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It’s International Women’s Day and while I like to celebrate the incredible women in my life every day, I’m not above using the occasion to showcase some of the womenfolk in diabetes who have such an impact on our community.
So here are just some women working in, with, or around diabetes. This obviously isn’t an exhaustive list. There are so many women I could have mentioned. Please use the comments section below to add anyone I may not have mentioned. These women here have come across my radar on one or many occasions in the last twelve months, which is why wanted to celebrate them here today. They all have one thing in common: they get stuff done. And they support other women.
Actually they have another thing in common. They’re a little bolshie and sassy. And I love that about all of them!
Kerri Sparling
I met Kerri in a creperie in New York back in 2011. Two weeks prior, we’d just missed each other at a diabetes conference in Dubai, but made up for our lousy timing when we realised that we would be in NY at the same time. As we greeted each other, I had a slightly weird moment of feeling as though a character in a book I had read over and over had come to life because in person she was the same disarming, open and hilarious person she is on the page (or rather, screen).
The impact Kerri’s work has had on women with diabetes is monumental. I can’t count the number of times that I have heard her name when women with diabetes have spoken about their engagement with the DOC. She is one of the first people I direct women to when they are looking for information about anything to do with diabetes.
Last month, Kerri announced that in May she will be updating her SixUntilMe blog for the last time. She is not disappearing from the diabetes world – let’s be clear about that. She’ll still be writing; she’ll still be here. I’m glad that she’ll still be around to share her powerful voice. And cat GIFs. Her cat GIF game is strong.
Karen Addington
JDRF-UK is blessed with Karen as their CEO. I’ve been fortunate to spend some time with Karen in the last twelve or so months and have loved getting to know her. I’m always impressed with her ability to graciously ensure diabetes is on the agenda, and keep conversations current and relevant. I also love that she knows the value of diabetes peer support and community and the voice of the person living with diabetes. More diabetes organisations could do with leaders like Karen!
Cherise Shockley
This whole post could have been about Cherise. She is a shining and guiding light and an example to so many of us. But today, I want to highlight her new podcast ‘Inspiration Exchange: Diabetes Moments’ that will highlight different people affected by diabetes. The idea is that it will feature people in the community and share their experiences.
Cherise is one of the hardest working people know. She shows up – again and again and again – backing that up with continuing to deliver support to anyone who needs it.
More about Cherise’s new podcast here.
Elizabeth Snouffer
Whilst I had heard of Elizabeth, I only really came to know her last year when she joined the organising committee for the LWD stream that I am leading. Elizabeth is the editor of the IDF publication Diabetes Voice, and a journalist and writer. She is also a vocal advocate for insulin access for people around the world.
I’ve really enjoyed reading Elizabeth’s writing recently, especially what she has written on diabetes distress and health professional engagement.
Follow Elizabeth on Twitter here.
Miss Diabetes
If you’re not following Miss Diabetes on Insta get on it now! It’s the brainchild of New Zealander, Janina, who has lived with type 1 diabetes for over 20 years. Her cartoons are clever, cute and cutting. I’ve found many familiar moments in her creations.
Jennifer Dyer
I always say that there needs to be more than diabetes as a connection. That certainly is the case with Dr Jennifer Dyer. Jen is a paediatric and adolescent endo and an entrepreneur. She is smart, vocal and open about all sorts of diabetes issues that are often considered taboo. At ATTD last year we had a frank discussion about diabetes and sexual health and I loved her matter-of-fact attitude.
I already would have thought she was pretty great, but it seems we share a love for New York, MAC lipsticks, Audrey Hepburn, oysters and Sophia Loren. I know that if I was diagnosed as a teenager, Jen would have been exactly the endo I would have wanted to see because she knows life is about so much more than diabetes.
Weronika Kowlaska
Weronika writes the Blue Sugar Cube blog, started the Connect1ons Campaign which showcases the advocacy efforts of people with diabetes from around the world, is a gifted designer and illustrator and spends a lot of her online attention as part of the #Insulin4All movement.
I recently caught up with Weronika in Brussels where I became almost dizzy hearing about all her different activities, which also include being involved in the International Diabetes Federation.
Check out Weronika on Insta here.
Sana Ajmal
Sana continues to elevate the cause of women with diabetes in her home country, Pakistan and share often heartbreaking stories of discrimination and stigma. She is a writer and speaker, and has joined me on the organising committee for the Living with Diabetes stream at this year’s Diabetes Congress.
Read more about Sana in an interview here.
Alecia Wesner
Guinea pig extraordinaire, Alecia puts her hand (and any other part of her body) up to participate in diabetes research at every opportunity. And then she gets on stage and talks about it to encourage people to donate. She is one of JDRF’s most visible speakers and is an absolute star.
Oh – and she also happens to be a talented artist who designs the most magical lighting, and you should check out her handmade Eye Candy range of jewellery .
Alecia’s Eye Candy can be found here.
