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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. 

Do your diabetes appointments take on an eerily familiar routine? When I was first diagnosed, each appointment would open with the words ‘Let me see your book’. My endo was referring to my BGL record, an oblong-shaped book that I was meant to diligently record my minimum of four daily BGL checks, what I ate, what I thought, who I’d prayed to, what TV shows I’d watched and how much I exercised. 

I did that for about the first two and a half months, I mean weeks, okay, days and after that the novelty wore off and I stopped.

I’m not ashamed to admit that I did that thing that pretty much every single person with diabetes does at one point or another – I made up stuff. I was especially creative, making sure I used different coloured pens and splotched coffee stains across some of the pages here and there, little blood speckles for proof of bleeding fingers, and, for a particularly authentic take, OJ, to reflect the made-up numbers that suggested I’d been having a few lows. 

I’d show those creative as fuck pages – honestly, they were works of art – when requested, roll my sleeve up for a BP cuff to be attached, and step on the scales for my weight to be scrutinised. Simply because I was told that was what these appointments should look like, and I knew no better. 

And then, I’d walk out of those appointments either frustrated, because I’d not talked about anything important to me; in tears, because I’d been told off because my A1c was out of range; furious, because I hated diabetes and simply wasn’t getting a chance to say that. And anxious, because looking at the number of kilograms I weighed has always made me feel anxious. 

The numbers in my book, on the BP machine or the scales meant nothing to me in terms of what was important in my diabetes life. They stressed me out, they made me feel sad and hopeless, and they reduced me to a bunch of metrics that did not in any way reflect the troubles I was having just trying to do diabetes. 

These days, not a single data point is shared or collected unless I say so. I choose when to get my A1c done; I choose when to share CGM data; I choose to get my BP done, something I choose to do at every appointment.

I choose to not step on the scales. 

I don’t know what I weigh. I might have a general idea, but it’s an estimation. I don’t weigh myself at home, and I don’t weigh myself at the doctor’s office. I think the last time I stepped on a set of scales was in January 2014 before I had cataract surgery and that was because the anaesthetist explained that it was needed to ensure the correct dose of sleepy drugs were given so I wouldn’t wake up mid scalpel in my eye.  Excellent motivator, Dr Sleep, excellent motivator. 

Last month, I tweeted that PWD do not need to step on the scales at diabetes appointments unless they want to, and that it was okay to ask for why they were being asked to do so.

There were comments about how refusing to be weighed (or refusing anything, for that matter) can be interpreted. I’ve seen that happen. Language matters, and there are labels attributed to people who don’t simply follow the instructions of their HCP. We could get called non-compliant for not compliantly stepping on the scales and compliantly being weighed and then compliantly dealing with the response from our healthcare professional and compliantly engaging in a discussion about it. Or it can be documented as ‘refusal to participate’ which makes us sound wilfully recalcitrant and disobedient. It’s what you’d expect to see on a school report card next to a student who doesn’t want to sing during choir practise or participate in groups sports. 

What surprised me (although perhaps it shouldn’t) was the number of people who replied to that tweet saying they didn’t realise they could say no. it seems that we have a long way to go before we truly find ourselves enjoying real person-centred care.

Being weighed comes with concerns for a lot of people, and people with diabetes often have layers of extra concerns thanks to the intermingling of diabetes and weight. Disordered eating behaviours and eating disorders are more common in people with diabetes. Weight is one of those things that determines just how ‘good’ we are being. For many of us, weight is inextricably linked with every single part of our diabetes existence. My story is that of many – I lost weight before diagnosis and people commented on it favourably, even though I was a healthy weight beforehand. This reinforced that reduced weight = good girl, and that was my introduction to living with diabetes. 

From there, it’s the reality of diabetes: insulin can, for some, mean weight gain, high glucose levels often result in weight loss, changes to therapy and different drugs affect our weight – it’s no wonder that many, many of us have very fraught feelings when it comes to weight and the condition we live with. Stepping on the scales brings that to the fore every three months (or however frequently we have a diabetes healthcare appointment). 

