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Sometimes it feels as though discussions in the diabetes are seasonal. Like clockwork, we see the same conversations happen at the same times. Without missing a beat, almost as soon as a scientific conference is over, someone will comment about how difficult it is for PWD to get to conferences (true, however this year, #dedoc° voices could have assisted a number of the people who were stating that), and then there are discussions about disclosure by PWD who are fortunate to attend, even though pretty much every advocate I know who attends these sorts of things does a stellar job of disclosing.
And of course, the nature of the first big meeting of the year, ATTD, means that there inevitably will be noise about the gap in technology access. And you bet this is a discussion that we need to be having on regular rotation.
After attending my first ATTD, I wrote a piece about the complete and utter dichotomy of being at a conference that was only talking about the latest and greatest in technology while, at the same time, whilst the community was in the midst of its usual Spare a Rose month of fundraising. I struggled to balance the idea that we were talking about automated insulin delivery at the same time as urging donations so people could just get insulin!
Today, I’m revisiting the piece I wrote after last year’s ATTD, where my worlds of diabetes technology and language matters merged, and combined this with the over-representation of those at the super-dooper-tech-y end of the diabetes technology spectrum. (‘Super-dooper-tech-y’ is, obviously, a very technical term.)
I don’t for a moment think that meetings with a strong tech focus should end, or that those who are innovators in technologies should take a seat and let others speak. I don’t believe that at all. I will be forever grateful to the pioneers who continue to push the envelope and make things better for people with diabetes. But I do think that we need to ensure that there is equal attention to those who – by choice or because of their circumstances – are not walking around with an algorithm driving their diabetes.
If we truly believe that all diabetes stories matter, then we need to hear from people doing diabetes in every way possible. Perhaps if we make more of an effort to find and hear those stories, we will stop minimising our experiences, and starr seeing that whatever we are managing to do is truly enough…
DISCLOSURE 1 (for ATTD 2020)
I was an invited speaker at #ATTD2020, and my registration was covered by the conference organising committee. My airfare and part of my accommodation to attend ATTD was covered by Lilly Diabetes so that I could participate in the DOCLab advisory group meeting which took place on Friday, Saturday and Sunday. Other accommodation was covered by DedocLabs (I am an advisor for the #dedoc° voices program) and Novo Nordisk (I am a member of DEEP). I have not been asked to write or speak about any of the activities I attended, or anything I have seen at the conference.
We all do a good job at undermining ourselves at times. We use a four letter word that diminishes what we are doing, and limits the value of our experience and expertise. That four letter word is ‘just’.
In diabetes, we hear it all the time: ‘Oh, I just have type 2 diabetes’ as though it is insignificant and doesn’t have any challenges. ‘I’ve lived with diabetes for just a couple of years’ because we think there is only currency in decades of living with the condition, when really any length of time with diabetes is meaningful.
And we are all about minimising our experience when it comes to the treatment of our diabetes. ‘I just use diet and exercise to manage my type 2 diabetes’ or ‘I’m just on tablets’ or ‘I’m just on injections twice a day’ or ‘I’m just on MDI’. The list goes on and on. And on.
I realised just how ridiculous we have become with this when I heard myself, during a conversation with a fellow Looper, ‘Oh, I just use Loop’. (More on that later…)
At the Ascensia Social Media Summit at ATTD we spoke about this, specifically how there is almost a stigma within the diabetes for those seen to not be using the shiniest and brightest and newest of technologies. It seems that some people almost feel embarrassed if they are not constantly updating their technology toolkit with the most recently launched product.
The idea that anything that we are using today is ‘yesterday’s technology’ is wrong. Blood glucose monitoring can’t be ‘yesterday’s tech’ if it is what most people are using to track their glucose. And syringes and pens can’t be considered the ‘old way to deliver insulin’ when that is how the vast, vast majority of inulin-requiring people with diabetes get insulin into their bodies. Plus, every single one of us using a pump must be able to deliver insulin this way because machines break.
Somewhere in discussions about our treatment technologies, we seem to have forgotten that, actually, not everyone wants to be using the latest kit. And that is okay. There is a spectrum of diabetes technology, and as long as we are on it somewhere and managing our diabetes the way that works best for us, then elephant stamps all around!
There is clearly an over-representation of people at one end of that spectrum dominating on and off line conversations. Spend a couple of hours in a diabetes Facebook group and it would be a reasonable assumption that most people are wearing pumps and CGM. But that’s not true.
And it could appear that DIYAPS is the way to go for most people with T1D, when the fact is that numbers are relatively low. It’s hard to estimate exactly, but there may be somewhere between 2,000 and 3,000 worldwide how have ‘built their own pancreas’. That is just a drop in the type 1 diabetes ocean.
It’s fantastic for those of us interested in this technology to be able to (virtually) congregate and talk amongst ourselves. I learn so much from my peers in these groups – just as I have with all aspects of life with diabetes. The lived experience continues to trump any other way of learning about diabetes.
Of course, that doesn’t mean that we shouldn’t be talking about technology used by limited numbers. Of course we should. We want others to know about it so they can make an informed choice about whether it may be right for them. We want our HCPs to know about it and to support those of us using all sorts of technologies and treatments.
Where it becomes problematic is when there is the misconception that this is the norm. Or when those not using the newest technology feel that they are wilfully doing diabetes the ‘old way’. It’s unfair to think for a moment that those who are not using the tech ‘don’t care’ enough about themselves – especially when decisions are made based on a very good understanding of what is available and what they have decided works best for them.
