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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.
Click for source of image.
Have you ever heard of an ‘Everesting Challenge’? No? Neither had I until recently. It involves a cyclist climbing a single hill the number of times that’s required to reach a total ascent of 8498 metre to equal Mt Everest. Oh – it gets better. It has to be done in a single ride. It’s known as one of the toughest cycling challenges in the world and I’m exhausted just writing about it. Now I know what it is, I can confidently say that I will never be completing this challenge.
But Neil McLagan is, and he is doing it for a really good cause. He will be raising funds for Insulin for Life (IFL) Global. I’ve written about IFL Global before, and have done some (volunteer) work before, promoting what they do.
As a refresher, IFL Global is a not for profit organisation, raising awareness of the lack of insulin and diabetes supplies in developing countries. The organisation collects and transports insulin and supplies and then distributes them to clinics and health professionals in these countries, as well as offers a complications screening program in places where this simply does not happen.
IFL Global’s mission is that no one should die because they can’t afford or access insulin. Their efforts save lives and help those with diabetes survive and thrive in their communities.
Obviously this is something that I will support – not by starting to do extreme cycling, but by promoting those doing it. And that brings me back to Neil McLagan.
Neil will be undertaking his ‘Everesting Challenge’ by climbing Admiral Road in Bedfordale, Western Australia more than eighty times. Apparently, that is going to take him more than eighteen hours. It’s not the first time that Neil has undertaken this sort of challenge. Last year he rode solo and unsupported from Sydney to Perth raising funds for another diabetes cause. Over twenty days, he spent a total of almost 180 hours on his bike, riding a total of 4011kms (almost 2,500 miles). He says that his ‘Everesting Challenge’ will be one of the most physically and mentally difficult single day challenges. He’s not kidding!
Oh – did I mention that Neil has type 1 diabetes?
He is hoping to raise AUD$20,000, along with a lot of awareness about Insulin for Life Global. Without the work they do, a type 1 diagnosis for many people in the counties where they have a presence would almost certainly mean a drastically shortened life.
This is where you can help.
Look – if you’re inclined to get on a bike and ride it for the equivalent of climbing Mt Everest while fundraising for IFL Global, all the power to you. Please let me know and I promise to throw more than just a couple of bucks your way.
But if you’re like me and would prefer to sit in a café reading about people like Neil, you can still help.
You can make a donation by clicking here. Every donation counts – don’t ever think that $5 won’t make a difference.
And you can follow Neil’s story by liking his Facebook page here and following his adventures, and sharing it with your friends.
Please do consider making a donation to Neil’s efforts. Insulin for Life Global is truly a very important cause and is making a massive difference to the lives if people with diabetes.
Yesterday, Diabetes Australia launched a new campaign called The Lowdown (please read my disclosure statement at the end of this post). It’s all about hypoglycaemia, and designed to get hypos out in the open by encouraging people with diabetes to share the realities of what hypos mean, look and feel like.
I love this campaign because it’s truly about people with diabetes. You’ll see and hear our stories and our experiences, and it will provide a forum for us to learn from each other. (Vote 1 peer support!)
There is stigma associated with hypos. Have you ever had a low and been asked ‘What did you do for that to happen?’. Or has someone ever asked you why you are not better prepared if you find yourself without enough (or any) hypo food on you? Has someone overreacted when you have been low, making you feel that you need to manage them at the same time as dealing with your hypo? Or has someone told you that you shouldn’t be having (as many or any) hypos?
All these things have happened to me and the result was that often I simply wouldn’t say when I was low, or I would downplay the situation. Reading stats such as ‘people with diabetes have on average <insert arbitrary number> of lows a week’ always made me feel like an overachiever, because I could guarantee that I was having more lows than whatever stat was quoted.
One thing I could rely on was that my friends with diabetes never made me feel like lows were my fault, or that I was hopeless because I didn’t have enough stuff with me. More likely, they would silently pass me a few jelly beans or fruit pastilles and leave me to deal with things myself, which is exactly what I need to do when low.
The last thing I need is someone throwing a million things at me (‘Here…I have juice, sweets, sugar, a glucose IV…’)and stressing out (or even worse – saying that Iam stressing them out) and asking every two minutes if I am okay. (I know that people are doing this out of concern. But seriously, the last thing any of us need when we are low is dealing with someone more flustered around us!)
This campaign is for PWD by PWD and that is why I love it. I’m hoping it will help us understand that others are dealing with the same crap around lows that we are. And that it is nothing to be ashamed of. Getting things out in the open is always a good way to reduce stigma and make people feel comfortable talking and seeking the help they may need.