Is it always necessary, or is it more of a routine thing that has just become part and parcel of diabetes care? And are people routinely given the option to opt out, or is there the assumption that we’ll happily (compliantly!) jump on the scales and just deal with whatever we see on the read out and the ensuing conversation? And if we say no, will that be respected – and accepted – without question? Perhaps another positive outcome is that it could encourage dialogue about why we feel that way and start and exploration if there is something that can be done?

It shouldn’t be seen as an act of defiance to say no, especially when what we are saying no to comes with a whole host of different emotions – some of them quite negative. Actually, it doesn’t matter if there are negative connotations or not. We should not be forced to do something as part of our diabetes care that does not make sense to us or meet our needs. When we talk about centring us in our care, surely that means we decide, without fearing the response from our HCPs, what we want to do. Having a checklist of things we are expected to do is not centring us or providing us the way forward to get what we want. 

How do we go about making that happen?

Yesterday, the Australian vaccine rollout was expanded to include children. This follows the TGA approving the use of the Pfizer COVID-19 vaccine for children in the 12 – 15 year age group. ATAGI responded by including children with diabetes in that age group into Phase 1B, meaning they are eligible right now for a jab (provided, of course, they can find one…!).

Already I’m seeing in diabetes online discussions some parents of kids with type 1 diabetes saying their child will not be getting the vaccine, stating that the reason for that decision is because their type 1 diagnosis came shortly after one of their childhood vaccines.

And so it seems a good time to revisit this post that I wrote back in 2017. It has a very long title that could have been much more simply: correlation ≠ causation.

It is understandable to want to find a reason for a health issue. Being able to blame something means that we can, perhaps, stop blaming ourselves. I imagine that for parents kids with diabetes that desire to find something – anything – to point to would come as somewhat of a relief. But there is absolutely no evidence to suggest that vaccines are that reason.

Unfortunately, the idea that vaccines are the root of all evil and cause everything under the sun is a myth that is perpetuated over and over in antivax groups; groups where science, evidence and logic goes to die. Vaccines save lives and they are safe. Anyone who says otherwise is lying.

My sixteen year old is not in a priority group and cannot be vaccinated just yet, but she is ready to go as soon as her phase has the green light. All the adults nearest and dearest to her – her parents, grandparents, aunts and uncle, friends’ parents – are fully vaccinated now, and she knows what a privilege it is to be in that situation. She understands that with that privilege comes responsibility to do what you can to protect vulnerable cohorts in the community. And she also understands that vaccines are safe and they save lives.

If you are feeling unsure about getting a COVID vaccine – for you or your child – please speak with your GP. Don’t listen to someone in a Facebook group. And that may come as a surprise to anyone who knows how important I consider peer support and learning from others in our community, but to them I say this: I listen to and learn from people in the diabetes community because they don’t suggest anti-science approaches. They talk about support, and provide tips and tricks for living with diabetes. If anyone tells me to ignore doctors (because all they care about is getting rich), or to stop taking my insulin (because there is a natural supplement that will do the trick), I would block them as quickly as I could. Science works. Science is why people with diabetes are alive today. Science is why we have vaccines. Trust science. THAT’S what makes sense.

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In the next couple of weeks, our kid gets to line up for her next round of immunisations. At twelve years of age, that means that she can look forward to chickenpox and Diphtheria-Tetanus-Pertussis boosters, and a three-dose course of the HPV vaccine.

When the consent form was sent home, she begrudgingly pulled it out of her school bag and handed it to me. ‘I have to be immunised,’ she said employing the same facial expressions reserved for Brussels sprouts.

She took one look at me and then, slightly sheepishly, said, ‘I don’t get to complain about it, do I?’

