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February 1 and Spare a Rose. The two go hand in hand in my mind. It’s when the diabetes community comes together to support a campaign that gives back in the most fabulous way. For anyone who is new here, or who isn’t sure why the DOC takes on a fetching red hue for the month of February, let me explain.
#SpareARose is a beautifully simple idea that asks people to forgo one rose in the bouquet to their love on Valentine’s Day, and instead, donate the saving from that one rose to a charity that supports people with diabetes in under-resourced countries. That one rose (about $5/£5/€5) covers the monthly cost of insulin.
Since 2013, the campaign has been known as Spare a Rose, Save a Child, and the charity that has received all donations has been Life for a Child. Over those nine years, the diabetes community – people with diabetes, people affected by diabetes, diabetes organisations and diabetes industry – has raised close to US$400,000, providing months and months of insulin to children in under-resourced countries. Plus, it’s raised the profile of the charity. Back when it started, very few people in the diabetes community knew about Life for a Child. Now, it’s supported financially by many, and recognised by even more.
For 2022, the campaign is doing something different and broadening its outlook to support people with diabetes diagnosed as adults, or who ‘age out’ of programs that have an upper age limit. Life for a Child supports people up to the age of 26 years. But of course, type 1 diabetes is for life, as is the need for insulin, diabetes supplies and healthcare.
With this in mind, #SpareARose has changed to Spare a Rose, Save a LIFE to recognise how the campaign will be helping adults with diabetes now, and the new charity partner – Insulin for Life.
Insulin for Life is a global charity and supports people with diabetes in many of the same countries supported by Spare a Rose. It’s so wonderful to know that these people will continue to receive insulin and other diabetes supplies, even once they hit 26 years of age, and beyond. You can read more about the important work done by Insulin for Life here.
Despite these changes, the campaign remains the same. One rose = one month of life. It’s a fabulously simple equation. What also remains the same is that it is a campaign BY the community, FOR the community. Every single person in the Diabetes Online Community can be a part of #SpareARose. We’ve seen tweetchats hosted by people across the world, we’ve seen fun challenges on twitter (remember #SpareAFrown?), we’ve seen videos and vlogs and lots and lots of blog posts. #SpareARose is on Twitter, Facebook and Instagram.
Of course, it’s not just financial contributions that make #SpareARose the success it is. It’s also about the community raising its voice to a veritable roar, and elevating the campaign and its charity partner. If you can donate, please do. If you can share, please do. Every time you share, someone might be click on the donate button, or the share button.
#SpareARose to Save a Life. Is there a more meaningful gift to make in the name of a loved one, a friend, a colleague, or in your own name? I really don’t think so.
DISCLOSURE
I’m so honoured that I get to be involved in this campaign by sharing and promoting it as widely as I possibly can. I have spoken about #SpareARose across the globe and written dozens of pieces to raise awareness of this fabulous grassroots campaign, and anyone and everyone can do the same thing. Really, I have no disclosure. I volunteer my time, along with a number of other diabetes advocates from around the world who drive socials to talk up #SpareARose. We also work with diabetes organisations and industry to encourage donations. If you would like to get involved, please reach out. The more the merrier!
I talk about peer support being life-changing and life-saving. I say those words frequently when asked to speak and write about why peer support is so important to me, and what I hear about the value of peer support from others in the diabetes community.
But does it get more life changing than this?
Today, I’m writing about Jason and Irina, a couple of people I’m lucky to call friends.
They met during the weekly OzDOC tweetchats back in October 2016. Those weekly, rapid-fire hours of diabetes chatter fostered many great friendships. And this particular friendship, formed in between 8.30pm and 9.30pm on a Tuesday evening, led to Jason moving states to be with Irina.
They really did start with a tweet!
This is one of those magical stories where diabetes may be the thing that brought people together, but the connection is so, so much more than that. I’ve been lucky enough to catch up with Jason and Irina a few times in person over the (pre-COVID) years. I remember after the first time I met them, I walked away thinking what a magical couple they are – so right for each other.
It really wasn’t a surprise when I found out that they were engaged. Jason kept me updated with their wedding plans and I was so honoured that my family was invited to share their special day.
And then COVID happened.
There’s no need to talk about how the pandemic threw everything it could at this couple to try to disrupt their wedding. I lost count of the number of times their big day was rescheduled, Omicron being the most recent attempt to try to stop it.
