You are currently browsing the category archive for the ‘Awareness’ category.
I have never understood why people shy away from the word ‘feminist’. It is one that I have always worn as a badge of honour and one that most of the women around me are not afraid to use. Sometimes, we have roared about it, and other times we haven’t. But it always seems to be a guiding principle in the way we live.
I’ve always loved this Dale Spender’s quote (one that Senator Penny Wong quoted last night on Q&A in her eloquent explanation of why she calls herself a feminist) because it shuts down any ridiculous comments about feminism being something to fear, or ‘against men’, which is a load of bollocks.
I am not sure if the women around me I admire and love and respect would call themselves feminists, but I certainly see them that way. They raise each other up, celebrating successes, commiserating losses, rejoicing in each others happiness.
When I think about the people who have impacted most on my life since diabetes, they are just about all women. Today, my HCP team is exclusively made up of women and I have been seeing all of them for well over ten years. It took me a while to find the right people for what I needed and it just turned out that the ones who were most compatible were all female.
The people I turn to when I am confused or angry or struggling with diabetes are mostly women.
When I was dealing with the devastating aftermath of miscarriage or the exciting and exhausting exhilaration of new motherhood, the people I wanted to talk to were other women with diabetes who understood the extra demands that diabetes threw into the mix. These were the women who provided comfort and love and a (virtual) shoulder to cry on. And the call of ‘You can do this’ resonated strongly through them all.
I am raising a daughter and one of the things for which I am forever grateful is that around her – and me – at all times are women of great strength, intelligence, compassion, bravery, brilliance and talent.
She sees that every single day in my mother, my mother-in-law, my sister, my sister-in-law, an extended family of assorted aunts and cousins, and my circle of friends who are nothing short of genius.
She sees it in many of her own friends’ mothers who speak to their daughters the way I speak to mine, and she, along with many of her own friends are already demonstrating that kickass attitude that some hasten to shut down by calling them bossy and pushy. When really, they are showing they have the skill and courage to lead.
And she is starting to search out her own hero girls and women, admiring and quoting Malala Yousafzai, shouting about girl power, reading books with strong female protagonists and demonstrating utter shock, indignation and disgust to think that girls are not at all times considered equal.
And she sees me. While I may not be the strongest, brightest, most compassionate, most courageous or most brilliant of the women around her, I do set an example of resilience and kindness. And we use diabetes as an incredibly effective teaching tool to show her just how lucky we are, and how she shouldn’t ever take for granted the privileged life into which she was born.
She knows that diabetes around the world is not a level playing field. And, more broadly, neither is women’s health, whether maternal, sexual or reproductive. Where a baby is born impacts significantly on their health outcomes. As does gender.
It’s International Women’s Day today. While I am using the day to acknowledge amazing women – those who have come before, are here now, and are our future – I am also using it to remind myself that there is still so much for us to do. The gender gap is not closed – not by a long shot. We need feminism, we need activism and we need days like today to remember what still needs to be done before women around the world are truly considered equal.
Women Deliver is a global advocate for women’s health, rights and wellbeing and promotes the importance in investing in girls’ and women’s health. Take a look at see some of their great work, which includes the infographic above.
Last night, after a lovely dinner with a couple of diabetes mates, I rushed home to watch Insight on SBS. The topic was type 2 diabetes and diet, specifically, a very calorie-restrictive diet being promoted by Dr Michael Mosley.
I was particularly interested because the CEO of Diabetes Australia (my boss) was one of the guests on the show.
I don’t really want to write about the diet being presented on the show. I am not a healthcare professional and have no qualifications in dietetics, so I am not going to remark on the ins and outs of the diet being discussed or the claims that it ‘reverses’ type 2 diabetes.
What I am going to comment on is the Twitter commentary that accompanied the show. You can go back and have a read at #InsightSBS and see that some of the armchair discussion was pretty well-balanced, (special kudos to Warrnambool DNE, Ann Morris for her balanced tweets), but unfortunately, a lot of it wasn’t.
A couple of very well-known celebrity trainers* were tweeting along to the show. (*When I say ‘well-known’, I knew of one of them – Michelle Bridges – but had to be told who the other one was. I’d never heard of Commando Steve before last night. Apparently he is Michelle Bridges partner, so I like to think they were sitting together on the couch, tweeting and judging people. Birds of a feather…!)
