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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.
I’m a bit of a goody-two-shoes most of the time. I like rules; I like to play by them. If someone hands me a policies and procedures handbook, I read it and then tick boxes as I make sure I do what is expected of me. Playing by the book is my MO! (You can see why being diagnosed with diabetes is not really in sync with this philosophy…)
So, it pains me greatly when I see a rule that I don’t like – especially one that I can see no reason to be there!
I am in Adelaide from tomorrow for the Australian Diabetes Society – Australian Diabetes Educators Association annual conference. Actually, tomorrow, I am presenting at the Roche Educators Day which is very exciting and also making me a little nervous. Speaking to healthcare professionals about the benefit of using social media is sometimes a terrifying thought. In fact, the people listening are the definition of a tough audience. (So, if anyone who is attending tomorrow is reading this, please be kind and nice and gentle and open to discussing this topic. Please!)
It has been great that the planners of the conference for the last couple of years have actually bothered to consider how social media can be used to talk about what is going on in the presentations. There was some great tweeting last year – admittedly, mainly people from Diabetes Victoria and the Australian Centre for Behavioural Research, but nonetheless, definitely an improvement on previous years. (So maybe, all the talking to healthcare professionals about social media is starting to pay off??)
This is all great. All heading in the right direction! Social media at our premier diabetes healthcare professional conference is here to stay. So I was really disappointed to see this year that the social media guidelines on the conference website state the following:
The use of photographic, video, or other type of recording devices is strictly prohibited in all oral sessions (i.e., platform, plenary, invited, etc.) and poster sessions at the ADS ADEA 2015 ASM. Therefore, it is also strictly prohibited to post photos/images or video recordings from these sessions on any type of online site, including social media platforms, blogs, personal Web pages, etc.
Now, I recently got into trouble for breaking a similar rule. When I attended the ADA meeting in Boston, I was live tweeting Bill Polonsky’s sessions, and tweeted a couple of his slides*. Within minutes, the SoMe boffins from the ADA sprang into action:
I was firmly rapped over the knuckles. There were a few follow up tweets from DOC peeps obviously as pissed off as me about the policy. We all thought it was pretty crazy.
So let me explain why I don’t like this policy.
I completely understand if there is a restriction around photographing unpublished data. That makes sense. But I believe that the people in the room are smart enough to not take photos of anything if they are told that it is unpublished. They would understand why there was such a restriction and, I believe, not publish the data.
But if the data is in the public domain and available for everyone, then what is the harm?
I live tweet conference sessions because it is a great way to capture what is going on in the moment at the meeting. I am also very aware of what a privilege it is to be in the room! Most people with diabetes don’t get the chance, so this is an opportunity to share what is being discussed.
Of course, I quote what the speaker is saying, or highlight key points, but with a 140 character limit, the value of a picture and its thousand words is never truer!
It also means that there is less chance of me misinterpreting what is being said.
Live tweeting from conferences is a fabulous way to reach a far broader audience – frequently an audience that may never actually be in the room – yet is directly affected by what is being discussed! And I have said it before, but one of the reasons that it is so great to have consumer reps in the room is because we share the information. How many of us actually have HCPs who do that when we see them?
I tweet and blog and talk about them – as do my peers – and that is how we find out what is hot, what is new, what is coming up.
This policy is ridiculous. And it needs to be changed.
*For the record, one of the tweets I sent at ADA was a photo of Dr Gregory House. Dr Polonsky was using a photo of him to illustrate a point. It was a good point. It was a good photo. Plus, I love Hugh Laurie and any chance to look at him. It was worth getting told off for!
Being fiercely independent about my health is something that I cherish. I have a strong need to own my own health and well-being and direct the course taken to manage my diabetes as best as I possibly can. I do this with full disclosure that the mess ups are mine as much as the successes. The buck starts and stops with me.
But sometimes – always, actually – it helps to know that there is support at hand when needed.
That help might be in the form of someone to accompany me to appointments (thanks dad, who has chauffeured me to almost every single ophthalmologist appointment I have been to in the last 17 years), someone to meet me afterwards over coffee so I can debrief and share what happened, or someone to actually sit alongside me whilst in the consulting room, taking note of what is being said. Having a second set of ears is always a great idea, especially if what is being covered off is challenging in any way.