Nope,’ I said to her. ‘You don’t get to complain about needles because…well because…suck it up princess. No sympathy about needles from your mean mamma! And you have to be vaccinated because that’s what we do. Immunisation is safe and is a really good way to stop the spread of infectious diseases that not too long ago people died from. And herd immunity only works if…

‘….if most people are immunised so diseases are not spread,’ she cut me off, finishing my sentence. I nodded at her proudly, signed the form and handed it back to her. ‘In your bag. Be grateful that you are being vaccinated. It’s a gift.’ (She mumbled something about it being a crappy gift, and that it would be better if she got a Readings gift voucher instead, but I ignored that.)

Over the weekend, the vaccination debate was fired up again with One Nationidiot leader, Pauline Hanson, sharing her half-brained thoughts on the issue.

I hate that I am even writing about Pauling Hanson. I despise what she stands for. Her unenlightened, racist, xenophobic, mean, ill-informed rhetoric, which is somehow interpreted as ‘she just says what many of us are thinking’, is disgusting. But her latest remarks go to show, once again, what an ignorant and dangerous fool she is.

Her comments coincided with a discussion on a type 1 diabetes Facebook page about vaccinations preceding T1D. Thankfully, smart people reminded anyone suggesting that their diabetes was a direct result of a recent vaccination that correlation does not equal causation.

I get really anxious when there is discussion about vaccinations, because the idea that this is something that can and should be debated is dangerous. There is no evidence to suggest that vaccines cause diabetes (or autism or anything else). There is, however, a lot of evidence to show that they do a shed-load of good. And if you don’t believe me, ask yourself how many cases of polio you’ve seen lately. People of my parents’ generation seemed to all know kids and adults with polio and talk about just how debilitating a condition it was. And they know first-hand of children who died of diseases such as measles or whooping cough.

This is not an ‘I have my opinion, you have yours. Let’s agree to disagree’ issue. It is, in fact, very black and white.

A number of people in the Facebook conversation commented that their (or their child’s) diagnosis coincided with a recent vaccination. But here’s the thing: type 1 diabetes doesn’t just happen. We know that it is a long and slow process.

Click for reference

What this shows is that even if onset of diabetes occurs at (correlates with) the time of a vaccination, it cannot possibly be the cause.

When we have people in the public sphere coming out and saying irresponsible things about vaccinations, it is damaging. People will listen to Pauline Hanson rather than listen to a doctor or a researcher with decades of experience, mountains of evidence and bucket-loads (technical term) of science to support their position.

The idea that ‘everyone should do their own research’ is flawed because there is far too much pseudo-science rubbish out there and sometimes it’s hard to work out what is a relevant and respectable source and what is gobbledygook (highly technical term).

Plus, those trying to refute the benefit of vaccinations employ the age-old tactic of conspiracy theories to have people who are not particularly well informed to start to question real experts. If you have ever heard anyone suggesting: government is in the pockets of Big Pharma / the aliens are controlling us / if we just ate well and danced in the sunshine / any other hare-brained suggestion, run – don’t walk – away from them. And don’t look back.

I have been thinking about this a lot in the last couple of days. I have what I describe as an irrational fear that my kid is going to develop diabetes. It keeps me awake at night, makes me burst into tears at time and scares me like nothing else. If I, for a second, thought for just a tiny second that vaccinating my daughter increased her chances of developing diabetes, she would be unvaccinated. If I thought there was any truth at all in the rubbish that vaccines cause diabetes, I wouldn’t have let her anywhere near a vaccination needle.

But there is no evidence to support that. None at all.

I can’t believe I wrote this piece almost seven years ago. I had turned 40 the year before and as often happens around the occasion of ‘big’ birthdays, I’d started to think about just what getting older means. I didn’t seem to have any feelings of regret or stress that I was ageing though, I was fully embracing just where I was going, the wisdom that I felt, and the absolute excitement of what was coming next. Seven years later, I can see that I was right to feel that way.