So, back to my ‘Oh, I just use Loop’ comment. It was directed to someone far more technologically advanced than me; someone who runs all sorts of other programs alongside their DIYAPS. They generate lots of reports and make lots of changes and seem to have far more bells and whistles than I even knew were available.
I nodded as they told me all they were doing and then, when they asked me how I manage my diabetes, I answered that I just use Loop. I heard myself saying it and stopped and corrected myself. ‘I mean…I use Loop. It works for me. Perfectly.’
We don’t need to make excuses for doing diabetes our own way. If we truly have choice (which I know is not always the case), and we have made the choice based on what we believe to be the best possible treatment and technology for us at that moment, then surely that’s a great thing. We shouldn’t ever be made to feel less committed to our own health and wellbeing. That’s not how it works.
DISLCOSURE 2 (for ATTD 2019)
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.
When I first started working for a diabetes organisation, the first big project I oversaw was the development of a booklet providing information to young people living with type 1 diabetes. After approaching a few others out in the community working with and supporting this cohort, I was promptly reprimanded by one person who told me in no uncertain terms that I (and the organisation I was working for) should butt out, because this was not our space; it was this group’s area. I was somewhat astonished at the idea of ‘owning’ a segment of the diabetes community. How did that happen? Who decided that? I was a young person with type 1 diabetes at the time (obviously, this was years ago!), and I didn’t feel especially well-represented by any one group, and I certainly objected to the idea of someone deciding that their group spoke for me and my ilk.
The diabetes community is made up of many, many voices (some louder than others), and each person has different priorities for their own diabetes, and the broader issue of diabetes in general. We see that every day with different campaigns that are driven by people in the community. Some of the most visible are movements or campaigns that employ hashtags such as #Insulin4All, (although the insulin affordability discussion encompasses more than just this hashtag), #NothingAboutUsWithoutUs and #WeAreNotWaiting, and, as we are still in February, #SpareARose. (Not too late to donate, folks!)
Actually, #SpareARose is an excellent example of this. It may have been started by a few incredible advocates, but they never felt the need to identify themselves as the ones who led or created it. They encouraged anyone and everyone to be involved in any way they could – to donate, to share, to write about it, to make vlogs. It is owned by all and by no one at the same time!
At ATTD last week, Chris ‘The Grumpy Pumper’ Aldred and I took to the stage to do a presentation on #TalkAboutComplications, which incorporates the under-discussed issue of diabetes-related complications and its intersection with #LanguageMatters. Our talk was in a session that incorporated presentations focusing on peer support and diabetes online community and technology – all very much ‘user-led’ initiatives and movements.
These campaigns are not about everyone having the same idea and perspective. People approach different issues in different ways. One person’s peer support ideal is another person’s living nightmare! And #LanguageMatters remains a topic with myriad ideas and expectations for just how embedded it should be in the hearts and minds of our community and beyond.
But it is undeniable that no one really claims ownership of any of these movements. While Grumps may have tweeted that hashtag #TalkAboutComplications first, I know that he doesn’t feel that he ‘owns’ it, or discussions around it. Rather, he used it as a rallying cry to bring people together – to find a tribe, so to speak, and to connect people with diabetes searching for information and support about the realities of living with diabetes-related complications.
I (and a couple of others) have been accused of claiming ownership of #LanguageMatters because of our frequent posts, tweets and other commentary on the issue, but anyone who has aimed that accusation at me has either never heard me speak about the topic or read this blog. Whilst I may be extraordinarily proud that I work for the organisation that developed and launched the first position statement addressing this topic, and I have been invited to speak about our work a number of times, I very clearly point out the origin story of this movement, and that is very much a story from the diabetes community.
People with, or affected by, diabetes have been speaking about how words and language impact for a long time. Older online discussion boards frequently held debates about PWD/diabetic for as long as I have been diagnosed (and I’m sure, many years before that). Parents of kids with diabetes shared how they felt judged and shamed by the words used by HCPs when their kids A1Cs were out of range, feelings echoed by adults with diabetes.
I remember one of the first articles I read in Conquest magazine (Diabetes Australia’s magazine back when I was diagnosed) was by Gordon Bunyan who eloquently wrote about how words matter. Gordon has become a good mate, and over the years I’ve turned to him regularly to talk about this issue. And I remember hearing how teenagers at camps instigated change when it came to the language used when talking about glucose levels, moving from using good and bad, to the more factual high and low. That was back before I was working for the organisation involved in those camps.
Diabetes Australia, in developing that position statement, wasn’t sticking a flag in the issue, claiming ownership – and nor have any of the people involved in its development. It was a response to something that mattered to people living with diabetes – people who told us repeatedly that the words spoken to and about them, the attitudes that those words conveyed and the feelings they had when different words were used had the ability to empower or harm.
Having organisations build programs, activities, resources and services around what people affected by diabetes are talking about unites the community. It also demonstrates a willingness to listen and acknowledge the value of lived experience. That was the thinking behind the development of DIYAPS and low carb position statements. Acknowledging PWDs’ right to choice of treatment truly does put us in the centre of the discussion.
I should say that I am not undermining that leadership that organisations and individuals show when taking on these issues. It does take people to run with the ideas and turn them into something – whether that be a position or guidance statement, or different service or resource. I admit to occasionally feeling a level of frustration that legitimacy of some of these important-to-the community issues only comes when they have been made ‘official’ by an organisation, but I also know that all stakeholders involved is important; that together we are stronger!