I usually attend appointments with my endo alone, although sometimes, my mum may be with me to keep my company. We use it as an excuse to then catch up for coffee and cake. Other times, when there has been something ‘big’ to discuss, Aaron comes along and listens intently, rarely commenting unless he can see that I am uncertain about something. And then we go for coffee and cake.
I pretty much always see the GP alone, but truly, my GP appointments are always super quick and about something so specific – and usually simple – that I don’t need to take someone along for the ride.
Most of the time, I am happy to be on my own. I relish the time in the waiting room – all alone, nice and quiet, and usually a trashy mag or two to catch up on.
The day I was diagnosed with diabetes, I was squeezed into an end of day appointment with an endocrinologist. I asked Aaron and my mum to come along to help me understand what was happening. The next day, as I saw the dietitian and diabetes educator and endo again, they were there, and together we took in all the new information, letting it swirl around us and settle uncomfortably. A new health reality that involved needles and numbers and thinking about food in a different way. This needed a team approach.
It was incredibly useful to be able to ask them questions about things I had only half heard or half understood as my mind tried to take in all I was being told. I found myself turning to mum for suggestions around food, and to Aaron about how I was feeling and what I was worried about.
As I got used to ‘having diabetes’ I asked fewer questions and learnt to focus on what I needed to know. These became the things that we would discuss in appointments and afterwards, blocking out the ‘white noise’ of the things we didn’t need to know.
I have people around me who know a great deal about diabetes; people I can call on when I need to for advice and company and a friendly face in the waiting room. Someone on my side; someone by my side. My own personal wingmen.
A friend I’d not seen for many years contacted me the other day. Apart from occasionally seeing her name pop up on my Facebook feed, we have had no contact for over ten years.
Out of the blue, she got in touch because she had recently had a miscarriage and was feeling pretty down. She wanted to speak with someone who had been through the experience and she had seen some of my posts about how I felt immediately after I miscarried a couple of years ago, and some follow up posts since.
As we spoke – well, I mostly listened, because I knew that was what she needed – it struck me that it is always the subjects that are taboo that are the ones we need the most support with.
In diabetes, it is still complications that seem to be a topic we are uncomfortable speaking about. We speak about them in hushed tones, as if by not giving them a name we don’t give them weight.
We are scared to ask questions, because we are afraid we will say the wrong thing. We don’t want to upset people and we don’t want to look like we are prying.
But perhaps that is what we need to do a little. We need to pry.
And we can do that in sensitive, caring ways that can and do help.
I learnt how valuable having someone gently pry could be back in 2003 when I had my first miscarriage. As I was enveloped in grief and trying to work out what to do and get through the days, a friend picked me up and took me out for a coffee. She had her new baby boy with her, which was just what I needed. A gorgeous little smiling poppet, who was happy to sit on my lap and be cuddled and have his chubby cheeks kissed.
‘Renz,’ she said. ‘Tell me what happened.’
It was the first time that someone had actually asked me that. Most people asked if I was okay, which clearly I wasn’t, but that wasn’t the answer they wanted, so I would smile through my tears and nod.
But here was someone actually asking me to tell them exactly what had happened. And I did. She listened, reached out and held my hand when the tears gently started and hugged me at the end. She didn’t offer any advice, didn’t tell me it was ‘for a reason’, (seriously – the worst response ever), or tell me that everything would be okay.
She just listened. And then she said, ‘I am really sorry’. It was just what I needed, and I nodded through that too, thanking her for giving me permission to tell my story, even if it was difficult for her to hear.
I have employed this tactic over the years – not only when I hear about pregnancy loss, but other things too. It is really hard to stay silent sometimes, because we want to reassure people, we want them to know that they will be okay and we want to take away their pain.
However, I have found that that is not what people want. Often, they are just looking for an outlet; a way to tell their story and be heard.
It doesn’t even need to be something really big for this technique to work. When I tell people that I have had a hypo, I don’t want them to look for solutions. I don’t want then to workshop what happened leading up to the low or to talk to me about what I had (or didn’t have) for lunch. I just want them to listen.
