Diabetogenic

Diabetes in schools with Ella

December 11, 2019 in Awareness, Diabetes, Family, Real life | 1 comment

On the first day of IDF, a star of the Diabetes Spotlight was Ella Adams. We wanted to hear about how children with diabetes are best supported, what works and what could be improved. In the past, we usually don’t hear directly from the young person themselves. But at the IDF Congress this year, the Living with Diabetes program team was committed to hearing the lived experience as much as possible. Ella’s dad, Jason, gave a brilliant overview of how he and his wife have supported Ella, but then he stepped aside and Ella told her own story. And she did it beautifully.

Ella shared stories about how best laid plans sometimes just go a little haywire. Admirably, she just gets on with things, dealing with her diabetes around whatever situation she is in. She is fiercely independent and is doing such a stellar job of working out she wants to do diabetes in a way that works for her. She has taken on more and more responsibility for her own diabetes, her parents stepping back as she has felt ready to step up.

We had two young people on the program in the Living with Diabetes stream this year and I am so proud that we stayed true to our wishes of handing the microphone as much as possible to people living with diabetes. We saw a different type of program and Ella was very much a part of that.

Jason filmed his daughter’s presentation and shared it on YouTube, and they have given me permission to share it here. So here’s Ella. What an absolute star!

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.

Women, diabetes and sex at #IDF2019

December 10, 2019 in Awareness, Conferences, Diabetes, Health, Real life | 2 comments

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.

Back from Busan and #IDF2019

December 9, 2019 in Advocacy, Awareness, Community, Conferences, Devices, Diabetes, DOC, Engagement, Healthcare team, Mental health, Peer support, Real life, Research, Social media, technology, Travel | 1 comment

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.

Busan-bound for #IDF2019

December 1, 2019 in Conferences, Diabetes | 1 comment

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.

(Almost) Wordless Wednesday

November 20, 2019 in Diabetes | 1 comment

With Diabetes Awareness Month two thirds over, I was thrilled to find just what I needed engraved into the footpath outside my favourite local cafe. It’s what I’m living with and for.

My dear friends with diabetes, let’s be gentle to ourselves. Ten days to go…

#AndOnSundaysWeBake and don’t feel guilty

November 18, 2019 in Diabetes, Food, Real life | 2 comments

Shortbread with Smarties. (Time lapse at end of post.)

Every Sunday, I spend an hour or so doing one of my favourite things. I bake cookies, cakes, brownies or anything else that takes my fancy. I make a time lapse video of it and then share it to my Instagram and Facebook, along with some photos of the delicious finished product and the hashtag #AndOnSundaysWeBake. My friends and family frequently comment on my creations. Some ask for recipes; some ask if they can have some delivered to them; some are perplexed as to why I feel the need to add veggies to my cakes. (The answer is THIS ZUCCHINI BREAD RECIPE!!!!)

The other day, someone who had just started following me on Instagram asked me if these baked goods are my guilty pleasure.

‘Of course not,’ I said to them shaking my head. ‘Why should I feel guilty?’

‘Because they have sugar in them. And butter. Lots of carbs and fat. And you have diabetes. I thought you would steer clear of those kinds of foods.’

I sighed and thought that I could explain how as long as I cover the carbs with insulin, I am dealing with the diabetes side of things. And how I try to eat a balanced diet which mostly is made up of freshly cooked meals containing protein, in season vegetables and some carbs. I thought I could point to how I generally follow a low-ish carb diet because that works for me, and that my weekend (and week day too at times!) baking is a fabulous way for me to de-stress, and feel creative. I was going to point to how there is no such thing as a ‘diabetic diet’ and that people with diabetes can eat whatever we want and that it’s kinda not okay to ask us about what we are eating because it’s none of anyone else’s business. I started to tally up what I’d eaten for the day to highlight just how healthful my day’s food had been (so far) and was going to explain how I would be eating sashimi for lunch, and that has no carbs.

But instead, I just said ‘I don’t do guilty when it comes to food. And I try really hard not to do guilty when it comes to diabetes. Suggesting that we should feel guilty or shame when we eat something delicious that we enjoy – whether or not we’ve made it ourselves – just feeds into bullshit diet culture. My moral value has nothing to do with what I put in my mouth, or restricting food groups, or my weight.