Ashley Ng
I’m lucky to frequently catch up over coffee with Ashley to hear what she is up to, and she is always up to a lot! Ash has been a vocal advocate to reduce the stigma associated with diabetes. She set up a Facebook group for young adults with type 2 diabetes, and has made it a safe, friendly place for open discussion. And she is a co-founder of Beta-Change which brings together people with diabetes from around the globe. All this is on top of her real job where she is Dr Ash and a lectured in nutrition. She is busy. Very busy.
Find out about Beta Change here.
Melissa Lee
Diabetes technology can be bloody confusing, but Melissa Lee knows how to explain it so it makes sense to idiots like me. Melissa is the Director of Community Relations for Bigfoot Biomedical, charged with sharing the organisation’s vision and progress. She does it well.
Melissa is an active member of the diabetes online community and I always love the way her comments are clear and direct. Oh, and her D Parodies never fail to amaze.
This D Parody of ‘Seasons of Love’ is magical.
Kim Henshaw
I think of all the women on this list, Kim is the one I’ve known the longest. We were new mums together, and co-founded the #OzDOC weekly tweetchats. And we worked together for a number of years at Diabetes Victoria.
Here’s the thing about working for a diabetes organisation. It’s a tough gig sometimes to have diabetes in your professional as well as personal life. There are days where it can seem that everything is about diabetes. Here’s another thing about working for a diabetes organisation. You can’t make it about yourself, and Kim has always excelled at ensuring that she never has an agenda that is self-serving. These days, her work around families of kids with diabetes is making a difference to so many.
Follow Kim’s occasional tweets here.
Moira McCarthy
I’ve only met Moira once and that is, quite frankly, not good enough. Thankfully, through the magic of Facebook, I get to engage with her and see what she is up to. She is a journalist (writing about incredible travels) and also writes about diabetes.
Moira is also a remarkable fundraiser, having raised millions for JDRF. She does ridiculously demanding bike rides for the organisation, attracting donations from all over the world. (It’s hard to say no to Moira).
Read my favourite ever piece by Moira here.
Dana Lewis
There would be few people who are interested in diabetes technology who would not know Dana. I have had people actually say to me ‘Oh, you’ve met’ her? What’s she really like?’ such is her rockstar status. The answer to that question, by the way, is kind, generous, smart, emphatic and funny. She is who I thank daily for the whole idea of DIY hybrid-closed loop systems. She is also a kids’ book writer, researcher and (when not dealing with broken limbs) runs miles and miles. I’m yet to be convinced there is only one of her because she does so much, but I’ve only ever been in the room with one Dana Lewis at a time.
Daniela D’Onofrio
I have a group of Italian women I see at diabetes conferences in Europe. I adore them and love being welcomed into their crew. I once said to Aaron ‘I hung out with the Italian women again, and jeez – they are loud and bossy. And they don’t shut up.’ He just looked at me before muttering something under his breath that sounded a lot like ‘Welcome to my world,’ but I’m sure I misheard, because where would he know bossy, loud, talkative Italian women?
Anyway, Daniela may be loud and bossy and talk a lot, but she backs it up like you wouldn’t believe. She started Portale Diabete, an online network, after her brother received a kidney pancreas transplant. There are over 25,000 members of the Portale Diabetes Facebook group and the discussions are constant and current. Daniela added a new string to her bow last year when she decided that she’d try her hand at fundraising and naturally that has been a success.
Follow Portale Diabete on Facebook here (fluency in Italian – or Google translate – required).
Jane Speight
When Jane landed in Australia to be the Foundation Director of the ACBRD, there were very few HCPs talking about the behavioural side of diabetes. People with diabetes were talking about it, but that was really where the conversation started and ended.
Jane and her ACBRD team got straight to changing that, and today, she is a permanent fixture in the diabetes landscape both here and around the world. She has spearheaded the diabetes and #LanguageMatters movement in Australia and globally and is a fierce advocate for people with diabetes. How lucky we are!
As well as collaborating with her on a number of projects (where she is always so gracious in the way I bring down the overall tone of any discussion), I also get to call her a friend. She is my constant conference and doughnut-eating companion, and makes the overwhelming and frantic nature of conferences somewhat bearable.
Georgie Peters
Georgie put all right in the world by returning from her year in Paris to take up a job teaching French in the next suburb to where I live. Thank goodness, because our late night chats could go on forever! It’s much easier being in the same time zone (and side of the city)!
I know I’ve written about her a number of times, but Georgie’s work in diabetes, eating disorders and body image with Body-Posi-Betes continues to push boundaries. I’m not sorry for sharing again.
Follow Body-Posi-Betes on Insta here.
Stacey Sims
Stacey runs the award winning podcast Diabetes Connections which features prominent diabetes advocates from around the world. Stacey’s son has diabetes and she created the podcast to help reduce the isolation that many people with diabetes face.
Check out (and listen to) Diabetes Connections here.
