People with diabetes know that many times when we have a health concern it is dismissed with phrases such as ‘Oh, that’s more common in people with diabetes’ or ‘It’s part of living with diabetes’. Sometimes, that may be the case, but other times, it absolutely is not, and playing the diabetes card is like a get out of jail free card for HCPs to not do the investigations that they should to confirm diabetes is indeed responsible, and to eliminate anything else. Our concerns are ignored, and sometimes not believed. Not being believed is distressing in a particular way. 

It is fair to say that while diabetes has the ability to creep its way into all sorts of places it doesn’t belong, it is also fair to say that sometimes it’s not diabetes. 

I’ll say that again for the people in the back: SOMETIMES IT’S NOT DIABETES! 

Women – with and without diabetes – have also reported, (and reported and reported) stories of not being believed, or listened to, or properly treated by healthcare professionals when we’ve fronted up to visit the GP or other health professional to discuss something worrying us. Women with painful, heavy, uncomfortable periods are told that it’s just part of being a woman. A diagnosis of endometriosis is not treated as something especially serious because it is common, and we’re told it’s just part and parcel of life for some women. And women going through menopause and perimenopause, are told just to accept it, that it will pass… and it’s just part of being a woman.  

Put diabetes and women’s health together and there is a lot of dismissing, ignoring, diminishing, patronising, and belittling. 

It needs to stop, and we need to be believed. 

I am lucky that I haven’t experienced painful periods. To be honest, I barely even thought about periods until I was ready to try to get pregnant when I realised that my (up until then) good luck of only having a period 3 or 4 times a year wasn’t ideal for someone who needed to know when ovulation was occurring, and, to optimise the change of getting pregnancy, was occurring monthly. When I mentioned my irregular periods, the first thing I heard from most HCPs said was that it was because of diabetes. I wasn’t buying it. I’d started menstruating when I was thirteen. I had eleven years of sketchy periods before I was diagnosed with diabetes. And so, I asked for a referral to an OB/GYN and found one who was the sort of doctor who likes to solve puzzles rather than just ignore them.

He did a laparoscopy, a heap of other tests, and announced that I had PCOS. Not once did he suggest that my diabetes was to blame, but so, so many other HCPs did draw a line between the two. I do understand that there are links between type 2 diabetes and PCOS, and there is some research to suggest that there is a link between type 1 diabetes and PCOS, but thanks to an OB/GYN who wasn’t into making assumptions, I knew that there was more at play. 

When I was ready to conceive, a regular cycle was easily achieved with a bit of Clomid. Since I had my daughter, my periods have been like clockwork. The arrive with a tiny bit of cramping that barely registers, and me being annoyed that I need to think about if I have what I need in the bathroom cupboard/work drawer/handbag. But not much else. 

But I have friends who have such painful, uncomfortable, debilitating periods that have a really negative affect on their health and wellbeing each and every month. I know of people who miss days of school or work each cycle, who vomit at their period’s onset, and who cry in pain for days each and every month. These friends tell stories of how many HCPs simply shrugged their shoulders and said it was something they just needed to deal with, and perhaps some ibuprofen might help. They tell me that the severity of the pain is not believed. They are made to feel that bleeding through layers of pads, tampons and clothes shouldn’t concern them. 

When I have needed to push and push and push to get answers, or to be treated seriously in the first place, or to reject the ‘It’s diabetes’ reasoning, I have been labelled difficult or challenging. When refusing to accept the ‘It’s just a woman thing’, I’ve felt the same way. 

Dr Jen Gunter says it shouldn’t be an act of feminism to understand how our bodies work. In exactly the same way it shouldn’t be an act of defiance to demand answers. It also shouldn’t be an act of resilience. All too often, it is all these things. 

Artwork from diabetes advocate & artist, Jenna. Find this & other amazing artworks on her Instagram page: @TypeOneVibes.

I’m a huge fan of New Yorker cartoons, (clearly – they’re littered throughout this blog!), and the artists that make real life situations come to life using humour, satire and more than a little cynicism.

