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I’ve been working for diabetes organisations now for coming up to eighteen years and unsurprisingly have accumulated some truly fascinating things along the way.
Including a photocopy of a 1972 edition of ‘Victory’, the ‘Official publication of the Victorian Diabetic Association’ (now known as Diabetes Victoria).
I was flicking through it the other day and came across this gem:

Apparently, ‘the wife’ is the reason her husband either becomes overanxious about his diabetes or instead, takes charge and continues his existence as a captain of industry, putting diabetes in its rightful place. That’s right, it is ‘the wife’s’ fault her husband becomes a blithering mess unable to look after himself and incapable of doing more than curling up in his favourite chair, wearing his favourite slippers and cardigan while being (over) parented by his partner. This must be because 1972 wives have some sort of enchantress powers that conquer any man’s autonomy or decision-making abilities.
1972 wives sound magical and awesome. How do I become one?
All joking aside, if we remove all gender references in this piece and have it just about the way in which others treat us and how that influences our view about our diabetes, there is, perhaps, an element of truth to the thinking behind it all.
What I need (and am fortunate to have) is a group people around me to support me as I make decisions and diabetes the way I want and need. They back me by being there with a shoulder to lean on or an ear to listen if I ask, but never take over or try to ‘fix’ things.
This sort of support helps us know that we can do this. I may never think of diabetes as ‘an amusing inconvenience’ (there is little to be amused about a lazy pancreas), but I will never see myself as neurotic or incapable.
I certainly don’t want a 1972 wife (or a 2019 partner, parent, sibling, friend, colleague, healthcare professional, associate or anyone else) dictating how I feel about the health condition that lives in me. I do want them to laugh with me at this ridiculousness, though. And promise me that they will continue to keep being exactly the way they are right now! (And maybe joining me when I tell off anyone who suggests – even for a second – that I inject in the lav adjoining the boardroom.)
I am blunt and I am direct. I am often criticised for my lack of finesse and accused of having the subtlety of a sledgehammer. Guilty, guilty, guilty as charged.
But I have always believed that the best way to address any issue is to get it out in the open, talk about it and normalise it so people feel comfortable discussing it.
This has resulted in some uncomfortable times. There was the time I spoke at a healthcare professional event about some research we’d conducted on diabetes-related eating disorders, and the subsequent information resource we’d developed about the issue which provided information for people could seek help. A dietitian stood up during the question time and told me in no uncertain terms that this work was irresponsible and that we had just written an instruction manual showing people with diabetes how to develop an eating disorder. I reminded her of the research I’d just presented which showed that over 60% of the women in the survey had explicitly stated that they had omitted, altered, or restricted insulin for the purpose of weight loss and suggested that no one needed an instruction manual – we already knew how to do it. I also pointed out that over 80% of the women had never had a conversation about it with a HCP, so perhaps it WAS time we started talking about it so people knew how and where to get help.
Then there was the time at ADATS when I introduced the concept of DIYAPS to pretty much everyone in the room, terrifying them all. That was fun. As was the bit where a couple of endos suggested that I needed to be ‘reined in’.
After writing a booklet on diabetes and pregnancy. After being awarded a grant to publish it as a national resource, we sent the booklet out to all women with type 1 diabetes aged 16 – 40 years. The response we received from a bucket load of parents was that they did not want this issue raised with their daughters and how dare us for sending them information suggesting they have sex and get pregnant. (For the record – the booklet did neither of those things. It did, however, reassure young women with diabetes that a healthy pregnancy was possible, and that pre-planning said pregnancy was the best way for that to happen.)
When I was at Diabetes Vic, my team developed two resources about diabetes and sexual health and contraception (one for young women and one for young men). We knew that this information was desperately needed, and that young people wanted to know about how to be safe having sex, but there were concerns that the response from some quarters would be that we were promoting promiscuity. (Surely that word should only be accompanied by someone who has teleported here from the 1930s.)
And, of course, the pieces I’ve written on sex and diabetes have elicited a huge discussion about how they had never before even seen anything about diabetes, women and sexual health – and, it turns out, it was the first time many women had even seen the topic raised.