But, as it turns out, Jason and Irina’s yearning to get married was way, way stronger than even the most virulent strain (so far) of COVID. A couple of weeks ago, Jason messaged to say that they were going ahead, with a smaller celebration.
And so, on Sunday of last week, the happy couple got married in what Jason described as a fairy tale.
So much love to the two of you. I can’t take any credit at all for this gorgeous union – all credit for that goes to these two lovebirds. But I can say that it started with a tweet in an OzDOC tweetchat. And that is pretty damn amazing!
Viva gli sposi!
Last year, facing the first Christmas in the times of COVID meant that for many people, celebrations were very different to other years. Our huge Italian family gatherings were put on hold because the idea of sharing food around a table, sitting in close proximity, and basically bringing together thirty or so loud Aussie-Italians, all shouting, because we all believe we need to be heard over everyone else, was considered not especially COVID-safe. Instead, we met in parks for catch ups, physically distanced and masked up.
We also waived gift giving for the year. Instead, I made donations in the names of all my cousins’ kids, and for the Secret Santa gifts we (thankfully) didn’t have to buy. (I remain especially Grinch-like about this particular Christmas activity and you can read all about why here.)
Charities are continuing to do it tough. Not only are fewer people able to donate, but more and more people are relying on their services to get through.
Insulin for Life is once again running its Secret Santa campaign and what a great way to share some love this festive season! All donations make a difference, but to give you an idea, if you can spare $5, you’ll be providing a week worth of diabetes supplies – insulin, syringes, and glucose strips – to someone with diabetes in an under-resourced country.
There’s lots of information available on the Insulin for Life website, but this one statement certainly brings home just how dire the situation is for so many of our diabetes brothers and sisters around the globe: For every two people alive with type 1 diabetes, one person has died prematurely due to lack of basic care.
Let me just share that again: For every two people alive with type 1 diabetes, one person has died prematurely due to lack of basic care.
Even though I have been volunteering for years now for different diabetes-related charities that support people with diabetes in under-resourced countries, I haven’t become immune to feeling shock when I see the stark truth written out in such simple terms.
Every single person can make a difference and improve the situation for people with diabetes in these situations. Donating is not possible for everyone, but there are other ways to help. If you are on social media, you can amplify the cause and share this blog post, or the donation link with a few words explaining how impactful donations can be (use the hashtag #IFLSecretSanta). You can organise a fundraiser at work, school or with friends – doing the legwork to make things like that happen are important and make a huge difference too. You could do a Facebook or Instagram fundraiser. You can pass a hat around at Christmas drinks and ask people to throw in any loose change they have. No amount is too small. Every contribution matters.
I was just chatting with some of the amazing people from the Insulin for Life team, and I was thrilled to hear donations are already coming in from the community. Of course, I’m not surprised. The diabetes community has always been amazing at giving back, as evidenced by the amazing efforts seen over the years with Spare a Rose.
Insulin for Life’s Secret Santa campaign is just getting started. Last year was the first year, and the community stepped up. And in 2021, even after the absolutely horrendous year so many have had, there are people in the DOC showing up to support the campaign once again. That’s what this is all about. It’s what it’s always about.
The very first time I ever saw or heard anyone speaking of an insulin pump was about 14 months after I was diagnosed. It was National Diabetes Week in July 1999, and I attended an event organised by Reality Check, and supported by Diabetes Vic. Reality Check was a support group of young adults with type 1 diabetes. I don’t remember much from the program at the event, but I do remember a woman called Cheryl Steele. Cheryl was living with type 1 diabetes, and she was sharing her story of using an insulin pump and how it had completely revolutionised her type 1 diabetes management. Three moments from Cheryl’s talk stood out for me: the first was that she was able to be more flexible with what she was eating, the second was that a pump gave her more flexibility with being able to sleep in. And the third was that she loved her pump so much that she threatened to cut the arms off anyone who tried to take it away from her.
The first time I heard about CGM was years before we had the devices here in Australia. I read about them in online blogs and in support groups led by PWD in the US. I read stories about how this technology was changing the way the managed their diabetes in ways I could only imagine. I heard about Libre for the first time a number of years later when I met Claudio Pelizzeni at EASD, and he shared his experience of using the device as he travelled the world (without taking planes).