Last week we saw on show discussions that have their foundations very much in the community. They may have moved into the realm of HCPs and researchers, and the conference stage. But it is well worth remembering where – and why – they originated.
DIYAPS – started in the community and now on the program at ATTD!
DISCLOSURES
I was an invited speaker at #ATTD2020, and my registration was covered by the conference organising committee. My airfare and part of my accommodation to attend ATTD was covered by Lilly Diabetes so that I could participate in the DOCLab advisory group meeting which took place on Friday, Saturday and Sunday. Other accommodation was covered by DedocLabs (I am an advisor for the #dedoc° voices program) and Novo Nordisk (I am a member of DEEP). I have not been asked to write or speak about any of the activities I attended, or anything I have seen at the conference.
In a couple of weeks, the diabetes conference juggernaut will descend on Madrid for ATTD.
This one is all about new treatments and technologies in the world of diabetes and, in its thirteenth year, looks to once again be a busy and enlightening meeting.
There is so much on the program that focuses on user-led technologies and initiatives. I think it’s fair to say that PWD have long recognised that technology in diabetes is more than just the devices we wear on our bodies. We have long used technology for support and to connect to others who help us manage the day-to-day life of diabetes, and to learn and share. DIYAPS may be about the systems, but grasping the role of online platforms and support is essential in understanding the #WeAreNotWaiting movement as a whole.
It’s great that a number of PWD already know that they will be part of ATTD this year, attending satellite events run by different device and drug companies. Some are on the program and some will be there through other opportunities and work.
The more the merrier, I say! Different voices with different experiences sharing and learning is always a great thing. And having the opportunity to meet people in real life after only seeing them online adds another dimension to our peer support networks.
For European diabetes friends yet to secure a place at ATTD, there is another possible avenue in, but you need to be quick. Launching at ATTD is the new #dedoc° voices program. Although #dedoc°has its foundations in Germany it is truly an international community, involving people from all over the world. #docday° events (always a highlight at these conferences) involve diabetes advocates from across Europe and the US, and even the odd Australian, too. It’s great to see this new initiative is helping more advocates get a seat at the diabetes conference table as active participants.
APPLY NOW
If you want to be considered for the #dedoc° voices program, you need apply, which is super simple – just go here, where you will find out all about the program and how to throw your name in the ring! Applications close on Friday, so chop chop!
Successful applicants will have their travel and accommodation costs reimbursed, and will receive full registration to the conference.
Good luck. And hope you see you there.
Disclosure
I am an advisor to the #dedoc° voices program. I do not receive any payment for this role.
I am an invited speaker at ATTD 2020. Lilly Diabetes is covering my travel and part of my accommodation so I can participate in the DOCLab advisory group meeting held during ATTD.
Each year, as we stop, look back and take stock, the reason that we are feeling so tired becomes apparent. This year is no different for me; my work travel calendar was the most intense it has ever been, with nine long haul trips, some for only a day or two. Combined with regular domestic travel, I can truly say that I have seen the inside of airports far too much. I stopped adding up the trips I did once I passed 100 walks down airbridges to board planes because it was making me weepy.
But on top of the usual exhaustion this year, there seems to be an extra element of fatigue that goes beyond what I’ve experienced before.
But first, let’s talk highlights, because there have been many of them.
The year kicked off with Spare A Rose and whoa, did we start the year with a bang! With the true philosophy of SaR at the forefront (an initiative for the community, by the community), we not only reached our rather audacious target, we smashed it! A cheeky and opportunistic little extra push saw a smiling Grumpy Pumper unleashed to the whole world for just a moment The DOC didn’t break, but the final tally of for the campaign meant that 939 kids in under-resourced countries would be receiving insulin for a year. Amazing!
My favourite issue, #LanguageMatters, only went from strength to strength, and the publication of this piece in BMJ, followed by this podcast, was a brilliant way to get it outside of the diabetes echo chamber. The importance of language featured on the programs of major conferences such as ADA and #IDF2019 with stellar panels speaking about why it really does matter.
My diabetes turned 21 and tied up in all the emotion of that, my pancreas’ performance review didn’t go all that well. Maybe next year? (Unlikely.)
Possibly the most exciting, heart-warming, rewarding and humbling thing I did this year was co-facilitate a workshop in Manila with some of the most dynamic, compassionate and enthusiastic young diabetes advocates I have ever met. I’m thrilled have had a chance to catch up with a couple of the people from this meeting and can see the wonderful work they are doing in more than trying circumstances.
Peer support was never far away. One of my favourite digital campaigns came from Diabetes Australia (remember – I work there so consider my bias) with our The Lowdown campaign. What a brilliant way to showcase how a digital campaign can reach and connect people from all over the world, and encourage them to safely speak about a topic that doesn’t seem to get anywhere enough coverage. I spoke about the campaign’s success in a number of places this year.
My own personal peer support experiences happened all around the globe at conferences, advisory board meetings and other opportunities to see friends and colleagues with diabetes. These moments ground me and help me make sense of what I am seeing and hearing, and are critical for keeping me balanced.
A special shout out to these two peers and dear, dear friends: Bastian and Grumps. We saw each other an inordinate number of times this year, literally all over the globe, travelling on planes, trains and automobiles for our #DiabetesOnTour. I do think we should launch a calendar of the 2020 pics. (Admittedly, we may be the only ones remotely interested in that idea.) When I talk about my diabetes tribe, it’s friends like these two. We’ve celebrated through some pretty amazing things this year, stood up to elevate the lived experience over and over, and also counselled each other through the tough bits. We’ve held post-mortems of long days, sitting in hotel foyers and bars, trying to make sense of what has happened, working out how to always improve, and plotting and planning more and more and more. I am so grateful to them for being the scaffolding holding me up when I’m away from home and feeling overwhelmed.
