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NOTE

I work at Diabetes Australia. It is important for me to highlight this because I am writing about a TV show that has not been especially complimentary to that organisation. That is not why I’m writing though. I’m not here to defend or respond to the claims made about

Diabetes Australia. This post is about the way the story of type 2 diabetes is being told in the series. 

However, I think that it is important to highlight the lens through which I am watching this show and consider that bias. I think it is also important to consider that my position about stigma, blame and shame and type 2 diabetes has been consistent for a long time. 

This post not been reviewed by anyone at Diabetes Australia. As always, my words and thoughts, and mine alone. 

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It will come as no surprise to most people that when Diabetes Australia launched a new position statement about type 2 diabetes remission, there was a section on language when speaking about this aspect of type 2 diabetes management. There is also this point: ‘People who do not achieve or sustain remission should not feel that they have ‘failed’.’ 

Language matters. I wrote about my own concerns about how we talk about type 2 diabetes remission in a post a couple years ago. I am not saying that we shouldn’t be talking about it, or helping people understand what remission is, but I am saying that the way we talk about it must be considered. Because adding more blame and shame to people serves only to further contribute to the burden of living with the condition.

Unfortunately, the same consideration has not been given to a new show on SBS, grandly called ‘Australia’s Health Revolution’. The three-part show is presented by Dr Michael Mosley and exercise physiologist Ray Kelly, with the aim to show that type 2 diabetes remission is achievable with a low-calorie diet. Eight Australians with type 2 diabetes, or pre-diabetes are there as ‘case studies’.

This post is likely to draw criticism from some, and I accept that. But I will point out that it is not actually a commentary on whether remission of type 2 diabetes is achievable or sustainable for people with type 2 diabetes. I am a storyteller and a story listener, and I hear stories from people who say that they have achieved remission and others who haven’t. In the spirit of YDMV, I’m going to say that there is no one size fits all, and that this is a super complex issue. 

This post also isn’t a commentary on the struggles some people with type 2 diabetes face when trying to find a HCP who will support them to aim for remission using a low calorie and/or low carb diet. I think that my position on that is abundantly clear – if your HCP isn’t supporting your management decisions, find a new HCP. 

What this is about is how a TV show being shown at prime time is presenting type 2 diabetes, and what is being missed.

Michael Mosley is a TV doctor from the UK who has written books about low calories diets. I probably should be wary to say anything that isn’t glowing praise for the good doctor, because last time I dared do that on TV I was fat shamed. Of course, I wrote about it. Read it here. I know people who diligently follow his 5:2 or low-calorie eating plans and say it has greatly helped them and is terrific for their health. To those people, I say ‘Fantastic!’. Finding something that works is a challenge, and if you’ve found that and you are enjoying it and it’s sustainable for you, brilliant. Anything that improves someone’s health and makes them feel better should be celebrated!

I have no comment to make about Michael Mosley’s diets or the fact that he is selling something – books and a subscription diet plan. But I do have a lot to say about the way he is presenting type 2 diabetes. He is treating type 2 diabetes like an amusement park ride. He started in the first episode by sharing that he was going to ‘Put his body on the line eating a ‘fairly typical Australian diet’ … of ultra-processed food, to see if it pushes his blood sugar into the diabetes range.’ He then had baseline bloods and other metrics taken. 

The food Michael Mosley claims to be typically Australian bears no resemblance to the foods that I eat, that I grew up eating, that I cook, that any of my friends or family eat. But, unlike Mosely, I’m checking my privilege right here, and acknowledging that living in inner-city Melbourne with the means to buy fresh foods whenever I want or need and having an excellent knowledge of food and health, plus the time to make things from scratch (something I greatly enjoy doing) means that I am in a different situation to many people whose circumstances don’t mirror mine. 

I don’t judge what other people eat, and I don’t apply moral judgements to food. I consider what it costs to put food on the table, and food literacy. Plus, I am learning about how we have simply used the term ‘cultural groups’ to point to higher rates of type 2 diabetes in people of certain backgrounds is a lazy, get-out-of-jail-free card that doesn’t examine important factors such as food availability, poverty, education and history. 

I understand that while for some people, walking to the local market is easy and affordable shopping, others are at the mercy of what is on the shelves of their local supermarket. It is not as simple as saying stop eating processed foods when, for some people, that is all they have access to, or to tell people to cook for themselves where they have never been taught. These systemic considerations have not been addressed so far in the TV show, and without doing so, only half the story is being told. 

And mostly, I understand that there are genetics at play – massively. 

These are not excuses. These are factors that need to be mentioned and considered, because without doing so, we are presenting this as a simple, mindless issue and anyone who doesn’t put their type 2 diabetes into remission has only themselves to blame. 

Mosley ate his ‘typical’ Aussie diet for three or so weeks and when he had those same checks run to compare against his baseline, he found that his weight had gone up, as had his blood pressure, glucose levels, cholesterol etc. 

