You are currently browsing the category archive for the ‘Awareness’ category.
Over the last two days (or last two middles of the night if you’re perpetually in the wrong part of the world as it seems I am), I participated in the excellent first World Health Organisation Global Diabetes Compact Forum. (You can read the Compact which was launched earlier this year here.)
Once again, the WHO team had brought together stakeholders, including diabetes advocates, from across the world to talk about some critically important challenges facing people living with diabetes. These included access to insulin, research and innovation and prevention, health promotion and health literacy. The Forum was definitely not a ‘sit and be lectured to’ event. It was interactive, with everyone having the opportunity to participate and share their experiences and perspectives. The chat function was open and there was a constant stream of engaging, energetic discussion and sharing.
The final session was about prevention and in his introduction, James Elliot, who expertly moderated the event, laid the foundation for the discussion. As with the previous sessions, there were no pre-conceived ideas or narrow focus about the topic.
Prevention isn’t just about prevention of type 2 diabetes. There is a lot of work also going on looking at prevention of type 1 diabetes. And also, once living with diabetes, looking to do what we can to prevent diabetes-related complications.
When I spoke, the first thing I wanted to highlight was the problem I feel with the word prevention, and I revisited previous discussions in which I’ve been involved which highlight the struggle I feel with the word prevention. For too many people it is a word that offers a promise – a promise which guarantees that we can prevent aspects of diabetes that are often well beyond our control. I presented my case for instead focusing on how reducing risk is a far more accurate description of what efforts are truly about, a perspective that I have noticed is being used more and more.
The discussion pivoted to being about complications and associated stigma. Thankfully, this is not the start of the conversation about diabetes-related complications and the way people see them. When I wrote this piece back in 2013, I wrote about the way complications were presented to people with diabetes and how non-modifiable factors such as genetics, are rarely part of the conversation. There seemed to be a very one-dimensional presentation of diabetes-related complications: ‘take care’ of yourself, and you won’t get them.
With communication around complications starting to be included in the language matters movement, I could see that too many people had been told that over-simplistic tale.
It all got taken up a very significant notch when there was a concerted effort in the DOC to encourage dialogue about diabetes-related complications in a non-judgemental and safe way. Suddenly, we were seeing the hashtag #TalkAboutComplications accompany people’s stories, or questions others might have. This led to a real shift, as more and more people shared their experiences, with many saying that it was the first time they had seen others being so open about what was often considered a taboo topic. Starting to peel away the shame and secrecy of what can be a scary part of life with diabetes allowed many people to seek support from peers and help from health professionals.
The legacy of the #TalkAboutComplications idea is that is that there are far more conversations today about diabetes-related complications. There is also a plethora of blog posts, podcasts, journal articles and conference presentations about the topic. I know that there is still significant stigma that we need to chip away at, but actually being able to easily find places online where conversations about complications are normalised and being part of those conversations is contributing to reducing that stigma.
The session at the Global Diabetes Compact Forum was terrific because it tied together diabetes-related complications and stigma. With the theme of access this World Diabetes Day, perhaps we need to think about what that means when it comes to diabetes-related complications. While we absolutely do need to think about all factors at play when it comes to the development of complications, we also need to acknowledge that access is a factor when it comes to outcomes. Access to the right information, including information about risk reduction, access to insulin, access to glucose monitoring devices, access to complications screening, access to early diagnosis and treatment, access to peer support, access to stigma-free treatment, access to mental health support…all these have the very real potential to influence outcomes.
Gosh, there’s lots in the #DOC-iverse (#DOC-osphere?) about seeing diabetes, isn’t there? Yes, yes there is. Not sure about you, but I seem to be seeing a lot of bright, shiny, happy people (and a pop star or model or two) talking about diabetes, when usually they are pretty quiet about the whole diabetes thing. Which is fine. No one needs to spend their time advocating all about diabetes every minute of the day.
But I wonder if any of the marketing boffins who threw together their messages of inspiration bothered to check to see what the International Diabetes Federation are up to for World Diabetes Day on 14 November. Afterall, that’s the showstopper event of the month, isn’t it? Celebrating the birthday of the bloke who I give thanks to every day for keeping me alive.
A bit of history about World Diabetes Day to help understand that it’s not just about privileged folks with diabetes showing off their high-tech gadgets strapped to their impossibly beautiful bodies. (And yes, I know I sound like the Grinch who stole World Diabetes Day, but I think that understanding the foundation of this day is kind of important because that all seems to get swallowed up in PR spin.)
