world, it is not.)

We get to do this in the diabetes world too. While I’m yet to see anyone suggesting inserting household items, bulbs or crushed up stinging insect homes into our orifices as a potential cure, there certainly are other myths that seem to regularly come our way and have people wondering if maybe, just maybe, they would work better than insulin.

They will not.

Cinnamon will not cure diabetes. I even have a little n=1 study to prove this. I ate nothing but cinnamon buns for two weeks while in Copenhagen and Stockholm and my diabetes did not disappear.

Okra water may have improved the glucose levels of pregnant rats (in one study), but it will not work as a substitute for insulin, so don’t load your pump up with it.

And while I can honestly say I have no interest whatsoever in any of the klusterfuck of Kardashians (I just created that collective noun for them), as soon as one of them trespasses into my diabetes world, you bet they become fair game and on my radar. This little gem from Khloe gets a regular show in diabetes presentations I give:

Myths and misconceptions everywhere! We may laugh about them, and share silly memes, but sometimes, they do more than just cause us to roll our eyes. Sometimes they can be a little more damaging.

Hello Easter, and hello myth that low A1c guarantees zero complications.

The reason this was getting a run was because Easter for many means chocolate, and chocolate is like kryptonite for some low-carbers. Out came their claims that carbs are a one-way street to Complicationsville.

Diabetes-related complications don’t work in a logical, or especially fair, way. There is no formula that you can go to that works it out for you and is accurate every single time. Much like there is no pie for low-carbers, there is no Pi for diabetes.

It would be great if there was. I would love something that worked like this all the time:

A1c <5% = 0 complications ever, ever, ever.

Alas, it doesn’t work that way.

Diabetes-related complications are fucked up for many reasons. Before we even get them, they can be terrifying. We live with this fear hanging over our heads and for some of us, that terror can be horrid.

They come with all sorts of blame and shame and judgement and finger pointing, plus a good measure of guilt. Isn’t that fun?

There are other factors at play that contribute to the development of diabetes-related complications. And we don’t know what they all are. That’s why we see examples of two people running the same A1c for the same number of years yet one has complications and the other doesn’t.

And then, if we are diagnosed with them, we need to readjust our lives to work around this new reality that can be debilitating. And that’s just the physical side of it – the psychological side adds a whole other level.

There is evidence to show that an in-range A1c lowers the risk of developing diabetes-related complications. We have that information and it is regularly and repeatedly banged into our heads. One of the first acronyms I learnt when diagnosed with diabetes (literally day 1) was DCCT!

I know that the idea of developing diabetes-related complications after ‘doing everything right’ and living with a super low A1c doesn’t seem fair. I also know that people are terrified about what diabetes may hold, so gripping onto a promise that the bad stuff won’t happen can be reassuring. We all want reassurance. We all want hope.

But a reduced risk does not equal no risk. Diabetes doesn’t work in absolutes. And people who think that it does are, quite simply, wrong. I really wish they would stop spreading myths about it. (That goes for you too, Khloe.)

*Dr Jen Gunter has written a book and it’s due out later this year. I’ve pre-ordered and you can too here. It’s called The Vagina Bible, or as it has become known in our place thanks to the fourteen-year-old kidlet’s wordplay: ‘The Vible’).

Twenty-one years of diabetes feels like forever sometimes, and I feel as though nothing surprises me anymore – it’s just same, same, day in, day out. And most days really are like that. But then there are moments that jolt me.

I had a moment this weekend that did just that. It felt familiar, because it happens occasionally. But it passes and I forget. I think that before this weekend, I’ve never really tried to work out just what it was that I was feeling.

But this time…this time I did.

Perhaps it was because I had four glorious days of long weekend and time to think, or maybe it was because diabetes was far more dominant than I’ve come to expect, thanks to thirty-six hours without Loop (which is a story for another time).

This feeling is like being in the ocean and being pushed under by an unexpected wave. I feel overcome and I feel that every single part of me is being caught up and I can’t escape. It hits me out of nowhere and as I’m being pulled under, it takes over.

It lasts no more than a heartbeat or two, and usually I just shake it off and get on with whatever I was doing.

But this weekend, I stopped and along with feeling swept up, I felt an overwhelming and complete sense of sadness descend upon me. I know I have diabetes. I have accepted it. I feel it living in me. But this sadness is matched with a realisation that this is it – I don’t get a chance to be without this ever again.

I’m doing a lousy job trying to explain this, and I don’t want to sound like I am in the midst of some sort of crisis, or about to sink into the depths of a period of burnout. I’m not there – or even staring it down.

This is just that fleeting moment of remembering that diabetes will always be present, and each day, it will rob me of some of my time, my mind, my headspace. It makes me feel sad when I think of this.

I was reminded that we do so much to just settle ourselves around all that diabetes demands of us. Some of that is physical rearrangement as we accommodate the devices and scars and paraphernalia that accompany this condition. But so much of it is how we think and feel. In the past I have not given this feeling a name, or allowed it to be any more than a passing flash – barely a blip on my consciousness. Maybe this time I permitted more because I could handle it and was ready and able to give it a place.

My body and mind are taken up so much by diabetes – I don’t want to give it any more attention. But this weekend, for more than just a minute – although not too much more – I gave name to this sadness that I feel. It passed and on I went. But it lives there now – or rather it always has.

If I see another article about ‘guilt free’ Easter meal ideas, or read about how people will ‘be naughty’ and eat chocolate eggs, I am going to throw myself into a vat of Lindt Bunnies and not emerge until next Tuesday. It’s everywhere – and even more prevalent on diabetes-related sites.

Is it any wonder that so many of us with diabetes have a fraught relationship with food? With so many judgement-laden words associated with the foods we eat, our diets, and eating during festive periods, it can seem impossible to not feel that everything we put in our mouths comes with some sort of grading.

I don’t know how many times or in how many different ways I can say that food doesn’t have a moral compass. There are no good or bad foods. There is no one eating plan that works for all people.

And more than everything – it is not okay to tell a person with diabetes that they should feel guilty for eating a chocolate Easter egg (or anything else for that matter).

Being diagnosed with diabetes does not mean that you are now open for business for comments, criticism, advice or condemnation about the foods you choose or choose not to eat. Your eating choices are not for public scrutiny. No one has buy-in on your food choices unless you ask their opinion.

We are programmed from when we are young to think of foods as a way to measure our virtue. Unlearning all that messaging is really, really tough.

And diabetes makes it so much harder because we see the impact of what we eat and how our food choices affect our glucose levels. CGM may provide countless benefits, but it also lays bare what we have eaten. But, just as our food choices are no one else’s business, neither is what that food is doing to our CGM trace (or reading on our glucose meter).

My hope for all my diabetes tribe this weekend is this: may you find some chocolate of choice (or not, if your choice is no chocolate). And may no one pass judgement on what you are eating, pass comment on your glucose level, ask you what you ate, tell you to eat only half a hot cross bun, or belligerently ask you if you have bolused for it.

So yes, let’s have a guilt-free Easter. But I don’t mean that in terms of cutting out what we want to eat, or being made to feel bad about it. I certainly don’t mean it in reference to being made to feel guilty because we have a higher glucose number than we would like to see. I mean let’s just free ourselves completely from any guilt associated with food, or the numbers following eating that food. That’s actually one thing I am in favour of completely restricting.

Easter baking plans…

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