Sometimes I hoot out loud at the sheer brilliance of what I am seeing. Other times I smile wryly. This time I gasped in absolute shock and horror. And familiarity.

Click for details.

It’s from February 2016, and seems to have been frightfully prophetic for our COVID times. As ‘underlying conditions’ has become barely-concealed code for ‘half dead anyway’, artist, Frank Cotham seems to have had a futuristic glimpse into the 2021 minds of conservative politicians and commentators.

Stay strong, my friends with diabetes and other underlying conditions. You matter. We all do. And living longer absolutely is right for us.

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?

Seventeen years ago, I had a decision to make. Would I enrol our soon-to-be-born baby in research that would tell us if she had any of the antibodies for type 1 diabetes?  

I thought about it long and hard. Aaron and I spoke about it a lot. He wanted to support me with whatever I thought would be best. In the end, we decided not to do it. Even before our daughter was born there was a dread that I could barely give word to – I was terrified that I would be responsible for passing on my diabetes to my baby. That feeling hasn’t gone, by the way. I have spent a lot of hours working through it with a psychologist to try to understand the source of the anxiety and learn to manage the fear in a way that doesn’t become all encompassing. Because there were times that I felt paralysed with that fear. I knew I needed to get through that. 

I felt horribly guilty about not signing her up straight away and registering her in research. When I returned to work after maternity leave, there was a trial that was in full recruitment mode, and I once again faced the decision. I was actively promoting this study through my work, and speaking to the researchers a lot. A couple of times, I asked if I could speak with them in a personal rather than professional capacity and explain my reticence to enrol my daughter, even though I could understand why the work was so important. I asked for their advice and guidance, and they were always so wonderfully kind and understanding when I said that I simply didn’t feel that I could proceed. I think that part of the reason was that there wasn’t really all that much that could be done if it was identified that she did indeed have one or more of the islet autoantibodies. 

Over the last couple of years, there has been a lot of interest and excitement in research into prevention and delay of type 1 diabetes. That ‘p’ word that has only ever been attached to type 2 diabetes now very firmly has a place when it comes to type 1 diabetes. At the ADC earlier this month, I listened to a couple of hours of talks from researchers who were talking all about screening for type 1 diabetes, and interventions that are taking place around the world with remarkable results. 

The Type 1 Screen program has been running in Australia since 2018. It is open to relatives of someone with type 1 diabetes, aged 2 – 30 years. After initial screening, people without antibodies are screened every five years; people with antibodies are screened annually. Up until now, screening has been by doing a pathology blood test. However, home collection is being developed and, at the time of the presentation, was about to be launched. Home collection will be done by using blood from a finger prick.

So, what are the benefits of screening for type 1 diabetes? Well, there are many!

Early diagnosis (of anything) is a good thing! In a perfect world, early diagnosis means early treatment which means better outcomes. It also helps people and families prepare for progression to diabetes. 

Screening reduces the risk of DKA at diagnosis. While that may make for a less traumatic diagnosis experience, there are also linger term benefits for this. DKA at diagnosis increases the risk of recurrent DKA, a higher A1c and increases the risk of diabetes-related complications. 

Prevention is on the horizon! Knowing people who are at risk of type 1 diabetes means employing interventions that have the potential to delay, and may one day prevent, type 1 diabetes. Research using the drug Teplizumab delayed the onset of type 1 diabetes by two years. 

Researchers and clinicians are talking about stages of type 1 diabetes and this is where it gets super interesting. Stage three type 1 diabetes I diagnosis and, typically, that’s where treatment starts. But in the future, it’s possible that treatment, including glucose monitoring, could be routine for stages one and two. 

I listened to all this carefully and one thing that was clear to me: even seventeen years later, the emotional impact of this is significant. Thankfully, Dr Christel Hendrieckxs from the ACBRD is part of the project team for this work here in Australia. It goes without saying that this is about a lot more than just early diagnosis of type 1 diabetes. There is also the impact on the family, especially if someone in that family already has type 1 diabetes. The mother guilt I have at the thought of passing on diabetes to my daughter is by no means a small thing. I know a number of other parents with diabetes who have similar thoughts. 