Now, if you are thinking you have seen all this before and jumped into a time machine and been taken back to 2004, you would be correct. We saw it first in 2004 when Morgan Spurlock entertained us with his documentary, ‘Super Size Me’. And then again in 2015 with Damon Gameau’s film ‘That Sugar Film’. There is nothing new about privileged white men eating the ‘foods of the poor’ and showing that their health has taken a hit. 

Michael Mosley then started eating a low-calorie diet to show just how quickly and simply his weight dropped, and other metrics moved back to within target range. 

Thankfully, alongside Mosley is Ray Kelly, and I am so, so grateful that he is there, because he leaves the sensationalist schtick behind to focus on the people and their stories, working to help them set achievable goals. He replaces Mosley’s melodramatic with compassion, simplicity with conversations about the complexity of diabetes, and privilege and assumptions with a genuine acknowledgement of the challenges – the social, generational, cultural, psychological challenges – faced by the people with diabetes and prediabetes on the show. 

When watching the show last night, my daughter said, ‘Is this like ‘The Biggest Loser’ on SBS?’. I smiled but pointed out that the difference is Ray Kelly. In this show, he is working with Lyn, a woman who is trying to lose weight. Lyn has decided she wants to climb a hill in her area. If it was ‘The Biggest Loser’, they would have tied a truck tire around her waist and made her climb to the top of the hill, with Michelle Bridges screaming at her while she was doing it. But here, Ray marked out the first challenge – a 50 metre there and back walk, to be increased to 75m the next day, knowing every step is one more than the day before. 

The big piece missing for me in this television series the absence of any sort of mental health professional (perhaps this will be included in the final episode?). Diabetes is never just about numbers. It’s never just about what we eat, or the medication we take, and it’s never just about what we weigh.  Addressing behavioural change must be part of this discussion if change is to be sustained. In an interview he did for the show, Mosley says ‘Anxiety also encourages people to eat more’. And yet, at no point has anxiety or any other mental illness and its impact into type 2 diabetes and obesity been discussed. 

Should we be speaking about type 2 diabetes remission? YES! Of course we should, especially as there is a growing body of evidence helping us to understand more and more about it. But we need to be doing it better than we’re seeing here. I don’t know Ray Kelly (expect for a couple of encounters on Twitter), but I feel that his approach is what we need more of. We certainly don’t need sensationalism and blame and shame. And please, we don’t need more stigma. 

Last month was the tenth anniversary of Diabetes Australia first launching a position statement about diabetes and language, encouraging everyone – health professionals, researchers, the media and the general public – to be conscious of just how powerful the words used about diabetes can be.

People with diabetes already knew this – we’d been speaking about it for decades. But to have a document supported by research certainly did add some weight to the discussion. It started a global movement and other diabetes organisations and groups have since launched their own guidance statements and documents motivating the use of language that doesn’t shame, blame and stigmatise diabetes.

Today, I’m so delighted to be hosting a panel with some of the people who have been instrumental in elevating and advancing the #LanguageMatters movement all around the world. You can watch from the Diabetes Australia Facebook page – there’s no need to register. And, I’ll share the full video of the Summit on here some time in the next couple of days.

Disclosure

I work at Diabetes Australia. I have been involved in organising this event and will be speaking at it. I’m sharing simply because I’m beyond exited that it’s happening and am hoping to see lots and lots of you there!

When I talk about the highs and lows of diabetes it’s not just the rollercoaster of numbers. I wrote yesterday about feeling a little low and overwhelmed after a particularly gruelling day. Today, however, I’m on an absolute high after a busy night, or rather, early morning, giving two talks at the ISPAD conference. 

docday° was a little different this time, in a truly brilliant way. It was the first time that the event was on the scientific program of a conference, meaning that it was easier for conference registrants to attend. Having a program session that is truly led and designed and features PWD, elevates the standing of lived experience.

The docday° program highlighted some of the topics very close to the hearts of many people with diabetes. Emma Doble from BMJ spoke about working closely with the docday°voices team to publish stories written by individual and groups of people with diabetes. How fantastic to see the words and lived experience feature in such a prominent medical journal!

I touched on language and diabetes – the first talk on the topic for the conference for me. Steffi Haack gave a beautiful talk about peer support and touched on what we get from being in a community of others with diabetes can offer. Steffi managed to perfectly capture the essence of what the community can offer, while also discussing why it’s not necessarily perfect. And we finished with Tino – Tinotenda Dzikiti – from Zimbabwe talking about access and affordability of diabetes medications and treatments. Tino has been a standout advocate in the dedoc voices program, and I make sure to take any chance I get to listen to him.