World Diabetes Day means something. In 2006, it became an official United Nations Day thanks to United Nations Resolution 61/225. At the time it was one of only two official UN health days. But even before that, World Diabetes Day had been going on for some time. It was in 1991 that the IDF, together with the World Health Organisation, created World Diabetes Day in response to growing concerns about diabetes.
Over the last thirty years, World Diabetes Day themes have aimed to be inclusive of people from around the globe, but perhaps there has been a (necessary) focus on how to improve diabetes outcomes for people in under-resourced countries. Maybe that’s why I find it a little galling when it appears that the day is about showing off your latest diabetes kit or shouting to the globe about how diabetes doesn’t stop people reaching their dreams. I love positivity and I’m often accused of being far too Pollyanna for my own good, but having a good look beyond our own privilege is important if we’re trying to get across a global idea of what is going on in the world of diabetes.
This year the theme is ‘Access to care: if not now, when?’. The World Diabetes Day website is full of resources that explain the theme. There are materials you can share to help explain just what access means to different people.
It all seems to be a little bit of a throwback to community initiatives of the past. The diabetes community has been the creators of some absolutely stellar campaigns – ideas that seem to have been founded in similar frustrations about which I’m smashing on my keyboard today. In 2014 there was a campaign that asked us to ‘Put the World back in WDD’ which was in response to there being a very Western focus on World Diabetes Day. Sometimes it feels that some things never change. The #Insulin4All hashtag that was first used to highlight how people in under-resourced countries struggle to access insulin is now most often linked with insulin pricing in the US.
Access means different things to different people, and the materials the IDF has put together consider this. Even if you live in a well-resourced country, with decent subsidised, tax-payer funded (never free!) healthcare, it’s likely that some part of your diabetes care is still difficult to access. It may not be insulin or diabetes supplies that are your access issue – it could be mental health support or different tech solutions.
Here in Australia, thanks to Medicare, the PBS and the NDSS, we have well-subsidised diabetes care. It’s not perfect, but it is certainly better than I hear from friends in other places around the world. But there definitely are still deficiencies in our care. Mental health care is limited – and almost impossible, it seems, to access. Only 50% of people with type 1 diabetes can access subsidised CGM and Flash GM through the NDSS. People in rural and remote areas of the country have far more difficulty accessing quality, regular diabetes care. The outcomes for Indigenous Australians with diabetes fall far behind. As always, people who are disadvantaged in some way are disproportionately affected, and face more difficulties accessing the care they need.
How you choose to celebrate (or not) this month and World Diabetes Day is entirely up to you. You may choose to ignore the ‘official’ theme of the day and focus more on other initiatives and once again, all perfectly okay. Just as YDMV, so may your diabetes advocacy.
But if you are interested in focusing more on access, have a look at the World Diabetes Day website and pledge your support for greater access to diabetes care. Read about the Resolution that was adopted by United Nations Member States that calls for urgent, coordinated global action on diabetes.
Look, I know. UN Resolutions don’t sound nearly as sexy as a six pack with a CGM plastered to it, but it is pretty cool that the WHO and the UN are talking diabetes.
And while celebrating the centenary of insulin, learn where insulin is not easy to come by, and why that is. Through volunteer work supporting both Life for a Child and Insulin for Life, I have learnt a lot about the challenges faced by people with diabetes in under-resourced countries. If you can, please consider making a donation this month to either, or both, charities.
And if looking to the community, it’s wonderful to know that there will be a docday° event on World Diabetes Day that is dedicated to the theme of access. You can learn more about that event here. It’s free to join, and will be live streamed on Facebook – you don’t even need to sign up.
But perhaps a final thought. How great would it be if those with really, massively high followings, (and followings not-only-in-the-diabetes-community), used this time to talk about making a real difference – a difference to people with diabetes who are struggling to access the basic drugs and supplies to actually live with the condition.
Sure, ‘seeing diabetes’ helps raise awareness, but as ever, I ask how much of that actually cuts through and gets out of the community that is already seeing diabetes every single minute of every single day?
I shared this photo to Twitter the other day:
I couldn’t care less if there are diet books on bookshelves at bookshops. Clearly there is a buck to be made with the latest fad diet, and so, diet scammers gonna scam and publishers gonna publish.
What I do care about is the framing that health is limited to weight loss and dieting.
Living with diabetes has the potential to completely screw up the way food, weight and wellbeing coexist. My own disordered thinking has come from a multitude of different sources. I know that even before diabetes I had some pretty messed up ideas about weight loss and my own weight, but once diagnosed all bets were off and that thinking went haywire! I know it didn’t help when, in the days before diagnosis as I was feeling as though I was slowly dying, someone effusively told me how amazing I looked after having lost some weight that I really didn’t ‘need’ to lose. And look at that! A little weight bias in there already as I talk about ‘not ‘needing’ to lose weight’.