After that session, I asked my sixteen, almost seventeen, year old how she would feel about enrolling in Type 1 Screen. It’s completely up to her now – I am happy to chat about it, and tell her all about the program, but ultimately, it’s her decision. She understands why I was reluctant to enrol her when she was tiny, but now, I am giving her the option to get involved, and she needs to make her own decision which we’ll fully support. I don’t know what she will decide, but the seed has been planted, and I am here to chat with her about it, and organise times to meet with the researchers too if she’d like.

Watch my Q&A with A/Professor John Wentworth from Type 1 Screen about getting involved in this research.

More information about Type 1 Screen can be found here

I probably should stop thinking of my job as ‘my new job’. I’ve been at Diabetes Australia now for well over five years. But for some reason, I still think of it that way. And so do a lot of other people who often will ask ‘How’s the new job?’

Well, the new job is great, and I’ve enjoyed the last five years immensely. It’s a very different role to the one I had previously, even though both have been in diabetes organisations. 

One thing that is very different is that in my (not) new job I don’t have the day-to-day contact with people with diabetes that I used to have. That’s not to say that I am removed from the lived experience – in fact, in a lot of ways I’m probably more connected now simply because I speak to a far more diverse group of people affected by diabetes. But in my last job, I would often really get to know people because I’d see them at the events my team was running, year in, year out. 

Today, I got a call from one of those people. (I have their permission to tell this story now.) They found my contact details through the organisation and gave me a call because they needed a chat. After a long time with diabetes (longer than the 23 years I’ve had diabetes as an annoying companion), they have recently been diagnosed with a diabetes-related complication. The specific complication is irrelevant to this post. 

They’ve been struggling with this diagnosis because along with it came a whole lot more. They told me about the stigma they were feeling, to begin with primarily from themselves. ‘Renza,’ they said to me. ‘I feel like a failure. I’ve always been led to believe that diabetes complications happen when we fail our diabetes management. I know it’s not true, but it’s how I feel, and I’ve given myself a hard time because of it.’ 

That internalised stigma is B.I.G. I hear about it a lot. I’ve spent a long time learning to unpack it and try to not impact how I feel about myself and my diabetes. 

The next bit was also all too common. ‘And my diabetes health professionals are disappointed in me. I know they are by the way they are now speaking to me.’

We chatted for a long time, and I suggested some things they might like to look at. I asked if they were still connected to the peer support group they’d once been an integral part of, but after moving suburbs, they’d lost contact with diabetes mates. I pointed out some online resources, and, knowing that they often are involved in online discussions, asked if they’d checked out the #TalkAboutComplications hashtag. They were not familiar with it, and I pointed out just how much information there was on there – especially from others living with diabetes and diabetes-related complications. ‘It’s not completely stigma free,’ I said. ‘But I think you’ll find that it is a really good way to connect with others who might just be able to offer some support.’ 

They said they’d have a look. 

We chatted a bit more and I told them they could call me any time for a chat. I hope they do. 

A couple of hours later, my phone beeped with a new text message. It was from this person. They’d read through dozens and dozens of tweets and clicked on links and had even sent a few messages to some people. ‘Why didn’t I know about this before?’, they asked me. 

Our community is a treasure trove of support and information, and sometimes I think we forget just how valuable different things are. The #TalkAboutComplications ‘campaign’ was everywhere a couple of years ago, and I heard from so many people that it helped them greatly. I spoke about it – particularly the language aspect of it – in different settings around the world and wrote about it a lot.

While the hashtag may not get used all that much these days, everything is still there. I sent out a tweet today with it, just as a little reminder. All the support, the connections, the advice from people with diabetes is still available. I hope that people who need it today can find it and learn from it. And share it. That’s one of the things this community does well – shares the good stuff, and this is definitely some of the good stuff!

Want more? 

Check out the hashtag on Twitter here.