After docday°, I was an invited speaking in the Psychosocial Issues in Diabetes Symposium which involved an incredible panel of speakers including Rose Stewart from the UK and Korey Hood from the US. Rose spoke eloquently about the importance of integrating psychologists into diabetes care teams, and Korey provided some terrific tips about dealing with diabetes burnout. I followed the two of them (not daunting at all…!) to talk about the language matters movement in diabetes, starting with a reminder that we are talking about more than language – and it’s certainly more than just specific words. It’s about communication, attitudes, images used, and behaviours. 

The way that I speak about language these days is different. I think that at first, I spent the majority of the time explaining what it was all about. These days, there seems to be enough ‘brand awareness’ in the community about language matters and that means being able to home in on some of the more nuanced aspects of it. 

And so, while I still talk about words that I (and from research we’ve done, others) consider problematic (‘compliant’ is the one that I like to highlight), I spend more time talking about the image problem diabetes has, and about the trickle-down effect language has had on shaping that image. 

I point out that there are people who think that language is not all that important in the grand scheme of things, and that there are more important things to worry about in the diabetes world and I very much understand that. I also understand that people have different focuses. But when I ask people what those important things are, they include issues such as research for a cure and better treatments, better access, more education. And then I can’t help but see and think about how research is less because of the image problem about diabetes. That treatments and a cure need governments to prioritise diabetes when it comes to their research dollars and individuals need to give generously when there are funding drives. 

But because diabetes is seen as something not serious, and that people are to blame for their own health condition, we are not seeing those dollars coming our way. 

It never is and it never was about picking on certain words; it has always been about changing attitudes. Because that is what will change diabetes’ image problem. 

I am an advisor to the #dedoc° voices program. I do not receive any payment for this role. 

As an invited speaker at the #ISPAD2021 annual meeting, I was given complimentary registration for the conference. 

I am helping organise the Diabetes Australia Global Language Summit, and will be hosting the panel discussion. 

A couple of crappy anxiety days have left me feeling a little spent and exhausted. Add to that some low-key diabetes burnout, and I’m wondering if I can somehow leave diabetes out for the upcoming hard rubbish collection in our neighbourhood. 

The anxiety was mostly to do with a work thing yesterday which involved a live Q&A about type 2 diabetes remission. When I’m on my game, that sort of thing has me pumped! I know that the discussion will be lively and that there could be some contention in what we’re saying, and I thrive on robust debate.

But right now, I’m not feeling completely on my game. Burnout, lockdown and just feeling tired, combined with feeling a very long way away from friends and colleagues a lot of my work is with, has left me a little weary and downbeat. So instead of the fire I usually feel when I need to deal with something that could be a little controversial and provocative, I was dreading it.

A moment of light came after the live Q&A when I had a call from who wanted to speak with me about the new Type 2 Diabetes Remission Position Statement from Diabetes Australia. After watching, they decided to take the time to reach out to me and admit they were wrong about me. They thought I’d been dismissive and negative about the way they manage their diabetes, when in fact, it seemed I was the complete opposite of that. When I asked why they had thought that of me, they said, ‘You just seem so confident and assertive, and I mistook that for thinking you were really rigid in your beliefs about diabetes.’

It’s funny how we form impressions of people. Sometimes we can be spot on. Other times, not so much. I’ve been totally wrong about people in the diabetes community because once I’ve looked beyond the tweets, I see that there is far more to them than the soundbites that get all the attention.  

When people tell me (or, more likely, subtweet) that they think everyone should think the way I do about diabetes, manage their diabetes in the same way, feel the same about the issues important to me or that I think I speak for others with diabetes, I’m genuinely confused. I’ve never said any of those things. The about me page on my blog states: ‘This blog does not provide medical information or advice. I write about my own experiences of living with diabetes but please don’t think that you should take on board what I’m doing and apply it to you. We’re all different and our diabetes varies. Significantly. Get thyself to an appropriately qualified healthcare professional to help yourself out with your own particular brand of diabetes.’

I throw the caveat “my diabetes, my rules” around like glitter and anytime I do speak about diabetes, I am very clear that I am but one person in a very, very large choir, and that the audience should make a point of listening to lots of those voices. 

So, it is with no surprise at all that it seems that some corners of the LCHF world think that I completely and utterly condemn their chosen way of managing diabetes. What a lot of rubbish! I can only assume the reason they think that about me is because I have been pretty vocal about the way some in that community respond to others who have different ideas. I call out stigma and shaming, and I call out anyone saying that everyone should follow the same way of eating.

I stand by that. And I stand by it in all aspects of all types of diabetes. If anyone truly believes that there is one way and one way only to manage diabetes, they are very misguided.  

In case I was feeling too pleased with myself after that phone call yesterday, I was dragged back down to earth with a shouty email (in ALL CAPS) demanding to know why I don’t advocate remission in type 2 diabetes. Sweetie, I don’t advocate anything other than the rights of people with diabetes to do what they want to manage and treat their diabetes in a way that works for them. I advocate choice. Choice is critical and my passion lies in ensuring that people are given choice. 