‘So, to answer your question: No. What I bake on Sundays is not my guilty pleasure. But I do take great pleasure in baking and sharing the spoils with friends and family. And eating them. Because I am an amazing baker, and they taste absolutely delicious. Pleasure? You bet. Guilty? No fucking way!’

More?

My go to ‘smash diet culture’ SoMe sites are BodyPosiBetes and Feel Good Eating. Follow them for no-nonsense, no bullshit, no-diet-culture brilliance.

Family support looks like this for me

November 14, 2019 in Diabetes, Family, Peer support, Real life, World Diabetes Day | 3 comments

Happy World Diabetes Day to you all. This year, the IDF is building on last year’s theme about diabetes and the family.

I wrote this last year, which explained how my diabetes family extends beyond my immediate family. It includes my friends living with diabetes – the diabetes tribe that I found and love so hard. I know that without them, there is no way that I would be living the diabetes life I have now. This tribe of PWD is spread across the globe, but is literally at my fingertips anytime I need them. A day does not go by when we are not messaging about the saucy goings on in the diabetes world.

Tribe

Everyone’s diabetes family looks different. While for some it is their partner, kids, parents and extended family, for others it may include their friends, healthcare team, local diabetes organisation or next-door neighbour. You do you when finding your tribe! Here’s a collage of just some of the tribe I’ve been lucky enough to see this year.

The greatest thing my own tiny little family unit – Aaron and the kidlet – have done for me with my diabetes is to let me do it my way. Aaron was there the moment I was diagnosed, and not once in the last twenty-one years has he tried to make diabetes about him. He will never know how grateful I am for that. Those middle of the night hypos where he was awake alongside me, toasting bread or pouring juice, or the hospital visits or the days interrupted by misbehaving glucose levels were done with not a single mention of how he has been impacted by my diabetes. I never heard him say how exhausted he was the morning after a particularly wakeful night, or how my diabetes has affected him.

But perhaps the greatest support that my family has given me is never making me feel limited by diabetes. Building independence when living with a chronic health condition isn’t only something that is relevant to children and adolescence. Last night, I slept alone in a hotel room and didn’t for a moment feel fear because of my diabetes. I travel the world alone for work – jump on long haul flights, spend twenty-hour days at conferences and day-long meetings – and I do that with complete and utter confidence that I can manage my diabetes alone.

I hear others with diabetes say that their loved ones are worried and fearful when they are away from them, and that in turn makes them feel nervous. I hear of struggles of how to share CGM data constructively and how much others get to be involved in the PWD’s diabetes life. It’s a delicate dance we do here, and Aaron and the kidlet have always been led by what I need. And what I need is not to feel fragile or as though I could break at any moment if they are not there.

I love that they don’t limit me in any way because of my diabetes. And I love that they trust me enough to know that I will reach out when I need to, and that when they ask and ask and ask, all that does is make me feel like a burden. And I love that they never, ever make diabetes about them.

So, they’re the stories that I’m looking for today – the stories of people with diabetes, showing how they have been supported to do their very best. And at the same time, I’m sending a thank you out to these two for supporting me in exactly the way I need.

My people

Anger as grief as anger

November 13, 2019 in Diabetes, Real life | 5 comments

Something flashed across one of my social media feeds the other day, and, had I been in a Looney Tunes cartoon, smoke would have come from my fingers as I screeched to a holt, scrolling back until I found it.

It said this:

Now, I generally hate stupid memes and inspirational quotes. In fact, if it’s not coming from Effin’ Birds, I rarely even pause to read the words.

But this one has had me thinking for a few days, because just a couple of weeks ago, someone on Twitter commented that my tweets were filled with angry emotion and that I should try to fix that. Now, three things: 1. This guy was an anti-vaxxer so he can go get fucked; 2. I wasangry because as well as saying that vaccines are unsafe (lie number 1), he was also claiming that type 1 diabetes doesn’t exist (lie number 2); and 3. I do not take well to being tone policed.

I do come across at times as being angry. But actually, a lot of times there is something more behind my anger. A lot more behind it.

When people see anger, it is the manifestation of 21 years of living with diabetes and 18 years of working in diabetes, and the experiences that have cut to the bone. For me personally, there have been such hurtful and damaging times where the result was for me to head so far underground with my diabetes that I thought I would never recover enough to dare to seek help again. I have heard those experiences mirrored in others’ stories, which we share to gather support and strength from each other. Sometimes, when we speak of our stories, the emotion that comes out appears to be anger. But often, it is actually grief.