So, let’s talk about lows. Share your story and read what others have to say – remembering that, as always, we are not a homogenous group and you are likely to read a variety of different stories. That’s great! Hypos affect people in different ways. For some they are significant and can be terribly scary, and for others they are simply an inconvenience that just needs to be dealt with and then they can move on. No one’s experience is any less or more legitimate than another’s.
Just some of the people who have already contributed to #TheLowdown2019
How to get involved
It’s easy!
Share a video or photo about how hypos make you feel. Share your post on your social media account (Facebook, Twitter, Instagram etc.) using the hashtag #TheLowdown2019. Please make sure you use the hashtag so we can find your contribution and share it and add it to our website.
If you’re not on social media, you can email a photo of yourself (perhaps holding up a card with one word which best describes how hypos make you feel) to thelowdown@diabetesaustralia.com.au
This page of The Lowdown website explains more.
Disclosure
I work for Diabetes Australia and have had some input into the development of this campaign. I am writing about it because I hope that it will get more people engaged and interested in what the campaign has to say, and encourage contributions.
I have not been asked by anyone at Diabetes Australia to write about The Lowdown here or on any other social media platform (but I’m sure they’re pleased I have).
Transparency is always important to me and I declare everything relevant (and not relevant!) on Diabetogenic. You need to understand and consider my bias when I am writing and sharing. You can always contact me if you have any questions about this.
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.
So, something happened to me in Berlin that hasn’t happened for a while. I had a hypo. Actually, I had more than one.
In one of those perfect storm situations where everything that could go wrong did, I found myself with a red Loop, no CGM, and in a pissed off mood. My Dex sensor had died in the morning and I couldn’t restart it because my transmitter died at the same time. I knew this was coming – I’d had the warnings. And I had a plan. I would use the reset app and get the transmitter going again.
Except it didn’t reset. I checked and double checked that I was doing all that I needed to do, but the bloody thing wouldn’t work. I still wasn’t too stressed – I had a back up transmitter with me, plus I was at a tech conference surrounded by DIY tech nerds (I say this with great fondness).
I put it all out of my mind, and focused on DOCDAY, launching our #SpareAFrown stunt and then getting on with the rest of the day.
Three hypos later (thanks conference hypo syndrome, running around Berlin like a headless chook and more activity than normal), I was exhausted at the end of the day.
But, as I gorged myself on fruit pastilles I realised a few things. I realised that fruit pastilles really aren’t all the tasty and actually a little gag-y when needing to get them down quickly.
Bleurgh
And I realised that the return of hypos made me very annoyed. ‘Three hypos today,’ I announced. ‘This is lousy.’ I complained to anyone who would listen, and probably stamped my foot a little too.
But there is a silver lining. Kind of. As I whinged and moaned about my day of lows, a friend asked if I had symptoms for my hypos. I stopped and thought about it for a moment. ‘Yes…I felt them all,’ I said. ‘You’ve got your hypo symptoms back,’ he said.
I hadn’t thought about that, but it was true. I had felt the undeniable heightened anxiety that indicated that I was low for each of the three hypos I’d had that day. My heart rate had increased a little – not too much, but enough for me to notice. And that feeling was confirmed with a finger prick check.
These hypos were relatively easy to manage – a few of the bleurgh fruit pastilles and all was good. If I had to explain them in one word it would be ‘annoying’. But I did feel exhausted and drained. I was more than just jet lag and conference-tired; I was jet lag, conference and hypo-tired.
By the end of the day, I had my back-up transmitter paired and the two hour warm-up passed. I calibrated and my Loop turned green, and said a little prayer of gratitude to the Loop gods. The hypos stopped, and the next day I went back to ticking along as I have become accustomed after eighteen months of Looping.
And that’s where I’ve been since then. Absolutely one of the best things about Loop is the way that it helps me manage lows. I’m not for a moment saying that the system is so perfect that there is no risk of lows. Of course there is. But these days, I get enough warning and the system does its bit so that a mouthful of juice or a couple of jelly beans is all I need to manage any incoming lows.
That day was the most I’ve thought about my own hypos in a long time. Of course, I think about hypos in general a lot. Being on the PAC for HypoResolve means that I talk and think about it a lot. And other initiatives, or talking with friends with diabetes means that it’s never a topic of conversation all that far from mind.
Which brings me to this…
There is a new website being launched by Diabetes Australia about hypoglycaemia. The idea behind it all is to reduce the stigma associated with hypos and also to encourage people with diabetes to share their own experiences of living with lows. Diabetes can be such an isolating condition – we know that. Hypos are part of the deal for so many of us. And yet, many of us are afraid to talk about it too much for fear we’ll be told that we’re not managing our condition properly.
