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Yesterday, I wrote about a Facebook post that I came across which I felt was powerful and showed the value of social media and support. I shared that post here.
And yet, with one hand, Facebook giveth; and the other it taketh away.
Because then I came across an article about diabetes that make my blood boil. I clicked on the link (which I reluctantly share here) as I stood waiting to board my flight to Brisbane and actually said ‘Oh, for f*ck’s sake’ out loud, impressing the guy in front of me and earning me a dirty look from the woman standing next to me.
The article is actually from the beginning of the year, however, thankfully, I have somehow managed to avoid it for the last 10 months. But yesterday, there it was. Sprouting misinformation about the health condition I live, most reluctantly, alongside.
I only have myself to blame. What did I expect reading the Daily Mail? Certainly not anything resembling decent journalism. And certainly not something based in fact.
The title of the article was the first thing that had me scoffing: ‘I’m scared to go to sleep’: Mother’s 24/7 struggle to keep her daughter alive as they battle form of diabetes that could kill the 15 year-old in minutes.’ (Emphasis all mine.)
Now I am the first person to say that I certainly don’t know everything about diabetes. I’ve never ever claimed to, but I am pretty sure that there is no form of diabetes that can kill someone in 15 minutes. And yet, according to the article, Grace, the fifteen year old in the article, ‘could die within minutes without insulin injections.’
Again, I am no expert. But I know that fifteen minutes without insulin isn’t going to kill me. Or anyone. Even if I ate a whole pavlova washed down with a bottle of full-strength Coke.
But there was the Daily Mail claiming that death would eventuate if there was a quarter of an hour delay in insulin administration. (This bodes most poorly for me and my ‘shit-I-forgot-to-bolus’ days that seem to plague me when there is something more interesting than pinging insulin into my body.)
Apparently, this form of diabetes was caused when …’the disease caused her immune system to eat her own pancreas…’
I understand the need to use language that makes sense to people when it comes to describing what diabetes is all about. But suggesting that diabetes causes our body to ‘eat’ vital organs is the stuff of horror movies, not autoimmune conditions. Surely, the general public can understand the explanation that ‘type 1 diabetes means the pancreas is no longer able to produce insulin’, or something similar that doesn’t suggest some sort of extraterrestrial being has moved in and is feasting on our insides.
I find articles like this frustrating on a number of levels. It is such a melodramatic and false description of type 1 diabetes that it amazes me that anyone could consider this enlightening or educational in any way whatsoever.
This is a perfect example of misreporting of type 1 diabetes, but the voices of OUTRAGE that accompany the potential confusion of type 1 and type 2 diabetes, or the ‘people don’t understand what it is like’ are missing here, instead many are saying that it is a good representation of what it’s really like. And this confuses me greatly.
Because all I see us an article with a lot of incorrect information.
How anyone could consider this article as anything other than disempowering, stigmatising and downright damaging to those of us living with diabetes is beyond me.
‘How’s that working for you?’
‘Sorry?’
I’m at Parliament House in Canberra preparing for a type 1 diabetes and technology event being held later today. Walking through security, three security staff honed in on my upper arm.
‘Your patch, is it doing the trick?’
I was confused. ‘I’m sorry. Excuse me?’
‘Are you an ex-smoker?’
‘Oh! This? It’s not a nicotine patch. It’s a continuous glucose monitor. I have diabetes.’
I don’t know if they believed me. I gathered my bag and moved on through the security area. ‘Diabetes,’ I said again. ‘It checks my blood sugar.’
My invisible illness is pretty visible today.
I made the decision yesterday morning to site my sensor on my upper arm rather than my stomach. The last two sensors I have worn left my skin slightly irritated, so I though I would give the skin around my belly a rest. I also haven’t been thrilled with how long the sensors have lasted – the last two survived a mere 10 and 12 days which is not great when I have been known to get closer to three weeks. (I know, I know, they are meant to work for 7 days. But at over $80 a pop, I do everything in my power to make sure they last as long as bloody possible!)