On the program were a number of people either living with type 2 diabetes or who had been identified at risk of developing diabetes. So, so much credit to these people for going on a national television program to speak about living with a condition that so many know so little about.
I listened to their stories and heard how they were living with a complex and confusing chronic condition. I heard about how some had made changes that they felt they could manage, and others who clearly had so much else going on, that they simply were unable to make the recommended changes that may have positively impacted on their health.
Diabetes Australia CEO, Professor Greg Johnson (again – my boss, so consider the bias when reading this) said the following: ‘We don’t want to put people in positions of failure. Already they are in positions of failure in diabetes.’
And this is where the celebrity trainers jumped in. Firstly, this from Michelle Bridges:
And then this from Commando Steve (who I assume has a proper name?):
Their complete and utter lack of understanding of living with a chronic health condition shouldn’t astound me. Who really knows unless you are living it every day?
But surely they could show a little empathy, or acknowledge how tough dealing with a lifelong condition might me.
I would like them to suggest how we remove the ‘emotion’ from diabetes. It permeates every single facet of life some days, so tell me how we cast aside any feelings or emotion?
Commando Steve tweeted that ‘people will come up with all the excuses in the world not to take responsibility for their own health’ which does nothing other than lay blame, stigmatise and judge.
The simplistic approach offered by people like Bridges and Commando Steve will never address the real issues of diabetes. In fact, all they do is add to the stigma, which is one of the reasons that so many living with diabetes find it difficult to make changes. Way to go, guys. Your lack of ‘insight’ is shocking.
‘You’ll be pleased to know that I represented people with diabetes very well in the meeting that I attended yesterday.’
The meeting was all about people with diabetes; making decisions about people with diabetes; looking at processes and practices for people with diabetes; discussing how people with diabetes access healthcare.
And in the room? Not a single person with diabetes.
I looked at the healthcare professional who told me that she had so well represented ‘my people’ and shook my head.
‘And yet,’ I said. ‘You are not a person with diabetes. Can you imagine how much more powerful it would have been to actually have people affected by the things being discussed in the room?’
I was reminded of this conversation, which took place a few months ago, this morning when I saw this from the folks at T1 International. (I’ve written about them before, but please check them out. Their work is so important.)
T1 International is working towards adequate access to insulin and diabetes supplies, as well as healthcare for all people across the world living with type 1 diabetes. They are giving a voice to communities that are most often not heard by sharing their experiences and amplifying their stories.
But I wonder, what hope can there be for people in countries where diabetes is so tough if in places like Australia, where we have heavily subsidised medication and supplies (I know, I know – CGM is not subsidised), we are still not being given the microphone?
I never doubt the amazing advocacy initiatives that many healthcare professionals undertake for people with diabetes. It is important and necessary and I am so grateful for it.
However, there is an authenticity that can only be delivered by those walking the miles in our (diabetes-appropriate – pfft!) shoes; not those walking alongside us.
Bringing home the point again was this cartoon that has appeared frequently on my SoMe feeds this week.
Copyright – SocialMediaPearls
Let us in the room. Don’t speak for us. We have voices. Hand us a microphone so we can be heard.
This morning as I was buzzing around getting ready for work, I suddenly stopped. I realised something that had obviously been creeping up on me so incrementally that I had not noticed it before.
I looked around the bedroom and saw empty cannula packaging from the line change I had done when I got out of the shower and the empty sensor pack with the date written on it so I would remember when it was inserted. I went back through my CGM trace and pump history, noticing where I had bolused for a high BGL, set a temp rate for an impending low and calibrated at the appropriate times. I checked the history on my BGL meter and saw that I have been checking regularly and that the numbers were not as crazy as they have been.
I looked in my bag and saw a spare bottle of strips, my fully stocked ‘emergency’ kit, and a juice box and a small container full of glucose tabs ready in case I needed them.
When I got into work, my desk was prepared for all contingencies – more glucose tabs on the desk, a couple of spare cannulas in the top draw, as well as a few syringes. And a few single portion packs of Nutella.