So, now the reason for that elevated exhaustion…
When I first wrote about advocacy burnout back in January this year, I had no idea at the time that it would set the scene for a difficult and sometimes troubling theme for the year. I get tired and overcome at times throughout the year, but 2019 was different and I’m not really sure why.
There were moments this year where I did honestly wonder how much more energy I have to stand up over and over again to a lot of what I was seeing. I don’t like using war and battle analogies in diabetes, but I did feel that I was fighting a lot of the time. Diabetes advocacy is a tough gig to begin with. Adding burnout on top of it makes it seem shattering.
Being attacked by HCPs for daring to voice my thoughts and challenge their behaviour, or getting it from certain, more confrontational parts of the diabetes community, or having industry reps tell me I don’t know what I’m talking about for daring to suggest that maybe their lame attempts to simulate diabetes in gameshow-style gimmicks at conferences could be better directed at actually engaging and listening to PWD all added up.
Or perhaps it was the repeated examples of ‘diabetes for laughs’…and realising that we are a long way away from HCPs truly being allies in our daily encounters with stigma.
Or perhaps it was feeling that we needed to justify just how important the #LanguageMatters movement, and the decade of work we’ve done really is. I can’t even begin to tell you how upsetting this little incident was.
It added up and several times I’ve felt overcome. I feel like that today. Which is disappointing because on measure, the highlights, the positives and the amazing community should overshadow the negative encounters.
And that is why I’m taking a break from Diabetogenic. I need some time away from feeling as though I want to analyse what is going on and comment on it. I have a wonderful holiday planned with my gorgeous family where we will see friends and wander wintery streets, rugged up in pompom hats. And then, will warm up once back in Australia to finish recharging my seriously diminished batteries, ready for a new year that’s already shaping up to be so, so busy.
Until then, I hope you have a wonderful holiday season, celebrating however you see fit. Thanks for popping by. And I’ll see you in 2020, clapping my hands and raring to go!
The IDF Congress proved once again that the power of peer support should never, ever be underestimated. From spending time with the considerable number of diabetes advocates floating around the conference centre, to hearing about their work, to seeing them present their sessions, to speaking with the enthusiastic IDF Young Leaders, there were constant reminders of just how much we value and need contact with those who know diabetes.
Our peers are not only those whose beta cell production is on strike. It’s also the people who cheer and champion us. While I will always shout about how I need to be around others with diabetes – those who intrinsically ‘get it’ – my tribe also includes people affected by diabetes in other ways. Having friends and colleagues Taryn Black and Jane Speight at the Congress was wonderful because they were able to showcase the amazing work they do that champions people with diabetes. (They may not want to be friends anymore after they see this picture…)
When we asked for topic submissions for IDF2019, peer support rang out strongly as a topic for which there was much interest. This has been consistent with all the IDF Congresses I’ve attended. But we wanted to make sure we were considering it lots of different ways and at different stages of a person with diabetes’ life. What were the benefits for younger people with diabetes through their own eyes? We don’t get to hear from them all that frequently. And what about for older people who have lived with diabetes for many years, or who are newly diagnosed with diabetes? And what about people whose diabetes doesn’t neatly fit into the pigeonholes we so like to use in the diabetes landscape?
And so, the program managed to highlights these different aspects of peer support, showing that there are just as many ways we find a way to connect as there are people with diabetes!
So, here are some snapshots from different folks at the Congress to give you an understanding of just how much peer support was all around!
Lydia Parkhurst spoke about how important it was to have met other young people with diabetes as she moved from adolescent to young adulthood. She said: ‘It’s great having the support from my friends and family, but unless you have diabetes yourself, you never truly know.’
Georgie Peters looked at not only the positive aspects of peer support, but also how it may enable damaging behaviours – in this case, referencing recovery from a diabetes-related eating disorder.
Jane Speight spoke about how peer support may help reduce diabetes distress, and in my N=1 example, I can say that is certainly true.
Bastian Hauck acknowledged the input of peers in the #WeAreNotWaiting movement, explaining how the online support is the best 24 hour customer service hotline imaginable!
Cheryl Steele echoed Bastian’s comments about the DIYAPS online world in her talk that touched on support as she discussed the ages and stages of type 1 diabetes.
At the Ascensia Social Media Summit, in his opening remarks Joe from Ascensia made the point: ‘Peer support is a really important aspect of living with diabetes.’Ascensia’s commitment to this in their regular summits, as well as their online campaigns is brilliant. At this summit, there were 171 years of diabetes lived experience in the room, and a lot of camaraderie. There were a lot of buzz at this event, with people who had only known each other online suddenly becoming IRL friends.
Friend and fabulous diabetes advocate Phylissa Deroze spoke that not all peer support is right for all people. Finding space when living with type 2 diabetes can be challenging.
And peer support researcher and staunch supporter, Ed Fisher amended his well known ‘Four Key Functions of Peer Support’ by adding a fifth: ‘Being there and shared experience’. How wonderful is it that recognition of that ‘we get it’ aspect of peer support is being acknowledged by researchers?!