There is so much more: I write about pregnancy loss, because as hard as it was to live through it, it was harder to feel alone. I write about the emotional toll of diabetes because too often all we hear about is the impact of numbers. I write about burnout because it is a reality for me – and so many others.
These taboo topics are elephants in diabetes rooms around the world and it’s time we did more than just acknowledge them – we need to change that.
Disordered eating behaviours, concerns and problems with sex and sexual health, diabetes-related complications, mental health conditions are facts of life. People experience them. There is nothing shameful about any of them.
NOT talking about them makes them seem shameful.
How do we get to a point where those topics that have been so difficult to broach previously become as everyday as a conversation about a broken arm in a cast; that when we need to discuss something about our sexual heath or mental health with a health professional we are as comfortable as talking about an earache?
I saw this tweet the other day:
Diabetes work is often invisible, too. Even though people may sometimes see us completing some of the daily bits and pieces we have to do, so much of us staying upright is done behind the scenes, unseen by anyone.
Not too long ago, a (non-diabetes) HCP said to me that they thought it was incredible how people with diabetes just get on with things and do them without any effort. He had just heard me speak about day-to-day living with a chronic health condition such as diabetes. ‘I had no idea what was involved. I see lots of people with diabetes and just had no clue of all of the little things that just seem to happen,’ he said to me. ‘We really have no choice,’ I said to him. ‘We just have to do it all.’
And most of it is largely invisible.
Every day we fill up that dispenser so we can do what has to be done.
I know as well as anyone that there are times that things almost run dry. But of course, we can never truly run all the way down. Regardless of how exhausted, burnt out, frustrated, emotional we feel about diabetes, we still do what we need to do: Pump lines get changed, cartridges get filled with insulin, CGM sensors (eventually) get replaced, calibrations (sometimes) happen, hypos get treated, batteries get changed.
We still need to make sure there is always just enough for us to push that last bit out and lather up – so that we can treat when low or give insulin when high. Those are the days that there is barely enough in the dispenser to create much lather at all.
We can ask someone else to remind us to fill up the dispenser and help us along our way, and that help is always appreciated. How incredible it is when we have someone picking up our supplies, or throwing out the waste from a sensor change, or reaching for a full bottle of insulin for the fridge! But there is so much more to it that just the physical jobs.
When washing our hands, that lather is more than just the soap and water. Mostly, it’s the effort of us rubbing our hands together. No one else can do that bit for us and diabetes is so much the effort we put in on top of those physical tasks. It’s a lot of work to maintain the right headspace in order to actually feel capable. No one else can do that part for us really. We just do it and do it quietly.
Imagine if every time we did some diabetes task we announced it. In the last half hour that would be:
- I silenced my CGM alarm
- I silenced it again
- For fuck’s sake shut up. And alright, I’ll calibrate!
- I checked my blood glucose
- I entered the number in my Dex app
- I checked my Loop app while my phone was open
- I had two fruit pastilles because I realised I’d over bolused for the jam drop I’d only half-eaten a little earlier
- I replenished the fruit pastille stash in my bag
- I checked my Loop app again
- Bloody hell – Loop now telling me that my pump battery is low
- I changed the battery on my pump
I know I bang on about diabetes a lot, but can you imagine if I actually broadcast every single time I did something to attend to my diabetes. (I truly think there are some people who believe I do that. How disillusioned they are!)
Almost twenty-one years of living with diabetes and as that number gets bigger, I find myself wondering if I will ever work this thing out and get good at it. I may look like I have it together most of the time, but honestly, most weeks I am merely one push of the dispenser plunger away from being completely, utterly empty.
This came up on my Insta feed yesterday:

Jasmine Dowling is an Australian designer and digital content creator. She takes the most beautiful photos, and the way she maximises the Queensland sun in her photos is often breathtaking.
I’m fairly certain that when Jasmine sat down to do the above design she wasn’t thinking about diabetes. But I thought of nothing else when I saw it.
The negative self-talk that seems to move in when our functioning beta cells move out can be so destructive at times. I know that most days, I feel that I could, should, must be doing more even when it really is enough.