I really don’t expect them to fix things. I know for me, I just need someone to legitimise how I am feeling. And acknowledge that it is tough.
My husband has the best response when I tell him I’ve had a crappy diabetes day. ‘Diabetes sucks,’ he says to me, leaving it at that. And he’s right. It absolutely does.
This weekend, I gave a talk about finding good support to a group of people living with type 1 diabetes. I can’t remember the last time I stood up in front of PWD and just chatted about life with diabetes. Recently, all the presentations I have given have been for HCPs and the tiny few I have given to PWD have focused solely on social media and technology. It was kind of nice to go back to basics and talk about supporting each other more broadly.
So, here is my secret admission: I always feel like a fraud when I am about to give a talk. Seriously, who am I? I live with diabetes and all I can do is share my (frequently clumsy) experiences. I always prepare, but my talks rarely, if ever, end up how I planned. I wind up taking weird tangents, sharing far-too personal stories and then when the anecdote comes to end, I stand there a little shocked with nowhere left to go other than to sheepishly say, ‘Right…so where were we?…’
Anyway, I was talking about how we can work with our HCPs to get the best support – and finding support outside our HCP team. And how great families and friends can be with their support, but somehow, there is nothing like being around others with diabetes because they just ‘get it’.
There was lots of nodding and chatter and laughter in the room. It was really informal – just a (large) group of people sitting around chatting. These are my people; this is my tribe!
This was my favourite kind of talk. The audience was really engaged and wanted to share their stories. I love that for a number of reasons – one of them being that it means I have to do less work! But mostly, because I always learn something new. Because there before me is a room full of experts!
Someone came up to me afterwards and thanked me for my talk. And I thanked them. Because as much as I love sharing and talking about my diabetes, I love hearing from others even more.
‘Got your lunch?’
‘Yep.’
‘Got your jumper?’
‘Yep.’
‘Got your homework?’
‘Yep.’
‘Okay. Grab your bag and let’s go!’
And that is how we walk out the door in the morning – after eating breakfast, getting dressed for school and brushing hair and teeth.
I then drop the kidlet at school and make my way to work.
I don’t think about what her BGL is doing throughout the day. I don’t think about what time her PE class is and if she ate all her morning tea beforehand. I don’t think about anything to do with numbers – other than knowing that she has her maths homework.
Kids have a lot to think about in their day. Kids with diabetes – and their parents and their teachers – have more to think about.
Jump over to the Diabetes Victoria blog where you can reads about the fabulous new resource launched today. It’s called Mastering Diabetes and it is going to help all children at school and childhood settings in Victoria.
It may have been a while ago, but I do still Remember the Days of the Old Schoolyard!
I see strength everywhere I look.
I see it in myself as I dig, dig, dig deeper to manage diabetes as best I can.
I see it in my friends with diabetes as they face the challenges diabetes throws at them each and every day.
I see it in other people with diabetes as they get up and push on through the stigma and the discrimination and the assumptions and the judgement.
I see it in our lack of sleep and bodies not doing what we would like and our fear and our uncertainty.
I see it in parents of kids with diabetes as they rise again after a night of missed sleep and their fear and their uncertainty.
And I see it in the healthcare professionals working with is, advocating for us and helping us make sense of the labyrinth of our health system.
We are told that we get diabetes because we are fat, because we are lazy, because we ate the wrong food, because we didn’t move enough, because our bodies were feeble.
We are told that we are not doing the best we can, that our numbers are too low, too high, not enough.
We are told that we are not following the rules.
We are told there is no funding, no money, we cannot access what we want, what we need, what we choose. And then we are told that we failing when we don’t achieve unreasonable targets.
We are told we have no willpower, we are not resilient and we have no expertise.
We are told we are sick.
We are told we are weak.
We face all this. All the time. And yet every day we get up. We live a life like everyone else and manage a condition on top of it that would drive most people to distraction.
We become strong, because we have no other choice.
Pricking our fingers, injecting our bodies, watching how what we eat, how much we move, how we feel affects everything – we manage all of those things with little complaint.