Before I got to work yesterday morning, three different people had asked what the thing on my arm was. Once I got into the office, another couple of people asked (…don’t even want to remind you all that I work for a diabetes organisation…)
Waiting for a coffee at my local this morning, the barista asked about it and yesterday, at the cafe near work, I could see the people around me looking at my arm and heard them guessing what it was.
At the airport today, a security guard asked if it could be removed and then wanted to engage in a conversation about it, and the woman sitting next to me also asked about it.
It’s been very confronting.
I have never hidden my diabetes. I used to inject at the dinner table before starting pump therapy. And since using a pump, I pull it our from under my clothes to bolus, or see my CGM graph without a second thought. I check my BGL whenever and wherever I want.
But while these diabetes chores occasionally attract a comment, it is nothing like the last two days.
I found myself sitting at lunch today with my right arm cupping the transmitter and sensor to hide it from view. I’ve been cursing the beautiful weather that means I don’t need to wear long sleeves to cover the device. And I’m terrified that people think I am wearing it on my arm to attract attention.
I have always been able to see the pros and cons of having an invisible health condition. Sometimes, the fact that there are no obvious signs of diabetes means that people don’t understand how significant a role it plays in day to day life. But the flip side is that it can be neatly packed away; it can be private. I actually love that about it.
But right now, I don’t have that luxury. Right now it is out, loud and proud for all to see. And I am not comfortable with it at all.
Tomorrow is Drop the Jargon day here in Australia. According to the campaign website, the aim of the day is … for professionals in Australian health, community services and local government to challenge themselves to use plain language.
People working in the health space are being urged to take a pledge to assist Australians who have low literacy make sense of health information and help them navigate our health system. Six out of ten people in Australia have low health literacy, so there is a real need to make sure our messages and information are presented in a way understandable to everyone.
The pledge asks people to:
- Use plain language in all communication
- Not use acronyms
- Explain medical and other technical terminology
- Check that information has been understood by your clients
- Work with a professional interpreter when necessary
- Politely point out when your colleagues use jargon
Diabetes is a condition rife with jargon. I’ve said before: it is like another language. I am as guilty as anyone when it comes to popping in acronyms, technical terminology and assuming everyone knows what I am talking about.
The website includes a link to a handy Plain Language Thesaurus to assist with finding simpler, clearly and less ‘jango-istic’ words when writing health information.
When considering writing in this manner, a lot of sensitivities and intricacies about different conditions are lost. For example, the thesaurus suggests replacing ‘diabetes’ with ‘elevated sugar in the blood’. (Amusingly, the same document suggests – just a page or two down – to replace ‘elevate’ with ‘raise, lift, make higher’.) Obviously, this doesn’t provide a particularly rounded definition or explanation of diabetes, and those of us who ‘get’ this space and understand the words we use when talking about it could criticise the ‘dumbing down’ of what diabetes is all about.
But think about it. If you were new to the diabetes game – just diagnosed or a family member was just diagnosed – and your health literacy was considered low, then this is probably a good starting point. It is certainly better than ‘a touch of sugar’, which are the words used by some healthcare professionals STILL when telling people what diabetes is.
I guess the dilemma for me – as someone who does a lot of writing about diabetes – is that I know that there are some people who want and need more information. Frequently, I write for people whose health literacy is of a higher standard, and there is a need to write at an appropriate level for this target group too. They want – and are able – to read technical and quite difficult jargon.
But I can never ever assume that is the case for everyone. When writing for this blog, I use language very much the way I speak – whatever comes into my head, thoughts going at a million miles an hour, lots of jargon and, if my hands weren’t flying across the keyboard, they would be flying around the air. It’s not really great for people whose health literacy is not high.