At the moment, I’m spending time thinking and reading about menopause and I’m lost in language that is tied up with this ‘next stage’. There seems to be so much loss, regret, and looking back, and feeling scared about what people are losing and leaving behind as the next stage of life hits. But I don’t feel that way. I feel that I can look back with pride and achievement and happiness and pain and love and hurt and longing. There are things I wish I had done differently, but nothing I wish I hadn’t done. I don’t want do-overs. Looking ahead, there is just more to look forward to, possibilities that I have no idea about yet.

This year, with so much about insulin’s centenary, thinking about getting older seems more poignant. Because a short century ago, diabetes was a death sentence. Ageing was only something we could even dream about. What a privilege to wear my age in years alongside my age in diabetes!

And so today, I’m sharing these words from 14 October 2014 (with a few edits) because they still ring true for me. They still feel real. And in seven years time, I’m hoping I revisit this post again, and feel the same way.

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I really should be careful what I read and where I read it! The other day I sat at a gate lounge at Sydney Airport crying as I read an incredibly candid piece on the Huffington Post that inexplicably told my story so honestly and accurately that I wondered if I had written it and not remembered.

And then I read this piece by Rebecca Sparrow and again, floods of tears as I nodded at everything she wrote.

I remember one day sitting with a group of other women all around the same age and we were speaking about skin care products (and then we giggled about boys, plaited each other’s hair and painted our toe nails). I was the only one who had not been using so-called anti-ageing products for a number of years. Because that’s the thing – we’re meant to be anti-ageing and do things to turn back the clock.

I am forty years old. (EDIT: forty-seven) This is not something I feel the need to hide nor be ashamed of. I celebrated last year with a week of parties and lovely gifts. I wanted to celebrate this milestone – just as I do every milestone. Next month, I turn 41 and have every intention of celebrating that too.

Rebecca Sparrow writes that ageing and getting older is a privilege as she tells the story of a friend of hers who, at 22 years has been diagnosed with terminal cancer. This young woman is not going to be afforded the opportunity to age and get wrinkly and turn grey. She is going to die at an age where most of us feel completely immortal.

Ageing is a privilege – I understand that more and more every day. With our daughter growing up – she’s going to be 10 next month – I can easily measure time. We see how she has changed and how, with each passing month, she is becoming an incredible young girl we are so proud of. And we are so lucky to be able to watch this.

I am over the idea that ageing is something that we should hide from and do everything in our power to avoid. I am forty years old. I look older than I did when I was 17 and doing year 12, or when I was 25, or when I was 30 and pregnant, or even than I did a couple of years ago. Of course I do. And if truth be known, I really don’t want to turn back the clock – on how I look physically or how I feel emotionally. With age comes wisdom – it may be a cliché, but it is true. But even more – with age comes experiences and confidence and a sense of self that only seems to grow each year.

Ageing is a privilege. It is normal. And devastatingly, for some, they never will age.

Less than 100 years ago, being diagnosed with type 1 diabetes was a death sentence. Think about that for a moment. If I had have been diagnosed prior to insulin being available, I would have died before I was 25 years old. I never would have travelled, worked in a job that gives me incredible joy, spent so much time with friends and family, seen Tony Bennett live, learnt what an octothorpe is, watched the West Wing, attended my 20 year school reunion – or my 10 year school reunion for that matter, danced on the turf of the MCG as The Police sang, seen the Book of Mormon, read Harry Potter, gone to (and fallen in love with) New York City, met Oliver Jeffers, used an iPhone, gotten married or had a daughter. (2021 EDIT: AND …revisited and revisited and revisited New York, watched my girl turn into the most amazing almost-adult, stood on the stage at conferences around the world, extolling the value of the lived experience, stood alongside three amazing women as we put together the fantastic programme for the 2019 IDF Congress, Living with Diabetes stream, celebrated 20 years of marriage, road tripped across the US with Aaron, visited Graceland, sat in ABBA’s Arrival helicopter, ‘built’ my own pancreas, gone back to Paris another few times, and finally been able to sit on the grass at Place des Vosges, taken my family to Friends for Life, seen the language matters movement grow from the seed we planted into a global movement, lived through (and continue to…) a pandemic…)

My life would have ended before any of these things. Just because I’d been diagnosed with type 1 diabetes. Which makes me understand and feel the privilege of ageing more and more. Every diaversary, every diabetes milestone is worth celebrating.