So, I’m leaving it here as a reminder – to me and anyone else who needs it. We are doing what we can. And that is enough.
Last Friday, I took part in my first Facebook Live chat as part of The Lowdown campaign. (If you’ve not watched the Facebook live chat, you still can by clicking here.) I was joined by former AFL footballer, Jack Fitzpatrick, who has lived with type 1 diabetes for about six years.
Jack and I could not be more different. He speaks a language of sport of which I know barely one or two words. His perspective of the first few years of his life with diabetes are very, very different to mine. He talks about how, thanks to his workplace – and AFL football club – he had a doctor and dietitian working with him every day. He worked out how to fit diabetes into his job with the help of HCPs that most of us see a few times a year at the most.
But there are also similarities. We were both diagnosed as young adults and we had to learn how to manage a very demanding health condition at a time when there is far more fun to be had. On Friday, we spoke about hypos, and his stories made complete and utter sense to me.
The Lowdown campaign is a beautiful story telling initiative. That’s what has happened over the last week – PWD told their stories about hypos and time and time and time again, there were comments from other PWD who recognised that story. We recognised the way our heart might beat faster, or the confusion that heralds plummeting glucose levels. We nodded as we heard about people over-treating, because in the moment, that is all we feel we can, and must, do. We smiled at the silly things we read others do when low, (hello, HypoBoy).
Every time I saw a comment from someone who said a version of ‘That happens to me too!’ I felt tingles. That connection comes only when we feel that we are not alone, that someone understands what we are going through. I get it – it’s why I read diabetes blogs and listen to diabetes podcasts. I’m looking for real life, authentic stories, the lived experience.
As I said in the Facebook live chat, this campaign is a form of peer support. Because that is exactly what is happening – people with diabetes supporting each other, using stories that resonate, make us feel like we part of a tribe, helping us understand that our way of dealing with something is just as legitimate as anyone else’s.
We all do it – we all seek out those that stories mirror our own. That doesn’t mean that we have to think the same way or do the same things or feel the same way. It’s not about there being a one size experience or everyone having the same thoughts and ideas. In fact, the diversity in what we see and read is important because it means that we can find the ones that we connect with most and help us better make sense of our own experience.
Too often, the story of diabetes is told using statistics. That is the way researchers and healthcare professionals and governments talk. But for those of us actually living with diabetes, it will never be about the one in how-ever-many-thousand. We don’t want to hear how the dice is likely to roll or how the numbers keep getting more and more stacked against us the longer we live with this condition. We don’t connect with data, statistics or numbers. We connect with people and to their stories. That’s what we need to tell. And that’s what we need to hear.

Today I’m talking about cervical screening checks. Because yesterday, I had mine. (Oh, did I mention that I’m an over-sharer?)
Let’s be honest. No woman ever gets excited about having a cervical screen. At least, no woman I’ve ever met. Maybe if they handed out lollypops at the end, (or something more applicable for the area being screened?), we might get more excited, but as things go, rocking up for our scheduled cervical cancer screening is not really one of those things we anticipate with glee. (Or maybe you do. And if so – good for you!)
My OB/GYN – who is now purely my GYN because the OB part of me has shut up shop for good – called me (well, his receptionist did) while I was in Berlin. The call came at some ridiculous hour of the night, so I ignored it, rolled over and went back to sleep, making a note to return the call when I got back to Australia.
I knew that was I was well overdue for a check-up – I’d been thinking I needed to make an appointment and was also a little confused about the new screening procedure and process. It’s changed since my last screening. I knew that pap smears were a thing of the past and that a new cervical screening check had replaced it.
But I didn’t really understand about the change to timeframes or just what the new check was all about. So, I made, and prepared myself for, the appointment.
I’ve known my gynaecologist for a long time now – about seventeen years. He knows diabetes and pregnancy which was why I started seeing him. He was the one who I went to for all my pre-conception care and then he was my OB each time I was pregnant. He has seen me at my absolutely lowest as I dealt with the heartbreak and trauma of recurrent miscarriages. But he also was the one who handed me our daughter the day she was born, so he has seen me at my most elated, too.