However, when writing for work, I am far more conscious of not doing those things. But I suspect, I am not conscious enough. Which is why I will be taking the pledge, and why I think this is a terrific initiative for those of us working in the health space.
I’m feeling a little exhausted today. Fatigued. Burnt out. Drained.
People often ask me how I manage to keep diabetes in perspective. As well as living with diabetes, I work for a diabetes organisation. I am a diabetes advocate, travelling the world talking about my experiences of life with diabetes. I talk to a lot of people about their diabetes. That’s a lot of diabetes – much of it not mine.
Most of the time I manage quite well, thank you very much. I am the queen of compartmentalising and I have learnt to leave work stuff at the office. I turn away from online conversations that annoy, sadden or anger me, and I make sure that the people with diabetes I call friends – who I enjoy spending time with outside of professional settings – are people with similar attitudes to living with a chronic health condition to me.
But this week, it has been hard to turn off the noise.
Online in the diabetes space, there has been a lot of chatter. It is in segments of the DOC I generally stay away from because it is not my diabetes space. But for work purposes, I’ve needed to be in there this week. Watching, reading, and hurting. I am feeling hurt for my tribe.
Let me be very clear here, my tribe is other people with diabetes. It is not their support people or their parents or their partners or healthcare professionals. It is people – children and adults – with diabetes. And in some instances, I don’t think they – we – are being served well.
We are quick to jump in when a healthcare professional or the media is doing a disservice to people with diabetes by misrepresenting the condition. We berate them, saying they don’t know what it is like to live with diabetes so how dare they say what they are saying; that what they are doing is adding to the considerable stigma surrounding diabetes. Yet there are people living with someone with diabetes – but do not have it themselves – who are just as guilty of stigmatising those of us living with it every day.
While I acknowledge and understand the importance of those other people – it takes a village, a fucking village, to live with diabetes – it cannot be denied that the only people who really know what it is like to live with diabetes is those of us who are actually doing it. Day in. Day out. As much as a loved one says they too are living with it, they are not. Their experiences of diabetes are no less valid, no less important, no less part of the fabric of the diabetes space. But they are not the ones living with it every day.
I am not minimising the experiences of those walking alongside us. We need you; we are so grateful to have you there. But you are not walking in our shoes. In exactly the same way that I am not walking in yours, and therefore, cannot understand exactly what it is like to love someone with diabetes.
I’m tired of thinking about how some of the narrative about life with type 1 is playing out. I fear that it is painting a life lived alongside someone with diabetes as hopeless. My life is not hopeless. My family’s life is not hopeless because I have diabetes.
So this weekend, I am taking a break. My online interactions will be about other things – cookie recipes (I have some new cutters from Stockholm that need breaking in), Nutella memes and finding inappropriate e-cards to send to my sister.
Have a great weekend.
On Monday evening, diabetes got a mention on the ABC’s Q&A program. Read all about it over at the Diabetes Victoria blog today.
After writing on Monday about the confusion I feel when I complain about the lack of CGM subsidies in Australia and my out of pocket expenses when considered against countries where insulin is out of reach of many people with diabetes, this piece is about changing the landscape here in Australia. Write a letter, make an appointment to see your local MP, tell your story.
And if, just like me, you feel conflicted about the inequality of health care around the globe, think about making a monthly donation to the Spare a Rose, Save a Child campaign, raising money for Life for a Child. I just did it now – incredibly easy to do.
Also, read about T1 International’s efforts and take part in their We Are The WORLD in World Diabetes Day campaign.
Around $80 bucks. That’s how much it costs for a CGM sensor in Australia. It’s expensive and it is completely out of reach of most people living with type 1 diabetes. There is no subsidy: you want it, you pay for it yourself.
I have been wearing a sensor on and off for the last eight or so years, as long as CGM technology has been available in Australia. In the last two and a half years, it’s been on more than off. And recently, I have found myself feeling completely lost without it.