As I said earlier, this is not an complete list. There are so many other women who also do amazing things in the diabetes space. This list just happens to be some of the women whose work I’ve seen and loved over the last twelve months. And the other thing is that I have seen firsthand how they have supported and lifted up other women. That doesn’t mean that we always need to agree or that we all need to be singing from the same hymn sheet. But it means that we look out for each other, we promote each other, we cheer each other on. These women all do that in spades, and that is one of the most important things to me.
I never thought I’d be one to think about back-up plans the way I do now. A few years ago, I remember being extraordinarily proud of myself as I wrote this post about my diabetes spares bag. And then a couple of years ago, I thought I was remarkable and quite brilliant at being able to easily manage when I got to work and realised my insulin pump hadn’t made it with me. I thought I had every contingency sorted and was fabulously good at diabetes. Give me a medal, please.
But in the last six months or so, I’ve come to see I’m not quite as prepared as I thought. I probably should point the finger right now at David ‘Bionic Wookiee’ Burren for this. He has highlighted holes in what I thought was a well-planned strategy a number of times (‘What’s your RileyLink Bluetooth address, Renza? You don’t know? You should.’), shaming me into wanting to do better, and really making me question all my life choices at the same time.
Back-up planning has been covered in both the Australian and European Social Media Summits hosted by Ascensia (disclosure at the end of this post) and it is interesting to see that the level of organisation and preparation varies so much in those of us living with diabetes.
Some people have thought out every possible contingency and have a plan for each one. Others have a fixed idea about what might go wrong and have made accommodations for those (that’s me). And others figure that it will all work out and the diabetes gods will sort it out.
I guess that personality type comes into how well-equipped we all may be. Some of us have a far more lackadaisical approach to planning for the apocalypse than others. But I do agree that it never hurts to be prepared or to consider things that may never have entered your mind before.
So here are some things that I have learnt in recent times that have completely changed the way that I think about my back-up planning.
It’s not just about kit (1). It’s all very well to have back up for what happens if (for example) your pump dies, but if that means returning to MDI until a replacement can be delivered, actually knowing how to do MDI is important. (Bless my endo who always asks if I need any long acting insulin ‘just in case’. She gave me some in-date long acting insulin and we had a discussion about what doses would look like after I proclaimed ‘It’s been 18 years since I gave myself a dose of long acting insulin. And it was Protophane. I have no idea what I am doing.’Lovely endo didn’t even roll her eyes at me when she walked me through exactly what I’d need to do to ensure my basal dose was right and the timing of the injections.)
It’s not just about kit (2). Look – my back up plan to my pump dying is another pump. I have a couple in the diabetes spares cupboard and always travel with one. But I don’t carry one around with me on a day-to-day basis. If I was a couple of hours from home and my pump died, I’d need to know what to do in the meantime. Again – it’s been 18 years since I was on MDI, but I always have a spare syringe and insulin with me so I can bolus until I get hooked up again to a working pump. My injection technique is scratchy – very scratchy, but in a pinch, I can manage it. There’s nothing wrong with asking for some re-education on something for which you may be a little out of practise.
Apparently my long-held belief that the DOC is my back-up plan is not actually adequate, because who is going to be able to provide me with insulin/pump consumables/spare pump/battery/RileyLink at 3am when things like to go wrong. (This is despite the success of the whole Pumpless in Vienna story.)
Equally, having a neighbour with type 1 diabetes two doors down is great when I need a Dexcom sensor at breakfast time. But it would probably stretch and test the neighbourly spirit if I woke her and her family in the middle of the night because I desperately wanted my loop to turn back to green and needed a sensor to do that.
I need a back-up of EVERYTHING I use if I want to be able to seamlessly manage any issue that comes up. With Loop that means a spare Loopable pump, a spare Riley Link, a spare G5 transmitter as well as all the necessary consumables. That takes expense as well as organisation.
CABLES!! They need to be part of my back up plan. I was at a conference last year somewhere (can’t remember where) and remembered as I was about to sleep that I’d forgotten the charger to my RileyLink. And just last month didn’t charge it overnight, meaning that my Loop turned red while I was at work and I was unable to do anything until I got home. Carrying the right charging equipment for all devices is important.
But! If I don’t have all these things, I need to ensure that I have a suitable, easy and fully ready-to-go option that will get me through until I can assemble all required to return to normal service.
When your back up plan becomes someone else’s back up plan, you need to do something about it. Case in point: at the DOCDAY event at ATTD, a friend leaned across the table and asked me if I had a spare battery for her Loopable pump. Of course I did, because there is always at least one in my spares bag. I handed it to her and made a mental note to pick up some more AAA batteries next time I passed a convenience store. Of course, I forgot all about it until Loop started complaining and that the battery was running low. Down to 4% battery and starting to feel a little nervous, I found a tiny little store in a backstreet in Brussels, crossing my fingers as I walked in that there would be a stash somewhere of what I needed. There was and I changed the battery just as my Loop app was showing 0% battery.