The first time I heard about DIYAPS was at an informal lunch thrown by Medtronic (I think) in 2015 (I think) in Boston (I think). I’m sketchy about the details, but I do remember with great clarity that at the other end of the table was a woman called Dana Lewis who I had seen online and read about, and knew to be amazing, but not yet met in person. She was talking about…well, to be honest, at the time I had no idea what she was talking about. All I could see and understand was that she was doing something that sounded like science fiction. She had a number of devices linked together and there was something totally magical happening.
The first time I heard about Loop (the DIYAPS I went on to use) was on a rainy New York night in January 2017 at a pub in the financial district. I was having a drink with a friend and just as he was taking the first mouthful of his stout he said, ‘Hang on, I need to bolus’, and he pulled his phone from his pocket and pressed some buttons. ‘What the what?’ I asked and he proceeded to explain Loop, how it worked, how he’d woken at between 80 and 100 (4 & 5) every single morning for the three months he’d been using it, and how he was sleeping better than he ever had.
When it comes to technology, it has always been up to me to first raise discussions about different devices or options. After seeing Cheryl talking about her pump, I asked my endocrinologist about getting one and his opening line (and closing line, as it turned out) was ‘They kill people; I’ll never allow one of my patients to use one’. That was the last time I saw him, and I went on the hunt to find an endocrinologist who would support my choice. I started on CGM because I enrolled myself in a trial. I was given my first Libre at a blogger event. I cobbled together my DIYAPS after sourcing what I needed. As brilliant as my HCP team is, they have not been especially proactive about suggesting, or even introducing the idea of, different diabetes technologies. It’s been learning through others with diabetes that has set me on that road.
When I talk about what peer support means to me, it goes beyond moral support and shared experience. It has been the driving force behind much of the way I choose to manage my diabetes. It has been the impetus for investigating if something new might be right for me. It has paved the way for me to start conversations with healthcare professionals to make access happen.
Peer support is absolutely essential for the mutual understanding and the tips and tricks for making day-to-day diabetes easier. And I’ve always said that hearing others’ stories help make sense of my own. But it is about much, much more. I’ve detailed the ‘first times’ when it comes to tech, but there have been so many more moments – moments that have helped make that tech work for me in ways I’d not thought, and certainly not had discussed with me by HCPs.
When I speak with newly diagnosed PWD I ask if they know others. I gently suggest that it may be a good thing to think about – not necessarily straight away, but certainly at some point. I can never repay the debt of gratitude I have for people who steered me in the direction to the tools that make my diabetes life that little bit easier, but I can do all I can to give back and try to do that every day.
It’s been a while since my last diabetes in the wild encounter. It makes sense. I’ve barely left my house for the last 20 months and I’ve not really been frequenting the places where I would usually have those happenstance meetings – cafés and airports. Gosh, remember airports? Remember the queuing and the waiting and the frustrations and the delays and the cancellations? Anyway, I digress…
It shouldn’t surprise me that it was a café that provided the setting for my accidental encounter with another person with diabetes. I was working away, happy to not be in my house, even happier that someone kept bringing me outstanding caffeine. Happiest because I knew that every single other person sitting there was fully vaccinated.
I was doing the sort of work I do best in a café – editing. I get into a zone, concentrate on the task, and just read and edit in a super-efficient and fixated way. I don’t get distracted by anyone around me, and the noise becomes a reassuring beat that I work to. I completely block out anything on around me.
Including the fall rate alert on my Dexcom app. Anyone who uses Dexcom knows that this is a particularly urgent, loud and unforgiving wail. It cuts through absolutely everything. I absentmindedly nodded in the general direction of my phone when I heard it, but didn’t make a move as I was totally focused on rewriting a particularly sticky sentence. (Probably like every bloody sentence in this post…)
And so, I didn’t notice a woman sitting nearby get up from her chair and walk in my direction. I didn’t notice her stop right at my table. In fact, it wasn’t until she cleared her throat and said ‘Excuse me’ that I looked up, realising there was someone right there. She was fixing her mask behind their ears at the moment I looked up at her, my eyes focusing away from my MacBook. I blinked a few times and smiled, and then reached for my own mask before realising it was already on my face. I exaggerated my smile, so I was smiling with my eyes.