I love my pump, I love LOOP, but I don’t reckon everyone should be on it. I don’t think everyone should do DAFNE or wear a Libre. I don’t think everyone should just follow what their doctors tell them to do. I don’t think everyone should be eating LCHF any more than I think everyone should be eating a vegetarian or Mediterranean diet. I wouldn’t try a vegan diet because the thought of no bacon makes me weep, but hey, if it works for you and you like it, can sustain it, can afford it and are happy doing it, high five!

Anyway, in a roundabout way, this post is to say that there is a new position statement about type 2 diabetes remission available and you can find it here if you’re interested

And it’s also to say that forming opinions of people in the diabetes world is perfectly fine and we won’t all agree or love each other (and that’s fine too). I know I’ve formed opinions of people based off one tweet, or one encounter. It’s probably quite unfair on my part, and when I’ve re-engaged with some of those people, I’ve found that they have a lot more going on that just that one idea of them I had. I’m glad I did try again. 

My anxiety is a little better today. I weathered yesterday’s storm and came out of it only mildly battered. I’ll call that a win. 

DISCLOSURE

I work at Diabetes Australia. I was not involved in the writing of the position statement that was launched yesterday. I’m writing about it because it’s interesting and relevant to my diabetes today and yesterday. 

I facilitated an event for Ascensia (disclosures at the end of this piece) last night/early morning and the crappy time was partly (mostly) my fault, because although I sacrificed the Aussies and suggested we draw the short straw in the time zone lottery, I forgot that daily saving would have kicked in for us meaning kick off time was 11pm and not 10pm. That may not seem much – I mean, what’s an hour? – but there is definitely a psychological barrier about doing work after midnight. (Anyway, I digress, and that paragraph has just about put me to sleep). 

The reason for last night’s adventures after dark was a facilitating gig for Ascensia’s latest Diabetes Social Media Summit (DSMS). The thing I love about (and why I am so keen to be involved) in these Summits is because they have tacked some difficult topics that are often hidden away. 

This one was no different in that we looked to address something that needs more attention – diabetes and women’s health. In my introduction, I wanted to make the point that diversity and inclusion is important when speaking about any aspect of diabetes, and that for us to be truly inclusive in a discussion about women and diabetes, we needed to hear from women who represent all corners of the diabetes world. I particularly referred to needing better representation from women in the LGBTQIA+ community. 

The other thing that we had wanted to make sure that we didn’t focus too much on diabetes and pregnancy, because so often that is the only easily information about women’s health and diabetes that can be easily found (and saying that, there does seem to be a bias towards women with type 1 diabetes). Of course, understanding and being aware of how diabetes can impact on pregnancy is important, but it is certainly not the only issue that women with diabetes want or need to know about. 

In fact, one of the discussion points was that for some women, pregnancy is not a topic they want discussed. There is the assumption that all women of childbearing age need information about having a healthy baby when that is not the truth. Contraception discussions do not necessarily equal an invitation for pre-pregnancy counselling, and there needs to be some sensitivity in how healthcare professionals in particular raise the topic, and rid themselves of the belief that all women want to have kids.   

There is so much more to talk about. So, so much more. 

We touched on how much our cycles can impact and influence glucose levels (and a very amusing tangent where we joked about how when we see monthly perfect glucose patterns, they clearly don’t belong to people who menstruate – or people who understand the absolute havoc hormones can wreak on CGM traces).

We spoke about birth control and how the OCP can also make a significant difference to glucose levels, yet many of us were not told about that. 

Of course, we spoke of menopause, but only briefly; briefly not because it’s not an important topic (or a super relevant topic), but because we just got caught up talking about other things (and perhaps my facilitating skills weren’t as tight as usual).

And we spoke about how cultural gender issues need to be shown and understood so that the experience of privileged white women with diabetes are not seen as the only experiences. 

For me, the central message that I heard time and time and time again was that topics about the very things that occupy a lot of the headspace of women with diabetes are simply not discussed with us. And there is little research to inform our decision making, or even to help us form the right questions to ask. At best, we are given some piss-weak explanation that points a finger at diabetes being to blame. At worst, we are dismissed. 

I do wonder when research and diabetes education will catch up. I know that there are some wonderful researchers doing some important work here, but we are so far from normalising discussions about women’s health and diabetes as part of our typical healthcare routines. We’re miles away from getting rid of the preconceived and outdated ideas about women’s sexual health. 

Beyond discussing different women’s health matters, we also spoke about just how these discussions fit in the diabetes community. This was a completely unplanned turn for the summit (it was not a topic on the agenda), but I’m glad we had it and I’m glad that I am writing about it. Because of the nature of women’s health, sex and diabetes, there is a lot of taboo, shame, fear, and vulnerability. I know that some of the rawest and most open I’ve been in my writing has been when I have been dealing with moments in my life that were so, so hard and I was so, so vulnerable. When I look back, I sometimes wonder if I was right to hit publish after writing, and perhaps I should have tucked away the paragraphs until I was feeling stronger. Or not published at all. While I have been told that my words have provided some comfort to others facing similar challenges, it left my gaping, open wounds very public and visible. 