I was – I am – managing my diabetes – well and without any stress at the moment. The burnout fog that had enveloped me for a long, long time seems to have lifted without me even noticing, and the diabetes tasks that form part of my day and had been so, so difficult to manage, have become routine. I do them without thinking. Checking my BGL and calibrating my CGM just happens. Bolusing for meals or my morning milky coffee is done before I take that first taste rather than half an hour later because my CGM is blaring at me that I am high.
Am I feeling motivated? I’m not sure that is the right word. I don’t have a desire to do these things. I am not so focused on diabetes that I think about it all the time.
But I am doing what I need to. Routinely. Just like brushing my teeth, combing my hair and putting on a necklace in the morning.
Perhaps that’s the thing about managing diabetes well. It’s the balance between getting the things done and not panicking about them. Or feeling so anxious and guilty because they are not getting done.
I don’t know the secret to this change. I do think that a big part of it is wearing my CGM all the time. Once I managed to hurdle feeling overwhelmed by the data and just accepted the numbers for what they are and acting accordingly, I feel much more driven to ‘do diabetes’. And perhaps as I see that things are not as dire as I often imagine them to be, I feel that I can just get on with things.
This is the roller coaster of diabetes. The ebbing and flowing of motivation and being in the headspace to get things done. I’m in a good place for now. I just have to work out how to stay here.
Emergency stash at the office (for lows or as required….)
It’s gloomy in Melbourne today. I have tights on for the first time in months and my hair is now frizzing thanks to the rain I was caught in as I ran next door for a coffee. (The silver lining in all of this is that there is fabulous coffee right next door to my new office. Also, extra silver lining is that I can see the weather out of my beautiful window. The not-so-silver-lining is that I am reminded that I am fool, because window = seeing rainy weather and yet I still forgot to take an umbrella…)
So here are some things that are keeping me either amused, happy, annoyed, interested, fascinated and heaps of other things too!
Roses spared and children saved
Today, the Spare A Rose Facebook page announced that 376 children would be benefitting from people’s generous donations this Valentine’s Day.
It’s not too late to make a donation, or even consider making a monthly donation throughout the year. AUD$6 each month equals a month of insulin for a kid who would otherwise not be able to afford it.
While this was the focus of our Valentine’s Day, there was still a lot of baking. Because I love a heart shaped cookie. Or giant brownie. And sprinkles.
Still the wrong name for this week
I think that the name misses the mark because it focuses on weight and not health. The overall aim of the week is to encourage people to cook more at home to achieve a healthy weight. Here’s just a little of the conversation with the DAA (after they read my post last year) on Twitter:
I think that this really does a disservice to the role of dietitians in healthcare. I am of a healthy weight, but have benefitted from the expertise of dietitians in the past.
The name of this week turns me off actually wanting to participate in any way, even though there are some terrific initiatives. What are your thoughts on this one?
In the genes
Why do some people develop diabetes-related complications and others don’t? We’re told that ‘control’ is the reason, but we also know that some people develop complications, despite years of what is considered ‘good control’ while others who struggle to reach targets don’t.
Things I wish I knew
I learn new things about diabetes each and every day. But how much easier it would have been while navigating this annoying bloody path to have known stuff earlier on. Diabetes UK has released a new book, 100 THINGS I WISH I’D KNOWN ABOUT LIVING WITH DIABETES, which includes information collected from over 1,000 people with diabetes with input from clinicians. The final 100 were selected by people with diabetes, (nice engagement there!), who chose the tips they thought most useful.
Oh – and while talking about Diabetes UK: Happy Birthday! They turn 82 years old this week.
New (to Australia) Tech
Looks like Australia is about to catch up to our friends in the EU who have had access to Freestyle Libre Flash Monitoring. The Flash website went live this week. More details – such as cost and release date – are yet to come, but you can register your interest. Have a look and register your interest.
And while we’re talking new tech in Australia, a couple of weeks ago, the Aussie launch details of the Dexcom G5 were announced. You can download the app (iOS only) which is already available from the App Store, although you won’t be able to use it until you are hooked up to a G5. The App has the ‘Share’ capability which means that you can (just as it says!) share your data with others.
Rock on
Last week, I was sitting at the front of our house, enjoying the sunshine and my day off, and listening to Live Fast, Diabetes, the new song from Adelaide punk/rock band, Grenadiers.
A very crotchety woman walked by, stopped as she heard the music, and scolded me with this nugget of wisdom: ‘You’re too old to be listening to that noise.’