When I see HCPs behaving badly online, I think about the times that this happened directly to me and how I felt in the moment, and in the hours and days afterwards. I think about how long it took for me to accept diabetes because it was introduced to me under veils of threats of the horrors I had ahead of me if I dared stray from the demands being placed on me.

All tied up amongst the angry confidence you see is a mess of other emotions, and when I stop and look, which I don’t really like to do, it is undeniable that grief is ever present. I grieve the life I had before diabetes, because even though it was over 21 years ago, I can still remember it. I remember the freedom and spontaneity that came with simply not having to think about glucose levels, carb counts and all the other things that diabetes requires. I grieve the times I didn’t need to think about my mortality. At almost 46, it’s one thing to think about getting older and dying. At twenty-four it was a mind-fuck I didn’t know how to manage.

I grieve the impact diabetes has had on my fertility, which is intrinsically connected to the grief of miscarriages. The anger that I feel about those experiences is especially strong here, but so is the grief, and to be honest, I’m not sure where one stops and the other one starts.

I feel grief for how diabetes has clouded the way my kid has grown up. A mum with diabetes may be the only mum she knows, but she has been forced to understand that sometimes she comes second to diabetes. That grief is tied up with sadness, as well as anger for robbing her of not needing to know what it’s like living alongside diabetes.

Grief is heavy. It weighs me down and has the ability to engulf me in darkness. I feel guilty when it overtakes me, because, didn’t you know, we’re meant to be superheroes. Positive, enthusiastic, shiny superheroes. People with diabetes are football legends, movie stars, marathon runners and we’re not meant to allow it to limit or overwhelm us. I feel guilty for feeling this way when my diabetes life is comparatively easy – access (to care, technology medications), affordability, health literacy are all challenges I don’t have. And yet, I still grieve that it is part of my life.

If I, or other people with diabetes, appear angry, we probably have reason to. But please consider what is behind that anger. I have learnt to sit with my anger comfortably and painfully in equal measure. And I have also come to understand it is rarely there alone.

What I’m for this WDD

November 12, 2019 in World Diabetes Day | 1 comment

All diabetes sucks. That is, in my opinion, just the way that diabetes is. No type of diabetes is better or worse than another; no-one has the ‘bad’ type (because, seriously, there is no ‘good’ type!). No one asks to get diabetes, and when diagnosed, we all need adequate care, support and access to the right treatment, therapies and technologies.

Hopefully, we are all on the same page so far.

As it turns out, diabetes doesn’t discriminate. You can be poor, rich, thin, fat, old, young, smart, not-so smart, run marathons, spend all day binge-watching Netflix, vegan, carnivore, Gryffindor, Slytherin, Hufflepuff or Ravenclaw. Doesn’t matter. Those handing out diabetes cards don’t care. Sure, there are some non-modifiable risk factors that put you at an increased change of getting diabetes, but even then, there are no guarantees.

It’s a wild card condition and it’s crap all around if that’s the card you’re dealt.

Sure, there are differences between the (many, many, many) different types of diabetes. I believe that we should all have a complete and utter picture of our own diabetes diagnosis – we should know which type we have, understand all treatment options available and be supported in whatever we choose to manage best our diabetes. While I don’t, and will never, subscribe to the idea of changing the name of type 1 diabetes, I do believe that people have a right to know which condition they have, because a diagnosis of a particular type comes with other health implications.

But for all the differences, there are a shit load of similarities, and that’s what I am for on World Diabetes Day this year.

I’m for access to care

I don’t care what kind of diabetes you have; you absolutely do deserve to receive care that provides you with current, evidence-based information, targeted to your own diabetes management. I’m for being able to choose the right healthcare professional for you, in the setting that works best.

I’m for the right diabetes technology for the right person at the right time

Diabetes technology is not the be all, end all and won’t eliminate all diabetes burden. But it is a useful management tool, and I support the right to all people with diabetes being informed and able to access the technology that works best for them. I’m for HCPs understanding that there is no one size fits all when it comes to tech, and to them not being the gatekeepers to the tech we want to use.