This time, I walked in with absolutely no intention of talking about babies, other than mentioning that mine is now fourteen which obviously makes no sense because surely I am still only 36 and I had her when I was three days shy of 31. (This is a lie. No one believes it.) I was there to talk about how hopeless I was because I’d completely neglected thinking about needing a cervical screening check. And have the said check.
There is a reason that I continue to go back to the same doctors for seventeen years. It’s because they don’t judge, and they treat me as though I have a life outside the body part in which they specialise. (Which is good when seeing this particular doctor, because I am more than my vagina.) Before getting to the reason I was there, he asked me how I was and what I was up to. We spoke about the work I was doing. He asked specific questions about my health and asked me how I found the Dexcom that was clearly visible on my upper arm. We started to talk about DIYAPS, and how that was working for me. He wanted to know about my family and how they were, and what sort of a kid the tiny baby he delivered on that day back in November 1998 had become. (She reads a lot more now. And has more sassy opinions.)
Then I mentioned that I had been a little remiss in organising my cervical screening check and started to say how I was usually a lot better at this and that I always, always make sure my diabetes screening was up to date and that I NEVER miss an appointment with my ophthalmologist, but that this one had slipped through the cracks. He didn’t shake his head and tell me to be better. Instead he said, ’It’s great you’re here today. Life is busy and there is a lot going on.’ It may not be healthy to love your gynaecologist, but after that comment I remembered why I had always been so fond of him.
He then explained how the new screening worked, and why the changes were made. He spoke about what was involved today and how long it would take for me to get the results. ‘We call you whatever the result,’ he said and I realised that was a really useful piece of information. If I had a missed call from his rooms in seven to ten days’ time, not knowing that calling everyone was routine, I would have worried that something was wrong until I’d been able to speak to someone.
He started by taking my blood pressure. ‘Is your blood pressure usually okay when you have it checked?’ he asked. ‘Yep. Always fine. Why? Is it high?’ My heart rate was slightly elevated, and I was anxious. (See point above about no one wanting to have this particular screening check.) ‘A little,’ he said. ‘But I know that you’d be anxious about this. It’s nothing to worry about if you have recently had your BP done and it was okay.’
I have always appreciated how this doctor, when asking questions, explains why he is asking them. ‘Any changes to your period, bleeding in the middle of your cycle, or bleeding during or after sex?’ He asked, going through what each of these things could mean.
The rest of the examination took all of about 5 minutes. He explained everything that was going on, and I distracted myself during the bit where I had a piece of cold metal inside me by asking about the HPV vaccination.
I’m not sure if that was necessarily the best time to have a conversation about why it’s important to have this vaccine (there’s more about it here, including who the vaccine is for and when they should have it). He told me it protects against the types of HPV that cause around 70% of cervical cancer, as well as other cancers (vaginal, vulval, anal, throat and penile), and protects against genital warts.
We then both had a lot to say about our frustrations with anti-vax lunatics and their anti-science idiocy, and why Pete Evans should be sent to an island (one other than Australia) and left to his paleo devices where he can’t harm anyone else. (Thankfully the cold metal instrument has been removed, and I was covered up by a sheet again by this stage. We were both getting a little ranty and I was waving my hands around; being completely exposed could have made that awkward…)
When I was dressed and sitting opposite him again, he asked if I had any questions. I had a few, and he answered them clearly. I mentioned again that I would make sure that I had future checks as scheduled and he suggested I be less hard on myself.
He’s right, of course. Diabetes alone puts so much pressure on us – as well as all the screening we need to keep on top of there is the daily stuff too. (I love that he understands diabetes and realises just what it takes to deal with it.) Add to it the other things we need to stay on top of – such as screening of our lady bits – and it’s no wonder that sometimes something will slip through to the keeper.