After writing about miscarriages, I’ve been called selfish for wanting to have a child and potentially passing on diabetes to them. Writing about my fears of passing on diabetes to my child I’ve been told that perhaps I should have thought of that before I got pregnant. Speaking about body image concerns, I’ve been told to toughen up and stop being so shallow. I’ve seen and watched other women with diabetes experience the same thing, and I feel their pain as I watch them navigate the muddy, and sometimes distressing waters. 

We spoke about how women are treated in the diabetes community, particularly when we write about struggles and difficulties, and the words and terms that are thrown our way when we dare to share how we are feeling. The ‘angry woman’ trope that I’ve written about before has been directed to many others too. 

These discussions are real, and they are necessary. I am one of the loudest, most vocal supporters of peer support and have spoken about the value and importance of diabetes peer support and the online community on stages literally around the globe. Peer support saved me at times when I thought I was broken beyond repair. But it also can be a source of pain and bullying and nasty confrontations, and perhaps we need to have those discussions too so that when someone decides that they are ready to share and be especially vulnerable that they look out for themselves as much as looking out for the community. It’s all very well to want to share to connect and help with our own and others’ isolation but leaving ourselves exposed isn’t easy. 

One of the attendees last night reminded us that we could share with selected friends in the community, still allowing for that peer support but under the protection of a safe space. It’s interesting, because until maybe two years ago, I had never experienced how unsafe the community can be to individuals. I’d not felt that before. While I still share a lot, these days  I’m more inclined to turn to those trusted friends in the DOC who I know will be honest, open, but never nasty or judgemental. 

Online spaces are different for women than they are for men. The misogyny that is inbuilt to even those that we think are allies comes out, often surprising us, as throwaway comments about a woman’s age or appearance. It is ever present in the diabetes community too. I’ve rolled my eyes as some of the most vocal advocates who have loudly aligned themselves as being supporters of women, revert to type, with snide sexist commentary. I’ve seen people in the DOC referred to as ‘angry old women’ for daring to be furious, older than 25 and a woman! I roll my eyes now when I know someone has called me angry. I also know that they’ve just announced to everyone how threatened they are of women who dare to not go quietly, and how they expect us to remain in our place!

There was so much more that we could have spoken about last night. We didn’t touch on body image and disordered eating (and yes, I know that this is not the domain of women only, but this is about us!), we didn’t talk about sex all that much either, even though it is often highlighted as an issue that needs more coverage and information. Again, it’s not because they are not important topics; it was because the fluid conversation took a feminist turn that highlighted a highly biased social and healthcare environment where it is seen as perfectly fine that the needs, and concerns of fifty percent of the diabetes community are barely considered.

Perhaps if we had a more feminist approach to, and model of, healthcare, the misogyny that has meant the topics important to us have not been researched, and are not discussed, could be eliminated. And women with diabetes would not be feeling ignored.

Disclosure

I was invited by Ascensia to help plan the agenda for #DSMSWomen and facilitate the discussion. I have been paid an honorarium for my time. 

Another large diabetes scientific conference is happening and alongside it, another docday in the can. 

If you go back through the Diabetogenic archives, you’ll find a bucketload of posts about previous docday° events, including the very first one which was memorable for being in an overheated backroom of a café in Stockholm, the cinnamon buns served at said café, and Josephine, a diabetes advocate from Sweden stripping down to her underwear to show off her Anna PS gear. (If you’re looking for tops and jocks to snugly store insulin pumps, Anna PS is still the best place to go!)

It’s a far slicker event these days. Even before we went all virtual, the IRL events were held in cavernous convention centres alongside the actual conference. This was great for lots of reasons: it means that you can easily pop into docday° from the main program, and a variety of stakeholders started to come along. While docday° very much remains the domain of diabetes advocates and the work in the community, it was great to know that we were sharing our news with HCPs, researchers, industry and more. Plus, the temperature control was better. The biggest negative was that cinnamon buns were not as easy to find. 

Last night’s docday° was as memorable as ever, with a dynamic program of advocates from across the globe. A number of people wanted to address the issue of diabetes and stigma, and I introduced this topic with a quick overview of the Diabetes Australia National Diabetes Week Campaign, and one of the videos we made. From there, we heard Ken Tait and Michael Donohoe speak about the stigma experienced by people with type 2 diabetes, and Salih Hendriks and Dan Newman speak about how stigma impacts on open discussions about diabetes-related complications. Dan’s talk was one of the most powerful I’ve ever heard, and I will be thinking of his words for a long time. 

There was lots more in the two-hour event. Please do watch it!