I want to look forty (EDIT: forty-seven) – I want every battle scar I’ve earned to be visible; every success – and every failure – to be shown on my face; the story of every victory and disappointment to be told. Because these are part of who I am and I am so, so lucky to be here to keep telling my story.

Lucky to keep laughing, crying, learning.
And Zooming. So fucking much Zooming.

There is so much about diabetes that can’t be simply explained or managed. And even if we understand the mechanism behind why something happens, we can’t necessarily fix it!

The intersection between diabetes and anxiety is certainly one of those things. When I am anxious, I go high. That’s the way it is. If I am extremely anxious and have a panic attack, the adrenalin rush sends me to insanely high glucose levels that I know I can’t treat by just bolusing insulin, because there will a swift, aggressive crash at some point and any excess insulin will make it worse. Much worse, because nausea often accompanies how I am feeling in the moment, so the thought of an ‘eat-the-kitchen’ hypo is not great at all. 

I was feeling pretty anxious yesterday. It was a medium level hum that at times swelled to a loud banging noise, and I could sense that there was a topple on effect with my glucose levels. Except there wasn’t. At least not one that could be detected on my CGM graph, which was chugging along in range, albeit at the slightly higher end of that range.

But Loop was working hard to keep it that way. Micro changes to basal insulin showed a Loop graph of constantly changing dosing throughout the morning – at the same time I was feeling loud-banging-noise-anxious. At the moment there was a surge in anxiety levels – and I can pinpoint that moment – there was an accompanying surge in my insulin dose, but only for a little while. Because as my anxiety ebbed and flowed, so did my insulin dosing. All with me doing nothing.

Living with anxiety is one of the things that makes diabetes super difficult. I mean, there are so many things, but anxiety is a next level issue because the very idea of thinking about dealing with diabetes while dealing with an intense moment of anxiety is, quite simply, impossible. But even if I could, there is no way that I would be able to predict just how my glucose levels would respond, or the timing of that response, to act effectively. 

As ever when writing and thinking about automated insulin delivery it comes with a very honest understanding, and acknowledgement of my privilege and knowing that I am extraordinarily fortunate to have at my disposal the technology that can help me in this way. I’ve written and spoken about this a number of times, and I am always acutely aware of the advantage of having a system that takes away so much of the brain power needed to manage such a complex health condition. I say this not as an afterthought – it is an ever-present thought. 

But also ever-present is the gratitude that there is something with me that is providing such incredible insight into just how my diabetes behaves, operates and reacts to different situations. That is, of course, what CGM does. But it’s Loop gives an extra layer of insight – it shows me what my body would have been doing if my beta cells hadn’t gone on a permanent ‘tools down’ almost twenty-three years ago. And gives me an appreciation, and a reminder, of just how difficult diabetes is, and how incredibly challenging it is to attempt to perform the function of a highly sophisticated and evolved body organ!

Anxiety is unpleasant. What it does to diabetes is unpleasant. But having the tools to help manage its impacts on diabetes does help. It’s one less thing to worry about at a moment when it feels that I am being engulfed in a whole world of darkness and worry which is how I felt yesterday.

Now if someone could just magic up a DIY tool to stop the anxiety happening in the first place, that would be just dandy!

Seems as good a way as any…

Last week, I had a drive thru flu shot because that’s the COVID-19 world we live in now.

My GP practice has a super-efficient process set up that involved a phone consult with my doctor earlier in the day, a time locked in for me to get my shot and clear instructions for what to do once I arrived in the practice’s car park.