I remember that afternoon very clearly. It was Easter Sunday and my whole family was at my grandmother’s house. I’d had a blood test the morning before because I’d gone to my GP with a list of symptoms that these days I know to be ‘The 4 Ts’. (In hindsight, why she didn’t just do a urine check or, capillary blood check, I don’t know.) I was feeling awful and scared. I knew something was wrong, and suspected it was diabetes.
But there I was, literally slumped on the floor against the heater (at my grandmother’s feet) because it was the only place I could feel any warmth at all. Sitting opposite me was a family member who felt the need to tell me how amazing I looked because I’d dropped a few kilos. I could barely see her across the room because my vision was blurry, but hey, someone told me I looked skinny. Wonderful!
That road to further screwing up my thought processes about weight and diabetes was pretty rocky and I was on it. I learnt that thing that we know, but we don’t talk about anywhere enough routinely, and that is that high glucose levels equal weight loss equals compliments about losing weight. (We don’t talk about it because there’s not enough research, but also because in the past a lot of HCPs have gatekept discussions about it because they think that by talking about insulin omission or reduction for weight loss will make people do it. Sure. And sex education for school-aged kids is a bad thing because by NOT talking about sex, teenagers don’t have sex. End sarcasm font.)
It has taken years of working with psychologists to undo that damage – and the damage that diabetes has piled on. I employed simple measures such as stopping stepping on scales and using that measure as a way to determine how ‘good’ I was being. As social media became a part of everyday life, I curated my feeds to ensure I was not bombarded with photos that showed a body type that generally is only achievable when genetics and privilege line up. I learnt to not focus on my own weight and certainly not on other people’s weight, never commenting if someone changed shape. I did all I could to reframe how I felt about different foods, because demonising foods is part of diabetes management.
I was determined to parent in a way that didn’t plant in my daughter’s head the sorts of seeds that had sewn and grown whole crops in my own. While a noble ambition, I realise I was pretty naïve. Sure, we absolutely never talk weight at home, we never have trashy magazines in the house celebrating celebrities’ weight loss or criticising their weight gain. I’ve never uttered the words ‘I feel fat’ in front of my daughter even when I hate absolutely everything I put on my body. Food is never good or bad, and there is no moral judgement associated with what people eat. But the external messaging is relentless and it’s impossible to shield that from anyone. All I could do is provide shelter from it at home and hope for the best.
But despite doing all I can to change my way of thinking and changing my own attitudes and behaviours, it takes a lot of work…and I find myself slipping back into habits and not especially healthy ways of thinking very easily.
Which brings me to my favourite bookshop over the weekend and standing there in front of the health section. I was looking for something to do with health communications, or rather, the way that we frame life with a chronic health condition like diabetes. I wondered if there was anything that spoke not about ‘how to live with a chronic health condition’ but rather ‘how to think with a chronic health condition’. I didn’t want to read more about what to do to fix my body; I wanted to find out how to help focus my mind and love my body. But there was nothing. Nothing at all.
Instead, there were shelves and shelves of books about losing weight, dieting, fasting, ‘cleansing’ (don’t get me started) and then more on fad diets.
When I tweeted the photo, one of my favourite people on Twitter, Dr Emma Beckett (you should follow her for fab fashion and fantastic, fun food facts), mentioned that it is a similar story in the ‘health food’ aisles of the supermarket, where there seems to be a focus on calorie restriction.
How has the idea of being healthy been hijacked by weight loss and diets? How has the idea that restricting our food, limiting nutrients, and shrinking our bodies equates health?
How did we get so screwed up at the notion that thin means healthy; that health has a certain look? Or that dieting means virtue? How is it that when we see diabetes represented that it so often comes down to being about weight loss and controlling what we eat, as if that will solve all the issues that have to do with living with a chronic condition that seeps into every single aspect of our lives?
It takes nothing for those disordered thoughts that are so fucking destructive, thoughts that I have spent so long trying to control and manage and change, to come out from under the covers and start to roar at me. Diabetes success and ‘healthy with diabetes’ seems to have a look and that look is thin. (It’s also white and young.)
Health will never just be about what someone weighs. And yet, we keep perpetuating that myth. I guess that steering away from the health section of bookstores is selfcare for me now. Because as it stands, it just sends me into a massive spin of stress and thinking in a way that is anything but healthy.
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.
___________________________________________
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.
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.
Diabetogenic 