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Last week, the BMJ published a piece I wrote with the Grumpy Pumper. It was part of their ‘What Your Patient is Thinking’ series which includes stories from people sharing their experiences of living with a variety of health conditions, or using health services.
We wrote about the intersection between language and diabetes-related complications and why language matters so much any time this topic is raised. This is our latest piece on the issue (read the PLAID Journal article here, and something we wrote for diaTribe here). We may appear to be one trick ponies, but it seems the appetite for this issue has not in any way diminished – which is good, because there’s lots more to come! (We’re not one trick ponies – I for one can talk for hours about why the fax machine should be made extinct in healthcare.)
It’s been fascinating – and a little overwhelming – to read the responses to the article after it was shared on a variety of social media platforms at the end of last week, and then again over the weekend. It’s also been heartbreaking when people have told stories about how HCPs have spoken about diabetes-related complications in ways that have had negative effects.
It’s refreshing to see many HCPs (including those from outside the diabetes world) sharing and commenting on the article. Much of what we have written is applicable beyond diabetes. It doesn’t matter what health condition someone is diagnosed with; everyone wants to be treated with kindness and compassion and to not be blamed or shamed.
A couple of HCPs have said that after they read the article, they will now consider changing the way the speak. I love this piece from a CDE in the US who said that she honestly thought the words she was using when discussing diabetes-related complications were reassuring until she read our perspective, and now understands that there are better ways to frame the conversation. We only hope that this will lead to PWD feeling less judged and more supported, and not afraid to talk about what is still a taboo topic for so many.
The diabetes and language landscape is broad. I know that there are many who roll their eyes and say that actually, language doesn’t matter, and perhaps we should be focusing on more pressing issues, but I wonder if they are perhaps focussing on issues that they don’t think are really important.
But there is a lot more to this issue than, for example, the debate between being called ‘a person with diabetes’ or ‘diabetic’ – or if it even matters. Regardless of what the specific issue is, we are hoping is that people understand that words really do matter; they have far-reaching consequences; they determine how people feel about their diabetes; and that the right words have the potential to make people feel better equipped to manage their diabetes as best they possibly can.
Please read the BMJ article – it is freely accessibly – and share it with your networks. If you have diabetes, take a copy to your next HCP appointment and leave it for them to read. The way that we make real, sustainable change is to keep pressing a point, and explain why it is important. Hopefully this piece has gone some way to doing that.
The illustration that was commissioned for the print version of the article. Artist Rose Lloyd did such a great job of getting across the messages in the article!
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It’s hot in Melbourne today and it’s going to get warmer over the next few days. I’m loving the bone-warming sun that just makes everything look so sparkly and bright. So, I’m spending as much time as possible soaking up the rays (and adding to the ridiculous tan mark around my Dex), because the cooler weather will be here before I know it. I’m trying to build up those vitamin D stores to last me for when winter hits here and I’m reliant on quick trips to the northern hemisphere for work to see the sunshine and warmer temperatures.
Anyway, diabetes doesn’t take a break over the summer. Or winter. Which means, there is always lots to read and see about it. Here are some of the things I’m catching up on now.
Hospital life in pictures
This piece from the guardian will break your heart. Explained pictorially, it’s easy to see that the medical system is broken, medical education is broken, hospitals can be incredibly cold and anxiety inducing places, doctors are at breaking point. And patients in the system are left to deal with the fallout from the disarray.
IDF comps
The International Diabetes Federation is working to reduce the stigma association with diabetes-related complications, with a focus on how the language used can make people feel judged and stigmatised. Last year, they launched the #DiabetesComplicationsTalk Facebook page, encouraging people with diabetes to share stories and support each other.
It’s really great to see the IDF in the #LanguageMatters space, encouraging people to openly speak about diabetes-related complications to help reduce the stigma associated with them. More here.
Diabetes Voice
Still on news from the IDF, the organisation’s quarterly magazine is now available electronically. The first edition is an absolute cracker. Start with this incredibly powerful piece from editor, Elizabeth Snouffer, about diabetes-related stigma. Read it. Share it.
Patient Revolution
If you’ve not checked out the Patient Revolution website, now is a great time to have a look.
Start with this page, which is a library of stories you can click through, finding any specific topics that you are interested in.
Also, there is a Patient Revolution chat which uses the hashtag #WhyWeRevolt. To keep up to date with their chats, and to take part, follow @PatientRev on Twitter.
1,200 mason jars
Do you ever find yourself in the midst of a Twitter thread, wishing, in equal measure, that you hadn’t started, but can’t get enough of it? Sometimes these threads are diabetes-related; sometimes they’re not. Go here for one that is definitely not.
I have spent far too much time in the last week invested in this bizarre tale. There is a lot to take away from the whole saga – maybe starting with: don’t pay USD$169 to hear someone ‘teach’ you how to ‘be you’. And there are a lot of unanswered questions, such as what the hell is going to happen to the mason jars.