I am an advisor to the #dedoc° voices program. I do not receive any payment for this role. 

I applied for and received a press pass to attend EASD 2021. 

Last night, when my Dexcom was in the middle of its two-hour warm up, I had a hypo. A nasty, horrible, come-out-of-nowhere, almost-passed-out, who-the-fuck-am-I hypo. You know the type.

‘That was a pretty bad low last night, wasn’t it?’ Aaron commented this morning while we were in the kitchen drinking coffee. After I I nodded he said, ‘I know, because you were doing that fast talking thing.’

That fast talking thing.’ It’s one of my weirder low symptoms. I speak very quickly at the best of times, so I this particular low symptom sends me turbo-charged!

So, today I’ve revisiting this post from 2016 which perfectly captured one of those fast talking lows. We were in New York, I was all over the shop and Aaron, the person who has had more front row seats to more hypos than either of us would care to remember, was his ever-patient self. The fast talking was about green apple flavour, because what else is there to talk about when scraping the bottom of glucose numbers while on a New York subway platform?

I still talk fast when I’m low. I still love green apple flavouring. And Aaron? He still listens to me as I blabber at breakneck speed through hypos. He still doesn’t like green apple Mentos. The weirdo.

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On our last full day in New York, we walked down some stairs to the subway. My phone started vibrating and beeping and I knew that I was heading low.

I hadn’t really managed to get the whole hot-weather-walking-a-lot thing sorted out on this trip. I dealt with insane Conference Hypo Syndrome from literally the second I stepped foot into the conference centre in New Orleans, and just managed by setting a lowered temp basal rate and drinking a lot of juice.

And then, we were on holidays and while I know diabetes is for life, not just for X-mas, I couldn’t be bothered ‘doing diabetes’ and being smart about making some changes and addressing the lows properly.

For the most part, I was right. I responded to the rapid fall warnings on my Dex and avoided any super-nasty lows.

But this day in the New York subway, I was already firmly in ‘Deal With Me Now’ hypo territory. I had a bottle of juice in my bag, but walked into a little kiosk on the platform to see what I could use instead. And there before me I saw these:

I squealed.

‘Oh my god. Babe. BABE. LOOK!’ I said to Aaron as I grabbed a couple of packs and started to open them before paying. I think he fished out a couple of dollars from his pocket to pay the guy who was watching me carefully. ‘I love these,’ I announced loudly. ‘Green apple Mentos! I LOVE these!’

Aaron corralled me back to the platform and we sat down waiting for our train and I started to munch my way through the pack.

Want one?’ I asked him, pushing the tube into his face. ‘No thanks. I don’t like green apple flavour.

This was a fact I knew well because every time I mention how much I love green apple flavour, he reminds me he doesn’t.

‘What? WHAT? Of course you do!’ I said. ‘It is the best flavour ever. EV-ER! Remember? It is everywhere in France. Remember, babe? Remember? And there was that time that I found green apple Mentos in Melbourne at a servo and got so excited that I bought, like, 40 tubes. Remember? Have one… Have one babe.’ 

‘No, I’m okay,’ Aaron said. He went back to reading something on his phone.

‘Babe. Do you remember that time at the servo? I told you, right? I was really low and I went in and saw them and got excited and was ranting and raving to the poor attendant about how excited I was and how I’d never seen them in Australia. Do you remember? The guy thought I was really weird because I couldn’t stop talking about how excited I was and how much I love green apple flavoured lollies. Do you remember?’

Aaron shut off his phone and turned to me. ‘I guess I’ll read this later,’ he said smiling.

I ignored him and continued. ‘So I told him how green apple flavour was EVERYWHERE in France, but not here in Australia and how you could get green apple gum and soft drinks and heaps of other stuff and how I love it. LOVE. IT! Remember how it is everywhere in France? Yeah? And then I asked him how many packs of Mentos they had and I dumped them all on the counter and bought them. I spent, like, sixty dollars on lollies. Green apple lollies. I was so excited and speaking really quickly. Like, super quickly. Almost ranting. Like the fast talked in Seinfeld. Remember Jackie the lawyer in Seinfeld? I was talking really, really fast. Like that.’

‘Kind of like now?’ Aaron asked.

‘Am I? Am I? I am… Aren’t I?’ I said. ‘Yeah – I guess. Maybe it’s the green apple. Do you think that’s what it is? Do you, babe? Could it be the green apple? I LOVE green apple flavour! I should have bought more. Will I go back?’

‘I think it could be because you are low. And I think maybe you should eat a few more of those Mentos instead of just speaking about them.’ Aaron said gently.

‘Do you want one? They are great! I love this flavour!’ I asked.

The train pulled into the station and we found a seat. I checked my iPhone and saw that I was no longer dropping. I took a deep breath and looked around the carriage.

‘I really like green apple flavouring,’ I murmured to Aaron. He reached over and took my hand.