You can watch a presentation from ATTD 2019 here

Read this article from BMJ

Over the weekend, I could not stop thinking about the words ‘from’ and ‘with’, specifically when used before the word COVID. The reason for this is that there seems to have been a subtle shift in the language used by NSW government and health officials when speaking about people dying during this wave. You see, rather than saying people are dying FROM COVID, they’ve started to say dying WITH COVID.

It means something different. It suggests that the person didn’t die from the virus, but from other factors. This is on top of the over-emphasis made at pressers about how people who have died have underlying conditions (I wrote about that last week). The implication is that the person was already unwell; that they were dying anyway.

I know I’m a little fragile at the moment, but not fragile enough to not get fired up when I see language being used in a harmful way, and negatively framing people with chronic health conditions. And so, today, I wrote to the Premier of NSW about this issue.

Here’s what I wrote:

______________________________________

Dear Premier Berejiklian

My name is Renza Scibilia, and I am not one of your constituents. I don’t live in NSW, so you may be inclined to simply disregard this message. I hope you (or rather, someone from your team) will read it, because I know that what I have to say is relevant to many people in your state. In fact, I am sure that you have heard similar sentiments from people in NSW and I am adding my voice to that choir.

I don’t envy the position you are in right now and I’m not here to complain or credit the work you are doing regarding the current serious wave of COVID-19 in your state.

But I would like to make comment on something that is very close to my heart and an area in which I have some experience – health communications.

Communication matters. The words that people use are sometimes employed flippantly and sometimes they are employed deliberately. Either way, they are important. I fear that a change in the words you and your team have recently started is a deliberate move and I believe it is harmful to people like me. When speaking about the tragic deaths of people during this COVID-19 wave, you are now saying they die WITH COVID-19 rather than FROM it.

It may seem ridiculous to draw attention to words that appear so immaterial. Except, of course, they are not immaterial at all. And I believe that the shift is deliberate. And it does a great disservice to the people to whom you are referring.

I live with type 1 diabetes. It’s undoubtedly a serious condition, and one that I have had to manage for the last 23 years. On a day-to-day basis, I do quite impressive mathematical calculations as I measure glucose levels, dose insulin, consider my activity, and monitor my stress levels. This takes time – a lot of time. Outside of diabetes-specific care, I eat well, walk 10K steps a day, and manage my wellbeing as best I can.

Beyond what I do each day, I remain on top of my longer-term diabetes and overall health. I never miss screening checks – diabetes or otherwise; I have annual health checks and I can tell you my BP, resting heart rate, HbA1c, lipids and cholesterol. Most people my age are not this switched on with their health and wellbeing, and because I am, I can confidently say that I am healthier than a lot of people my age.

And so, when you use sweeping statements suggesting that if someone like me was to be diagnosed with, and die from COVID-19, that the reason for my death is my health condition you are not correct. I am not already dying from diabetes.

There is a difference between dying FROM COVID-19 and dying WITH covid. Your change in language is an insult and is upsetting to people like me and it is also misleading. I am healthy, I am fit and if I got covid and died, it would be because of the virus not because of my type 1 diabetes.

I urge you to reconsider how you are speaking about people like me. It is heartbreaking for us to know that in the minds of some, our lives, and our deaths, are so easily explained away. While I am sure your intention is not to make us feel as though we are nothing more than collateral, that is how it sounds. The language you are using frames us and our health conditions as being to blame. It makes us sounds and feel as though we already have one foot in the grave and I can assure you that is not the case.

Language matters, words matter. Please, please be careful when selecting yours.

Sincerely,

Renza Scibilia
Melbourne

There are two boxes on my desk today because I am recording a little video for a new series at work. In my diabetes store cupboard, there are lots of boxes from currently using and past diabetes devices and products. 

These boxes all contain promises and hope – promises to make diabetes easier and the hope that some of the significant time dedicated to something that no one really wants to dedicate time to is gained back.

Burden is very personal. One person’s significant diabetes burden is another’s mild inconvenience. Some look at a CGM and see life changing and lifesaving technology and others see a nagging device of torture. I vacillate between the two trains of thought. 

No diabetes device is perfect and does all things. Most rarely even do what they promise on the box. 