Beating ourselves up about our perceived or real lack of planning is unnecessary. As Sophie, one of the participants at #ATTDDSMS, said: ‘Life gets in the way.’ And it does. I challenge anyone not living with diabetes to do their normal life, live with diabetes and not only think about all the ‘just-in-case’ scenarios, but also prepare for each and every one of them.
But mostly, what I have come to see is that the point of a back-up plan is for it to be smooth and simple, with as little disruption to our day as possible. A plan that requires a cast of thousands, hours of travel, is insanely complex and relies on a number of external factors that are potentially beyond our control is not really going to make executing our plan all that easy, or give us peace of mind. And that’s a big part of what this is all about – feeling confident that we can manage whatever gets thrown at us.
That is, after all, the nature of this condition we live with.
DISLCOSURE
I attended the ATTD conference in Berlin. My (economy) airfare and part of my accommodation was covered by DOCLab (I attended an advisory group meeting for DOCLab), and other nights’ accommodation was covered by Roche Global (I attended the Roche Blogger MeetUp). While my travel and accommodation costs have been covered, my words remain all my own and I have not been asked by DOCLab or Roche Global to write about my attendance at their events or any other aspect of the conference.
I was invited by Ascensia to co-chair the Diabetes Social Media Summit at ATTD (#ATTDDSMS). I did not receive any payment or in-kind support from them for accepting their invitation. I have co-written a piece for the blog, however this was not edited (apart from inevitable jet-lag-induced typos) and all words are those of mine and the piece’s co-author. You can read that piece here.
My third ATTD, and as soon as I started reading through the program, flagging the sessions I planned to attend and the technology I was keen to get my hands on and learn more about, a familiar feeling started to settle over me. It was there the first time I attended the conference and again last year.
And that feeling is that this conference, more than any other, reminds me just how unlevel the diabetes landscape is. With the shiniest of the shiny and newest of new technology and the most impressive treatment options available to people with diabetes on show, the vast gap between the haves and have nots is stark.
I was not the only person to acknowledge this. My first full day in Berlin saw me in an advisory committee meeting with diabetes advocates from across Europe, and when asked about the most pressing issues in diabetes, access was at the top of the list for every single one of us. Most (if not all?) of us in that room live in places with outstanding funding and reimbursement programs for diabetes drugs, technology and education – having to go without or ration insulin isn’t something we have ever needed to consider. Even those of us self-funding CGM are in a position of extreme advantage to be able to cover the significant out of pocket expense. But we all know that for millions of people across the world, this is not the case.
And then, later in the week at the Ascensia Diabetes Social Media Summit, another issue that came up again and again was choice. Choice refers to range of factors in diabetes. Choice of the type of technology we use, including the different brands; choice of the healthcare setting we feel best suits our brand of diabetes; choice of the specific healthcare professionals we see. It is also the freedom to be comfortable with our choice of technology, not feeling we need to conform to what others believe is the right thing.
But just how real is the whole idea of choice in diabetes? And when it comes to technology, how much of the decision about what we are using and how we are managing our diabetes is truly our own?
When access to basic education and treatments is severely limited, there is rarely any choice at all. In some places, a diabetes diagnosis is life and death, and surely in those cases all that people are choosing is life. How they manage that is probably not contemplated at all. In countries where diabetes does actually equal a death sentence, no one is debating whether TIR and A1c is how they would like to track their diabetes management.
But we don’t need to look to countries where outcomes are still so desperate to see lack of choice. Just this week, a very distressed mother of a young child with diabetes called me because they had just been told they were not permitted to use the pump they had chosen after careful deliberation and research.
This isn’t uncommon. Diabetes clinics across Australia make it difficult for PWD to be able to use the technology we have decided is the best choice for us. Sometimes that means not being able to use the specific technology we want (i.e. refusing to sign the necessary paperwork for a pump), or it could mean not being given the right to choose the brand of device we prefer.
At ATTD, I frequently heard about how healthcare is being transformed, and that may be true for those of us not disadvantaged by the country where we live and are trying to access care. We should celebrate the advances being made and the better outcomes so many of us have seen. But at the same time, we need to find a way to not get so far ahead of ourselves that we leave the most vulnerable further and further behind.
Click for original tweet.
I have been interested in discussions about time in range (TIR) for some time now. It has become a key way that I assess just how I am tracking with Loop and, as I wrote earlier this year, really the only measure I’m interested in. I like it because it can give me real time information about how I am tracking. It shows that when I am at a conference and not eating properly, but doing more activity than I normally would, my TIR is going to be less than if I was at home in a regular routine. It also shows what happens when I’m not Looping for ten hours (thanks to a variety of factors) my TIR plummets!