Happy reading. (You may need a drink …)
Diabetes in the US
I will never understand the US health system. My head and heart hurt as I hear the struggles of friends with diabetes, and the difficulties they have accessing insulin, and diabetes tech and supplies.
This piece from the New York Times talks about non-medical switching, where insurance companies decide which drugs (and devices) they will cover and subsidise. In Australia, the government decides which drugs will be listed on the PBS (Pharmaceutical Benefits Scheme). If a drug is on there, it is the same price for everyone who has a prescription. There are some drugs that require a special prescription to be provided at the subsidised price. But there is no extra negotiating or pleading, or any involvement, with insurance companies.
In a system that is broken beyond measure, this seems like one more roadblock to make just surviving with a condition such as diabetes impossible.
Going beyond
Beyond Type 1 has grown to include a new platform for people with type 2 diabetes. Check it out!
Real life Loop stories
The team at diaTribe has a new series of personal stories of people who have been using DIYAPS solutions. Adam Brown’s story was first, and Kelly Close has now offered her experiences. Such a great idea to get a number of different insights into what has worked, what hasn’t and hopes for the future of DIYAPS.
Sharing and caring
Also from diaTribe, this great piece from Kerri Sparling which provides her own and others’ perspectives on sharing of CGM data. There is no one way to share data – it is personal, individual and can change over time, depending on circumstances. Some choose to; others don’t. I love this piece because it is balanced and offers some interesting thoughts.
Ascensia and CGM
More tech choices for people with diabetes is always great to hear, so Ascensia’s recent announcement of their move into the CGM market has been met with enthusiasm from the community. Read their release here and Diabetes Mine’s take on the announcement here.
SoMe at conferences
I believe social media engagement and use at all health conferences is a critical and necessary part of any communication strategy. There is no better, easier or more effective way to share details of the conference that by encouraging the people attending to broadcast using their own social media networks.
This article explores that, referencing the ridiculous photo ban at ADA in 2017 (which thankfully was changed in 2018).
Menopause and T1D blog
Sarah Gatward is a blogger from the UK and she is writing a series sharing her experiences of living type 1 diabetes and going through menopause. Yes! And thank you, Sarah. Start here.
NDSS reminder
Now is a good a time as any to make sure your NDSS details are up to date. Remember – the NDSS is not just about subsidised diabetes supplies. It also provides information and support for people affected by diabetes.
Go here to make sure your registration details are correct.
Bin the fax
All my dreams came true when I read this article in the Limbic today! Finally calls to get rid of the archaic fax machine in health care. Halle-bloody-lujah!
I’m still playing catch up on the goings on at EASD. It was such a busy conference – in general and for me personally – that my head is still lost in a lot of what happened and what I saw. It’s somewhat frustrating for me because diabetes conferences are seen as an opportunity for so many meetings of different groups and projects I’m involved in, and that means I don’t get to anywhere near the number of sessions I would like to. When I can, I make sure I live tweet my way through (that’s how I take notes to do write ups later), but this conference was so busy that there was very limited time for that.
But I still did get to see a lot thanks to the satellite events I was invited to and asked to speak at. Plus, this year at EASD, I was involved in something new that was super exciting.
DZD meets #DEDOC was a novel session combining young researchers and (not necessarily young) people with diabetes to give different perspectives on a variety of current research programs. The event was presented by Deutsches Zentrum für Diabetesforschung.
(My very limited German (i.e. I sang in St Matthew’s Passionat University – badly – and was in the orchestra for a German-language version of Threepenny Opera, or rather, Die Dreigroschenoper) is apparently good enough to translate that as the Diabetes Centre for Diabetes Research – so, I guess I’m almost bi-lingual now.)
Bastian Hauck hosted the event and was involved in the project to nominate PWD to speak at the event, and encourage other PWD who were at EASD to come along and listen. This was Bastian doing what he does best – facilitate discussion and encourage engagement by different stakeholders. He always manages to ask questions that get people thinking in different ways and did a stellar job again in this event.
The session was not designed as an excuse for PWD to be critical of the research and researchers, or to find fault in what they were doing. It was not to query the merits of the research either. It was to give the researchers an opportunity to speak about their work (in a rapid fire, five minute pitch), and for PWD to engage in that discussion, asking questions and explaining the relevance of the research to actually living with diabetes. While the project may not have actually come directly from PWD, it was a true collaboration where researchers spoke of what drives them, and we shared what we hope from science.
So, what research was on show?
Firstly, we had Dr Stefan Kabisch speaking about research which compared dietary prevention and treatment of type 2 diabetes with two different interventions: one low carb and one low fat. Cathy van de Mortelewas the PWD involved in this segment of the session, and we couldn’t help but have a little giggle that she had been selected. Those who know Cathy know she is anincredible baker and cook. Her creations are magical and if I lived in Belgium, I would be at her place for dinner three nights a week. But low carb and low fat? Not so much! However, she did give a really useful perspective on the need to remember that different eating plans need to be sustainable and what works for one person may not work for another.