This new project hopes to bring the conversation out into the open a little more and you can get involved.
If you are an adult with type 1 diabetes or type 2 diabetes on insulin, share what hypoglycaemia means to you, or even just share the word you would use to describe hypos. Email a photo and your words to thelowdown@diabetesaustralia.com.auand you could feature on the new website. Or, share a photo holding the word you would use to describe hypos using the hashtag #TheLowdown2019.
We all do a good job at undermining ourselves at times. We use a four letter word that diminishes what we are doing, and limits the value of our experience and expertise. That four letter word is ‘just’.
In diabetes, we hear it all the time: ‘Oh, I just have type 2 diabetes’ as though it is insignificant and doesn’t have any challenges. ‘I’ve lived with diabetes for just a couple of years’ because we think there is only currency in decades of living with the condition, when really any length of time with diabetes is meaningful.
And we are all about minimising our experience when it comes to the treatment of our diabetes. ‘I just use diet and exercise to manage my type 2 diabetes’ or ‘I’m just on tablets’ or ‘I’m just on injections twice a day’ or ‘I’m just on MDI’. The list goes on and on. And on.
I realised just how ridiculous we have become with this when I heard myself, during a conversation with a fellow Looper, ‘Oh, I just use Loop’. (More on that later…)
At the Ascensia Social Media Summit at ATTD we spoke about this, specifically how there is almost a stigma within the diabetes for those seen to not be using the shiniest and brightest and newest of technologies. It seems that some people almost feel embarrassed if they are not constantly updating their technology toolkit with the most recently launched product.
The idea that anything that we are using today is ‘yesterday’s technology’ is wrong. Blood glucose monitoring can’t be ‘yesterday’s tech’ if it is what most people are using to track their glucose. And syringes and pens can’t be considered the ‘old way to deliver insulin’ when that is how the vast, vast majority of inulin-requiring people with diabetes get insulin into their bodies. Plus, every single one of us using a pump must be able to deliver insulin this way because machines break.
Somewhere in discussions about our treatment technologies, we seem to have forgotten that, actually, not everyone wants to be using the latest kit. And that is okay. There is a spectrum of diabetes technology, and as long as we are on it somewhere and managing our diabetes the way that works best for us, then elephant stamps all around!
There is clearly an over-representation of people at one end of that spectrum dominating on and off line conversations. Spend a couple of hours in a diabetes Facebook group and it would be a reasonable assumption that most people are wearing pumps and CGM. But that’s not true.
And it could appear that DIYAPS is the way to go for most people with T1D, when the fact is that numbers are relatively low. It’s hard to estimate exactly, but there may be somewhere between 2,000 and 3,000 worldwide how have ‘built their own pancreas’. That is just a drop in the type 1 diabetes ocean.
It’s fantastic for those of us interested in this technology to be able to (virtually) congregate and talk amongst ourselves. I learn so much from my peers in these groups – just as I have with all aspects of life with diabetes. The lived experience continues to trump any other way of learning about diabetes.
Of course, that doesn’t mean that we shouldn’t be talking about technology used by limited numbers. Of course we should. We want others to know about it so they can make an informed choice about whether it may be right for them. We want our HCPs to know about it and to support those of us using all sorts of technologies and treatments.
Where it becomes problematic is when there is the misconception that this is the norm. Or when those not using the newest technology feel that they are wilfully doing diabetes the ‘old way’. It’s unfair to think for a moment that those who are not using the tech ‘don’t care’ enough about themselves – especially when decisions are made based on a very good understanding of what is available and what they have decided works best for them.
So, back to my ‘Oh, I just use Loop’ comment. It was directed to someone far more technologically advanced than me; someone who runs all sorts of other programs alongside their DIYAPS. They generate lots of reports and make lots of changes and seem to have far more bells and whistles than I even knew were available.
I nodded as they told me all they were doing and then, when they asked me how I manage my diabetes, I answered that I just use Loop. I heard myself saying it and stopped and corrected myself. ‘I mean…I use Loop. It works for me. Perfectly.’
We don’t need to make excuses for doing diabetes our own way. If we truly have choice (which I know is not always the case), and we have made the choice based on what we believe to be the best possible treatment and technology for us at that moment, then surely that’s a great thing. We shouldn’t ever be made to feel less committed to our own health and wellbeing. That’s not how it works.
DISLCOSURE
I was invited by Ascensia to co-chair the Diabetes Social Media Summit at ATTD (#ATTDDSMS). I did not receive any payment or in-kind support from them for accepting their invitation. I have co-written a piece for the blog, however this was not edited (apart from inevitable jet-lag-induced typos) and all words are those of mine and the piece’s co-author. You can read that piece here.
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