We fight demons, we blame ourselves.
But we get up.
I see strength in every person with diabetes – whatever their numbers, whatever their management.
We get up. We do it. Every. Single. Day.
Tell us again that we are weak. Tell us again.
Following the announcement at the end of last week from Diabetes UK that a new CEO had been appointed, there was much chatter online about whether or not the best person had been selected for the role. I have no opinion on this. I do not necessarily agree that you need a person with diabetes to be the CEO of a diabetes organisation – there are many other ways that meaningful engagement can take place ensuring that the organisation is representing the needs of people with diabetes.
What I was far more interested in was the direction the discussion took – specifically about the inclusion – or, as was being discussed, not – of consumers/patients/PWD/whatever you want to call us at professional conferences.
I watched on in silence as healthcare professionals, PWD and consumer groups all weighed in on the subject.
I am rarely a fence sitter, and on this issue, my position is very clear. Very, very clear.
I have yet heard a good argument as to why PWD should not attend diabetes conferences. In Australia, just as in the UK, we have the same limitations about people with diabetes having access to drug-branded information. This is archaic because, well, the internet. But whatever. (Read more here.)
Notwithstanding these code regulations, there is no reason that a PWD should not be welcome at a professional meeting about diabetes, hearing about diabetes research, learning about diabetes medications and technology and talking with the healthcare professionals working with people with diabetes. And if it is deemed that we are not fit to see the brand names of drugs, then keep us out of the exhibition spaces, but allow us to attend information and networking sessions. (For the record, I don’t support that idea either, but if that is what is necessary for us to be able to attend the sessions, then so be it.)
I would go one step further. PWD should be involved in the planning of these meetings. Why? Because surely if HCPs working with PWD are hoping to improve their knowledge and understanding of diabetes, a big part of that is gaining a better understanding of people with diabetes. And there is no one who gets that more than those of us living with diabetes.
I absolutely do not subscribe to the ‘why can’t we have a professional conference for health care professionals’ viewpoint. Well, of course you can. But there is no reason that PWD should not be involved in this and attend alongside healthcare professionals.
I’ve been more than a little vocal on this in the past. Search ‘consumer involvement’ or ‘PWD at diabetes conferences’ on this blog and you might just come up with a few things. I’ve given talks both here in Australia and overseas about it. I constantly expound the value of the consumer voice and consumer participation and consumer involvement.
The thing that interested me in the discussion I was following was just how hostile it was at times. With 140 characters or fewer at our disposal, we can’t always be as tactful as we might be in person. Sometimes, being direct is the only way. And knowing a few of the people involved in the discussion, tact is perhaps not a characteristic that they generally employ. I say that without any snippiness at all – it is part of the way they get their point across. I get it – I am often accused as being like that and I wear it as a badge of honour. As far as I am concerned, the involvement of PWD is non-negotiable and if I sound pissed about it, I probably am!
But being hostile and aggressive is not likely to result in a favourable resolution.
Working for a diabetes organisation puts me in a unique position. As part of my work, I get to attend the very conferences from which other PWD are excluded. Plus I am frequently invited to speak and this privilege is due to a combination of my diabetes org work and also my work as a blogger and diabetes activist that I do outside of paid employment. It’s a sticky situation that I manage as best as possible. There are disclaimers everywhere and even the whiff of a conflict of interest is declared.
However, there is one thing that I have learnt from ‘being on the inside’ and that is working collaboratively is highly likely to produce results more than being combative. There is a lot of negotiating required at times and an understanding that things take time. Sometimes lots of it. It’s taken me a lot of time to understand that!
Call me – and those who are trying for a more collaborative approach – political or bureaucrats. You can think we’re sell-outs. We’re not. At all. We actually have a seat at the table and are working for people with diabetes. And you want us sitting at that table! Come join us.
So, think you want to get involved, but not sure how? There are myriad ways that you can try to work with organisations. If paid employment is not what you are looking for, there are many volunteering opportunities including Boards (some may be paid positions), advisory panels, expert reference groups or simply, pick up the phone and pitch your idea!
Diabetogenic 