And yet when we look online often all we see is the perfect stuff. With diabetes tech companies getting smart and becoming all social media savvy, they have looked to the community to see how we communicate and share. It’s not a silly thing to do. Many of the decisions I’ve made about diabetes tech choices have been based on what my peers have to say. But I’m selective about who I search for when looking for those personal experiences and testimonials. I look either for people I kind of know, or people who have a history of being open and honest and real about their experience.

I’d make a lousy ambassador, even though I am asked almost daily to either become an ambassador for a company or promote their product, with lots of free stuff thrown in. Some offer payments. Sometimes I agree to try something, but there are never any strings attached, and while I will accept the product, I will never be paid for using it, or for writing about it. (You can see that in my disclaimers when talking about product. I always say that I’m sharing because I want, not because it’s part of the arrangement for me to use gifted or discounted product. I’ve never done that.) That’s not to say that I have not had arrangements with different companies and been paid an honorarium for my time and expertise, but that is always in the capacity of being an advisor, or consultant. 

I’m too honest about the challenges of different diabetes technologies – you bet I love Dtech, but not everything about all of it! It’s why I am always wary of anyone spruiking any diabetes product who has only positive things to say. In the last 20 years, I’ve used or tried pumps from Medtronic, Cozmo, Animas, Roche and Ypsomed. I have loved them all. And hated them all. I’ve never had only good things to say about any of them – even the Cozmo which remains my favourite ever pump, and anytime I see one, I have strong happy feelings of nostalgia…but despite that, it still had its failings that I spoke about often when I used it. 

I’ve used CGM products from Medtronic, Dexcom and Libre and had few good things to say about some generations, better things to say about others, but never loved every single aspect of any of them. Because there is always something that isn’t perfect, or even almost perfect. 

And finally, I’ve used countless blood glucose monitors from every brand in Australia and some I’ve picked up on travels, and it’s the same deal: love some things, drop the f bomb about others. 

The times I have been gifted products, I have always been honest when talking about them, highlighting the pros and cons. Even though I always write about the positives and negatives, I’ve always urged people to read or listen to whatever I have to say understanding that there is a lens of bias with which I see them through. Of course there is, and others should consider that. I also know I have never consented to having anything I’ve said or written reviewed or amended by the company who has kindly gifted product, or have I promised to do a certain number of posts or tweets or Insta pics about them. The sharing I do is always on my terms as are the words in those shares.  

I have, however seen many contracts these days that are very prescriptive when it comes to the expectations and commitments of the people being given product. I don’t have an issue with that; I couldn’t care less really. But I don’t think that simply putting the words #Ad on a post gives people the true picture behind the arrangement in place, which is important for the reader if they are to consider just what bias could be at play when reading someone’s opinions.

I am always pleased when I see that industry is engaging with PWD. There should be clear lines of communication, and hearing what PWD say is critical – far more so, in my mind, than what the shiny brochures have to say. But just as I read what the company’s PR messaging has to say with some scepticism, I do the same when I am not clear of the pact between the company and the PWD. 

Diabetes devices rarely, in fact, I’d go so far as to say NEVER, do all that they promise on the box. I think I’ve known that all along, but it wasn’t until I started using something that doesn’t come boxed up in sparkly, fancy packaging that I truly realised just how much that wasn’t true. 

Those promises to do less diabetes – to reduce that burden – was only ever true to a small degree. And sometimes, there was added burden that you could only truly learn about if you knew where and how to access others with diabetes, in particular those that didn’t sound as though they were simply regurgitating what the brochures said. 

Using an out of the box diabetes tech solution isn’t all perfect. There are somethings about DIYAPS that annoy me. A red loop on my Loop app can be frustrating – even if it’s a simple fix. Needing to carry around an OrangeLink and making sure it’s in range gets irritating. Not having a dedicated 1800 number that I can call 24/7 and handing over any concerns to someone else means that the troubleshooting burden falls squarely on my shoulders – even if there is a community out there to help me through. 