Off the program, it was impossible to ignore the power of that shared experience. We heard stories that resonated because they mirror our own. And then we heard those that were not anything like ours, but we wanted to learn more and understand just how they impacted our brothers and sisters with diabetes. When I heard Sana from Pakistan explaining the discrimination and stigma associated with diabetes means that women don’t tell their husbands they are living with diabetes, hiding away the day to day tasks required (if doing them at all), her advocacy efforts became even more remarkable. And when one of the young leaders echoed this story, and went on to share how she wore her pump prominently at an extended family gathering, despite warnings from her parents that it wasn’t a good idea, we couldn’t help but applaud. Feminism and diabetes activism is really tough going, and these were just two women being the change and storming the way through for others.
And, then…then there was Manny.
Manny Hernandez gave the award lecture for the Living with Diabetes Stream. When we were choosing who to acknowledge for this award, Manny stood out for his work in the diabetes community.
Manny was asked to choose his own topic for his talk, and came up with ‘The Importance of Community for People with Diabetes’. He couldn’t have chosen a better subject matter! Manny started by sharing his own story, and how it wasn’t until he met others with diabetes that he felt connected to a community. ‘I learned more in one hour with peers than in the previous four years,’ he commented. And then: ‘There are amazing endocrinologists out there but they can’t know what it’s like to live with diabetes, what the nuances of high and low blood sugar feels like, because they don’t live it.
Manny being Manny didn’t just leave it there. He wanted others to have what he had found, and so he created Tu Diabetes, followed by Es Tu Diabetes and The Diabetes Hands Foundation (DHF). For so many people with diabetes, this was a first foray into peer support. I know that it was a hugely valuable source of information and support for me. And it introduced me to people who have become very, very dear friends. (Massive shout out to Melissa Lee who was interim CEO of DHF after Manny left. I can’t even begin to explain how much I appreciate her warmth, wisdom and wit. And friendship.)
Manny’s award lecture was a love letter to and for all of us who have found that support which makes our lives with diabetes easier, better and more hopeful; for finding out tribes, loving them hard.
It’s no wonder that #PeerSupport was one of the most used hashtags at the Congress. It was recognised by speakers in different sessions as a cornerstone of diabetes management, just as important as other aspects involved in our care.
And so, I guess that this blog isn’t anytime soon going to stop or slow down extolling the benefits and value of peer support. Thanks to all those wonderful peers – friends – at #IDF2019 for making the experience such a rich and supportive one.
DISCLOSURE
I was the Chair of the Living with Diabetes Stream at the IDF Congress in Busan. My flights to Busan were covered by Ascensia Global (in order for me to get to Busan in time to co-facilitate their Social Media Summit). Flights home and accommodation were covered by the IDF.
Who wants to get out of a warm hotel bed and wander through the freezing streets of Busan to the BEXCO conference centre on the last day of an exhausting conference to be ready for an 8.30am session on diabetes and sexual health?
As it turns out, a lot of people do (including a few people who may have been doing karaoke until just a few hours earlier).
The symposium was in three parts. I started by talking about the female perspective of diabetes, sex and sexual health, followed by Grumps (Chris Aldred) giving the male perspective. Brilliant physician and academic, Fauzia Moyeen, closed out the session by highlighting current research in this area of diabetes.
Introducing Fauzia Moyeen to the stage.
My session at the IDF Congress focused on the recurring themes I hear from women living with diabetes. These themes were evident in responses to the blog post I wrote a couple of weeks ago asking women to share their experiences, and reinforced the messages I’d received after previous posts I’d published about diabetes, women and sex.
As much as I had wanted to present a variety of different experiences, the messages I heard from women was not especially diverse! Women from countries considered more liberal and open to discussions about sex said exactly the same things as out sisters from countries where you would expect limited information about sex and sexual health.
Over and over and over again, women echoed that they had never spoken about this issue with a healthcare professional, and if they had raised it, they were told diabetes does not impact on sex.
Some of the quotes were absolutely heartbreaking. Women shared stories of how their relationships ended because sex had become so painful and uncomfortable after their diabetes diagnosis and they had not been able to get help. One woman was told ‘…get used to it because that’s how it is’, another was told the pain was not real.
The emotional impact of feeling that yet another part of our bodies is letting us down and not doing what it is meant to is never considered or discussed. We are left to flail around with these intense feelings and concerns. It’s not even a matter of being able to get help – we don’t have anyone signal to us that this could be an issue.
Then there is the mess of adding hypos, or fear of hypos into sexual activity, or trying to be intimate when we’re hyper and our bodies feel leaden and achy. There is so little that is sexy about diabetes, and that may be especially true when we are trying to be our sexiest!
And then there is the whole contemplation of how to introduce a new partner to devices stuck on bodies and scars on skin, and the worry about how that will make them see us.
Discussion after my talk was lively, with HCPs asking some great questions. One wanted to know how to bring up the topic, which is really important. Many people are not comfortable talking about sex and sexual health. Not everyone is happy to share when they are experiencing problems. Cultural considerations come into play here as well. Having a HCP of a different gender speaking about sex makes some people very uncomfortable. One HCP said that when he has raised the topic, he’s been told that it’s none of his business.
I had some suggestions about normalising discussions about sex, while remain sensitive to people with diabetes, allowing them to dictate if this is a topic for discussion.
I believe it is essential that the person with diabetes is the one who decides whether or not sex and sexual health are to be topics of discussion. Now that doesn’t mean HCPs don’t get to ask at all, leaving all responsibility to the PWD. They can provide prompts. Perhaps have some brochures in the waiting room that can be accessed by women. (Yes! There are such things and you can see them here.)