I know how fortunate I am to be able to afford it, I really do. And yet, after I called the company to make my last order, and read out my credit card details, I heard myself complaining about the cost – to pretty much anyone who would listen.
And there, in my world, seemingly oblivious to anyone living outside it, my indignation at having to fork over well-over $300 to pay for the device that I need/isn’t a privilege/keeps me alive/keeps me out of hospital/is necessary for me to be well/helps my quality of life/reassures me/reassures my family (or whatever lame-ass reason I was sprouting) was being repeated ad nauseam.
But sometimes, this privilege is brought home in ways that make me feel shamed and ashamed.
At ISPAD + APEG last week, I attended the IDF Life for a Child update. I make sure that I go to all the sessions run by the LFAC team at any conference I go to because I want to support the program in any way I can.
Many people will have heard of the Life for a Child program. I’ve written about it before – specifically when promoting the very valuable Spare a Rose, Save a Child campaign.
17,000 children from 47 countries benefit from the program. The focus and vision of LFAC have shifted slightly in recent years. It has moved from keeping children and young adults alive to improving health outcomes and quality of life.
The education and training initiatives developed by LFAC are making sure that there is sustainable impact being made to the lives of people living with type 1 diabetes. Much of this work is done through strengthening existing centres, which means more money going towards actually helping people, rather than the establishment of new institutions.
Each time I hear about LFAC, I walk away with a mixture of feelings – most of them associated with guilt.
I feel guilty at what I have, when so many have so little. But more so, I feel bad complaining about what I have. Feeling like a spoiled ‘but-I-want-a-pony’ kid is pretty confronting. And disgusting!
I feel inspired by the kids benefitting from the program. I hear their stories and I can’t help it but feel inspired. And then I hear Stella Young’s word in my head and know that they are not there to inspire me. They are just living. And then I don’t know what to do or how to feel. (And while Stella Young may have been referring to images of people with a disability when she coined the brilliant term ‘inspiration porn’, it works just as well when referring to these kids with diabetes.)
I don’t know how I go about acknowledging my privilege and not feeling guilty about it. I don’t know how to complain about some if the things that piss me off about diabetes without thinking ‘but it could be worse’.
I get mighty peeved when I hear people say ‘At least it’s not cancer’ because it starts to make different health conditions a competition. So is it okay to say ‘stop complaining – at least you don’t live in <insert country name> where you wouldn’t even have insulin and would be dead in a year’?
Diabetes is crap – it is a terrible condition, there is no doubting that. And I think it is fair to say that for some people, it is more difficult and it is more unfair. The things that make it harder for some are so beyond anyone’s control, which probably makes it even more difficult. But is acknowledging that enough?
‘So, how many of you have patients who make treatment decisions based on their CGM?’
This was the question posed by one of the healthcare professionals speaking at this afternoon’s Dexcom symposium at ISPAD.
A few hands were raised. Not many; only a few in the packed room. Two of the hands that shot up the fastest belonged to a colleague and me, both of us referring to ourselves as the ‘patients’ – or perhaps each other.
We looked at each other and half smiled, shaking our heads. We knew the answer – we knew what the truth was. The response in my head was ‘Of course we do. Of course. I treat based on arrows telling me I am heading for a low without checking my BGL – I did it just before walking into the session.’
The question came after the announcement that treatment decisions could be made based on sensor readings from the new (yet to be released in Australia, but launched already in the US and in some European markets) Dexcom G5 CGM.
There has been much excitement from HCPs presenting about this new development in CGM – both at this conference and at EASD. It has huge implications because essentially, it is removing the need to do finger prick BGL checks, apart from the required twice-daily calibrations.
But it has been presented as if people using this technology have never, ever thought before to treat based on what their CGM data is displaying.
I doubt that any person using CGM has found this announcement particularly startling or surprising in any way.
But this is often the case. The release of new evidence or new guidelines or new data heralds a shift in ‘approved’ diabetes management or techniques and suddenly, there it is on all the shiny brochures and in all the shiny presentations.
