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Two things happened that got me excited on the 6 train when I was in New York back in June.

Firstly:

Obviously, every green circle in the world ever is a tribute to Loop. That’s my story and I’m sticking to it, and I refuse to be told otherwise.

And secondly:

Click on pic to be taken to the campaign where you can clearly see this and other images.

I absolutely love this from NYC Department of Health and Mental Hygiene. The campaign is called ‘Choose the Best Words’ and encourages people to speak with their friends and family, and learn how to support those who need it. Ads like this one also highlight a recent city-funded mental health first aid training course that is offered in all five NYC boroughs. The ads, which were all over the subway and other places in the city, point out that using the right words and phrases to support those living with mental illness is really important and can help reduce associated stigma.

I guess this kind of follows on from yesterday’s post. I know that often people say things just because they feel the need to fill a silence…or just to say something, not realising the impact of the specific words they say. But it does matter. The choice of words you make really, really matters. And this beautifully simple campaign shows that.

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Firstly, let me start this piece by saying #NotAllHealthProfessionals. There: I got it out there upfront because I know that what follows is likely to garner response from a shedload of healthcare professionals that they would never do the sort of crap I am about to write about.

Sure – I know that there are lots of great ones out there. I get that there are champions for our cause; HCPs who genuinely walk alongside us and truly listen to what we say and what we need.

But here’s the thing. It takes more than that; more than just doing the right thing in your own little world. It takes guts and leadership to take a stand, and it takes standing up to colleagues who are not getting it right. And sadly, even the good ones don’t do that enough.

Last week, I shared a pathetic image from a Facebook page that is, allegedly, a satire site. It seems to be administered by HCPs and most of the comments appear to be from HCPs. (You can see it here if you are on FB. I don’t want to share the image on my blog.)

I shared the image with these words: ‘This isn’t funny. it’s not smart. It’s not clever. Even less funny is that it appears this is a page for and by healthcare professionals. The comments are disgraceful. HCPs are not our allies when they do this sort of shit. Instead, they’re contributing to the distress and shame that many PWD feel.’

The thing that upset me most wasn’t the pitiful attempt at humour. Let’s be honest – there was nothing in there we had not seen before. A million times over. This sort of ‘humour’ is in the DNA of every stigmatising diabetes ‘joke’.

What upset me were the comments that followed. At last count, there were about 1,000 of them, most of them applauding the image. Here’s just a selection from the first few:

‘Brilliant – but no one ever heeds this advice.’ (From a nurse who claims 30 years of nursing experience.)

‘This is how I label things.’ (Pharmacist.)

‘Should be on every diabetes med.’ (Exercise physiologist.)

‘The things you wish you could say to patients without losing your job.’ (Nurse.)

‘Love that!’ (Med student.)

‘Hahahah!’ (Podiatrist.)

‘Legit needs to be on boxes.’ (Nurse.)

‘Sorry…I can’t read that small print on account of my sugary eyes.’ (Doctor.)

‘Hahahah. Great quality labelling.’ (Pharmacy student.)

‘Accurate.’ (Physiotherapist.)

‘I love this so much.’ (Doctor.)

‘Damn, should’ve mentioned patient’s McDonalds intake as consideration for Contrave (a weight loss drug).’ (Doctor.)

‘If only we could write that!’ (Nurse.)

‘Control your diabetes or you’ll lose your feeties.’ (Doctor.)

There were more… a lot more. Predictably, the very few of us who questioned just how this was meant to be amusing were told that we needed to lighten up/see the funny side in it/understand it was satire. Or people doubled down to tell us that we were wrong and then went on to school us with further myths about diabetes. Seriously, these people need to get just a touch of originality and try to come up with a stigmatising meme we’ve not seen several million times already, and then come back at us with inventive comments.