At ATTD this year, there was a symposium dedicated to the topic and from the standing-room-only crowding of the hall, it’s clear that a lot of others are interested too. In the few presentations I attended about the Medtronic 670G, TIR was frequently referred to (in one study there was a slight increase in TIR after PWD had been using the device for 8 months, although significantly lower than what people using DIYAPS are reporting.)
Just as I did while live tweeting the session, I have to address the issue of access to the technology. TIR is all very well, but it takes tools, and those tools are prohibitively expensive. Some places have no subsidies available for CGM or Flash, others have limited reimbursement programs. And, of course, there are places around the world where accessing glucose strips is a near impossibility.
TIR is a measure for a very, very privileged few, and as much as it’s held up as the future of diabetes, it is simply incorrect and misleading to suggest even for a moment that most people with diabetes have this data at their fingertips. (They barely have finger prick data at their fingertips.)
But, this is a conferences about the latest in technologies and treatments, so let’s talk time in range…
Dr Irl Hirsch is an MD from University of Washington, Seattle. His session as listed in the program was: ‘Time in Range vs. HbA1c: Are our patients ready to change?’, but he changed it to a far more suitable ‘Time in Range vs. HbA1c: Are our patients and health-care colleagues ready to change?’
Irl’s short talk was an absolute cracker and started by exploring what we already know – A1c is flawed. We’ve known this for years, but it’s taken having easy access to CGM data to truly appreciate just how flawed. The two points he raised to back this up were A1c levels can’t be compared between two people (and yet that happens all the time!); each A1c comprises a wide median glucose range. In other words, A1c sucks (they were his words, not mine!).
And then the talk got fun as the focus shifted to just how ready different groups were to shift from a focus on A1c to TIR. The three groups were: people with diabetes (and their families), endocrinologists and non-endocrinologists. Irl presented the results from a survey of diabetes HCPs asking their thoughts on the readiness of those three groups to embrace TIR. Here are the results:
The HCPs surveyed all believe that PWD are by far the most ready to change from A1c to TIR. At the same time they believed that no non-endo HCPs were ready. We really have a problem.
The survey participants offered a lot more than just their assessment of the readiness for this shift. They provided extra comments about some of the barriers to the change. This is how some of the HCPs (all working in diabetes) assessed the inclination for PWD to move to TIR:
But perhaps the most unsettling was what they thought about non-endocrinologists willingness to start to talk TIR. (I think that they were mostly referring to primary care physicians.)
As the list was read out, and the audience responded accordingly, my confidence level about how likely it was that TIR would start to become the norm shrank away. This is despite the way that many PWD have already adopted the measure and use it daily.
In the online groups where I spend a lot of time playing, it is clear that we are already very comfortable and committed to talking TIR. People frequently post their Dexcom Clarity data showing the super-nifty image of how much time they have spent in and out of their self-determined range. This is the language we speak.
But despite my unease about just how quickly the shift will happen, it has definitely begun. The International Consensus on TIR was presented which included targets for people with type 1, type 2 and for women during pregnancy. Plus there was evidence presented that showed TIR can predict the likelihood of diabetes-related complications. With all this, and the demand from PWD, we will be hearing about this more and more in coming years.
Looking for more? This piece by Irl Hirsh, Jennifer Sherr and Korey Hood was just published in Diabetes Care is a really interesting commentary on the issue.
DISLCOSURE
I attended the ATTD conference in Berlin. My (economy) airfare and part of my accommodation was covered by DOCLab (I attended an advisory group meeting for DOCLab), and other nights’ accommodation was covered by Roche Global (I attended the Roche Blogger MeetUp). While my travel and accommodation costs have been covered, my words remain all my own and I have not been asked by DOCLab or Roche Global to write about my attendance at their events or any other aspect of the conference.
These days, it’s impossible to be at a diabetes conference and not have at least one conversation somewhere about language. Sometimes there are sessions dedicated to the topic on the program, but that wasn’t the case at ATTD a couple of weeks ago – a conference solely devoted to advancements in diabetes technology and treatments.
But despite there not being a session about language, it was still a hot topic. My eagle eye was trained when walking through the exhibition centre for examples where diabetes is misrepresented or the language used stigmatises people living with the condition. And in sessions, I immediately heard terms that suggested that we are misbehaving because the results of treatments aren’t living up to their promise. (A new one: I heard the statement ‘People with diabetes on <therapy> were not performing as expected’ which now makes me think that we are being trained, watched and judged by pageant mums/moms.)
At the Ascensia Diabetes Social Media Summit (more on that another day), there was a discussion about language and diabetes-related complications. This event was a follow on from the one we had at the Australia Diabetes Social Media Summit, and took the initial conversations and expanded it with a new group of PWDs.
Once again, as the discussion unfolded, it was clear to see that the PWD in the room all had experiences where the language they were faced with had impacted negatively and positively. One person commented that early on in their diagnosis, a health professional had addressed diabetes-related complications by saying ‘If you are diagnosed with a diabetes-related complication it will not have been your fault.’ What an empowering way to begin the discussion about complications, care and risk reduction!