And yet, even with all that, it is the first time ever that I have been able to say that I do less diabetes. How much less? Well, I think that Justin Walker’s assessment from a presentation at Diabetes Mine’s DData event back in 2018 is right. He said that using a DIYAPS has given him back an hour a day where he no longer needs to think about diabetes

Last week, I hit four years of Looping.  That’s 1,460 hours I’ve clawed back. Or over 60 days. If DIYAPS came in a box (and with a PR machine and marketing materials) and it promised me that, I wouldn’t believe it based on previous experience. But I guess that’s the thing. There is no box, there is no marketing juggernaut. It’s just the stories of people with diabetes who have worked through this and worked it out for themselves. 

An out of the box marketing solution for an out of the box diabetes technology solution. I’ve never trusted anything more. 

More on this:

Advertising in Diabetes

At the last IDF Congress, I was invited to be part of the first panel on the opening morning of the meeting. It was all about diabetes and technology. Before the questions, the moderator, my friend Kyle Jacques Rose, asked everyone to introduce themselves. When it got to my turn, I said who I was and then shamelessly and unapologetically said I was the most important person the stage (along with Kyle and Manny Hernandez, who also live with diabetes). I remember looking steadily out into the audience as I made my claim to see the response. There was some who looked taken aback. And then some who cheered (thanks to the other PWD in the room!). 

Last week, I was in a two-hour workshop. I knew maybe half the people there. I also knew that I was the only person there to provide the ‘user’ experience. This isn’t uncommon, but it still drives me nuts when it happens, especially in a session that was about finding the right person-centred model of care in the age of telehealth. When it came to introducing myself, I thanked the organiser for inviting me, and said that it was great to be there…as the most important person in the (Zoom) room. One of the researchers I know well and who I have worked with quite a lot in recent years, smiled widely. At least I had one person in the room who got me. I watched again to see how others responded. Some certainly did look a little shocked. 

I explained that having people like me to feed into the work is critical, and that it was great that they wanted to hear from someone with lived experience to (and it would have been great to have seen a few other folks doing the same). 

So, how do I manage to be ‘the voice’ of lived experience when it comes to these sorts of things? When the meeting is diabetes-specific what do I say that captures the needs and wishes of every single person with diabetes? And, as in this meeting, when it’s about designing a system that is for all people with a variety of health conditions, how do I effectively and adequately tell the HCPs and researchers in the room just what it is that those people want?

The answer is, I don’t. Of course I don’t. 

I can’t speak to anyone else’s experience other than my own. I can’t say ‘I need this’ and assume that is what everyone else wants, and I would never make that assumption. Nor do I try to convince anyone that my needs and experiences are representative of anyone’s other than me. 

I will advocate until I am blue in the face that there needs to be many different people consulted and engaged in the design, delivery and dissemination of healthcare services, activities, and resources. Sometimes, that does happen. But if it is only me, I am never there to provide specifics of what needs to be done. In fact, I spend most of my time urging (begging and pleading) for assurances that there will be far more, far better, far meaningful engagement from this moment forward. 

I see my role is to pointedly, deliberately, unambiguously, and often, bolshily, make sure that the others in the room embed the idea of co-design in everything they do. And do it with wide representation.

I honestly don’t believe that there can ever be too much lived experience representation. But in the cases when there is only very little, I have rarely met anyone who claims to be the oracle of all things to do with lived experience or believe that their ideas are the only one worth listening to. In fact, anytime that has happened that person never is asked back. 

When I am asked to help find people for an advisory board, or to be involved in consultation, I always search for people who I know can look beyond their own experience. Again, it’s not because they are expected to speak for others. Rather it’s to know that there are others with different experiences and that, while they are the one at the table in that moment, they will do everything possible to make sure that those others are invited next time. 

And THAT, is why, at times like this, people like me are the most important people in the room – those of us who are banging a very loud drum to make sure that our cohort grows and grows. If you are working in healthcare and don’t have people with lived experience as part of the discussion, you’ve forgotten the most important people.

Stop what you’re doing, RIGHT NOW, and go find them. 