Yeah, we know
Science: ‘Apparently BGLs are lower in warm weather.’
PWD: ‘Ah, yeah. We know. We’ve known for ages….’
Love it when evidence catches up!
And finally….
It’s Tuesday. Do the #OzDOC tweet chat! Tonight at 8.30pm AEDT.
I don’t get to take part in the OzDoc tweet chats as frequently as I would like to anymore, but when I do, I know that I am guaranteed an hour of thoughtful and engaging discussion about real life with diabetes.
This week, I popped in a little late, but in plenty of time to catch a terrific chat a out diabetes stigma – from both within and outside the diabetes community.
Diabetes stigma is real. Have I experienced it? You bet.
Stigma is unsettling, and it comes from a place of ignorance. Is there any real animosity or vitriol? I like to think no, but it pains me that when there have been times of nastiness, it has come from within the community.
I can honestly say that I have never been stigmatised about my diabetes from anyone inside the diabetes community. But then, I have the type of diabetes that I didn’t cause myself. You know, the one that has nothing to do with the sorts of foods that I ate. The one that has nothing to do with me being overweight or inactive or lazy. I have the one that cute kids get – kids who are innocent and have done nothing to ask for this. And I have the tough one – the one that is the worst, the one that can cause death in an instant, the one that no one understands.
These are words that people from within the diabetes community have used when talking about type 2 diabetes. That’s right – by others living with (or living with a child with) diabetes. Perhaps it was in a discussion about the hopeless and insensitive comments made by some silly comedian; or perhaps in response to a diabetes report that doesn’t separate type 1 and type 2 diabetes.
And I am not the only one to have noticed this. The Walk With D campaign was set up because there was a need to acknowledge that … ‘Even within the diabetes community, there are levels of misunderstanding, misrepresentation, and mistaken messaging, often creating a divide where there should be a bridge.’
There have been some studies that also reinforce the idea that there certainly is stigma from within the community.
The ACBRD has been researching diabetes stigma for a couple of years now, starting with a project looking at the stigma experienced by people with type 2 diabetes and following up with a similar study about people with type 1 diabetes.
The second study discussed the perpetuation of type 2 diabetes stigma by people with type 1 diabetes and it’s interesting reading. You can read the full article here, but here are just some of the findings:
- In general, participants expressed somewhat negative attitudes towards, and beliefs about, people with T2DM. This included stereotypes such as ‘lazy’, ‘fat’, ‘over-consume’, ‘sedentary’, ‘unfit’ and judgment about the intelligence and character of people with T2DM, and blame for ‘bringing it on themselves’.
- These attitudes and beliefs served to perpetuate, and give voice to, the stigma surrounding T2DM and drove an in-group/out-group (or ‘us vs them’) mentality.
- It was also evident that there was resentment among people with T1DM toward those with T2DM, which stemmed from two main factors: (1) the perception that people with T2DM are responsible for many of the negative connotations that surround diabetes, and (2) the perception that T2DM, as a largely preventable condition, attracts more attention and therefore gets more resources and support than T1DM.
- Some participants believed that T1DM was the ‘real’ or ‘serious’ type of diabetes, and was more worthy of research attention and investment of societal resources than T2DM.
That sounds pretty stigmatising to me.
Let me be clear about my position here – there are different types of diabetes and people living with each of those types of diabetes has the right to find support and healthcare that is relevant and specific to their diabetes. A young person living with type 1 diabetes is, of course, going to have different needs to an older adult living with type 2 diabetes.
There are many times that we need to clearly define the different types of diabetes as this is important when it comes to getting the right treatment, seeing the right HCPs and ensuring the person living with diabetes has the right information.
I am not saying that there shouldn’t be specialised and tailored services and activities available to people depending on what they need, or relevant to the type of diabetes they have. I built a program from the ground up that was very specific and targeted in its approach to being only about and for people with type 1 diabetes. I get it!
And you absolute bet that people with type 1 diabetes should have access to support and peer opportunities that are specific. I know that for me the sense of ‘me too’ comes most strongly when I am speaking with other people with T1, usually women around the same age, who are working and have the same sort of technology, caffeine and boot addiction as I do – sometimes there does need to be a ‘sacred space’ for us to discuss the issues that are particular to the challenges presented by our brand of diabetes. And finding the perfect pair of knee-highs.