There was a slightly awkward moment as I waited, because, look, I’ve forgotten how to engage with people. I probably should have said ‘hi’, but I’ve really lost the art of chatting with people. How do conversations start? So, I was thankful when she introduced herself. And then she asked, ‘Are you okay? I heard your Dexcom a couple of times. I just wanted to check you are okay.’
And that was how I broke my streak of having conversations about diabetes with other people with diabetes I’ve never met before.
Turns out, I’ve missed it. Really, missed it.
We spoke for a while, sharing the usual things, comparing notes about which HCPs we see, and talking about which tech we are using. She is about to start looping, so I answered a heap of questions, remembering that I need to not be too evangelical and gushy about it. I toned down my ‘It’s the best thing I’ve ever done for my diabetes’ (because it is) by adding ‘But, of course it’s a learning curve and can be tricky.’
We told self-deprecating stories about how crappy our attitudes to diabetes have been at different periods. We shared our Covid-19 vaccination stories and compared when we’d be getting boosters. And we spoke about how we felt every time diabetes was mentioned in connection to Covid-19.
Through it all my Dexcom kept squealing and I ignored it because I just wanted to slurp up a diabetes conversation with someone in real life, where all we really had in common was diabetes. It felt like a therapy session, a confession, and catching up with a long-lost friend all in one fifteen-minute encounter.
When our conversation ended, she turned to return to her seat, and I settled back, searching for the sentence I’d been working on. But before I could do that, she turned back towards me and said, ‘I read your blog. I’ve seen you here before…well, used to see you here before Covid…and I wanted to say something. It’s really lovely knowing that there is someone like me who comes here.’
And then I cried. Because I remembered just what it is to connect. How real it feels. It’s why I started this blog in the first place – because I wanted to meet others just like me. Well over ten years of writing about diabetes, twenty years of diabetes advocacy, and that feeling of connecting never gets old.
Lots more diabetes in the wild stories on this blog post from earlier this year.
Gosh, there’s lots in the #DOC-iverse (#DOC-osphere?) about seeing diabetes, isn’t there? Yes, yes there is. Not sure about you, but I seem to be seeing a lot of bright, shiny, happy people (and a pop star or model or two) talking about diabetes, when usually they are pretty quiet about the whole diabetes thing. Which is fine. No one needs to spend their time advocating all about diabetes every minute of the day.
But I wonder if any of the marketing boffins who threw together their messages of inspiration bothered to check to see what the International Diabetes Federation are up to for World Diabetes Day on 14 November. Afterall, that’s the showstopper event of the month, isn’t it? Celebrating the birthday of the bloke who I give thanks to every day for keeping me alive.
A bit of history about World Diabetes Day to help understand that it’s not just about privileged folks with diabetes showing off their high-tech gadgets strapped to their impossibly beautiful bodies. (And yes, I know I sound like the Grinch who stole World Diabetes Day, but I think that understanding the foundation of this day is kind of important because that all seems to get swallowed up in PR spin.)
World Diabetes Day means something. In 2006, it became an official United Nations Day thanks to United Nations Resolution 61/225. At the time it was one of only two official UN health days. But even before that, World Diabetes Day had been going on for some time. It was in 1991 that the IDF, together with the World Health Organisation, created World Diabetes Day in response to growing concerns about diabetes.
Over the last thirty years, World Diabetes Day themes have aimed to be inclusive of people from around the globe, but perhaps there has been a (necessary) focus on how to improve diabetes outcomes for people in under-resourced countries. Maybe that’s why I find it a little galling when it appears that the day is about showing off your latest diabetes kit or shouting to the globe about how diabetes doesn’t stop people reaching their dreams. I love positivity and I’m often accused of being far too Pollyanna for my own good, but having a good look beyond our own privilege is important if we’re trying to get across a global idea of what is going on in the world of diabetes.
This year the theme is ‘Access to care: if not now, when?’. The World Diabetes Day website is full of resources that explain the theme. There are materials you can share to help explain just what access means to different people.
It all seems to be a little bit of a throwback to community initiatives of the past. The diabetes community has been the creators of some absolutely stellar campaigns – ideas that seem to have been founded in similar frustrations about which I’m smashing on my keyboard today. In 2014 there was a campaign that asked us to ‘Put the World back in WDD’ which was in response to there being a very Western focus on World Diabetes Day. Sometimes it feels that some things never change. The #Insulin4All hashtag that was first used to highlight how people in under-resourced countries struggle to access insulin is now most often linked with insulin pricing in the US.