I’ve been talking about language for a number of years. Some may call me a one trick pony and, honestly, that’s fine. My appetite for the subject matter has not diminished one bit despite more than a decade of speaking and writing about why language is so important and holds such power.
Language is not a one dimensional issue. Additionally it does not necessarily have a ‘right way’ to do it – especially when looking at it from the perspective of the person living with diabetes. The work I have been involved in has never been about policing the words used by people with diabetes, but rather how words used by others affect us.
It’s why the piece Grumps and I wrote for BMJ was important – it targeted healthcare professionals, explaining to them why the words and language used around diabetes-related complications needs to not make us feel hopeless. Because that is what can happen and when we feel that way, it is all too easy for diabetes to seem just too big and too hard and too much.
I have frequently written about how diabetes can become so overwhelming, that it can leave us unable to attend to even the most basic and mundane of diabetes management tasks. I myself have been paralysed by the detail and demands of this health condition. I understand that there are times when a conversation about language is not possible, because, quite frankly, there is a lot more to deal with. I know that there have been moments when even though I can hear judgement and blame in the words being directed at me, all I want to do is find a way out of what feels like a hole. I’ve heard others say that they have felt harshly treated by HCPs, but simply didn’t have the capacity to try to deal with that because there were other things higher up on the list.
And I am sure that there are people who simply wouldn’t even know where to begin if the words and language being directed at them were disempowering and negative.
But that is exactly why language matters. It is for the people in those situations – for me when I was in that situation – that we need to get the way we communicate about diabetes right.
I am so sick of people trying to delegitimise the language discussion, or, even worse, reduce it to something that is insignificant. It frustrates me when the discussion returns again and again and again to the diabetic/PWD debate. As I said at the Ascenisa event at ATTD when we were discussing the annoying way some try to redirect meaningful discussion back to this single issue: ‘You can call me Blossom for all I care, language is about far more than this.’
And I think that while it is critical that we acknowledge that sometimes the language issue isn’t going to be a priority for some (by choice or otherwise), it seems unfair – and a little counter-intuitive – to diminish its importance, or criticise those of us trying to keep it on the agenda and actually do something about it.
(Click for original tweet)
DISLCOSURE
I attended the ATTD conference in Berlin. My (economy) airfare and part of my accommodation was covered by DOCLab (I attended an advisory group meeting for DOCLab), and other nights’ accommodation was covered by Roche Global (I attended the Roche Blogger MeetUp). While my travel and accommodation costs have been covered, my words remain all my own and I have not been asked by DOCLab or Roche Global to write about my attendance at their events or any other aspect of the conference.
Let me tell you what is worse than jet lag. Jet lag combined with food poisoning. These are the two extra circles of hell Dante forgot about.
While I am recovering and trying to get my body to accept coffee again, here are some photos from last week’s ATTD conference which was in equal measure amazing, overwhelming, frustrating, intimidating, brilliant and exhausting. I’ll explain more in coming posts, but for now, enjoy the images.
How to deal with jet lag when arriving in Europe #1: night time walk to major tourist site and be amazed.
How to deal with jet lag when arriving in Europe #2: find (half) decent coffee.
How to deal with jet lag when arriving in Europe #2.1: drink all the coffee.
And then drink some more.
#docday is always a highlight. Little dogs called Jamaica make it even better. (Jamaica on the left; Bastian on the right.)
Hello Solo… New pumps headed our way.
MySugr is ALWAYS on message.
Flavour of the conference #1: DIYAPS
Flavour of the conference #2: Time in Range
Vegetables. I craved them.
Because there were so, so, so many dense carbs!
Not that I was complaining. (Especially when mini doughnuts came in Diabetogenic colours!)
Oh – did I say that #SpareARose was mentioned? A lot?
Such as at #docday. (Grumps looking especially grumpy because I’d just announced #SpareAFrown.)
And then? Then there was the smile-a-thon, as we smashed through target after target.
Next week, I’ll go into detail about some of the different sessions, highlights and satellite events I attended. It was a frantic few days – so worthwhile in every possible way. And as always at these conferences, finding those who live diabetes – themselves or with a loved one – provided the necessary grounding throughout the conference. This year, that support was even more pronounced with every single person who was asked to step up to promote #SpareARose doing so in spades. This is all the community. That is what it is all about…
DISLCOSURE
I attended the ATTD conference in Berlin. My (economy) airfare and part of my accommodation was covered by DOCLab (I attended an advisory group meeting for DOCLab), and other nights’ accommodation was covered by Roche Global (I attended the Roche Blogger MeetUp). While my travel and accommodation costs have been covered, my words remain all my own and I have not been asked by DOCLab or Roche Global to write about my attendance at their events or any other aspect of the conference.
Queen
Over the weekend, my mum and I took ourselves to see Nigella Lawson in conversation with Gary Mehigan. We were sitting in the first few rows which meant that we would have been within spitting distance of the Domestic Goddess if she were the spitting type. She is not.