What I am saying is that I know that the stigma comes from a variety of places. And I believe that we should be advocating for diabetes messaging to be positive and beneficial to people living with diabetes. The challenge of getting that message across to people in the general community who have no idea about diabetes is difficult to manage and sometimes it has not been executed particularly elegantly.
But I am a firm believer in the strength of community and the support that it can offer. And to me, the diabetes community means everyone affected by diabetes – everyone. Stigmatising anyone inside that community does a great disservice to us all.
DISCLAIMERS ALL OVER THE PLACE!!
The ACBRD is a partnership between Diabetes Victoria and Deakin University and until very recently, Diabetes Victoria employed me. Since the ACBRD was established (6 years ago) I have worked with foundation director, Professor Jane Speight and her team on a number of different projects.
I have not received any funding from the ACBRD for my work with them. I just like to write about them because the work they do is very important and is changing the way that diabetes is perceived. And their work in diabetes and stigma is ground breaking. (Really! The Washington Post published this article in 2014, quoting Dr Jessica Browne from the ACBRD.)
Now, I just happen to share an office with the ACBRD. And this is on my office wall. I have found myself reading it quite a lot this week!
Click for larger image
I wrote about Spare a Rose, Save a Child last year. And the year before that.
I wrote about the easy and logical tie-in with Valentine’s Day.
I wrote about how I would be making a donation and encouraging my Valentine to do the same.
I wrote about how easy it is to support the campaign.
I wrote about how fabulously tangible the campaign is: 1 rose = AUD$6 = 1 month of insulin for a child.
I wrote about how easy it is to get involved.
I wrote about how no child should die because they cannot access life-saving medication.
I wrote all about it.
So I won’t do that again.
Instead – have a read! (And make a donation!)
_________________________________
Yesterday, as I sped around the supermarket, the onslaught of the next commercial opportunity hit me fair and square in the face. No, I’m not talking about Easter (I could act all outraged that there are Hot Cross Buns in Woolies, but we bought some and have been eating them, so that would be kind of hypocritical). I am talking about the festival of love – Valentine’s Day.
Valentine’s Day can go one of three ways for people. It can be a day of overt love declarations involving flowers, cards, poems, sky writing, gorilla-grams, stripper-grams (don’t judge), candle light, champagne, walks on the beach; it can be a day of sadness and misery and feeling left out; or it can be a day of complete oblivion where one is confused why there are so many people carrying bunches of balloons with ‘I wuv you, Shnookums’ written on them in glitter.
This year, I say screw that. This year, I say how about you do something that is meaningful that will not only help others, but also make you feel great. This year, it doesn’t matter if you have a Valentine or not. Everyone can play.
I am, of course, speaking of the Spare a Rose Save a Child campaign.
Now, if you have diabetes and/or any links to the diabetes word, you have probably seen and heard about this campaign before. I’ve even written about it here. The general gist is that instead of sending a dozen roses to your Valentine, send eleven instead and with the money that would have bought the extra one (about $6 in Aussie money) make a donation to Life for a Child. Those six bucks will provide insulin to a kid in a developing country for a whole month. Or, give your Valentine ten roses and donate $12.
All good, right?
But I have a little challenge for you.
This is a brilliant campaign because it is so simple. It’s easy to explain and it’s really easy to get involved. So my challenge is this. Let’s get this moving way out of the diabetes world. Let’s get this into the hands and hearts of our friends and family who may not really consider this as an idea for Valentine’s Day. Let’s tell our workplace HR teams and see if they can encourage it as a work-place wide giving program (there’s even a tool kit to get you started!). Pop in to visit your neighbours and ask them to get involved. Next time you are going for a walk in your local shopping centre, drop in to some of the small businesses and ask them to get involved. Ask your kids if they would like to donate some of their pocket money.
Roses and diamonds and jewellery and books and CDs and vouchers for massages and guitars and DVDs of favourite movies are all lovely and fun for Valentine’s Day and I am not suggesting you complete give up on the idea of sharing gifts. But how about sharing the love a little this year? I know that I certainly will be making a donation and have already strongly suggested to my Valentine that he do the same. (And check out this and this cute card to attach to your gift, telling your Valentine how you’ve shared the love this year.)