I am willing to bet that pretty much every single one of those HCPs will claim to be all about ‘patient-centred care’. I am sure that they believe that they are truly there for what their ‘patients’ need. If pressed, they would probably say that they would never, ever say something like this in front of a patient – because they care about us so much.

That’s bullshit.

A healthcare professional who is truly there to champion PWD would have called that meme out for every shade of stigma that it is. They would not have shared it amongst their colleagues or wanted to print it out for the tea room (as a couple of people said they had done). They wouldn’t have found it funny; they would have found it offensive, stigmatising and downright wrong. And they would have said that, trying to put a stop to hundreds and hundreds of comments.

And those HCPs who realised that it was a load of bullshit and said nothing? They need to look at themselves too. The standard you walk past is the standard you accept. When you say nothing, you’re implicitly saying that it is okay.

It is not okay.

Who remembers the outrage from HCPs last year when #DoctorsAreDickheads was trending on Twitter? (Here you go: I wrote about it here.) Doctors were outraged, offended and irrate, and urged patients to counter the horror stories that people were sharing with positive stories of their own doctor experiences. And what happened? People – patients – did that. Even I defended my HCP team when I wrote my blog post. And I even prefaced this post with a disclaimer, because I know that some HCPs will read this and be all indignant. If that is your response to this… respectfully, get over yourself!

Because, where are those HCPs now? Where are the doctors getting angry and outraged every.single.time we have to endure another stigmatising, cruel, demoralising and downright wrong ‘joke’ or comment? Where are the HCPs standing up at conferences when a presenter makes some comment about how PWD ‘fake’ our BGL results or ‘forget our meters’ for download or whatever other behaviour gets us a non-compliant mark against our name?

So, here is what I want to say to HCPs – every single one of you.

Please, please be an ally. Stand up for us. Listen to us. Don’t talk over us. Don’t tell us that our experience is wrong or doesn’t matter. Don’t walk by when your colleagues do this sort of crap. Don’t minimise or delegitimise us by saying that it’s ‘just a joke’ or promising us that you wouldn’t do this. Because enough of your colleagues do. (Also, don’t @ me and tell me how much better you are because you are a leader and don’t do this kind of shit or do call it out. That’s great. And thank you. This isn’t about you. But you still can do something.)

We need you to do this for us. Or rather, along with us. Because when we do it alone (and most of the time, it is us doing it alone), we are dismissed as being too emotional or not being able to understand the humour. As much as I wish it was enough for our comments to resonate, it isn’t. So, we need allies. We need you.

It takes courage and leadership. But if you truly, truly want to be there for us for what we need, then you need to step up. Please be an ally. Please.

P.S. There were a couple of HCPs who commented on the FB page that obviously, this meme was about type 2 diabetes and not type 1 diabetes. If you are one of those HCPs who insists on doing things like that, ask yourself just how much you are contributing to the misinformation and stigma about type 2 diabetes. We know that T1D is autoimmune/not preventable, but when you use a broad brush to correct comments about diabetes with ‘You mean T2D‘ you are not really helping. In fact, you’re just adding to the misinformation by suggesting that all T2D is preventable and that is not true. You know that. Do better.

Catching the end of Women’s Health Week, revisiting this post from last year about all things girls, women and diabetes. Today, on the final day of the campaign, Jean Hailes for Women’s Health is suggesting that we take some time to think about our mental health. That sounds like a good idea anytime, but I’m really pleased to see that the organisation is highlighting this important, under-researched and misunderstood health issue. Check it out at their Women’s Health Week website

I’ve really appreciate today’s messages – they couldn’t have come at a more opportune moment! But that’s not to say that the rest of the week wasn’t just as terrific. Have a look at each day’s theme – there is lots of important information to read through. 

And have a read (or re-read) through this post which was all about a lot of the things we don’t talk about enough. When I published it last year, a number of women reached out and said they used this as a conversation starter with loved ones and HCPs. That might just work for you too…


It’s Women’s Health Week here in Australia and once again, Jean Hailes for Women’s Health has been doing a stellar job of talking about women’s health issues that are rarely (if ever) spoken about in the public sphere. As usual, this year’s campaign is presented in a clear, no-nonsense way. Just as it should be.