And the people with diabetes who have been doing this, or have known this or understood it to be true from some time, look at each other slightly puzzled at what all the excitement is about.
I understand the importance of a strong evidence base. And I understand the need to be safe – especially as part of regulatory and approval processes. But sometimes, I can’t help but wonder why it takes so long for the evidence to catch up with what is already known, and match the anecdotal experiences that we hear and share.
It was great to have the speaker acknowledge that the show of hands after her question was probably not accurate of what was really happening.
‘You know your patients are probably doing it and just not telling you, right? They don’t want to be reprimanded for not doing what they are supposed to, but they probably are making treatment decisions based on their CGM data.’
It was probably the most frank thing we heard in that session – the twofold acknowledgement that PWD are already doing something that works but is ‘off label’, but are afraid to tell our HCPs about it, lest we get told off.
This time, when my colleague and I looked at each, we smiled widely. And we nodded. Because we knew it to be true.
Clearly, jet lag, daylight saving and time zone confusions have meant that any creativity left in my pea-sized brain has been zapped to non-existence. As has the ability to order the million things that I have read in the last couple of days.
So, with a slight inability to organise my thoughts clearly, here are some things on my mind today.
Stephanie Rice is not a medical professional (that piece of information is more for her than anyone else)
Yes, another C grade celebrity has been at it again: providing medical advice and pretending to be an expert of everything. Aussie Olympic swimmer, Stephanie Rice, has come under fire for starting a Q&A style section on her Facebook page, where readers could seek medical advice.
Now, part of me wants to say that if you think that asking an Olympic swimmer for anything other than advice about, I don’t know, swimming, you get what you get and you don’t get upset. But this isn’t really about Rice’s readers. This is about the arrogance that she is demonstrating in thinking that she actually has anything to offer here.
I was talking about this yesterday with someone and she looked a little surprised at how annoyed I sounded. ‘But isn’t that kind of what you do on your blog,’ I she asked.
I would like credit here for the incredible restraint I demonstrated in not stabbing her with a (blunt) lancet. I would also like credit for speaking to her with respect as I pointed out that no, this is no what I do here.
What I do here is talk about my experiences (such as my experience of getting annoyed at swimmers who think that you shouldn’t have a medically-prescribed MRI because ‘there is so much radiation’), but never, ever telling people what they should do (such as suggesting that you shouldn’t have a medically-prescribed MRO because ‘there is so much radiation).
Of course, Rice responded with an ‘I’m hurt – I’m only trying to share what I have learnt and how much I now know’ post that is defensive and naïve.
Also, it is where she has it wrong. And it’s where Sarah Wilson and her ‘I-live-with-autoimmune-disease-(as if it is a singular thing)-and-therefore-can-give-medical-advice’ also gets it wrong.
Your advice is worthless. You have no qualifications in medicine, so stop giving medical counsel.
What does have some worth, however, is sharing your story. People connect with that. They hear what you are going through and feel supported. It makes them feel less alone. It is not your job – any more than it is my job – to provide medical information to people.
So stop it. Just stop it.
Live longer
Yesterday, MJA (The Medical Journal of Australia) published an article – Recent advances in type 1 diabetes – authored by some of Australia’s leading clinical experts in type 1 diabetes.
There were some really interesting points mentioned including that, in Australia, the incidence of type 1 diabetes has doubled over the past 20 years.
But for me, the most interesting and hopeful point (which was also the focus of the media release) was the following statement:
Although T1D is still associated with considerable premature mortality, recent findings show that a significant improvement in life expectancy has occurred.
I have always had in the back of my head that my life expectancy will be shortened by fifteen years due to my diagnosis of type 1 diabetes. It’s not all roses and I am not in denial that there will be challenges as my diabetes – and I – get older. But there is some good news in here. And for that, I do have some hope.