At the appointed time, my GP called to confirm that I was there, instructed me to expose my right upper arm, and came out to the car park to jab my arm. I waited in the car for 15 mins and then drove off. It was clear, easy and safe.

We’re coming into flu season in the southern hemisphere, and if you haven’t already, now is the time for everyone to make plans for how and when to get your vaccination.  In Australia, flu vaccines are free for all people with diabetes.

I know that some people are wondering why flu vaccine messages are still coming out so strongly even though we’re all meant to be physically isolating. It’s still important for a number of reasons. Obviously, we don’t want people to get COVID-19 AND the flu, and we don’t want people adding to the strain of what is likely to be an over-stressed health system.

Perhaps our physical distancing will have an impact on lowering numbers this year, (which would be great considering that over 300,000 people were diagnosed with the flu last year in Australia alone). But physical distancing is no guarantee that we won’t get infectious diseases such as COVID-19 or the seasonal flu. And that’s why we need to do all that we can to minimise the risk, and potential subsequent outcomes.

The message for those of us living with diabetes is the same when it comes to getting the flu as it does for getting COVID-19. We are probably not more likely to actually get either of them, but if we do, diabetes could complicate our recovery. Plus, managing diabetes with any sort of infection usually comes with a massive degree of difficulty.

The message is clear: get your flu shot. Encourage friends and family to get theirs. It really is the responsible thing to do.

So, today I had a moment and completely lost it. Tears – big, fat tears – sobbing and ugly, snotty crying. I didn’t even try to hide it, which is what I would usually do. There’s no hiding anymore now that we are all living in confined spaces and pretty much on top of each other all the time. (Sorry to the neighbours if they heard too. Inner-city living means not much space between house boundaries…)

I felt a lot better afterwards. Lighter and less overwhelmed. I realised that being all peppy and positive was weighing me down – perhaps that annoying Pollyanna-ish exterior was becoming like an armour.

I really try to not do the whole ‘what if’ stuff. This was something that I worked on for a long time with my psychologist. Catastrophising diabetes isn’t a great idea at the best of times. Adding a pandemic to the ruinous thinking isn’t especially fun.

It’s not surprising that people with diabetes are talking more about how our mental health is faring in the current situation. Living with a life-long condition that is so demanding and has the ability to mess with our minds in the most insidious way already makes us susceptible to feeling distressed. Now, it feels like that has been turned up to eleven.

I’m trying to remember how I learnt to move from thinking ‘what if <insert whichever scenario was terrifying me at that moment>’ to ‘what if it never happens’. It took me a long time to understand how to do that, with varying levels of success. There were always scenarios that made me feel extra level anxious, and it was a struggle to try to be rational. I found that by allowing myself to think about the most worrying, scary and uncertain things for a set amount of time – giving permission, I guess, to the worry and concern – I could then move on.

It turns out that pandemics bring out the catastrophising. The end-of-days thinking is not especially good for one’s already stressed mental health. Thinking about the things that are happening or that could happen is hard. Hard and scary and terrifying.

This week, I’ve kept coming back to how the Diabetes MILES study showed that the number one problem area for people who participated in the study was worrying about the future and development of diabetes-related complications.  There is so much fear of the unknown in diabetes. We just don’t know how it will all play out. We do what we can, we assess and try to minimise risk, we do the best we can with the situation we are in. But we don’t really know what is around the corner.

COVID-19 is that all over again. But with diabetes thrown in for good measure.

Today, I gave permission for the worry and concern to come out because pushing it away wasn’t working. It flooded over me and weighed me down. And then I allowed the tears and the sobs. I didn’t try to stop it, I didn’t try to hide it away. And then…then I could breathe again, and work on the things that help me feel lighter.

So, I’m breathing so deeply. I’m standing in the sunshine. I’m watching our littlest dog run around in circles because she (still) hasn’t realised that she’s not a new puppy anymore. I’m listening to my husband play music. I’m listening to my kid’s laughter because it’s my favourite sound.