Secondly, Dr Carolin Danielspoke about her research in type 1 diabetes prevention vaccines. Dr Katarina Braune stepped in as the PWD (she is also a researcher and endo) to give her comments on the research. It was interesting hearing Katarina, because she comes from the perspective of a scientist as well as a PWD, so her considerations were different to other PWD who spoke. Her questions and comments incorporated the scientific as much as the ‘real life’, and I loved the way she was able to so succinctly and eloquently translate it all so it made sense to someone like me without a scientific bone in my body!
And finally, Dr Julia Szendrödispoke about diabetes-related complications. While the research was specifically about the mechanisms in the development of complications, as well as looking at potential interventions, I was invited to be the PWD in this discussion to lend my language focus. I highlighted how conversations about diabetes-related complications need to be without judgement and stigma, and that at all times, remember that although a single body part may be in question when speaking about a specific complication, it is attached to a person with a whole body and mind that must also be considered.
To be honest, I felt that my comments were almost redundant because Julia did such a beautiful job in her five minute explanation of her work of ensuring that there was no blaming or shaming. I thanked her for this because the language in pretty much every other discussion of complications I had seen that week was not all that palatable!
I love the idea of including PWD to shape diabetes research. And I loved the discussion at EASD. It was an excellent example of how to include PWD in discussions – even highly scientific discussions. And just how easily it can be done!
This event was the first one, but hopefully the organisers have seen the value of conversation-based sessions including different stakeholders. It would be great for events such as this to attract even more attendees – researchers, HCPs and PWD – although a huge thanks to the German PWD contingent who was there, flying the advocate flag and supporting us – and to see them on the main program of the conference.
DISCLOSURE
I was invited to provide my perspective at the DZD meets #DEDOC presented by Deutsches Zentrum für Diabetesforschung. I did not receive any payment to speak at the session. Thanks to Bastian Hauck from DEDOC (the German Diabetes Online Community) for involving me!
Roche Diabetes Care (Global) covered my (economy) travel and accommodation costs to attend their #DiabetesMeetup Blogger event at #EASD2018 and present at their media event the day before EASD. Roche Diabetes Care also assisted with providing me press registration to attend all areas of the EASD meeting.
I’m heading to Sydney this morning (it’s early…too early) for the Australasian Diabetes Advancements and Technologies Summit – ADATS, (follow along at #ADATS2018), which had me thinking about the conference last year where I spoke about Loop, scared a shitload of HCPs, was almost traumatised into never speaking again in public (almost – didn’t happen) and was happy to be branded non-compliant.
Today will be a far gentler experience – my role is as a member of the organising committee, and as a session chair. Surely no one will want to sue me for that. Right?
As I ponder that, and reminisce about last year’s talk, here are some links. So many links that I have been wanting to share. So, have a cuppa, have a read, and share stuff.
Also, being deliberately non-compliant is kind of fun…
(Disclosure first: My flights from Melbourne to Sydney are being covered by the National Association of Diabetes Centres (NADC), the organisers of ADATS. I am on the organising committee for the conference.)
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Finally DIYAPS makes it to the mainstream media in Aus
I’d heard of The Saturday Paper, (which was a surprise to the journalist who interviewed me), but apparently not all that many people have. It’s a weekly newspaper (somewhat unimaginatively named – it’s a paper and comes out each Saturday) with long-form articles. One of those articles was about DIYAPS and came about after journalist Michele Tyde heard about the Diabetes Australia DIYAPS Position Statement.
Read the DIYAPS Position Statement here.
The body part is connected to the PWD
‘Talking about the “diabetic foot,” the “diabetic kidney,” or the “diabetic eye” suggests they are somehow separate from the person whose body actually hosts the diabetes. This language suggests the diabetes-complicated body part is more like a malfunctioning car part that needs service – if only we could be provided with a courtesy foot, eye, or kidney to use until our own is better!’
The language at ADA this year (all the way back in June…all the way over in Orlando) didn’t really set off too many alarm bells. Until we had a good look at the program. I wrote this piece with The Grumpy Pumper for diaTribe about how it seems that #LanguageMatters a whole load less when talking about diabetes-related complications…and that needs to change.
Conference blogs
It’s great to see the Ascensia Diabetes Care team continue to support diabetes bloggers by inviting them to write up their thoughts on diabetes conferences. The latest contribution is from Sascha Stiefeling (who blogs at Sugar Tweaks) where he gives some insights into the start of EASD. (It was written in German and translated into English.)
Oh – and here’s the post I wrote for them about the Australasian Diabetes Congress a couple of months ago. (I was not paid to write this, or supported by Ascensia to attend, but I did work with them on their Social Media Summit.)
No weakness at all
On Mental Health Awareness Day this year, UK writer and poet David Gilbert wrote this beautiful post about the strength – not weakness – of living with mental illness.
How we are wrong about obesity
This piece about obesity is a must read. It talks about how weight bias from healthcare professionals and stigma often results in higher weight people avoiding going to the doctor because they fear discrimination, not being believed and being shamed.