Shining a light on women’s health issues is critical for a number of reasons. There is still too much stigma associated with women’s sexual and reproductive health, so finding a way to easily speak about the realities of women’s health just makes sense.

Not all women’s health issues necessarily seem relevant to diabetes. But, as ever, diabetes has a way of complicating things, so it makes sense that they are on the list of things covered when speaking with our HCPs.

I honestly can’t remember the last time my GP spoke with me about any sexual or reproductive health issues. Some women see gynaecologists regularly (I see mine every couple of years for a pap smear), but that may not be the case for most women. Surely conversations about contraception, periods and other things should be part of a regular check-up alongside other ‘tick the box’ issues such as blood pressure, cholesterol and weight.

I wish that I had seen an endo from the beginning who had spoken to me about women’s health stuff. I know that it wasn’t until I found the endo I see now – one who I sought out specifically for her expertise in women’s health and pregnancy – that issues such as contraception were even mentioned.

So, here is a (non-exhaustive) list of things that women with diabetes may want to consider chatting to their HCP about – and that HCPs may want to consider speaking with PWD about. (There are links at the end of the post for where to go for further information.)

Periods. To be honest until I was trying to get pregnant, I really didn’t think much about my period. I thought of my lack of regular periods (as in, I would get my period sporadically maybe four or five times a year) as a blessing, rather than something to be concerned about. Of course, once I was trying to get pregnant, I was desperate for a monthly period that I could set a clock to.

No HCP had ever spoken to me about how diabetes would impact on my period – or, probably more importantly, vice versa. I had no idea about how different times in my cycle might affect my glucose levels. In fact, I think it wasn’t until I started wearing CGM and could really see what was going on that I learnt how to manage my insulin doses at different times throughout the month. (And it also explained the two days each cycle I was so freaking low I pretty much took no insulin. Apparently that’s how MY body deals with ovulation..)

If I was diagnosed today, I would be asking a lot of questions about diabetes and menstrual cycles and the best way to adjust my management methods depending where I am in my cycle.

Sex. When I’ve written about diabetes, women and sex before, I’ve noted how at diagnosis no one spoke with me about how diabetes could impact on my sex life. It wasn’t until I started speaking to other women about it that I realised that this is an issue for a number of us.

We need to start talking about women with diabetes and sex in a non-threatening way that normalises the discussion.

UPDATE for this revisited post: Check out this brilliant resource that came out of the research led by UK health psychologist, Professor Kath Barnard. This is one of those projects that I was just so damn pleased to be involved in!

Contraception. No one mentioned contraception to me when I was diagnosed. I was twenty four, engaged to be married. Surely both the endo and CDE I saw the day I was diagnosed realised that I was having sex, or considering it after I was married. (I really, really hope that they didn’t think that they didn’t need to speak about it with me because we weren’t married yet…because it was only 20 years ago and there’s no place for puritan attitudes in healthcare. Plus, that ship had sailed. A long time before.)

At the time, I was on the pill, but there was no discussion about the best form of contraception for me relating to diabetes, (was there a better pill to be on?), and I didn’t know to ask. Surely, all women of child-bearing age should be asked regularly about  contraception, especially as women with diabetes are so often told about the importance of avoiding unplanned pregnancies.

Pregnancy. Thankfully, these days finding information about diabetes and pregnancy is relatively simple. If you know where to look.

But twenty years ago, when I was diagnosed, the only thing I was told about diabetes and pregnancy (and I think it was only because I asked) was ‘You need to have all your kids by the time you’re thirty’. (Not sure if just scraping in three days before I turned 31 counts there. Probably not. Looks like this deliberately non-compliant palaver has been happening for a while….)