And I’m still muttering to myself that this too shall pass. Not yet, and maybe not for some time, but it will. This. Too. Shall. Pass.

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.

The #DOC has brought some brilliant people into my life, and Melissa Lee is one of the most brilliant. I adore her. I adore her humour, her political sass, her intelligence, and she gets me thinking with a lot of the things she shares online. She is SMART, and if there is one thing the world needs right now, it’s more smart people. I first met Melissa when she was leading the Diabetes Hands Foundation, and her compassion and advocacy skills won me over.

She is also extraordinarily talented. She sings like an angel and used to be a singing teacher. Perhaps our shared past-music teacher lives have also drawn us to each other.

Melissa has been doing her #DParodies for a number of years now, taking well-known songs and giving them a diabetes work over. They can be hilarious or sometimes a little heartbreaking. But they are always clever and thought-provoking.

Today, she unleashed a new song. I knew this one was coming; I knew what it was about. And I knew she was going to nail it.

With this parody, Melissa has addressed an issue that is close to my heart: food shaming in the diabetes community. I have written a lot about this, (here, here, here…), most recently here after I was fat shamed following a TV interview I did for work during National Diabetes Week.

I know that not everyone who follows a certain eating plan becomes militant, but I can say with all honesty that the only place where I have seen a coordinated approach to shaming people for choosing to eat a certain food group is from particularly aggressive corners within the LCHF community. Don’t believe me? Start with this tweet. Still don’t believe me? Read the comments on YouTube below Melissa’s video. By the way – the comments are all unoriginal and boring: Suggesting that someone is eating their way to a litany of self-inflicted diabetes complications, or is in the pocket of Big Food for daring to eat a cupcake, or calling someone fat? Tick, tick, tick.

I don’t care what you eat. Really. Your diabetes; your rules. But I do care if you are cruel, stigmatising or just nasty. Melissa is suggesting that people who do those sorts of things calm down. And I couldn’t agree more.

Firstly, let me start this piece by saying #NotAllHealthProfessionals. There: I got it out there upfront because I know that what follows is likely to garner response from a shedload of healthcare professionals that they would never do the sort of crap I am about to write about.

Sure – I know that there are lots of great ones out there. I get that there are champions for our cause; HCPs who genuinely walk alongside us and truly listen to what we say and what we need.

But here’s the thing. It takes more than that; more than just doing the right thing in your own little world. It takes guts and leadership to take a stand, and it takes standing up to colleagues who are not getting it right. And sadly, even the good ones don’t do that enough.

Last week, I shared a pathetic image from a Facebook page that is, allegedly, a satire site. It seems to be administered by HCPs and most of the comments appear to be from HCPs. (You can see it here if you are on FB. I don’t want to share the image on my blog.)

I shared the image with these words: ‘This isn’t funny. it’s not smart. It’s not clever. Even less funny is that it appears this is a page for and by healthcare professionals. The comments are disgraceful. HCPs are not our allies when they do this sort of shit. Instead, they’re contributing to the distress and shame that many PWD feel.’

The thing that upset me most wasn’t the pitiful attempt at humour. Let’s be honest – there was nothing in there we had not seen before. A million times over. This sort of ‘humour’ is in the DNA of every stigmatising diabetes ‘joke’.

What upset me were the comments that followed. At last count, there were about 1,000 of them, most of them applauding the image. Here’s just a selection from the first few:

‘Brilliant – but no one ever heeds this advice.’ (From a nurse who claims 30 years of nursing experience.)

‘This is how I label things.’ (Pharmacist.)

‘Should be on every diabetes med.’ (Exercise physiologist.)

‘The things you wish you could say to patients without losing your job.’ (Nurse.)

‘Love that!’ (Med student.)

‘Hahahah!’ (Podiatrist.)

‘Legit needs to be on boxes.’ (Nurse.)

‘Sorry…I can’t read that small print on account of my sugary eyes.’ (Doctor.)

‘Hahahah. Great quality labelling.’ (Pharmacy student.)