IDF Congress, Busan 2019. Opening panel. Some super important people on the panel. Manny, Kyle and I just happened to be THE most important.

Friends, how’s your mental health today. Mine. Is. Shit.  

Gosh, I feel as though I have been through the wringer, hung out to dry and then, just at the moment that everything was looking good again, dropped in a muddy puddle and trampled on by a herd of bison. I mean, not really, because bison are not typically found in the especially hipster part of downtown Melbourne I reside, but hopefully you now have a picture of how I’m feeling. 

Not even the overabundance of sparkly necklaces (and ever-present red lipstick) I threw on this morning can distract from the fact that I am exhausted, look as though I’ve been weepy for most of the day (because I have) and am just feeling so damn over everything right now. 

Not a good mental health day.

Somehow, I held it together for a live Q&A about diabetes and mental health which I may or may not have treated as my own personal therapy session. (You can watch the video here.) Thankfully, psychologist, the ever-wonderful Dr Adriana Ventura, offered some fabulous tips for how to take care of our mental health during this time that is still being referred to as unprecedented times, but I’ve taken to calling the clusterfuck period. 

The moment today that was the most difficult for me to deal with was just after 11am when the NSW Premier told us the grim news out of her state. I know that I probably should stop watching the pressers, especially the ones out of NSW. It’s not my state, so most of what is being said is actually not all that relevant to me and my family, and the repeated lies that are casually thrown around like confetti at weddings we can’t have anymore make me furious. And yet, even knowing that, I find myself sitting through them most days, yelling at the screen while madly tweeting my fury. 

But today, instead of yelling, there was crying. The NSW Premier said ‘We extend our condolences to the family of a man who has died. He had received one vaccination. And he DID have underlying health conditions.’ She accentuated the word ‘did’ to underline what she was saying. 

And so, where back, or perhaps still, at this point. That point is where we dismiss those with health conditions as nothing more than covid collateral.

I cried as she said it, angrily wiping away tears at how easily I was once again being made to feel expendable. I felt sad and broken and just so damn beaten. I have spent the last twenty months doing all I can to protect myself, knowing full well that those efforts protect others too. I rarely go out; I never leave the house without a mask; I’ve washed my hands and rubbed so much sanitiser into my skin that I feel the dermatitis that has started will never leave; I’ve followed all restrictions; when I do go anywhere, I check in at each location; I’ve had a covid test every time I so much as feel sniffly; and I got vaccinated the second I was eligible.

I have been deliberately compliant when it comes to covid.

And when it comes to diabetes, my deliberate non-compliance has meant that I am continuing to manage in a way that, according to every HCP and researcher I’ve ever met, is giving me the best chance to live well and to live long with diabetes. 

And yet, despite all that, if I get covid and die, the message is it’s because I had an underlying condition. I already have one foot in the grave; covid just gave me a gentle push the rest of the way. 

Well, fuck that.

I know I’ve written about this before, and honestly, this far into it all, I should be better at just ignoring it. But when it is coming from our politicians and the media, and I’m hearing it from people in the community, it’s hard to not take it personally.

The man the NSW Premier referred to, died from covid, not his pre-existing health condition. It certainly may have meant that covid was complicated for him, but if he’d not got covid in the first place, he probably would still be alive. His underlying medical condition doesn’t make him any less worthy, or any less of a loss. It doesn’t excuse his death.

I don’t know when people will stop with this hurtful and harmful rhetoric. I’d have hoped that by now the communication efforts from those who stand up every day to tell us the bad covid news would be more nuanced and more respectful. 

I guess that’s too much to hope for.  

Often when we talk or read about technology it is very much about the latest, newest, shiniest devices. And yes, I wrote about those last week. There’s nothing wrong with learning about latest tech releases, or desperately wanting to get your hands on them. 

But the devices are only ever half the story. And that’s why it was so great to see that in amongst all the data and the new things, was a presentation that reminded everyone watching the technology symposium at ADC that the data belongs to people and the devices are worn on the bodies of those people. 