So, how about making sure a child has life-saving insulin available to them by donating just a few dollars in your loved one’s – or your – name. Because THAT is a gift of love and I honestly can’t think of anything I would like more this Valentine’s Day.
A couple of weeks ago, I sat in a packed Melbourne Town Hall. And there, on the stage, was Nigella Lawson. It is possible that I have never been so excited in all my life – the original and greatest domestic goddess in all the lands was sitting about five metres from me, sharing the same air! She is every bit as poised and elegant in person as she is on screen and her beauty is startling. I certainly squealed when she walked onto the stage!
So, was the hour or so that Nigella was sitting on the stage worth the time and money? Well yes. And no.
I have been to a number of these ‘in conversation’ events before and they can be hit and miss. Largely their success is dependent on the person asking the questions, or rather, guiding the conversation. And that was the frustration with Nigella’s session. Food writer and restaurant critic, Jill Dupleix, was a little clumsy in her attempts to steer the conversation. It probably didn’t help that she started with a dud question that I am sure was meant to break the ice, but had the complete opposite reaction. Nigella looked positively uncomfortable. Perhaps asking someone who has recently gone through a very public and awful relationship breakup about her sex life wasn’t very well considered.
But even after that, I felt that Dupleix was not a great choice of interviewer. She interrupted and gave her opinion about the audience questions. She was clearly afraid of silences!
Everyone in the room had come to hear from Nigella. We wanted to hear the secrets to her success and about her every day life. For me, I wanted to hear about how she had turned something she was so passionate about into a successful career. I had the kidlet with me, and she was enthralled as Nigella shared stories of how she got her start as a journalist and how she built an empire as a food writer.
When given the chance, the Domestic Goddess, using language in a way that was both beautiful and mesmerising, shared snippets into her life that were amusing and telling. (She keeps condiments such as mustard and soy sauce in little jars on her bedside table for when she is eating in bed so she doesn’t need to climb down the stairs, back to the kitchen, for them. Brilliant!)
Where the discussion worked was when Jill shut up and Nigella could speak, uninterrupted. Unfortunately, too often she was cut off, or the silences – probably where Nigella was trying to formulate her next thought – were cut short and we never got to hear the titbit of information that she was finding the right words to disclose.
I left feeling elated that I had been in the same room as Nigella, but disappointed that I had not heard more. Several people I spoke with afterwards said the same thing.
This is the power of effective communication. Whether it is in a room like that, or as a one on one consultation, the most important person in the room is the one who needs to be heard most, be given the most time to speak, and have the opportunity to set the agenda and direct the conversation. And this is the case in a formal interview, health appointment or even a conversation with a loved one at the kitchen table.
I have really kept this in mind recently. Yesterday was the first day of school and over the last week or so I have frequently checked in with the kidlet about how she is feeling as the holidays come to an end. As with any eleven year old, she moved between being excited and nervous. Some of the things taking up her attention were hilarious (how will I wear my hair on the first day, mum?) but as they were her concerns, they are legitimate. It wasn’t my place to tell her that no one would care if she was wearing a high or low ponytail, and she should be concentrating on important things like revising her times table.
No, my job is to shush and listen and ask gentle questions to get more out of her and then try to make her feel as calm and happy as I can.
It’s the same with the way that diabetes consultations are very frequently criticised for not allowing the PWD the opportunity to use the forum for what they need, instead, going through a tick-box exercise of what the HCP needs and wants. Surely the HCP should shush and listen.
I think that often we like to think that we are the most important person in the room; the our opinions count for more; that our voice should be the loudest; that anything we don’t like should be defended. But most of the time, unless we really are the most important person in the room (i.e. in the case of a HCP consultation, or if we are Nigella in a Town Hall full of people), we need to just shush and listen.
Because if we did that, just imagine how much more we would hear and learn.
Nigella Lawson in Melbourne last week.
I am always interested in seeing the sorts of campaigns other health organisations come up with – especially when trying to adequately express to people what it is like to actually live with whatever condition they represent.
In the diabetes world, we often focus on the debilitating complications when trying to communicate with the broader community, but that is really only one aspect of diabetes. There is so much more that we could talk about – the relentlessness of the condition, the fear we may feel, how our mental health and diabetes are intrinsically linked, the relationship we have with food and the increased rate of eating disorders, how diabetes impacts those around us. So, so much.