‘I know. And you’re really funny sometimes when you are low.’

I rested my head on his shoulder and concentrated on my heart rate, which was slowing down. By the time we got off the train I was feeling fine. And happy. Because tucked away in my bag was a yet to be opened packet of green apple Mentos.

People with diabetes know that many times when we have a health concern it is dismissed with phrases such as ‘Oh, that’s more common in people with diabetes’ or ‘It’s part of living with diabetes’. Sometimes, that may be the case, but other times, it absolutely is not, and playing the diabetes card is like a get out of jail free card for HCPs to not do the investigations that they should to confirm diabetes is indeed responsible, and to eliminate anything else. Our concerns are ignored, and sometimes not believed. Not being believed is distressing in a particular way. 

It is fair to say that while diabetes has the ability to creep its way into all sorts of places it doesn’t belong, it is also fair to say that sometimes it’s not diabetes. 

I’ll say that again for the people in the back: SOMETIMES IT’S NOT DIABETES! 

Women – with and without diabetes – have also reported, (and reported and reported) stories of not being believed, or listened to, or properly treated by healthcare professionals when we’ve fronted up to visit the GP or other health professional to discuss something worrying us. Women with painful, heavy, uncomfortable periods are told that it’s just part of being a woman. A diagnosis of endometriosis is not treated as something especially serious because it is common, and we’re told it’s just part and parcel of life for some women. And women going through menopause and perimenopause, are told just to accept it, that it will pass… and it’s just part of being a woman.  

Put diabetes and women’s health together and there is a lot of dismissing, ignoring, diminishing, patronising, and belittling. 

It needs to stop, and we need to be believed. 

I am lucky that I haven’t experienced painful periods. To be honest, I barely even thought about periods until I was ready to try to get pregnant when I realised that my (up until then) good luck of only having a period 3 or 4 times a year wasn’t ideal for someone who needed to know when ovulation was occurring, and, to optimise the change of getting pregnancy, was occurring monthly. When I mentioned my irregular periods, the first thing I heard from most HCPs said was that it was because of diabetes. I wasn’t buying it. I’d started menstruating when I was thirteen. I had eleven years of sketchy periods before I was diagnosed with diabetes. And so, I asked for a referral to an OB/GYN and found one who was the sort of doctor who likes to solve puzzles rather than just ignore them.

He did a laparoscopy, a heap of other tests, and announced that I had PCOS. Not once did he suggest that my diabetes was to blame, but so, so many other HCPs did draw a line between the two. I do understand that there are links between type 2 diabetes and PCOS, and there is some research to suggest that there is a link between type 1 diabetes and PCOS, but thanks to an OB/GYN who wasn’t into making assumptions, I knew that there was more at play. 

When I was ready to conceive, a regular cycle was easily achieved with a bit of Clomid. Since I had my daughter, my periods have been like clockwork. The arrive with a tiny bit of cramping that barely registers, and me being annoyed that I need to think about if I have what I need in the bathroom cupboard/work drawer/handbag. But not much else. 

But I have friends who have such painful, uncomfortable, debilitating periods that have a really negative affect on their health and wellbeing each and every month. I know of people who miss days of school or work each cycle, who vomit at their period’s onset, and who cry in pain for days each and every month. These friends tell stories of how many HCPs simply shrugged their shoulders and said it was something they just needed to deal with, and perhaps some ibuprofen might help. They tell me that the severity of the pain is not believed. They are made to feel that bleeding through layers of pads, tampons and clothes shouldn’t concern them. 

When I have needed to push and push and push to get answers, or to be treated seriously in the first place, or to reject the ‘It’s diabetes’ reasoning, I have been labelled difficult or challenging. When refusing to accept the ‘It’s just a woman thing’, I’ve felt the same way. 

Dr Jen Gunter says it shouldn’t be an act of feminism to understand how our bodies work. In exactly the same way it shouldn’t be an act of defiance to demand answers. It also shouldn’t be an act of resilience. All too often, it is all these things. 

Artwork from diabetes advocate & artist, Jenna. Find this & other amazing artworks on her Instagram page: @TypeOneVibes.

I’m a huge fan of New Yorker cartoons, (clearly – they’re littered throughout this blog!), and the artists that make real life situations come to life using humour, satire and more than a little cynicism.

Sometimes I hoot out loud at the sheer brilliance of what I am seeing. Other times I smile wryly. This time I gasped in absolute shock and horror. And familiarity.

Click for details.

It’s from February 2016, and seems to have been frightfully prophetic for our COVID times. As ‘underlying conditions’ has become barely-concealed code for ‘half dead anyway’, artist, Frank Cotham seems to have had a futuristic glimpse into the 2021 minds of conservative politicians and commentators.

Stay strong, my friends with diabetes and other underlying conditions. You matter. We all do. And living longer absolutely is right for us.