Anyone who knows me would be aware that I have a massive crush on Nigella. I love everything about her and, truth be told, I want to be her, or be best friends with her. It’s tragic, but I’m owning it. I fell in love with her because of the way she talks about food with such abandon and passion. I completely understand getting excited at a farmers’ market when it’s suddenly cherry season, or when beautiful fresh asparagus spears are readily available in the supermarket at the start of spring. I get the idea of swooning at the smell and delightful crunch of the crust of a freshly-baked loaf of sourdough, and the desire to immediately slather it in slabs of salted butter.
Her recipe books on the shelf in our kitchen are well used, dog-eared and splattered with whatever ingredients a recipe calls for – the sign of a book that is frequently used and much loved. Her recipes are simple, always turn out as she promises and inevitably taste delicious. Plus, the little blurb she writes to introduce each recipe is always so eloquent and evocative that I can almost taste what I am about to create.
In recent years, I have really come to appreciate that Nigella has stuck to her guns as a food writer and cook, and not swayed into the world of wellness or pseudo-science dietetics. It would be very easy for her to have done that – she would make a killing! After all, who wouldn’t follow – and buy – everything she said if there was a promise of becoming just like Nigella?! She has remained honest to simply cooking food that is unpretentious, delicious and laden with all the things that make food taste good.
On Saturday night, Nigella’s commitment to enjoying food and seeing it as something to be celebrated was clear. She spoke about how food can trigger memories and be the thing that brings family and friends together. She told stories of family recipes and reminisced about where they came from. She spoke of her love of wooden spoons and the stories they can tell.
When asked about introducing a wide-variety of foods to kids she didn’t shame people into insisting they do anything other than do what works for them and their family. She didn’t suggest giving babies bone broth, or telling us that if our children were not eating foie gras and oysters au natural by their first birthday, we were failing them.
Someone asked an innocent enough question about what foods she likes to sneak as a midnight snack (referencing the little clip that ended as number of her TV episodes), and her response was that she doesn’t sneak anything. Food isn’t something that she believes we should feel guilty about and sneaking implies guiltily hiding away what we are doing.
Nigella knows her place is in the kitchen (because that is where she wants to be) and not in the health food aisles of the supermarket, and this is a pleasant and welcome change from the direction that so many others working in food have taken. I am so sick of celebrity cooks and chefs thinking that they are quasi-dietitians and have the right or expertise to tell us what to eat – or what not to eat.
And even more so, I am beyond over Instagram ‘influencers’ and wellness charlatans using words that make food something that sends us to hour-long confessions with the food gods.
Nigella specifically mentioned the term ‘clean food’ and why she doesn’t like it and I may have cheered along. It doesn’t surprise me that someone with as much of an affection for words as Nigella would take issue with language being used to shame the very thing she loves. I was reminded of this post I wrote back in 2014 the other day as I walked by a café near work claiming to serve ‘honest food’. I’ve been perplexed since I saw it and wondering what the hell dishonest food is.
So many people with diabetes have a fraught relationship with food. For some, it is a battle and involves hiding what they are eating, or lying about it. Having to consider and count carbs or fat can give us a distorted view of what we are eating. Our weight is scrutinised, our diets analysed. We are told to restrict certain things. Eating disorders and disordered eating are common and yet so under-researched and not understood.
So, hearing someone speak about food for what it is – a delight, something to be enjoyed, a pleasure, an excuse to spend time with loved ones, a way to nourish our bodies and souls – can put back some perspective. That’s what we got when Nigella spoke.
Before seeing her on Saturday night, I thought it wasn’t possible to love her any more that I already did. Turns out I was wrong. Because as long as she continues to celebrate food and rejoice in it, I will continue to be a groupie.
Last week, the BMJ published a piece I wrote with the Grumpy Pumper. It was part of their ‘What Your Patient is Thinking’ series which includes stories from people sharing their experiences of living with a variety of health conditions, or using health services.
We wrote about the intersection between language and diabetes-related complications and why language matters so much any time this topic is raised. This is our latest piece on the issue (read the PLAID Journal article here, and something we wrote for diaTribe here). We may appear to be one trick ponies, but it seems the appetite for this issue has not in any way diminished – which is good, because there’s lots more to come! (We’re not one trick ponies – I for one can talk for hours about why the fax machine should be made extinct in healthcare.)
It’s been fascinating – and a little overwhelming – to read the responses to the article after it was shared on a variety of social media platforms at the end of last week, and then again over the weekend. It’s also been heartbreaking when people have told stories about how HCPs have spoken about diabetes-related complications in ways that have had negative effects.
It’s refreshing to see many HCPs (including those from outside the diabetes world) sharing and commenting on the article. Much of what we have written is applicable beyond diabetes. It doesn’t matter what health condition someone is diagnosed with; everyone wants to be treated with kindness and compassion and to not be blamed or shamed.