And of course, there are a number of other reasons that we delay or postpone having this particular check done. For some women, there can concern or embarrassment. Even if we know that the actual procedure takes only minutes, it’s not especially comfortable. And then there are concerns about the state of our lady garden. According to a 2018 survey by a British cancer charity, a third of women won’t make an appointment for a cervical screening if they haven’t waxed or shaved their pubic area, and are embarrassed about how their vulva looks. I could scoff and say how ridiculously shallow, but you bet that I have had that concern too.
I know that this, as with all screenings, is important because early detection of any changes means early treatment and that is always the best approach. And so, I’m trying to stop beating myself up for the fact that I was overdue getting this done and instead pat myself on the back for actually having made and kept the appointment. I’ve done my bit. I now wait for the results and then take it from there.
More information about cervical cancer screening here.
Last month, I clicked over eighteen years of wearing an insulin pump. Every day in those 18 years – that’s over 6,500 days – there has been a cannula inserted into the skin on my stomach, sides or thighs. And for pretty much all of those days, a pump has been housed down my bra. (When I first started pumping I used to wear it on my waistband, but tired of the attention that drew so shoved it away. Out of others’ sight; out of others’ minds.)
Add to that there is the CGM I have worn on and off for the last eleven or so years – and for the last five, it’s been there pretty much every day. Oh – and about 18 months ago, a RileyLink also became a permanent fixture, also shoved down my bra. It’s an out-and-out diabetes tech party down there.
So you would think that after all this time, it is no big deal seeing, feeling, or acknowledging these devices and how they are housed on this body of mine. You would expect that I would be completely and utterly accepting of the devices by now, and how to accommodate them on my body.
And yet, I’m not.
Now, I need to say that I love my diabetes technology. I understand that it makes my life with diabetes much easier. I also understand – and never forget for a moment – just how lucky I am to have it. I absolutely wouldn’t be without it and I know that for me it is the best possible way to manage my own diabetes.
But thinking for a moment that I forget that I’m wearing these devices is wrong.
I find it fascinating when I hear people say that for their child/partner/friend (or for HCPs, PWD they see) that their diabetes device is just part of their life, it’s normal, it’s just part of them.
No. It’s not. My devices are additions because a bit of my body is broken and doesn’t do what it is supposed to do. We may not make a fuss about it or just seem to tuck them away (or leave them out on show), but do we really consider them just ‘part of our body’?
I don’t think I will ever be fully comfortable with how they feel or look on me. There is some serious body image stuff going on when I see the tape gripping these devices on to me. When I throw on a bathing suit for a day at the beach, the devices I need to consider and the way they are on show make me feel painfully awkward.
They are a reminder every time I see them – every time the tubing nearly gets ripped out when I go to the loo or catch it on a doorknob; every time I get too close to the doorframe and knock my CGM; every time I’ve put on a bra that doesn’t really work and my RL falls out; every time my pump and RL shift a little and become starkly obvious – that it is not normal to wear a pancreas on the outside of one’s body.
It’s a reminder every time my kid snuggles into me when she is sitting on my left side and leans her head on my arm. ‘Your diabetes is sharp’, she says to me and we have a little giggle as she wriggles around until her head finds real estate not taken up by Dexcom. Or in bed at night, as I go to roll over and find I can’t move because my pump has found its way under my husband. It turns out that it’s not just me needing to accommodate my external pancreas, making me even more conscious of its presence.
The beeps and buzzes and vibrations that these devices emit means I make noises different to others. The way that sometimes it’s just impossible to ignore the constant reminders and just accept it all as ‘part of me’.
Perhaps the only time I get close to not feeling the constant reminders of my tech is when the people around me are also wearing these devices. We spy a CGM on someone’s arm, pump tubing winding its way out from under someone’s top or hear the tell-tale beep of some sort of diabetes technology and we can ignore it because it’s not our own and everyone else is doing it too!
We do a lot to normalise the realities of diabetes. We do that for our own benefit, but I know that I also do it a lot to limit concern of those around me. This is one of those things I do to minimalism how diabetes affects me and to normalise something that is…well, not normal. I would never make a big deal about how I feel about wearing this technology because I sound whingy and precious, (possibly the alternate title for this blog post). But don’t for a minute think that you can dismiss it as not a big deal or just part of us. Because it’s not and never will be.