But what doesn’t get done all that well, is trying to actually explain the physiological side of living with diabetes. Our invisible illness makes it difficult to point to a bruised arm or a bandaged head to ‘show where we hurt’.
Diabetes is not alone here. Multiple sclerosis is another condition that is complex and has little community understanding. I know I for one have no idea about what living with this particular autoimmune condition would be like. So I was really interested to see how the campaign from MS Australia, which uses an interesting analogy to explain what life with MS, is all about. Have a look at This Bike Has MS:
Now I don’t live with MS, so I can’t say if this is in any way an accurate representation of the physical issues which impact on day-to-day life. Does it provide a true portrayal of some of the problems faced by people living with MS?
I know that I was quite scathing a few years ago when describing what I considered to be a well-meaning, but pretty useless simulation of a hypo. Perhaps people living with MS are echoing my criticism of the hypo simulator, claiming that this ad really doesn’t explain much. There may be ways to try to demonstrate – or even allow someone to experience – some of the physical aspects of a health condition. But they only go a little way to explaining the real life, day-to-day, emotional and psychological pieces that make up chronic health conditions.
But however flawed these attempts may be, I still think that they are important, because they go some way to explaining – or at least illustrating – the condition in a physical way. Getting on that bike will give someone a sense of the physical side of MS, just like the hypo simulator demonstrated some of the physical symptoms that accompany a low.
And any efforts that results in less stigma, more compassion and better understanding of why we need to continually lobby and advocate for more – for better – is a good thing.
Almost fourteen and a half years ago, I took up a very part time job at Diabetes Victoria.
The diabetes world was a little different back then and today, as I packed up my office and was farewelled by a group of amazing women I have been honoured to call my team, I reflected back over the years.
- I had been using a pump for about five months when I started working there. It was the first time that many people in the organisation had ever seen one and there were a lot of questions.
- The pump situation in Australia was a little different to today. If you wanted a pump, you had a choice of a Medtronic 507C or a Disetronic DTron.
- Smart pumps were not a thing yet!
- There was no DAFNE yet either.
- The few of us who were pumping had to self-fund the consumables to the tune of about $300 per month.
- It was in May 2004, after a lot of lobbying, that the Government announced that pump consumables would be listed on the NDSS, reducing their costs to about $30 per month. This was the first taste I ever had of political lobbying and advocacy and I loved it!
- Within my first three weeks of being in the job, about half a dozen different women called saying they wanted information about diabetes and pregnancy. We didn’t have anything, so together with some like-minded groups, we set about developing a resource that provided all the information women wanted in a format they liked. That was my first taste of realising how important it was to listen to the ‘consumer’ and it became the overarching philosophy of my work.
- No one was talking prevention of type 2 diabetes. And when that started, it started a discussion about a huge issue.
- No one was talking about diabetes and mental health – except those of us living with the condition. We knew that it was real; we knew that burnout was debilitating; we knew that our mental health directly correlated with our ability to manage our diabetes. Seeing the Australian Centre for Behavioural Research in Diabetes become a real thing has been a game changer for people with diabetes as it has opened the discussion in ways we could only have imagined!
- People with diabetes at diabetes conferences? Not really, but we have made some strides there! (Psssst….but not enough!)
- Social media? Not a thing back in 2001. Now, online support, which was fledgling to say the least back in 2001, is everywhere and accessible by many, many people.
What a change a (almost) decade and a half makes! The diabetes landscape is very different. I’m glad I get to still be a player in this space in my new national job.
But today, it’s about saying goodbye.
And with that, I want to acknowledge a group of women. These women:
To (in alphabetical order), Alice, Angela, Anika, Carolyn, Elise, Elizabeth, Jane, Kelly, Kim and Kristina: thank you for making my last day so lovely. But more so, thank you for being the people who ‘do’. Each and every day, you come into work and do things alongside – in partnership – with people affected by diabetes to improve their lives in some way. Your commitment to people living with diabetes is second to none, there is no other team like this one in Australia and the work that you do each and every day is, in fact, life changing. We hear that frequently.
I am so fortunate that I got to lead you in my clumsy and sometimes ranty way, and I thank you all for indulging me as you have. I wish you all the best and will be watching – very closely – all your future successes.
Diabetogenic 