Talking pregnancy and diabetes needs to be done delicately, but it needs to happen. And, ideally, it needs to happen long before pregnancy is even being considered.

Back in 2003 when I was at Diabetes Vic, I coordinated the first diabetes and pregnancy info evening. Over 100 people were squashed into an overheated room in the basement of the old Royal Women’s Hospital. At the end of the night, I was walking around speaking with as many of the people who had come along as possible to see if they had found the evening useful. I walked up to one woman and thanked her for coming. ‘I hope that you found tonight helpful,’ I said to her. She nodded at me, and I noticed she was holding onto a copy of the ‘Can I Have a Healthy Baby?’ booklet that Diabetes Victoria had published with Realty Check and ADIPS the previous year. ‘My daughter has T1D,’ she said to me. ‘She’s only 8, so obviously this isn’t something that is relevant now. But I wanted to know so that when she asks questions I can answer them. I feel really reassured that she can have a baby if she wants one if it’s planned.’ I remember reaching out to her and hugging her (I have no boundaries). ‘Your daughter is so lucky to have you in her corner,’ I said to her. ‘Thank you for coming!

Fertility. This isn’t the same as pregnancy. It’s not an easy subject – ever – but it is one that needs to be discussed openly and safely. I can honestly say that no healthcare professional has ever discussed fertility with me unless I have raised the issue.

My experiences around fertility have been complex, emotional and quite painful. It took me a while to get pregnant the first time. My irregular periods needed to be addressed (fortunately, that was easy enough with only Chlomid needed), but even once I was having monthly cycles, and apparently ovulating regularly, I could not get pregnant.

When finally did, I miscarried. Miscarriages are common. I know that. But it still sent my spiralling into a really difficult period which took a lot of time and effort to emerge from. I got pregnant and had a baby, and thought that from there, fertility issues would be a thing of the past.

But I think that because miscarriages are so common that sometimes it can be forgotten just how traumatic they can be. My first miscarriage ended my first pregnancy, and the two other miscarriages I had ended those ones. It’s clear that while I seem to be able to get pregnant, keeping those babies growing, safe and alive is not something my body does well. I wanted that explained to me – or at least for someone to speak with me about it.

Diabetes and fertility was never, ever discussed with me, except that I was reassured after each of my miscarriages that I could not blame diabetes for losing the baby. That was a double edged sword because I wanted to know what it was that was stopping me from being able to continue my pregnancies. I would have liked to be able to point at something. Because the alternative is that it’s just another thing my body can’t do properly.

PCOS. I was diagnosed with polycystic ovarian syndrome when I was about 26. I’d been referred to an OB/GYN by my endo because she wanted me to have a gynaecological check-up because we’d started seriously talking babies. My lack of regular periods was flagged as something that needed investigating and an internal ultrasound showed a number of small of cysts all over my ovaries. I had no other symptoms of PCOS, but that was enough for my OB/GYN to speak with me about potential fertility issues once we were ready to start trying for a baby. I had a laparoscopy and they were removed.

Both type 1 and type 2 diabetes can increase the risk of PCOS (more so type 2 diabetes) so this is definitely something to discuss with your healthcare team if you are in any way concerned.

Body image. I don’t even know where to begin with this because body image is such a huge, huge concern for so many women, and I really do believe that diabetes amplifies those concerns. Whether it is the physical signs of diabetes (tech that we wear on our bodies), the psychological side of being diagnosed with a life-long health condition or the emotional toil of having an allegedly invisible condition that we can’t help but see every day, living with diabetes significantly affects how we feel about our bodies.

This is one of the reasons that having a psychologist as part of our HCP team is important, because we need people who are able to ask the right questions and offer support and solutions for dealing with how we see our bodies.

Eating disorders. Diabetes and food; food and diabetes. It’s impossible to separate the two, and for some people, the relationship is complex and very, very difficult. Women with diabetes do have an increased risk of developing an eating disorder, and of course, there are diabetes-specific eating disorders. And, unfortunately, this is another issue that is not spoken about openly.