More on weight stigma
And read this piece (also on diaTribe) about how weight stigma hurts people and affects health outcomes.
Keep Sight
This week, Diabetes Australia officially launched the first ever national eye screening program, Keep Sight. The program will make it easier for Aussies with diabetes to get their eyes checked. You can read about the program here (from when it was announced back in July).
Disclosure: I work at Diabetes Australia, but was not asked to write about this program. I’m doing so because it is important.
Your story is important
True champion of listening to ‘the patient’, Marie Ennis-O’Connor wrote this wonderful piece about the power of storytelling in healthcare.
Always be kind
I’m always fascinated to read stories from HCPs who write about their experiences on the other side of healthcare. Moving from care-giver to the one needing care can be life-changing. In this BMJ Opinion piece, health researcher Maria Kristiansen writes about how important compassion and kindness from healthcare professionals were for her and her family during her young son’s illness and death.
More on kindness (because we can never have enough)
The first sentence of this article in BMJ by Dr John Launer had me hooked: ‘I’m not a clever doctor, but I’m a kind one’. Have a read.
Diabetes in hospital
I know I’m not the only one to be terrified of needing to go into hospital, worrying about a lack of knowledge about type 1 diabetes treatment and my technology, and having to fight to maintain ownership of my own diabetes care. Adam Brown at diaTribe has written about his recent trip to A&E, surgery and subsequent recovery after his appendix ruptured. Lots of great tips for anyone who may wind up in hospital.
Digital diabetes
How can digital medicine and research, and artificial intelligence transform diabetes? That’s the question research scientist in diabetes, Dr Guy Fagherazzi, asks in his (open source) review in Science Direct that you can read here.
Bake these!
And finally…It’s nearly the weekend and if you have a spare 20 minutes, you really, really should think about baking these! They are crackled parcels of molasses, spice and all things nice and are, quite possibly, one of the best things I’ve ever baked.
I’ve been thinking a lot about motivation recently; specifically, how we remain motivated living with a lifelong health condition that places so many demands upon us. It’s something I also get asked about a lot by others with diabetes – often people newly diagnosed: ‘How do you stay so motivated.’
It’s all smoke and mirrors, because the truth of the matter is that most days, my motivation to ‘do diabetes’ is very low. In fact, I think that there is a spectrum of motivation where zero is ‘What diabetes?’ and ten is ‘I log everything…EVERYTHING…ask me how many carbs I ate yesterday and what my BGL was at 3.10pm and 5.55pm. Go on…do it. Because I can tell you. Do it. Ask me. And also, yes! I can tell you why my glucose levels spiked at 10.12am three months ago on a random Tuesday. Also, look at this: it shows how my glucose levels are impacted by the phases of the moon. In other news…here’s my last fifteen years of A1cs displayed pictorially, but I can also demonstrate them using interpretative dance if you would like me to. Would you? You would, right? Let me just find my Kate Bush playlist on my iPhone…’
Generally, I’m a solid 3.5. I don’t do graphs, I have a vague idea of what my CGM is telling me now-ish, and I can tell you my A1c to within about 0.5 per cent. I call this winning.
I have had periods – extended periods – where I am far closer to zero, which have not been great because that has added ‘not-doing-diabetes-guilt’ to the simple ‘not-doing-diabetes’ which basically equalled feeling crappy all around. And I’ve also been closer to ten – this, for me, was called ‘pregnancy’ – and I was borderline obsessive.
Someone recently asked me if I thought there was a secret to staying motivated. I don’t think there is, because surely, at least one oversharing blogger would have written about it by now.
But I do believe there are small factors that, when combined, do make it easier to remain, if not enthused, at least stirred to keep chugging along with diabetes.
Firstly, in range numbers beget in range numbers, and in range numbers make us want to check for more in range numbers more frequently. It’s undeniable that when we see numbers that don’t cause the response of rage, frustration, sadness, stress or anxiety, we are more inclined to check again. And again.
Technology that helps rather than hinders makes everyone feel better. Many think that it’s a given that new tech makes life easier, but unfortunately, that’s not always the truth, because often – at least to begin with – it requires more input from the user. Actually needing to do more, but not necessarily seeing results is not a recipe for remaining enthused!
Boring tasks are boring, so any way that we can eliminate them or reduce them helps. Making appointments to see our HCPs, finding time to visit a pathology centre for quarterly A1cs (and more) and keeping our diabetes supplies and meds current all take physical time as well as mental time. I have a pharmacist who is like my personal assistant when it comes to reminding me that it’s probably time to reorder insulin and NDSS products and prompts me when I need a new insulin prescription and I cannot tell you how much I love her. She sends me texts messages (totally unobtrusive) and I reply by text and then a day or two later pop in and she has everything ready for me. I can’t remember the last time I ran out of something, thanks to Mae!