Do this survey
Abbott Australia has a series of surveys live at the moment for adults with type 1 and insulin-using type 2 diabetes.
YourSAY (Self-management And You) asks what it is like to live with diabetes each day, specifically looking at the behaviours and attitudes to diabetes self-management and glucose monitoring.
The survey takes about twenty minutes to complete and is open to anyone who meets the following criteria:
- Live in Australia
- Be aged 18-70 years.
- Have been diagnosed with type 1 or type 2 diabetes
- Be currently using insulin injections or an insulin pump
- Not currently be using a continuous glucose monitor (CGM)
Sound like you? Then hop to it by clicking here.
New look
Go check out The Parents’ Voice. Here, you’ll find the new name and new look of The Parents’ Jury. And while you’re there, considering signing up and becoming a member. The Parents’ Voice is all about improving the food and activity environments of Australian children.
#DOCtober
Grab your phone – or, if you’re old school, a camera – and join this month’s #DOCtober photo challenge. Kerri Sparling is documenting the month in photos on Instagram and on her blog and is asking you to join in. The idea is to find something diabetes-related and post it in social media land for all to see.
I’ve been pretty lax…as in have not posted a single thing…but here is my contribution for today. This is my desk at work with all the found objects from EASD.
Things I’m missing about Scandinavia
Cinnamon buns. Recipe found; baking planned. As soon as the weather cools down and I can consider turning on the oven!
Tick tock
As I’ve mentioned before, I often use the stat that we spend approximately six hours a year with HCPs working on managing our diabetes. It works out to about 0.07% of the year.
On his blog, Manny Hernadez has broken it down and wrote this great piece. He reckons that it is even less, with his calculations coming in at 0.007% of the year.
Whichever what you look at it, it’s not much time at all! And, it serves as a reminder of just how much little time we have professional assistance when dealing with diabetes.
So, remind me again who the expert is?
That’s cruel
I wore a green dress yesterday.
One of my (very frequent) criticisms of diabetes conferences – especially here in Australia – is that there is not enough input from people with diabetes. The very people who are the reason that these conferences exist are largely silent and very, very invisible.
This year, however, I am so pleased to say that even though there may not be many of us storming the halls of the Adelaide Convention Centre, the voices of people with diabetes are being heard very, very loudly.
The day kicked off with a breakfast celebrating the 10th anniversary of the OzDAFNE program. There, in between discussions about the program was a video showing people who had completed DAFNE sharing their thoughts about the course.
I then headed to an often-challenging session on hypoglycaemia, where Dr Christel Hendrieckx from the ACBRD, in her session about the emotional and behavioural consequences of hypoglycaemia, dedicated a slide to quotes from this Diabetogenic post about the language we use when referring to mild and severe hypos. I am not sure that I have ever been prouder. (I also completely broke the no photos rule with this, but they are my words, so I thought I would be safe!)
In the next session , diabetes educator, Virginia Hagger (also from the ACBRD), spoke about the TEAM T1 Program. Once again, interspersed between stats and explanations of the program, quotes from teens who had attended TEAM T1 were read out, highlighting how the course helped them.
Virginia spoke again later in the day, this time about the Diabetes MILES Youth report and played the video used at the launch of the report (and shared on this post) for the audience. The words used to explain how young people feel about living with diabetes are powerful and their impact is significant.
Amelia Lake from the ACBRD (you’ve noticed the common theme here, right?) spoke about the development of a resource about young people with type 2 diabetes and retinal screening. She too provided great insight into how young adults with type 2 diabetes feel about eye checks by sharing quotes of their experiences.
While it would indeed be wonderful to have people with diabetes sitting in sessions, and standing on the podium lending their voice to provide the practical side of the theory often being discussed, incorporating the words of many into talks is a powerful and effective way to hear from us. Plus it means that there is never only one voice – which can at times seem tokenistic – being heard. Instead there are many – every single one important as the next.