Menopause. At my last appointment with my endocrinologist, I raised something that I’d not raised yet. ‘What can you tell me about diabetes and menopause?’I asked her.

I’m not going through menopause – I’m not even peri-menopausal yet. But I don’t need a magic mirror into the future to see what lies ahead. And I like to be prepared.

So, there’s something you should know about how I came to see the endo I have been seeing for the last almost-17 years. I was searching for someone who could help with what I really needed, one of them being an expertise in T1D and pregnancy. She was absolutely the right endo for me then. And continues to be now, because recently, she has become an expert in menopause. (I know! It’s like she is a few years ahead of me in her areas of interest and expertise!)

If I’m honest, I’m a little stressed and worried about what menopause has in store for me when it comes to my diabetes, mostly because I know nothing about it. We’ll see how that plays out…

Self-care. Why do women find it so hard to prioritise our own care and take care of our own wellbeing? We do need to get better at fastening our own oxygen masks before making sure that everyone else on the plane has theirs in place.

This might be another reason to consider seeing a psychologist to ask for some tips for how to make sure that we remember to look after ourselves in a way that is healthy, consistent and achievable.

Pelvic floor. Diabetes, as the gift that keeps on giving, can mean our pelvic floor isn’t as strong as it could be. Just as nerves in other parts of our bodies can be affected by our diabetes, so can the ones in our pelvic floor.

(You’re doing your pelvic floor exercises right now, right? Yep. Me too.)

Looking for more info? Have some links…

Here’s the Jean Hailes for Women website for Women’s Health Week.

The rather awesome Mindy from There’s More to the Story has been writing about diabetes and sex over the last couple of months and her posts are a must read. I wish I’d had something like this to read when I was first diagnosed.

Some information about diabetes and PCOS.  This article is about type 1 diabetes and PCOS. And this one is about PCOS and types 1 and 2 diabetes. 

The NDSS Diabetes and Pregnancy website is an absolute goldmine of information about pregnancy and planning for pregnancy. There are different sections for women with type 1 and type 2 diabetes, HCPs and loved ones of women with diabetes.

The NDSS Type 1 Diabetes and Eating Disorders booklet can be found here.

Lots of valuable information for PWD and HCPs at the Diabetes and Eating Disorders Awareness website.

Last week, Instagram got rid of ‘likes’. The company line was that it wants people to concentrate on content shared, rather than its popularity. Sure, Instagram, let’s go with that.

For the platform that is preferred by ‘lifestyle influencers’ (seriously – can you imagine putting that on your arrivals card?) it all seems a little disingenuous, but if not knowing who is liking content speaks to you, then perhaps this is a good idea.

I have a love/hate relationship with Instagram. I have mine pretty locked down and only share with friends and family. I only follow people who make me feel good, or make me laugh. I don’t follow anyone who makes me feel like I am not enough. Or anyone who drinks kale juice for breakfast. These good folks can namaste themselves elsewhere.

If you are connected with me on there, you’ll know that what you see mostly is photos of my family, the coffee I’m about to drink, the cookies I have just baked, and, depending on the season, blossom trees (hello, promise of spring) or jacaranda trees (hello, promise of summer). Plus, there’s diabetes spam…so much diabetes spam.

You won’t see me telling you about my perfect diabetes life though, because my diabetes life is not perfect. And you won’t hear me going on about how grateful I am that diabetes has given me so much, because really, I’m not. And you won’t hear me saying that others have it worse and that I am #SoBlessed, because … well … because #FuckThat.

I wrote once that I despise the concept of ‘At least…’ or ‘It could be worse’. Could it worse? Of course it could! But having a body that does what it is meant to would be a shed-load better!