‘Accurate.’ (Physiotherapist.)

‘I love this so much.’ (Doctor.)

‘Damn, should’ve mentioned patient’s McDonalds intake as consideration for Contrave (a weight loss drug).’ (Doctor.)

‘If only we could write that!’ (Nurse.)

‘Control your diabetes or you’ll lose your feeties.’ (Doctor.)

There were more… a lot more. Predictably, the very few of us who questioned just how this was meant to be amusing were told that we needed to lighten up/see the funny side in it/understand it was satire. Or people doubled down to tell us that we were wrong and then went on to school us with further myths about diabetes. Seriously, these people need to get just a touch of originality and try to come up with a stigmatising meme we’ve not seen several million times already, and then come back at us with inventive comments.

I am willing to bet that pretty much every single one of those HCPs will claim to be all about ‘patient-centred care’. I am sure that they believe that they are truly there for what their ‘patients’ need. If pressed, they would probably say that they would never, ever say something like this in front of a patient – because they care about us so much.

That’s bullshit.

A healthcare professional who is truly there to champion PWD would have called that meme out for every shade of stigma that it is. They would not have shared it amongst their colleagues or wanted to print it out for the tea room (as a couple of people said they had done). They wouldn’t have found it funny; they would have found it offensive, stigmatising and downright wrong. And they would have said that, trying to put a stop to hundreds and hundreds of comments.

And those HCPs who realised that it was a load of bullshit and said nothing? They need to look at themselves too. The standard you walk past is the standard you accept. When you say nothing, you’re implicitly saying that it is okay.

It is not okay.

Who remembers the outrage from HCPs last year when #DoctorsAreDickheads was trending on Twitter? (Here you go: I wrote about it here.) Doctors were outraged, offended and irrate, and urged patients to counter the horror stories that people were sharing with positive stories of their own doctor experiences. And what happened? People – patients – did that. Even I defended my HCP team when I wrote my blog post. And I even prefaced this post with a disclaimer, because I know that some HCPs will read this and be all indignant. If that is your response to this… respectfully, get over yourself!

Because, where are those HCPs now? Where are the doctors getting angry and outraged every.single.time we have to endure another stigmatising, cruel, demoralising and downright wrong ‘joke’ or comment? Where are the HCPs standing up at conferences when a presenter makes some comment about how PWD ‘fake’ our BGL results or ‘forget our meters’ for download or whatever other behaviour gets us a non-compliant mark against our name?

So, here is what I want to say to HCPs – every single one of you.

Please, please be an ally. Stand up for us. Listen to us. Don’t talk over us. Don’t tell us that our experience is wrong or doesn’t matter. Don’t walk by when your colleagues do this sort of crap. Don’t minimise or delegitimise us by saying that it’s ‘just a joke’ or promising us that you wouldn’t do this. Because enough of your colleagues do. (Also, don’t @ me and tell me how much better you are because you are a leader and don’t do this kind of shit or do call it out. That’s great. And thank you. This isn’t about you. But you still can do something.)

We need you to do this for us. Or rather, along with us. Because when we do it alone (and most of the time, it is us doing it alone), we are dismissed as being too emotional or not being able to understand the humour. As much as I wish it was enough for our comments to resonate, it isn’t. So, we need allies. We need you.

It takes courage and leadership. But if you truly, truly want to be there for us for what we need, then you need to step up. Please be an ally. Please.

P.S. There were a couple of HCPs who commented on the FB page that obviously, this meme was about type 2 diabetes and not type 1 diabetes. If you are one of those HCPs who insists on doing things like that, ask yourself just how much you are contributing to the misinformation and stigma about type 2 diabetes. We know that T1D is autoimmune/not preventable, but when you use a broad brush to correct comments about diabetes with ‘You mean T2D‘ you are not really helping. In fact, you’re just adding to the misinformation by suggesting that all T2D is preventable and that is not true. You know that. Do better.

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