Devices on the beach.
Our Tupperware at home is housed in a large lower drawer in the kitchen, loaded with different sized containers and their corresponding lids. Everything fits in there, but it has to be organised a certain way otherwise it’s just a jumbled mess. There are times that we forget the way it needs to be sorted, or we just don’t have the time or energy to carefully stack the different pieces as they need to be, so random bits of plastic get shoved in there however they fit, and we find ourselves pushing the drawer shut, hoping it closes and doesn’t jam.
And, inevitably then when we get more Tupperware, we need to unpack everything and start again, trying to rearrange the already overflowing drawer, finding room for more, when really, we should think about getting rid of some of it to make way for the new. Or – even better – stop bringing any more plastic into the house.
We do that with life too. We have our family, friends, work, social life and latest Netflix binge and everything else to try to fit into the limited space we have. And those of us living with a chronic health condition have to find room for that too.
The room for my family never gets shifted around because that is what keeps me grounded and anchored and is the most important thing in my life. I probably should find more room for them, and I do when I can. But it never feels enough.
I find room (most willingly) for my peers and the friendships I have formed thanks to diabetes, happy to arrange and move other things around to accommodate these friends because while they may take up room, they actually help reduce the burden and anxiety of diabetes – meaning that burden takes up less room.
The thing is, it’s never about finding room for ‘just diabetes’, because there is always so much around that. I have to find room for all the other bits and pieces I need to do to try to keep demanding diabetes contained. And on top of that, I need to find room for the emotional toll which varies from day to day. Sometimes that needs a lot of room, other times, it can squeeze in between other things.
I need to find room for all the things I have to remember – the doctors’ appointments and those relationships. I find room for the admin of diabetes – prescriptions, supplies, drivers checks, complications screenings…That space is like a filing cabinet – full, overflowing and, most of the time, in need of a good clean out.
I find room for numbers and results, and watch them trickle down into the cracks, filling up the spaces because those numbers connect me to my diabetes management and remind me that I need to do more, or that I am doing enough. I need to find more room for telling myself that I am doing enough – for the positive self-talk rather than the negative.
I’m trying to get better at getting rid of stuff, because not everything I’ve found space for needs to be in there. There are things that were once important that are no longer needed. There are bits and pieces that were once whole, but are now like a Tupperware ‘Heat and Eat’ container without the lid. I should get rid of those, along with the things that I’ve been finding room for that are negative and only serve to cause me hurt, pain or anger. Often they are hard to let go of – I feel a sense of failure because perhaps they didn’t turn out the way I wanted.
Back in January, (that seems like an age ago, right?), I decided my word for the year was going to be ‘reset’. The idea was that I was going to try to be more meaningful in my decision making and in what I spend my time and attention on. I’ve done that to a degree this year. A couple of instances of making conscious decisions to stop and evaluate something and make a decision that has felt deliberate and measured.
It’s felt good. I’ve tried to let go of the guilt that seemed to take up so much room. I am never going to be perfect; my diabetes is never going to be perfect. I am never going to be the perfect anything. And that’s okay. Because no one else is, either. I’m doing my best to stop worrying if others think I have disappointed them, because really, most of the time I am doing the most and the best I can and maybe it’s not really my problem if I don’t measure up. I’ve tried to let go of the ‘what ifs’ that sometimes became the soundtrack to my day. Posing questions about how things could have been different or how things may turn out was pointless. I consciously have thrown out those thoughts.
Metaphorically, I stood back and cleared out some unnecessary Tupperware that was broken and doing nothing for me. It felt good. I should have done it a long time ago. I realised there were things in there that I was holding onto for no good reason. It allowed me to rearrange a few things, refocus and reset.
Trying to fit diabetes into what is already an overcrowded space is really tough. I often wonder how much extra room I would have if so much of my efforts were not taken up by diabetes. What do people without diabetes do with all that room? I think that perhaps my low tolerance of rubbish behaviour is partly due to not having room to deal with it. Or it could just be that I have no patience. That’s probably more like it.