Do your diabetes appointments take on an eerily familiar routine? When I was first diagnosed, each appointment would open with the words ‘Let me see your book’. My endo was referring to my BGL record, an oblong-shaped book that I was meant to diligently record my minimum of four daily BGL checks, what I ate, what I thought, who I’d prayed to, what TV shows I’d watched and how much I exercised. 

I did that for about the first two and a half months, I mean weeks, okay, days and after that the novelty wore off and I stopped.

I’m not ashamed to admit that I did that thing that pretty much every single person with diabetes does at one point or another – I made up stuff. I was especially creative, making sure I used different coloured pens and splotched coffee stains across some of the pages here and there, little blood speckles for proof of bleeding fingers, and, for a particularly authentic take, OJ, to reflect the made-up numbers that suggested I’d been having a few lows. 

I’d show those creative as fuck pages – honestly, they were works of art – when requested, roll my sleeve up for a BP cuff to be attached, and step on the scales for my weight to be scrutinised. Simply because I was told that was what these appointments should look like, and I knew no better. 

And then, I’d walk out of those appointments either frustrated, because I’d not talked about anything important to me; in tears, because I’d been told off because my A1c was out of range; furious, because I hated diabetes and simply wasn’t getting a chance to say that. And anxious, because looking at the number of kilograms I weighed has always made me feel anxious. 

The numbers in my book, on the BP machine or the scales meant nothing to me in terms of what was important in my diabetes life. They stressed me out, they made me feel sad and hopeless, and they reduced me to a bunch of metrics that did not in any way reflect the troubles I was having just trying to do diabetes. 

These days, not a single data point is shared or collected unless I say so. I choose when to get my A1c done; I choose when to share CGM data; I choose to get my BP done, something I choose to do at every appointment.

I choose to not step on the scales. 

I don’t know what I weigh. I might have a general idea, but it’s an estimation. I don’t weigh myself at home, and I don’t weigh myself at the doctor’s office. I think the last time I stepped on a set of scales was in January 2014 before I had cataract surgery and that was because the anaesthetist explained that it was needed to ensure the correct dose of sleepy drugs were given so I wouldn’t wake up mid scalpel in my eye.  Excellent motivator, Dr Sleep, excellent motivator. 

Last month, I tweeted that PWD do not need to step on the scales at diabetes appointments unless they want to, and that it was okay to ask for why they were being asked to do so.

There were comments about how refusing to be weighed (or refusing anything, for that matter) can be interpreted. I’ve seen that happen. Language matters, and there are labels attributed to people who don’t simply follow the instructions of their HCP. We could get called non-compliant for not compliantly stepping on the scales and compliantly being weighed and then compliantly dealing with the response from our healthcare professional and compliantly engaging in a discussion about it. Or it can be documented as ‘refusal to participate’ which makes us sound wilfully recalcitrant and disobedient. It’s what you’d expect to see on a school report card next to a student who doesn’t want to sing during choir practise or participate in groups sports. 

What surprised me (although perhaps it shouldn’t) was the number of people who replied to that tweet saying they didn’t realise they could say no. it seems that we have a long way to go before we truly find ourselves enjoying real person-centred care.

Being weighed comes with concerns for a lot of people, and people with diabetes often have layers of extra concerns thanks to the intermingling of diabetes and weight. Disordered eating behaviours and eating disorders are more common in people with diabetes. Weight is one of those things that determines just how ‘good’ we are being. For many of us, weight is inextricably linked with every single part of our diabetes existence. My story is that of many – I lost weight before diagnosis and people commented on it favourably, even though I was a healthy weight beforehand. This reinforced that reduced weight = good girl, and that was my introduction to living with diabetes. 

From there, it’s the reality of diabetes: insulin can, for some, mean weight gain, high glucose levels often result in weight loss, changes to therapy and different drugs affect our weight – it’s no wonder that many, many of us have very fraught feelings when it comes to weight and the condition we live with. Stepping on the scales brings that to the fore every three months (or however frequently we have a diabetes healthcare appointment). 

Is it always necessary, or is it more of a routine thing that has just become part and parcel of diabetes care? And are people routinely given the option to opt out, or is there the assumption that we’ll happily (compliantly!) jump on the scales and just deal with whatever we see on the read out and the ensuing conversation? And if we say no, will that be respected – and accepted – without question? Perhaps another positive outcome is that it could encourage dialogue about why we feel that way and start and exploration if there is something that can be done?

It shouldn’t be seen as an act of defiance to say no, especially when what we are saying no to comes with a whole host of different emotions – some of them quite negative. Actually, it doesn’t matter if there are negative connotations or not. We should not be forced to do something as part of our diabetes care that does not make sense to us or meet our needs. When we talk about centring us in our care, surely that means we decide, without fearing the response from our HCPs, what we want to do. Having a checklist of things we are expected to do is not centring us or providing us the way forward to get what we want. 

How do we go about making that happen?

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