I’m for user-led innovation

#WeAreNotWaiting for a reason. No one appreciates just what we need from our technology like those of us using it and that is why the DIY diabetes movement is gaining momentum every day. We don’t need anyone to approve what we do, we just need our HCPs to support our choice.

I’m for kindness in diabetes care

Regardless of the type of diabetes, everyone should be treated respectfully, kindly and without bias. I’m for healthcare professionals who work with us to do our best, who understand how challenging diabetes is and acknowledge our efforts, and are allies.

I’m for no judgement

No one should be judged because they have diabetes. I don’t care what kind of diabetes you have; no one deserves to be blamed or shamed for it, or for what comes after a diagnosis. If you have type 2 diabetes, you didn’t bring that on yourself, any more than a person with any type of diabetes brought on any diabetes-related complications.

I’m for funding research

Research is critical when it comes to helping us live longer, better, happier lives with diabetes and there are simply not enough research funds dedicated to diabetes. Research should be all encompassing, considering all aspects of life with diabetes, including (or maybe even especially) the emotional and behavioural side of life with diabetes.

I’m for mental health support

Diabetes is not just about numbers and everyone with diabetes should be offered and able to access a psychologist if they need or want it. Feeling overwhelmed, burnt out, over it, unable to cope, miserable, grief or anger about diabetes is perfectly normal, but you need a way to understand it, and help you live with those feelings. It’s impossible to do it alone.

I’m for peer support

Peer support is a brilliant and can be one of the most useful ways to help us live well with diabetes. It should be available to anyone who wants it. Finding your tribe can be difficult, so understanding where to look, and how to connect is important.

I’m for being united

Yes – there are different types of diabetes and it’s okay to identify as having a specific type. I have type 1 diabetes – that’s my reality. But defending one type, by throwing under the bus is not okay. We can have conversations about the different diabetes without doing that. This is often really evident in the online community, including by some HCPs who actually add to diabetes stigma in the way they jump on the Daily Mail/Channel 10 news/annoying shock jock when they say something completely wrong about diabetes. (Really. When a crappy shock jock makes some comment about people with diabetes just needing to eat better and be more active, responding with ‘Please specify that you mean type 2’ only perpetuates the myth that type 2 diabetes is all about lifestyle. You are adding to the stigma when you do that.)

We can all have a focus, and no one needs to be told what they should be advocating for. Just don’t do it to the detriment of a different type.

I’m for accurate reporting of diabetes

So, further to my previous point: Media, do better. Really. Stop the stigma; stop the sensationalism. Report accurately and factually. And use images that don’t feed into the myths of diabetes. We can’t make it any easier for you – the Diabetes Australia Language Position Statement even has a handy table that is the most perfect guide for you to use when speaking/writing to and about people with diabetes.

I’m for listening to people with diabetes

If the voices of those of us living with diabetes are not the loudest in the conversation, something is wrong. People with diabetes have the answers a lot of the time, we just don’t get a forum to share them. But when we do, listen to us. You don’t get to challenge our personal experiences and tell us that we are wrong, or that things are getting better so we should be grateful, or that it could be worse. Listen and learn.

I’m for #LanguageMatters

The words we use and the way we use them shape attitudes and attitudes of those around us create our diabetes reality. When we have people using thoughtful words, backed up with thoughtful attitudes, supporting and encouraging us, we do better. And conversely when we hear words that are negative and blaming, we can be paralysed into inactivity. #LanguageMatters because it shapes how we see our own diabetes.

I’m for smashing stigma

Diabetes stigma sucks. It can be absolutely paralysing for some people, sending us into inactivity when it comes to dealing with our diabetes, fearing what people with think of, or say to us. Every word you say about diabetes affects us, so use words that don’t stigmatise.

I’m for #TypeAll…

…because we are stronger when we are united. It’s that simple. There are millions and millions of people with diabetes – we have critical mass. If we all came together demanding better care, better access, a stop to the blame and shame and stigma, imagine just how powerful we could be.

The theme of this year’s WDD is once again diabetes and the family, and while my own immediate family is a huge support, walking alongside my diabetes life, I want to broaden the definition of family to include every single person living with diabetes. You are all my family, and families work best when they stick together.

I need your help to talk about sex*

November 7, 2019 in Conferences, Diabetes, Real life | 3 comments

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.