This is the whole warm hands, cool tech concept that is often missing when we hear about technology. The devices are not inanimate, they need human interaction to make them work for … well … for humans.

I despair at some of the stories we hear about technology and people with diabetes. Some talk experiences that have left them feeling like a failure when the tech has simply not been right for them. Because that is the way it is posed. If we decide the tech doesn’t suit us, hasn’t worked for us, hasn’t helped us achieve our goals, we’ve failed it

The truth is, it’s more likely that the failure – if we need to frame it that way – is not the PWD at all. It’s more likely that the tech is not right for the person, and there wasn’t enough assistance to help navigate through to choose the right tech. Or the education was insufficient, or not tailored for the PWD, or not interesting, or not relevant (more on that soon, from Dr Bill Polonsky’s opening plenary from the conference). It is possible that the timing wasn’t right, the circumstances were not optimal, not enough conversations about cost or effort required … whatever it is, none of the blame for something not being right should be placed on the PWD.

When we look at diabetes education, or engagement with healthcare professionals, the stories that are celebrations or considered successes (from the perspective of the PWD and, hopefully, the HCP) show the right recipe. The ingredients will all be different, but the method seems to be the same: the person with diabetes is listened too, time is taken to understand what is important for them, the PWD’s priorities are clear, and goals are realistic and checked along the way. The end results are not necessarily based on numbers or data points, but rather, just how well the person with diabetes is feeling about their diabetes, and if anything new has added to their daily burden. Reviews are focused on successes more than anything else. 

My favourite ever diabetes educator, Cheryl Steele, gave an outstanding presentation on how HCPs can best work with people with diabetes to ensure we get the most from our technology. 

I spoke with Cheryl after her talk (you can watch the video of our chat for Diabetes Australia at the end of today’s post), and she laughingly said that she could have said the most important things she wanted to say in 2 minutes, and with one slide that basically just said that HCPs need to be truly person-centred and listen to PWD.

But thankfully, she spoke a lot more than that and covered a number of different topics. But the thing that got to me – and the thing that I hope the predominantly HCP audience would take home and remember – was Chery urging her colleagues to focus on the positives. 

Cheryl said, ‘The emphasis has to be on what you’re doing well’ and I feel that is a wonderful place to start and end healthcare consultations. I think about experiences where that has happened to me. Such as the time I went to my ophthalmologist after a few years of missing appointments and his reaction to seeing me was not to tell me off for not showing up previously, but instead to welcome me and say it was great I was there. I’ve never missed an appointment since. 

How many PWD reading this have stories to share of times when they went into an appointment with data and all that was focused on was the out-of-range numbers? There are countless stories in online diabetes groups where HCPs have concentrated on the 10% out of range numbers rather than the 90% in range. Actually, even if only 10% of numbers were in range, that is 10% that are bang where they need to be!

Perhaps that’s what’s missing from diabetes appointments. Gold stars and elephant stamps!

There is something devastating about walking into an appointment and the first, and sometimes only, thing that is on the HCPs radar is numbers that are below or above the PWD’s target glucose range. I’ve sat in those appointments. I know the feeling of walking in and feeling that I’m tracking okay, only to have none of the hard work I’ve managed acknowledged and instead, only the difficulties addressed. 

But then, I think about one of the first experiences with the endocrinologist I have been seeing for twenty years. Without judgement, she acknowledged that I wasn’t checking my glucose much, and asked if I felt that I could start to do one check every Wednesday morning when I woke up. I said that it seemed like such a pathetic goal to set, but she gently said, ‘One is more than none’. The focus was not on what I wasn’t achieving. It was on what I could.

What a wonderful motivator that is. 

Disclosures

Thanks to the Australian Diabetes Society and Australian Diabetes Educators Association, organisers of the Australasian Diabetes Congress for complimentary registration to attend the conference. This gave me access to all the sessions.

I work for Diabetes Australia and the video shared is part of the organisations Facebook Live series. I am sharing here because is relevant to this post, not because I have been asked to.

As usual, no one has reviewed this piece before I hit publish (which is unfortunate because I could really do with an editor).

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