Also, list sexual health and sex as something that may be affected by diabetes in general diabetes discussions. Think about it as a complication of diabetes and address it as you would any other complication. Just mentioning it plants a seed for the PWD to understand that this may be something that needs attention.
I borrowed a suggestion I heard Sarah Le Brocq during her language and obesity talk at the DEEP Summit earlier this year. Sarah shared how one GP practise has a little form for people to fill in before they go to see the doctor. There are a list of different issues and the person can tick the topics they are comfortable having discussed in the appointment. (This, she said, is a brilliant idea for people living with obesity, because often that is the first and only thing the doctor wants to speak about, even if the reason for the appointment is a sore finger or something irrelevant to the person’s weight).
Translated for diabetes, develop a checklist with potential topics, with sex as one of them. If the box had been ticked, that would signpost to the HCP that this was a topic that the person with diabetes wanted to discuss.
Another question came from a doctor who asked how to make discussions about sex a priority when he needs to focus on diabetes-related complications. ‘If a person is dead from a heart attack, sex won’t matter,’he said.
The response from people with diabetes was the same. Consultations need to focus on the issues that matter to people with diabetes, not tick the box exercises so HCPs feel that they are getting in all the things theywant to speak about.
Yesterday, I wrote this in my post:
‘… sometimes the chasm between what people living with diabetes want and need and what HCPs and researchers think we want is gulf-like.’
I felt that keenly after my talk. Women had told me that relationships had ended because of how diabetes had impacted on their sex lives. Others said that the discomfort they felt having sex meant that they just didn’t want to, and it had become a constant source of tension between them and their partner. Other women felt that they were failing themselves and their current or potential partners. One woman said that she refused to have sex because she didn’t want anyone to see how diabetes had marked her body.
To me, these sound like issues that need to be addressed, as much as, if not more so, than trying to adjust basal rates. They are just as important as making sure someone is doing their foot checks. They are far more important than knowing a current A1c. Dismissing the importance of sex in a woman with diabetes’ life as less critical than other aspects of her diabetes care clearly is doing us no favours.
The feedback following the session was really positive and I hope that we start to see similar sessions on programs at other diabetes events. Let’s get the dialogue happening so that women can feel comfortable talking about diabetes and sex. And get the help we may need.
DISCLOSURE
I was the Chair of the Living with Diabetes Stream at the IDF Congress in Busan. My flights to Busan were covered by Ascensia Global (in order for me to get to Busan in time to co-facilitate their Social Media Summit). Flights home and accommodation were covered by the IDF.
Busan is a very different city today than it was last week. There won’t be warmly dressed people hurrying into BEXCO with IDF2019 lanyards around their necks, eager to learn about diabetes. The word ‘diabetes’ won’t be uttered in almost every language of the globe. There won’t be Melbourne diabetes people loudly lamenting that Starbucks seems to be the coffee of choice in the city.
And you won’t see groups of people from all around the world standing together talking about what it’s like to live with diabetes. Most of us have gone home to our respective corners of the world, back to our families, back to our jobs, back to our real lives. But we will always have Busan and the incredible week of the IDF Congress.
By the time I arrived in Busan on Monday, the IDF was already a different beast. There was a new President and Board in place and some of the concerns that we’d had about the handover had melted away to nothing. This paved the way for what we really there for: a week of learning, networking, hearing different perspectives and truly uniting for diabetes.
We did that.
Was it a perfect conference? Of course not; they never are. There were hiccoughs and AV fun. There were controversies that played out online very differently to the way they actually happened in real life. There were sessions – critically important and brilliant sessions from all streams– with disappointing turnouts.
But these are all minor concerns that are the reality of every conference I have ever attended. There will be a time for post-mortems and evaluations and planning for improvements to future conferences. That time, however, is not now. Now is the time to celebrate.
IDF 2019 was a brilliant showcase of diabetes from around the globe. As expected, I only attended sessions from the Living with Diabetes stream and every single story was beautifully presented, and enhanced by the professional expertise of the HCPs who shared the stage. Amongst the incredible tales were moments of discomfort. It’s challenging to hear of the struggles many of my sisters and brothers with diabetes face in their day to day lives. I was forced to confront my privilege in a way that demands more than just acknowledging it there.
Also, difficult to accept is realising that sometimes the chasm between what people living with diabetes want and need and what HCPs and researchers think we want is gulf-like. For every HCP who ‘gets us’ and understands the value of lived experience in the healthcare space dialogue, there are many others who just don’t accept it, and, despairingly, don’t want to listen.
But more on that another day. Because for now, I’m focused on the people who did such a stellar job. So here are just some of them!
Two hours after touching down in Busan, and we kicked off the sixth Ascensia Social Media Summit with these gems.
Bright and early on day 1 of IDF2019, and the auditorium was packed to hear about diabetes and tech.
Always, ALWAYS, pleased to share the stage with Jane. Here we are just before the panel session.
Georgie excited to TALK ABOUT HYPOS! (We couldn’t understand why there was an explanation mark at the end of that sentence.)
Manny Hernandez gave the LWD Stream Award Lecture and there is no one more qualified to talk about the importance of diabetes community. How honoured I was to introduce him!
Celebrating Manny! (Photo courtesy of Boudewijn Bertsch)
From Melbourne to Busan. Neighbours at IDF2019. Jo was speaking about living with a rare type of diabetes and Andy was there for support (and photos from rooftops).
This woman! Sana, deputy lead of the LWD Stream and a bright, fierce force.