But for me, if there was a silver bullet, it would be this: I am motivated because of today. Today, I have been able to do everything I have wanted to do and diabetes has not stopped me, even momentarily. And that makes me want to do it more.
I know that a large part of that is that I have the capacity, the will and the ability to do what I need to make this happen. I speak from a position of privilege, because I also know that the devices I am using – and am able to afford to use – certainly do help me with everything. They have helped to make my diabetes today doable, manageable, and as untroublesome as diabetes can be.
You can threaten me with what is going to happen in five, ten, twenty years’ time; you can tell me about all the disabling and debilitating complications that will happen if I don’t remain motivated and how they will impact on my life as a fifty, sixty and seventy year old.
But unless what you are saying is going to impact on me right here, right now, I can ignore it, and I can ignore the things that may help me reduce the risk of those things happening.
Perhaps that’s where public health messages about diabetes get it wrong. They tend to focus on longer term impacts. It’s not just teenagers who believe they are invincible. Despite a body that each and every day looks less like that of a sprightly youth, I think I am still young. I think all the things that are considered long-term issues are still years off. Being unmotivated doesn’t seem to matter when I don’t need to deal with those issues today.
But when diabetes does impact on my day now, then I notice. More hypos, more hypers, more interrupted sleep, more roller coaster numbers, more exhaustion, more feeling crappy. All of these things make day to day life more difficult. And I want to avoid them as much as I can.
I’m quite pleased with my solid 3.5. Sure, it could be better. Sure I could do more. But it’s consistent. And it’s achievable. Plus, quite frankly, everyone around me should be pleased with the absence of interpretive dance.
Click to get your own Casualty Girl bag.
Grumps in Australia last month. (He’s on the left.)
In a former life, I was a music teacher. It was always very clear to me that there was no one way to teach that worked for all kids, and there was a need to somehow tailor my teaching style to meet the kid standing in front of me.
A common cry in diabetes is that no one size fits all when it comes to diabetes management or treatment plans. Surely, that same idea extends to diabetes education.
Today, Grumps is back at Diabetogenic with his next #WWGD post, (which is good because I am far too busy eating my way around Italy). He’s talking about learning styles when it comes to diabetes, and what works for him.
Take it away, Grumps. (I’ll just go back to slurping through this lemon granita…)
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Since being diagnosed back in the dark ages, when there was no internet and my BG check was called a ‘BM test’, I have had to learn medical stuff.
I’m OK with that.
I mean really OK.
I just see my body as the vehicle that I have in order to drive my way through life, to get to the places that I want to be. As I get older this vehicle that I live in gets a bit more banged up. Bits of it get damaged or fail. Hopefully my gear stick never falls off…
I do, of course, have the luxury of age. Diagnosed at the age of twenty-five, it was easy for me to accept immediately, and I just needed to know what manual things I needed to do to compensate for the glitch in my engine management system.
Queue the learning of medical stuff. Constant learning of some quite complicated and detailed stuff.
So, this is where my issues lie. I’m no great student. I have the attention span of a…
I don’t learn well by reading, or listening so if you want me to learn that way, then keep it brief and use simple and short words.
Ah…
That’s not really how medical stuff is written, now is it?
Over the years, I’ve learned a lot about my diabetes, with most of that learning in the latter years with the advent of the internet, social media and good old You Tube. As a visual learner, these have really helped.
Now, these days I’ve had to learn more medical stuff. Different stuff. All about my foot and associated diabetes-related complications, (I know, I don’t mention it often…), and the other day I got the results sent through of my latest MRI scan, packed with medical stuff…
Errrrmm. What?
Faced with all these words and terms… (I know, it’s taken a while to get to this right?)… ‘What Would Grumpy Do?’ (#WWGD)
In a word. Pictures!
A bit of Googling, a bit of fiddling and it all starts to make sense to me.
I sent it to my podiatry team. They liked it and are considering adopting it as an idea for explaining foot issue to the people that are living with them.
I have learnt over time that this is the best way for me to understand all of this medical stuff, which means that I can do what I need to keep this vintage vehicle on the road.
Maybe a person’s learning style should be assessed and understood at diagnosis in order to ensure that all of the information that we need to absorb is given to us in the way we need it to be?
Our diabetes may vary. So does the way we learn.
Live Long and Bolus!
Grumps
You can get more from The Grumpy Pumper by checking out his blog here. And following him on Twitter here.
Click to be taken to Daisy Natives store.
I bought a new t-shirt the other day. I saw it on Instagram and decided that I just had to have it. I’m not sure if it was growing up in a mostly female household; or the six years I spent in an all-girls school; or perhaps it’s the friends I am fortunate enough to be around a lot; or maybe the fact that most of the people I work with are dynamic women; or raising a daughter in 2018. Whatever it is, girls supporting girls, and women supporting women is the approach I have always tried to take in both my personal and work lives.
I guess my thinking is that we need to look out for and support each other because we know that outcomes for girls and women around the world are not always that great. And also, when women build each other up, and support and encourage each other, we are unstoppable!