Positive affirmations are great if they give us hope or something to hold on to. They’re not great if they start to make us feel like we are failing, or feel bad for not always being optimistic and upbeat. Sometimes, diabetes makes it really hard to walk on the sunny side of the street.

I frequently say diabetes sucks (because honestly, I am yet to hear someone tell me how it doesn’t), or that there are days that I truly hate diabetes (because I really, really do). This doesn’t mean that I am looking for someone to throw me a pity party. It doesn’t mean that I think my life is hopeless.

But some days, diabetes is especially challenging, and no number of positive memes or positive self-talk is going to change that.

I am a positive person by nature – annoyingly so at times. I see the good in people and in situations. But I refuse to believe that it is not okay to sometimes admit that my arse has been beaten that day by the health condition that is so difficult to live with, or to privately and publicly say that I truly, honestly, totally, absolutely despise diabetes.

I need the space to have those down days and the bad days and the days where I admit that I am not a superhero. I need the time to snuggle under a quilt on the sofa and watch some trash and not feel all positive or like I can conquer the world.

It is easy to believe that a lot of Instagram diabetes folks are all happy and accepting or grateful to have diabetes. Truly – if they are and are able to maintain that positive attitude all the time, that is wonderful. I’m not those people. I don’t resent them in any way. I just believe it is important to understand that not everyone is able to have that sort of outlook.

Sometimes, it’s not possible to ‘positive’ your way out of a bad diabetes day or try to convince yourself that you don’t hate diabetes, but really do love your body when it feels just so damn broken. And that is okay.

Really – it is okay to not be okay. It is okay for us to not be shiny, happy people* all the time.

What I will say is this: If your hard days are outnumbering the good days, please do see if there is someone who can help. It truly is okay to feel down about diabetes, but when you are feeling that way all the time and it’s affecting your day-to-day life, there is help.

When I find that the scales are definitely tipping that direction, my first port of call is my friends with diabetes. They never make me feel crap for not being positive. They certainly don’t feed my misery, but they do remind me that this is hard and that it is perfectly understandable and acceptable to have negative days. And closer to home, my husband knows that I don’t need a pep talk, or to be told to snap out of it, or a reminder that life could be worse. He tells me that diabetes sucks while passing me some chocolate. Smart, smart man.

I have come to learn the signs of when I need more help than that, and have a great psychologist I can link in with when I need to. I can’t tell you how much this has helped me. One of the first things my psych said to me was that it was okay to grieve my old life, and to feel that diabetes sucked. Being given permission to feel down at times felt like being able to breathe again.

And here’s the rub: knowing I don’t have to be Ms Positivity all the time – and saying just how hard things can be sometimes – actually has made me far more positive in the long run.

*I was talking about this with my beautiful friend Georgie yesterday. She is one of the first people I turn to when I am having a shitty diabetes day and we spend a lot of time just talking about how hard it can be. Her advice is always spot on. Or there is no advice – just an ear and a shoulder and a coffee date.  As we were chatting, I said the thing about it being okay to not be shiny, happy people all the time, when I realised (and told her) that REM reference was from before she was born. Oh, how we laughed and laughed. And then I felt old.

Right here, Georgie and I ARE being shiny, happy people.

At the beginning of National Diabetes Week, I often think we should create some sort of drinking game for every time the tabloid news churns out diabetes myths and misconceptions. I realise the flaw in this idea – we’d all be drunk by 9am on launch day and stay that way for the remainder of the week.

Diabetes myth busting is exhausting. Honestly, sometimes I feel like we need a cape and some sort of auto-reply weapon because we are fired the same comments from every angle and it gets boring: No – diabetes isn’t contagious. Yes – I still have diabetes. No – it’s not only kids that are diagnosed with type 1 diabetes. No – there is not one type of diabetes that worse/better than another type. Yes – I can eat that. No – I can’t cure my diabetes with a diet of kale, kombucha and positive affirmations to the fairy god of keto diets.