Access means different things to different people, and the materials the IDF has put together consider this. Even if you live in a well-resourced country, with decent subsidised, tax-payer funded (never free!) healthcare, it’s likely that some part of your diabetes care is still difficult to access. It may not be insulin or diabetes supplies that are your access issue – it could be mental health support or different tech solutions.
Here in Australia, thanks to Medicare, the PBS and the NDSS, we have well-subsidised diabetes care. It’s not perfect, but it is certainly better than I hear from friends in other places around the world. But there definitely are still deficiencies in our care. Mental health care is limited – and almost impossible, it seems, to access. Only 50% of people with type 1 diabetes can access subsidised CGM and Flash GM through the NDSS. People in rural and remote areas of the country have far more difficulty accessing quality, regular diabetes care. The outcomes for Indigenous Australians with diabetes fall far behind. As always, people who are disadvantaged in some way are disproportionately affected, and face more difficulties accessing the care they need.
How you choose to celebrate (or not) this month and World Diabetes Day is entirely up to you. You may choose to ignore the ‘official’ theme of the day and focus more on other initiatives and once again, all perfectly okay. Just as YDMV, so may your diabetes advocacy.
But if you are interested in focusing more on access, have a look at the World Diabetes Day website and pledge your support for greater access to diabetes care. Read about the Resolution that was adopted by United Nations Member States that calls for urgent, coordinated global action on diabetes.
Look, I know. UN Resolutions don’t sound nearly as sexy as a six pack with a CGM plastered to it, but it is pretty cool that the WHO and the UN are talking diabetes.
And while celebrating the centenary of insulin, learn where insulin is not easy to come by, and why that is. Through volunteer work supporting both Life for a Child and Insulin for Life, I have learnt a lot about the challenges faced by people with diabetes in under-resourced countries. If you can, please consider making a donation this month to either, or both, charities.
And if looking to the community, it’s wonderful to know that there will be a docday° event on World Diabetes Day that is dedicated to the theme of access. You can learn more about that event here. It’s free to join, and will be live streamed on Facebook – you don’t even need to sign up.
But perhaps a final thought. How great would it be if those with really, massively high followings, (and followings not-only-in-the-diabetes-community), used this time to talk about making a real difference – a difference to people with diabetes who are struggling to access the basic drugs and supplies to actually live with the condition.
Sure, ‘seeing diabetes’ helps raise awareness, but as ever, I ask how much of that actually cuts through and gets out of the community that is already seeing diabetes every single minute of every single day?
A couple of crappy anxiety days have left me feeling a little spent and exhausted. Add to that some low-key diabetes burnout, and I’m wondering if I can somehow leave diabetes out for the upcoming hard rubbish collection in our neighbourhood.
The anxiety was mostly to do with a work thing yesterday which involved a live Q&A about type 2 diabetes remission. When I’m on my game, that sort of thing has me pumped! I know that the discussion will be lively and that there could be some contention in what we’re saying, and I thrive on robust debate.
But right now, I’m not feeling completely on my game. Burnout, lockdown and just feeling tired, combined with feeling a very long way away from friends and colleagues a lot of my work is with, has left me a little weary and downbeat. So instead of the fire I usually feel when I need to deal with something that could be a little controversial and provocative, I was dreading it.
A moment of light came after the live Q&A when I had a call from who wanted to speak with me about the new Type 2 Diabetes Remission Position Statement from Diabetes Australia. After watching, they decided to take the time to reach out to me and admit they were wrong about me. They thought I’d been dismissive and negative about the way they manage their diabetes, when in fact, it seemed I was the complete opposite of that. When I asked why they had thought that of me, they said, ‘You just seem so confident and assertive, and I mistook that for thinking you were really rigid in your beliefs about diabetes.’
It’s funny how we form impressions of people. Sometimes we can be spot on. Other times, not so much. I’ve been totally wrong about people in the diabetes community because once I’ve looked beyond the tweets, I see that there is far more to them than the soundbites that get all the attention.