I was thinking about this last night as I followed a Twitter conversation that all started after a somewhat sensationalist article in a newspaper about a bloke (sportsperson?) who, as it turns out, seems to have some diabetes-related neuropathy. As people shared the article and spoke about it, there were a couple of comments from people with diabetes about this person – another person with diabetes – ‘not looking after himself properly’.
When I started reading, I almost pinched myself to make sure that I hadn’t been sucked into some sort of void, and been dragged back to another time. Because this conversation has happened before – countless times. (A search through Twitter and this post pointed me to just a couple of those times.)
Diabetes-related complications and stigma. Diabetes-related complications and language. They go hand in hand. And along for the ride is judgement.
The complexity between diabetes, and developing diabetes-related complications is far too much for my little brain to comprehend. But I do know that there are no guarantees in diabetes. And I know that blaming people for whatever path their diabetes travels is not helpful in any way.
When someone suggests that another person with diabetes is ‘not looking after themselves properly’ there is a lot packed into that. It may not be intended, but that comment is so loaded with blame and shame and judgement that it becomes agonisingly heavy and, quite frankly, terrible.
To suggest that someone’s diabetes-related complications are the result of them ‘not looking after themselves properly’ means that essentially what is being said is that the person intended for this to happen. That they ‘brought it on themselves’. That they deserve to now have to face a future of diabetes-related complications.
To that, I say bullshit!
And, somehow, it is even worse when a comment like that comes from another person with diabetes, because if anyone should understand how harmful judgement can be, surely it is others with diabetes.
Supporting each other doesn’t mean just patting each other on the back and saying ‘good job.’ It is far more than that. It is acknowledging that we are doing the best we can at that moment time with what we have. It’s accepting that there are myriad ways of managing diabetes, and that people should have the right and the ability to choose the way that is right for them – even if we don’t think it is right for us. It is encouraging others’ efforts, cheering their successes and standing alongside them when things are tough. It is being happy for other PWD when they are doing, or being invited to do, great things.
It is not saying ‘You are not doing enough’.
We would be quick to say that it’s not okay for a healthcare professional to suggest that we are not trying hard enough. We don’t accept it when the media make claims that people aren’t looking after ourselves properly. We push back and say it is not okay when those without diabetes suggest that we are not doing our very best.
And in exactly the same way, it is not okay for other PWD to criticise one of our own because, honestly, we should know better. We should be on the same side. We should be building each other up.
It is completely unreasonable to expect that people with diabetes are going to agree on everything, and actually, who would want that anyway? Diversity of opinions is as important as diversity of experience. We all have our own ideas and ways to live with diabetes and there will be times that we completely disagree. That is all fine, as long as it is done with respect.
But even with those differences – differences that we can celebrate – the commonality of messed up beta cells should be what brings us together to be on the same side.
I could be Pollyanna-ish about it all and say that we should just be kind to each other, and that may be a good place to start.
Living with diabetes is fucking hard. We never, ever get a break from it. No matter how manageable our diabetes seems or how cruisy things may be at a particular moment, it is still always there. It doesn’t matter if we are scaling mountains or running marathons. Or living our dreams or travelling the world. Or getting up in the morning and going to work or school. Diabetes does not take a break.
Diabetes doesn’t take a break. But we can give each other one. No blame. No shame. Just an acknowledgement that we are doing the best we can. PWD support PWD. That’s what makes us stronger. That what makes US unstoppable!
P.S. If you really don’t agree with what someone is doing with their diabetes, you can say nothing at all. You don’t have to be critical.
Just over half way through the Australasian Diabetes Congress and after a massive few days, I’ve lost my voice, my way and, my ability to form coherent thoughts. Thank goodness for links and stuff.
Grumps Down Under
Before the Austalasian Diabetes Congress (ADC) even kicked off, our skies darkened, a final Winter cold-blast hit the east coast of Australia and The Grumpy Pumper arrived. Oh, and Melbourne lost our World’s Most Liveable City crown the day Grumps arrived in my hometown. I’m not necessarily saying these things are connected, but that’s a lot of coincidences…
Anyway, Grumps and I spent the next few days drinking Melbourne coffee and tackling the issue of language and diabetes, and Grumps spoke about his #TalkAboutComplications work. The ACBRD team has written about his visit last week here.
Coffee. Because: coffee.
Once Melbourne had enough of Grumps, we headed to Sydney to do more work, including visiting the offices of Life for a Child and catching up with some of the team there.
#OZDSMS
After arriving in Adelaide, it was straight to the conference centre for the first gathering of Aussie diabetes advocates and bloggers for Ascensia Diabetes Care’s Social Media Summit.
Grumps was the special guest and as well as speaking about diabetes complications, he and I led a discussion about decision making in diabetes technology.
You can see what all the chatter was about by checking out the #OzDSMS tag on Twitter, (there was a lot of discussion!), and I’ll be writing more about it in coming days.
Hard at it!