As we fire back our response with accompanying eye rolls, muttering things under our breath and wondering when the stupidity is going to stop. (Spoiler – it’s not.) It is tiring and it seems never ending. Sometimes, we just can’t muster up the energy to respond, so we don’t. And that’s absolutely okay.

My level of frustration about diabetes misconceptions varies depending on where it is coming from. I kind of expect it from commercial television; I expect better from the ABC and SBS (as I wrote here about kale-kombucha-gate).

Where I find my frustration levels hit fever pitch is when those misconceptions and myths are perpetuated amongst the diabetes community.

This week, there was an article circulating about what type 1 diabetes is really about. I’m not sure if it was a new piece or if it resurfaced because it was NDW. I am all for using this week to set the record straight and ensure that what is written is factual.

What I am not for is when people try to explain type 1 diabetes by stigmatising type 2 diabetes. That makes me really, really mad. Explaining what type 1 diabetes is and how it works can be done without making type 2 diabetes sound like it is the fault of the people living with it. But time and time again, I see people with type 1 (and parents of kids with type 1) use phrases like ‘My/My child’s diabetes is the one they didn’t bring on themselves’ or ‘My/My child’s diabetes can’t be reversed – I/they have it for life’.

Type 1 diabetes is serious, and it is seriously misunderstood. But so is type 2 diabetes. As people living with type 1 diabetes, we know how frustrating it is when people get it wrong; we know how awful we can feel when people say things that make us feel bad. And we know how maddening it can be when people say things that make us feel blamed and shamed for having type 1.

So why is it the default position of many living with (or affected by) type 1 to throw people with type 2 under the bus as if they don’t have the same response we do when people get it wrong. Those feelings of stigma and shame we feel? People with type 2 have them as well.

I have type 1 diabetes, and for a long time, all the work I did centred around type 1 diabetes. I make no apologies for that. In fact, I built my career by growing from the ground up an unapologetically and exclusively type 1 diabetes program. There was a huge gap that needed filling, and the diabetes organisation I was working for at the time was prepared to throw resources at making that happen.

I wrote the other day that I know I will be focusing a lot on the National Diabetes Week 4Ts campaign which focuses on the symptoms of type 1 diabetes. This isn’t only because I have type 1 diabetes. It’s because so many of my friends diagnosed with type 1 – especially those diagnosed as adults – have horror stories to tell and I truly believe that a smooth, boring type 1 diabetes is far, far better than a traumatic one.

It is absolutely okay to have a focus for your own advocacy – no one should be made to feel that they have to fight for everyone or every single issue. I know a lot of people who fundraise exclusively for type 1 diabetes research because improved treatments and finding a cure is the most important thing to them. All the power to them, I say.

But there is no need to build up one cause by pushing down another. It’s not okay to fight the stigma of type 1 diabetes by contributing to the stigma felt by people with type 2 diabetes. And it’s not okay to correct people for not getting the facts about type 1 diabetes right by getting the facts about type 2 diabetes wrong.

For me, it all comes back to this: all diabetes sucks and no one asks to get diabetes. We’re all doing the best we can with whichever diabetes has been served up to us. Saying something so others feel bad makes no sense at all.

This is an edited version of the first post I ever wrote about my experiences attending the Kellion Victory Medal Award Ceremony. I wrote it back in 2011 (for the old Diabetes Victoria WordPress blog), ten years into working for a diabetes organisation, and already had attended a number of these award ceremonies.

Since this post, I’ve written about other ceremonies I’ve been lucky to attend, and shared the stories of the medal recipients. I love hearing their tips and tricks, and tuck away their words of advice for when I need them. Peer support, I think, as I hear them talking. Their stories are our stories are my stories…

Today, I’m back for this year’s Victorian medal ceremony. I flipped through the program and read the stories of the people receiving their medals. This was my favourite quote for the day. It’s so, so true. 