Anita eloquently explaining the challenges of living with diabetes-related complications in Indonesia.
Apoorva highlighting #LanguageMatters in her talk.
Some of the most dynamic young people I have ever met at the Young Leaders in Diabetes Training Summit.
Cherise can always be relied upon to ask thoughtful questions.
I’ve lost count of the cities we’ve done our #DiabetesOnTour this year, but these blokes have made all my travel so much better! Thanks Bastian and Grumps.
My favourite people at IDF2019? The two baristas running this uber-hipster coffee van.
We were all surprised to see the room packed full at 8.30am on the last day of the Congress. Sex sells. Or people just want to talk about it…
One of the best pieces of advice I was ever give was this: surround yourself with smart women. This is the LWD stream from IDF2019. I truly was surrounded by the smartest of women! Thank you Sana, Pei Yan and Elizabeth.
The final session in the LWD and my highlight of the whole congress was my neighbour, Sol, talking about living with MODY 3. We could not have scripted a closing remark better than his: ‘Being at this conference has made me feel part of something and with people that understand.’ Welcome to the world of diabetes peer support, Sol. You are so, so very welcome here.
DISCLOSURE
I was the Chair of the Living with Diabetes Stream at the IDF Congress in Busan. My flights to Busan were covered by Ascensia Global (in order for me to get to Busan in time to co-facilitate their Social Media Summit). Flights home and accommodation were covered by the IDF.
The International Diabetes Federation’s World Congress is on this week and I am en route to Busan, South Korea for a very busy few days.
Two years ago, when I was invited to chair the Living with Diabetes (LWD) stream at the Congress, I said yes without hesitating. I had been deputy Chair for the previous Congress and loved working together with Manny Hernandez who was leading the stream. I hoped that we would be able to put together a programme as strong as we saw in Abu Dhabi in 2017, as well as introducing lots of new speakers, new topics and elevating the voice of people living with diabetes. The LWD organising committee has been a dream to work with, and together with Sana Ajmal, Elizabeth Snouffer and Pei Yan Heng we have brought together a program that I am so proud of.
I would be lying if I said that the problems that have been overshadowing the IDF over the last few years hadn’t been front of mind at times. In fact, I often wondered if we would actually all be congregating in Busan. There were times I expected to wake up in the morning to an email announcing the Congress had been cancelled and that all our hard work had been for nothing.
But, here we are, just 24 hours out from the opening ceremony, and Busan is already starting to fill with diabetes healthcare professionals and researchers. And a whole lot of wonderful diabetes advocates who will be sharing their stories of living with diabetes. I can’t wait to get there and to see and hear just what they have to say on the stage at the BEXCO conference centre.
This Congress is the only international diabetes meeting that has a stream dedicated to the lived experience. We are given equal billing with other streams and the same funding to fly in speakers from around the world. I am thrilled that we have this stream, but my only regret is that there is not more integration of that PWD voice in other streams.
So, here is my hope – and plea – to anyone and everyone at the Congress: Make time to go to hear the speakers in the LWD stream. They are a reminder of why you do what you do. There will be stories of incredible hope, adversity and brilliance. There will be tears, and humour in there too, because sometimes, laughing (along with insulin) really is the best medicine.
Thanks to everyone who has made the long trek to Busan (it’s really not the most direct place to get to!), and prepared to share their story and experiences. There will be opportunities to follow along from home – the hashtag is #IDF2019, and some sessions are likely to be streamed live by those in the audience. Please do participate in the conversation from wherever you are. I’ll see you from Busan!
DISCLOSURE
I am the Chair of the Living with Diabetes Stream at the IDF Congress in Busan. My flights to Busan are covered by Ascensia Global (in order for me to get to Busan in time to co-facilitate their Social Media Summit). Flights home and accommodation are covered by the IDF.
Next month, I’m rounding out what has been a really busy year of conferences at the IDF World Diabetes Congress. One of the talks I’m giving is on the experiences of women with diabetes when it comes to sex. (*I was going to call this post ‘Sex on stage’, but then wisely thought better of it.)
The symposium will include a session about men with diabetes and their experiences, and a talk given by a healthcare professional highlighting some research in the area. (Spoiler alert: there is not much research when it comes to women, sex and diabetes.)
For my talk, I want to not only draw on my own experiences, but also bring together what I’ve heard from other women living with diabetes. Whenever I’ve written here about this issue, (including here and here and here) I’ve received lots and lots of private messages as well as some post comments – women want to talk about it!
The main themes that seem to resonate time and time again are:
- There is very limited education and information when it comes to women with diabetes and sex, sexual function and sexual health
- Many (most?) women with diabetes have never had a HCP talk to them, or ask them questions about their sexual health – other than contraception and the importance of planning for pregnancy
- Many (most?) women believe that diabetes does impact on their sexual function, and those diagnosed after they were already sexually active report that diabetes absolutely does impact on sex
- Lots of women say that the visibility of diabetes (devices on bodies, scarring etc) makes them feel self-conscious and impacts how they feel about themselves and about sex.
I know that when I spend time with my good women friends with diabetes, talk about sex and how we feel about it, and our bodies, comes up. It used to take a couple of glasses of wine to get us comfortable enough to start the conversation, but these days, we launch straight in. Are we all chronic over-sharers, or are we just desperate to connect with others who get it and might have some tips and tricks to share? I think it’s the latter…although I think sometimes the former, too!