DIYAPS at ADC
The next day, ADC kicked off with a symposium on the Brave New World of Diabetes Technology. Three early Aussie loopers – Cheryl Steele, David Burren and me – took to the stage and you can watch all our talks here:
New DIY Diabetes Technologies Position Statement at ADC
And if you make it all the way to the end (the symposium went for 2 hours all up), you’ll see Diabetes Australia CEO, Greg Johnson, launching Diabetes Australia’s new position statement about Do It Yourself Diabetes Technologies. I am so proud of this world first position statement, something that all diabetes stakeholders from all over the globe have been crying out for. (A reminder to anyone asking ‘Why don’t we have one of those?’: please don’t reinvent the rule. Adapt and use this for your jurisdiction and get it out there to start the conversation.
(Click link to go to position statement)
PWD on stage at ADC
Later in the day, the stage in Riverview 7, I was pleased to stand on a stage crowded with some wonderful diabetes advocates for an ADC first – a symposium on Co-design. More about this another time, but some familiar Aussie advocates shared their work which has really advanced the role of people with diabetes in the development and delivery of diabetes services, activities and resources. I was so pleased to be able to show the new Mytonomy ‘Changing the Conversation’ video as an excellent example of co-design.
Melinda Seed and Frank Sita at the co-design symposium
Sexy new pump hits Australia
And rounding out day one was the official launch of the Tandem t:slim pump which is making its way to our shores next month. This is a sexy, sexy little pump and I know there are going to be a lot of people very excited about it! (The pump is being distributed by AMSL Diabetes in Australia, so keep an eye on their website for more details.)
PWD at ADC
Pleasingly, there has been a presence of people with diabetes at ADC. Probably this is most visible when reading social media updates from the #DAPeoplesVoices. David Burren, Melinda Seed and Frank Sita have been invited by Diabetes Australia to provide updates and commentary of the Congress. They are tweeting machines and have been covering sessions, live-tweeting throughout. But that’s not all! Ashley Ng facilitated a Twitter workshop, encouraging HCPs at the event to get on Twitter and share what they were learning. Kim Henshaw is here from Diabetes Victoria; Tanya Ilkew from Diabetes Australia is also here. Grumps is here. And I’ve been doing what I can in between presenting and meetings.
I crashed last night with my voice gone, and fell asleep wrapped in the memory of a brilliant few days of impactful and meaningful advocacy efforts. There’s so much more to do. But these sorts of events, and opportunities to spend time with other people with diabetes who are certainly on the same wavelength and have the same commitment to bringing in the voice of PWD to all discussions, certainly help to advance our cause.
And one more thing
It looks like it’s that time again, Australia…
Disclosures
I was involved in the planning for the Ascensia Diabetes Care Social Media Summit and attended and spoke at the events Grumps attended. I did not receive any payment from Ascensia for this involvement or for attending the Summit. They did provide lunch and dinner, and gave me a free Contour Next One blood glucose meter. And an almost endless supply of coffee. Ascensia has not asked me to write about any of the work I’ve done with them. But I will, because I like to share and I know there are people who are desperate to know what was going on while Grumps was here!
Grumps was here as a guest of Ascensia Diabetes Care, who brought him to Australia to be the keynote speaker at the Ascensia Australia Diabetes Social Media Summit and to speak at other events about his #TalkAboutComplications initiative.
I was in Sydney last Friday for a day of meetings, and once they were done, I met up with a new diabetes friend, Amira, who I met only a couple of months ago, but had instantly connected with in that way that only those dealing with messed up beta cells do.
I met her at work and then we walked to have a coffee and a chat. After a while, our conversation turned to her work as an optometrist. Amira told me about the camera she uses to do retinal scans.
I mentioned that I’ve never had a retinal scan as part of my eye checks. My ophthalmologist always dilates my pupils and spends a good amount of time looking at the back of my eyes for any changes. This is how my eye care has been managed and I have always been happy with it (and by ‘happy’, I mean: ‘it makes me cry just thinking about it, but I do it anyway’).
‘Would you like me to take a photo of your eyes?’ Amira asked me. ‘You can send the images to your ophthalmologist to keep on file.’
I thought about it for a moment and took a deep breath before answering. ‘Sure,’ I said. ‘Let’s do that! Thank you!’
We walked back to her office and Amira explained how the camera worked and how I needed to position my eyes. After scanning both my eyes, she sat with me and explained exactly what she could see. She pointed out each part of the eye and what she was looking for and patiently answered my questions. She showed me how she could see the artificial lens that had replaced my own when I had my cataracts removed. (And she clarified that the black spot that I was the first thing I saw was actually a mark on the camera – not my eye.)
She told me exactly the same thing I’d heard back in May when I most recently saw my ophthalmologist: ‘Looks great. There’s nothing to be concerned about.’
I wish that THIS was the first time I had ever seen the back of an eye of someone with diabetes, instead of the frightening image shown to me less than eight hours after being diagnosed, when my first endo showed me a photo of an eye with – apparently – diabetes-related retinopathy. I say ‘apparently’ because I had no idea what I was looking at and had no idea what anything meant.