When people tell me (or, more likely, subtweet) that they think everyone should think the way I do about diabetes, manage their diabetes in the same way, feel the same about the issues important to me or that I think I speak for others with diabetes, I’m genuinely confused. I’ve never said any of those things. The about me page on my blog states: ‘This blog does not provide medical information or advice. I write about my own experiences of living with diabetes but please don’t think that you should take on board what I’m doing and apply it to you. We’re all different and our diabetes varies. Significantly. Get thyself to an appropriately qualified healthcare professional to help yourself out with your own particular brand of diabetes.’
I throw the caveat “my diabetes, my rules” around like glitter and anytime I do speak about diabetes, I am very clear that I am but one person in a very, very large choir, and that the audience should make a point of listening to lots of those voices.
So, it is with no surprise at all that it seems that some corners of the LCHF world think that I completely and utterly condemn their chosen way of managing diabetes. What a lot of rubbish! I can only assume the reason they think that about me is because I have been pretty vocal about the way some in that community respond to others who have different ideas. I call out stigma and shaming, and I call out anyone saying that everyone should follow the same way of eating.
I stand by that. And I stand by it in all aspects of all types of diabetes. If anyone truly believes that there is one way and one way only to manage diabetes, they are very misguided.
In case I was feeling too pleased with myself after that phone call yesterday, I was dragged back down to earth with a shouty email (in ALL CAPS) demanding to know why I don’t advocate remission in type 2 diabetes. Sweetie, I don’t advocate anything other than the rights of people with diabetes to do what they want to manage and treat their diabetes in a way that works for them. I advocate choice. Choice is critical and my passion lies in ensuring that people are given choice.
I love my pump, I love LOOP, but I don’t reckon everyone should be on it. I don’t think everyone should do DAFNE or wear a Libre. I don’t think everyone should just follow what their doctors tell them to do. I don’t think everyone should be eating LCHF any more than I think everyone should be eating a vegetarian or Mediterranean diet. I wouldn’t try a vegan diet because the thought of no bacon makes me weep, but hey, if it works for you and you like it, can sustain it, can afford it and are happy doing it, high five!
Anyway, in a roundabout way, this post is to say that there is a new position statement about type 2 diabetes remission available and you can find it here if you’re interested.
And it’s also to say that forming opinions of people in the diabetes world is perfectly fine and we won’t all agree or love each other (and that’s fine too). I know I’ve formed opinions of people based off one tweet, or one encounter. It’s probably quite unfair on my part, and when I’ve re-engaged with some of those people, I’ve found that they have a lot more going on that just that one idea of them I had. I’m glad I did try again.
My anxiety is a little better today. I weathered yesterday’s storm and came out of it only mildly battered. I’ll call that a win.
DISCLOSURE
I work at Diabetes Australia. I was not involved in the writing of the position statement that was launched yesterday. I’m writing about it because it’s interesting and relevant to my diabetes today and yesterday.
I facilitated an event for Ascensia (disclosures at the end of this piece) last night/early morning and the crappy time was partly (mostly) my fault, because although I sacrificed the Aussies and suggested we draw the short straw in the time zone lottery, I forgot that daily saving would have kicked in for us meaning kick off time was 11pm and not 10pm. That may not seem much – I mean, what’s an hour? – but there is definitely a psychological barrier about doing work after midnight. (Anyway, I digress, and that paragraph has just about put me to sleep).
The reason for last night’s adventures after dark was a facilitating gig for Ascensia’s latest Diabetes Social Media Summit (DSMS). The thing I love about (and why I am so keen to be involved) in these Summits is because they have tacked some difficult topics that are often hidden away.
This one was no different in that we looked to address something that needs more attention – diabetes and women’s health. In my introduction, I wanted to make the point that diversity and inclusion is important when speaking about any aspect of diabetes, and that for us to be truly inclusive in a discussion about women and diabetes, we needed to hear from women who represent all corners of the diabetes world. I particularly referred to needing better representation from women in the LGBTQIA+ community.
The other thing that we had wanted to make sure that we didn’t focus too much on diabetes and pregnancy, because so often that is the only easily information about women’s health and diabetes that can be easily found (and saying that, there does seem to be a bias towards women with type 1 diabetes). Of course, understanding and being aware of how diabetes can impact on pregnancy is important, but it is certainly not the only issue that women with diabetes want or need to know about.