A couple of HCPs have said that after they read the article, they will now consider changing the way the speak. I love this piece from a CDE in the US who said that she honestly thought the words she was using when discussing diabetes-related complications were reassuring until she read our perspective, and now understands that there are better ways to frame the conversation. We only hope that this will lead to PWD feeling less judged and more supported, and not afraid to talk about what is still a taboo topic for so many.
The diabetes and language landscape is broad. I know that there are many who roll their eyes and say that actually, language doesn’t matter, and perhaps we should be focusing on more pressing issues, but I wonder if they are perhaps focussing on issues that they don’t think are really important.
But there is a lot more to this issue than, for example, the debate between being called ‘a person with diabetes’ or ‘diabetic’ – or if it even matters. Regardless of what the specific issue is, we are hoping is that people understand that words really do matter; they have far-reaching consequences; they determine how people feel about their diabetes; and that the right words have the potential to make people feel better equipped to manage their diabetes as best they possibly can.
Please read the BMJ article – it is freely accessibly – and share it with your networks. If you have diabetes, take a copy to your next HCP appointment and leave it for them to read. The way that we make real, sustainable change is to keep pressing a point, and explain why it is important. Hopefully this piece has gone some way to doing that.
The illustration that was commissioned for the print version of the article. Artist Rose Lloyd did such a great job of getting across the messages in the article!
When we find something in diabetes that works for us, we can become a little evangelical. In the past, I’ve been guilty of this.
I have really tried to tone it down; I know that just because something works for me doesn’t mean it will work for others. But even more than that, it’s none of my business how someone chooses to manage their diabetes. And none of anyone else’s how I choose to manage mine.
So, I’m revisiting this little post from last year as a reminder that we are lucky to have choices. And to not shove ours down others’ throats.
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Pumps. Pens. Syringes.
Patch pump. Pod.
Share your data. Don’t share your data.
Blood glucose monitors. Continuous glucose monitors. Flash glucose monitors.
Low carb. High carb. Low(er) carb. No carb. ALL the carbs.
Private diabetes team. Public clinic.
#WeAreNotWaiting. #WeAreWaiting.
Apps for recording data. Scribbling down numbers on the back of an envelope. Making up numbers as you go along.
Online peer support. Face to face peer support. No peer support.
How fortunate we are to have choices – to have choices we can make for ourselves for our own brand of diabetes.
I’m feeling a little burnt out at the moment by the zealots online who think it’s their way or the highway. Do what works for you and share it, by all means. But attacking someone else for doing something different is just being a dick. Don’t be a dick. There’s really no need.
I went to the endo the other day armed with questions and issues I wanted to discuss. I’d found all random notes I’d typed on my phone and sticky notes I’d stuck around my office and cobbled together a list of things to work through.
And at the end of the appointment, there was a tick against every single one of them. (Except for the one about a new travel letter. I haven’t bothered travelling with a letter for some time now because I never needed it, but the last couple of times I’ve gone through security in the international terminal in Melbourne, I’ve been given some grief about refusing to walk through the full body scanner.)
I asked about other drugs that I could take to augment my current diabetes treatment. I know that others with type 1 have added Metformin or SGLT2s to their drug cocktail and wondered if I should be considering something else.
I asked about new drugs coming, how I will use faster insulins once they finally bloody hit our PBS shores and talked about protective measures I could take to reduce the risks of every single thing that diabetes likes to throw in our direction.
I realised half way through the appointment what I was doing and it struck me all at once why I was doing it. It was about feeling in that diabetes rut – not in terms of general ‘over it burnout’, but a treatment rut. It was about me wanting more. What else can I do? What else can I take? What else should I think about? What else? What else? What else?
Loop is continuing to do doing its thing. It keeps me and my diabetes ticking along with minimal effort and generally decent lines on my CGM.
But because I am an idiot and obviously have D-FOMO, apparently, it’s not enough. I turn into Chester, that annoying little puppy in the Warner Bros ‘Chester and Spike’ cartoons, bouncing around ideas and thoughts and different drugs and treatments.
When you co-exist with diabetes, the very definition of ‘lather, rinse, repeat’, it’s easy to get complacent. And from there, it’s just a hop, skip and a jump to being in a rut. Is it any wonder that we get bored, disinterested and downright over the whole bloody thing? Or that to try to counter that boredom, we want to try anything and everything; whatever we can to keep a little bit of interest in what we are doing. We see things new and shiny and flashy and want it – not always because we feel we need it. But just because it’s something novel.
I walked out of my endo appointment without a prescription for any new drugs. We chatted about my options and when we weighed it all up, there didn’t seem to be any real benefit. But the door is open for further discussions when I see her next.
I don’t need anything new. There is nothing I can do really to be doing better. It’s just more of the same. Every day. Lather. Rinse. Repeat. (And repeat…repeat…repeat.)
Diabetogenic 