But that image, accompanied by the words ‘This is what happens with high blood sugars,’ has resulted in years and years of seeing an out of range number on my glucose meter and automatically imagining my retina decomposing…behind my very eyes.
This, combined with other scary images used as part of diabetes awareness campaigns, not to mention the occasional poster in the waiting rooms of various HCPs, is why I am so terrified about anything to do with eye care.
And when we also add the blame and shame that inevitably accompanies discussions about complications, using language that disempowers, it is no wonder that my response to Amira asking if I wanted a photo of my eye was to automatically panic.
Despite twenty years of regular checks, with positive outcomes and a supportive ophthalmologist, the legacy of that initial encounter and subsequent frightening images have taken their toll.
Amira emailed me the images of my eyes, and I’ve spent a long time looking at them – because I know what I am seeing (plus, my eyelashes look awesome!). This is information. It is a snapshot in time and, thanks to Amira’s explanations, I understand what is going on .
‘Come and have another scan next year,’ Amira said. I might just do that. While it will be great to have annual images as a comparison, the best part will be I get to spend time with my awesome new diabetes friend!
Amira has provided me with this explanation of the camera she uses and what it does:
‘Ultra Wide Daytona Plus provides contrast and both red-free and green-free filtering, as well as autofluorescence modalities (so we can see layers in front and behind the retina and assess which part is affected).
Photo documentation means we can monitor and track overtime, allowing for early detection. 200 degree retinal scan compared to a standard scan that often gives around 45 degree view.’
I had an endo appointment yesterday. It was my first in over six months, but this was by choice, rather than inattention. Last November, I decided that I really didn’t need a three month follow-up appointment, and my endo agreed. So, after settling my account for the visit, I made an appointment for May this year. A work trip to Copenhagen via London necessitated a reschedule and this was the first appointment time available that worked for me. The six month follow-up timeframe was pushed out to eight months.
Early last week, I called for a pathology request to be sent to me so I could have a blood draw before heading in. While I had a list almost as long as my arm of things I wanted to discuss, I really am trying to stay on top of having regular screenings so that we can compare results year to year.
Clearly, I am in a really good headspace about my diabetes and, in particular, diabetes HCP care, at the moment. I am happy to attend appointments. Even though I needed to cancel the May appointment, I made a follow up and kept it. I had all my bloods done beforehand. This is a far cry from how I was just a couple of years ago … when actually, I was crying just thinking about it all.
So, last Thursday, I made my way to a local pathology clinic, my request slip scrunched tightly in my hand. And I realised that even with my generally low level of worry about all-things-diabetes, I felt my anxiety levels going up in the days leading to, and the day of, the blood test.
‘I’m nervous about having my A1c done,’ I said to someone last week, and, puzzled, she asked why. It was a sensible question to ask, because truthfully, of all the things I was being checked for, that was the one that I had a pretty good idea what the result would be.
I estimated my A1c and got it right to 0.2 percentage points. The truth is, I am totally ambivalent about A1c. I couldn’t care less about the number because my TIR is where I want it, and I knew this would be reflected by a way-in-range A1c number. (I take no credit for it – it’s all Loop.)
But my kidney function? My cholesterol? My thyroid function? Coeliac screening? Everything else? I have no idea how they are tracking. There is no app on my phone to remind me how I going with those, or helping me guess what they me be. I have no Loop for my kidneys!
I realised that was the source of the anxiety, not my A1c, even though that’s where I was pointing. I guess that makes sense: feeling nervous about A1c results is expected and easy to explain. But the truth is that wasn’t my I was feeling uneasy.
Those complications screenings that I am diligently trying to make sure I have annually still terrify me. Both in the lead up to having the checks done, and then as I wait for the results.
The beast of diabetes that lives within our very core behaves in different ways. Often it is slumbering, lying almost dormant, lulling us into a false sense of all is well. I guess that is how I have felt since I started looping. I say that I am the least burdened I’ve ever been my diabetes because my diabetes is not thrashing around and making itself known so much. But this last week, it has started to wake, reminding me of its presence. I have felt diabetes more in the last week than I have in the last ten months.
I tried to describe this to a close friend the other day – a friend who has seen me live through some pretty horrid diabetes times, and celebrate some damn fine ones. She asks sensible questions and is always listening and learning. She gets it. But she struggled to understand how I could move from saying I’ve felt the best I have ever felt in relation to my diabetes to suddenly speaking of the anxieties that I hold so deep; especially when nothing had changed.
It’s the unknown. It’s the waiting. It’s the fear of what I may be told. That is the beast.
Today, the lightness in my step and in my heart as returned. The appointment went well, the results showed little, if any, change from the last screening checks. I am back to feeling the way I was before last week. After stirring, and stretching, the diabetes beast has curled up and resettled, and is hibernating again. At least, for now…
Waiting with diabetes