In fact, one of the discussion points was that for some women, pregnancy is not a topic they want discussed. There is the assumption that all women of childbearing age need information about having a healthy baby when that is not the truth. Contraception discussions do not necessarily equal an invitation for pre-pregnancy counselling, and there needs to be some sensitivity in how healthcare professionals in particular raise the topic, and rid themselves of the belief that all women want to have kids.
There is so much more to talk about. So, so much more.
We touched on how much our cycles can impact and influence glucose levels (and a very amusing tangent where we joked about how when we see monthly perfect glucose patterns, they clearly don’t belong to people who menstruate – or people who understand the absolute havoc hormones can wreak on CGM traces).
We spoke about birth control and how the OCP can also make a significant difference to glucose levels, yet many of us were not told about that.
Of course, we spoke of menopause, but only briefly; briefly not because it’s not an important topic (or a super relevant topic), but because we just got caught up talking about other things (and perhaps my facilitating skills weren’t as tight as usual).
And we spoke about how cultural gender issues need to be shown and understood so that the experience of privileged white women with diabetes are not seen as the only experiences.
For me, the central message that I heard time and time and time again was that topics about the very things that occupy a lot of the headspace of women with diabetes are simply not discussed with us. And there is little research to inform our decision making, or even to help us form the right questions to ask. At best, we are given some piss-weak explanation that points a finger at diabetes being to blame. At worst, we are dismissed.
I do wonder when research and diabetes education will catch up. I know that there are some wonderful researchers doing some important work here, but we are so far from normalising discussions about women’s health and diabetes as part of our typical healthcare routines. We’re miles away from getting rid of the preconceived and outdated ideas about women’s sexual health.
Beyond discussing different women’s health matters, we also spoke about just how these discussions fit in the diabetes community. This was a completely unplanned turn for the summit (it was not a topic on the agenda), but I’m glad we had it and I’m glad that I am writing about it. Because of the nature of women’s health, sex and diabetes, there is a lot of taboo, shame, fear, and vulnerability. I know that some of the rawest and most open I’ve been in my writing has been when I have been dealing with moments in my life that were so, so hard and I was so, so vulnerable. When I look back, I sometimes wonder if I was right to hit publish after writing, and perhaps I should have tucked away the paragraphs until I was feeling stronger. Or not published at all. While I have been told that my words have provided some comfort to others facing similar challenges, it left my gaping, open wounds very public and visible.
After writing about miscarriages, I’ve been called selfish for wanting to have a child and potentially passing on diabetes to them. Writing about my fears of passing on diabetes to my child I’ve been told that perhaps I should have thought of that before I got pregnant. Speaking about body image concerns, I’ve been told to toughen up and stop being so shallow. I’ve seen and watched other women with diabetes experience the same thing, and I feel their pain as I watch them navigate the muddy, and sometimes distressing waters.
We spoke about how women are treated in the diabetes community, particularly when we write about struggles and difficulties, and the words and terms that are thrown our way when we dare to share how we are feeling. The ‘angry woman’ trope that I’ve written about before has been directed to many others too.
These discussions are real, and they are necessary. I am one of the loudest, most vocal supporters of peer support and have spoken about the value and importance of diabetes peer support and the online community on stages literally around the globe. Peer support saved me at times when I thought I was broken beyond repair. But it also can be a source of pain and bullying and nasty confrontations, and perhaps we need to have those discussions too so that when someone decides that they are ready to share and be especially vulnerable that they look out for themselves as much as looking out for the community. It’s all very well to want to share to connect and help with our own and others’ isolation but leaving ourselves exposed isn’t easy.
One of the attendees last night reminded us that we could share with selected friends in the community, still allowing for that peer support but under the protection of a safe space. It’s interesting, because until maybe two years ago, I had never experienced how unsafe the community can be to individuals. I’d not felt that before. While I still share a lot, these days I’m more inclined to turn to those trusted friends in the DOC who I know will be honest, open, but never nasty or judgemental.
Online spaces are different for women than they are for men. The misogyny that is inbuilt to even those that we think are allies comes out, often surprising us, as throwaway comments about a woman’s age or appearance. It is ever present in the diabetes community too. I’ve rolled my eyes as some of the most vocal advocates who have loudly aligned themselves as being supporters of women, revert to type, with snide sexist commentary. I’ve seen people in the DOC referred to as ‘angry old women’ for daring to be furious, older than 25 and a woman! I roll my eyes now when I know someone has called me angry. I also know that they’ve just announced to everyone how threatened they are of women who dare to not go quietly, and how they expect us to remain in our place!