So, now is where you come in! If you are a woman living with diabetes (ANY type and duration of diabetes, any age), I would love to hear your experiences, including about discussions you’ve had with your HCP team about this issue. I’m also interested in any advice or information women have found useful. And if you are one of the women who has never had a conversation about it, or been told that diabetes does not impact on women’s sexual function, I want to hear from you too. Oh, and if you have any great resources, articles, blog posts or anything else you’d like women to know about, please share in the comments section.
You can comment on this post and use a pseudonym if you’d prefer to remain anonymous, or send me a private message here. If you could include your age and how long you’ve had diabetes, that would be great. I will be using quotes in my talk, but no names will be shared (unless you would like me to).
I was really pleased to see that this was a topic suggestion by a few people for the Living with Diabetes stream at the IDF Congress, because I truly believe we need to talk about diabetes and sex a whole lot more. It shouldn’t be a taboo subject, or one that people are embarrassed to discuss. And women need to be taken seriously when we say that diabetes does impact our sex lives.
Please help out – the more voices, the merrier. And I’ll do what I can to have the session live streamed so that we can continue the discussion beyond what happens in the Congress conference centre.
DISCLOSURE
I am the Chair of the Living with Diabetes Stream at the International Diabetes Federation’s World Diabetes Congress which will be held in Busan in December 2019. My flights and accommodation, and conference registration have been paid for by the IDF. I am not receiving any payment to speak at the conference, or for my role as stream Chair.
Two years ago, I walked off the stage at the inaugural ADATS event feeling very shaken. I’m an experienced speaker, and regularly have presented topics that make the audience feel a little uncomfortable. I challenge the status quo and ask people to not accept the idea that something must be right just because ‘that’s how it’s always been done’. Pushing the envelope is something that I am more than happy to do.
But after that very brief talk I gave back in 2017, a mere three months after I started Looping, I swore I would never speak in front of a healthcare professional audience again.
That lasted all of about two months.
In hindsight, I was more than a little naïve at how my enthusiasm about user-led technologies would be received. I can still remember the look of outright horror on the face of one endo when I cheerfully confirmed:‘Yes! Any PWD can access the open source information about how to build their very own system. And isn’t that brilliant?!
Fast forward to last Friday, and what a different two years makes! The level of discomfort was far less, partly because more than just a couple of people in the room knew about DIYAPS. In the intervening years, there have been more talks, interviews and articles about this tech, and I suspect that a number of HCPs now have actually met real-life-walking-talking loopers. Plus, Diabetes Australia launched a position statement over a year ago, which I know has helped shape discussions between HCPs and PWDs.
I’ve gotten smarter too. I have rejigged the words I use, because apparently, #LanguageMatters (who knew?!), and the word ‘hack’ scares the shit out of people, so I don’t use it anymore. (Plus, it’s not really accurate.) And, to protect myself, I’ve added a disclaimer at the beginning of my talk – a slide to reinforce the sentiment that I always express when giving a talk about my own life with diabetes, accentuating that I am speaking about my own personal experiences only and that I don’t in any way, shape or form recommend this for anyone else. (And neither does my employer!)
I framed my talk this time – which had the fabulously alliterative title ‘Benefits, Barriers and Burdens of Diabetes Tech’ by explaining how I had wanted to provide more than just my own perspective of the ‘three B’s’. I am but one voice, so I’d crowd sourced on SoMe for some ideas to accompany my own. Here’s just some of the responses.
(Click to enlarge)And this:
One of the recurring themes was people’s frustrations at having to wade through the options, keep up with the tech and customise (as much as possible) systems to work. And that is different for all of us. One person’s burden is another person’s benefit. For every person who reported information overload, another celebrated the data.
What’s just right for me is not going to be just right for the next person with diabetes. So, I used this slide:
I felt that the story of Goldilocks and the Three Bears was actually a really great analogy for diabetes tech. Unfortunately, my locks are anything but golden, so I needed a little (basic and pathetic) Photoshop help with that.
In this fairy tale, Goldilocks is presented with things that are meant to help her: porridge for her hunger, a seat to relieve her aching legs and then a bed to rest her head after her busy day. But she has to work through options, dealing with things that are not what she wants, until she finds the one that is just right.
Welcome to diabetes technology.
On top of working out what is just right for us, we have to contend with promises on the box that are rarely what is delivered to us. Hence, this slide:
Apart from the Dex add circled in red, all the other offerings are ‘perfect’ numbers, smack bang in the middle of that 4-8 target that we are urged to stay between. These perfect numbers, obviously belonging to perfect PWD with their perfect BGLs, were always completely alien to me.
A selection of my own glucose levels showed my reality.
I explained that in my search for finding what was ‘just right’, I had to actually look outside the box. In fact, for me to get those numbers promised on the box, I had to build something that didn’t come in one. (Hashtag: irony)
Welcome to Loop! And my next slide.
And that brings us back to two years ago and the first time I spoke about my Looping experience in front of healthcare professionals. It was after that talk, during a debrief with some of my favourite people, that this term was coined:
Funny thing is, that I am now actually the very definition of a ‘compliant’ PWD. I attend all my medical visits; I have an in-range A1c with hardly any hypos; I am not burnt out. And I have adopted a Goldilocks approach in the way I do diabetes: not too much (lest I be called obsessive) and not too little (lest I be called disengaged), but just right.
It turns out that for me to meet all those expectations placed on us by guidelines and our HCPs, I had to do it by moving right away from the things there meant to help us. The best thing I ever did was start Loop. And I will continue to wear my deliberate non-compliance as a badge of honour and explain how it is absolutely just right for me!
Diabetogenic 