There was so much more that we could have spoken about last night. We didn’t touch on body image and disordered eating (and yes, I know that this is not the domain of women only, but this is about us!), we didn’t talk about sex all that much either, even though it is often highlighted as an issue that needs more coverage and information. Again, it’s not because they are not important topics; it was because the fluid conversation took a feminist turn that highlighted a highly biased social and healthcare environment where it is seen as perfectly fine that the needs, and concerns of fifty percent of the diabetes community are barely considered.
Perhaps if we had a more feminist approach to, and model of, healthcare, the misogyny that has meant the topics important to us have not been researched, and are not discussed, could be eliminated. And women with diabetes would not be feeling ignored.
Disclosure
I was invited by Ascensia to help plan the agenda for #DSMSWomen and facilitate the discussion. I have been paid an honorarium for my time.
I probably should stop thinking of my job as ‘my new job’. I’ve been at Diabetes Australia now for well over five years. But for some reason, I still think of it that way. And so do a lot of other people who often will ask ‘How’s the new job?’
Well, the new job is great, and I’ve enjoyed the last five years immensely. It’s a very different role to the one I had previously, even though both have been in diabetes organisations.
One thing that is very different is that in my (not) new job I don’t have the day-to-day contact with people with diabetes that I used to have. That’s not to say that I am removed from the lived experience – in fact, in a lot of ways I’m probably more connected now simply because I speak to a far more diverse group of people affected by diabetes. But in my last job, I would often really get to know people because I’d see them at the events my team was running, year in, year out.
Today, I got a call from one of those people. (I have their permission to tell this story now.) They found my contact details through the organisation and gave me a call because they needed a chat. After a long time with diabetes (longer than the 23 years I’ve had diabetes as an annoying companion), they have recently been diagnosed with a diabetes-related complication. The specific complication is irrelevant to this post.
They’ve been struggling with this diagnosis because along with it came a whole lot more. They told me about the stigma they were feeling, to begin with primarily from themselves. ‘Renza,’ they said to me. ‘I feel like a failure. I’ve always been led to believe that diabetes complications happen when we fail our diabetes management. I know it’s not true, but it’s how I feel, and I’ve given myself a hard time because of it.’
That internalised stigma is B.I.G. I hear about it a lot. I’ve spent a long time learning to unpack it and try to not impact how I feel about myself and my diabetes.
The next bit was also all too common. ‘And my diabetes health professionals are disappointed in me. I know they are by the way they are now speaking to me.’
We chatted for a long time, and I suggested some things they might like to look at. I asked if they were still connected to the peer support group they’d once been an integral part of, but after moving suburbs, they’d lost contact with diabetes mates. I pointed out some online resources, and, knowing that they often are involved in online discussions, asked if they’d checked out the #TalkAboutComplications hashtag. They were not familiar with it, and I pointed out just how much information there was on there – especially from others living with diabetes and diabetes-related complications. ‘It’s not completely stigma free,’ I said. ‘But I think you’ll find that it is a really good way to connect with others who might just be able to offer some support.’
They said they’d have a look.
We chatted a bit more and I told them they could call me any time for a chat. I hope they do.
A couple of hours later, my phone beeped with a new text message. It was from this person. They’d read through dozens and dozens of tweets and clicked on links and had even sent a few messages to some people. ‘Why didn’t I know about this before?’, they asked me.
Our community is a treasure trove of support and information, and sometimes I think we forget just how valuable different things are. The #TalkAboutComplications ‘campaign’ was everywhere a couple of years ago, and I heard from so many people that it helped them greatly. I spoke about it – particularly the language aspect of it – in different settings around the world and wrote about it a lot.
While the hashtag may not get used all that much these days, everything is still there. I sent out a tweet today with it, just as a little reminder. All the support, the connections, the advice from people with diabetes is still available. I hope that people who need it today can find it and learn from it. And share it. That’s one of the things this community does well – shares the good stuff, and this is definitely some of the good stuff!
Want more?
Check out the hashtag on Twitter here.
You can watch a presentation from ATTD 2019 here.
Read this article from BMJ.
Diabetogenic 