Today is my favourite day of the work year. It’s the Kellion Victory Medal award celebrations where we acknowledge people who have lived with diabetes for 50, 60, 70 and even 75 years. Just stop for a minute and think about that. Seventy-five years with type 1 diabetes. Now think about what diabetes was like back then: urine was boiled, needles were sharpened. Home blood glucose testing was still about forty years away, modern insulins hadn’t been considered. Insulin pumps, of course, were things of the future.

When I started working at Diabetes Victoria, I had lived with diabetes for just under four years, and in that time I hadn’t met anyone else with type 1. I was still getting used to the new reality that had opened up the day I was told that I had type 1 diabetes. My 27 year-old self had re-written my future, and instead of the life I had imagined, I had reshaped that into one that involved terrifying diabetes complications, probably no children and a reduced life expectancy. I pictured myself unable to take care of myself at a time in my life where I wanted to be travelling and seeing the world. And I saw a life where my still-new husband would have the burden that is a wife with diabetes.

Because that was the picture of diabetes that had been presented to me in the four years since my diagnosis. Time after time, the health professionals I saw delivered news of doom and gloom. And inevitability. Hope was not discussed. Except, strangely, the promise of a cure in five years – although I could tell that even the medicos telling me this didn’t believe it. I felt devoid of hope. Hopeless.

And then I was invited to the Kellion Medal ceremony. I can still remember clearly my apprehension about attending the awards, but I went along to Parliament House to see what it was all about.

It was the best thing I could have done. It wasn’t about living with diabetes for decades. It was about LIVING. I heard tales of travels, raising families, busy and successful working lives. Stories of being pioneers to make sure people with diabetes were not discriminated against. I heard stories of hope.

Kellion medallists are in every way remarkable – not because they are inspirations for living with diabetes. That’s just what they have to do as part of their life. They’re remarkable because they’ve made diabetes just something they do. In learnt that I needed to stop holding them up as some sort of magical unicorns – they were just playing with the cards they’d been dealt. The same way I do.

Each year I walk away from the awards ceremony with an ‘injection’ of motivation and determination. And a booster shot of hope. That’s my response to the day and the medalists – but not their responsibility.

We have a duty to be honest to people newly diagnosed with type 1 diabetes. Promising a life that is full of puppy dogs and bowls of cherries does not accurately paint the picture of what life with diabetes is all about. But neither does scaring people senseless. When people are in that initial fog, where they can’t see beyond the end of the week and they are starting to rewrite their future, that is when they need stories. The positive and real ones. The stories of hope.

If I could find a way for every person newly diagnosed with diabetes; for every parent of a child newly diagnosed; every partner, loved one, sister, brother of someone newly diagnosed with diabetes to attend the Kellion Medal awards, I would.

There is no promise of a cure, no threat of nasty complications, no dread of being a burden. But there is laughing and sharing and amusing stories. And hope. To meet a Kellion Medallist leaves people feeling one way: filled with hope.

DISCLAIMER AT THE BEGINNING TODAY

I work for Diabetes Australia and have been involved in our National Diabetes Week campaign. I am referring to this year’s campaign in this post, as well as previous campaigns (which I have also been involved in). This is a commentary piece on what I think works and what doesn’t. This is all my opinion – thoughts my own and mine alone.


It’s National Diabetes Week in Australia this week, and that means the socials are all in the key of D, with lots of news and stories about that little health condition that many of my friends and I know a little bit about.

And campaigns. There are lots of diabetes campaigns.

The other day, I re-watched a lot of old NDW campaigns from years gone by. It was no secret at the time that I wasn’t all that enamoured by some of them. The campaigns that really concerned me was the ones about complications using graphic images of an eye being operated on, or a heart that was (apparently) seriously damaged, or what a kidney looks like when on dialysis. While some people’s concerns about these ads was on the ‘unintended consequence’ of how people already diagnosed with diabetes might feel when seeing these, mine was that have always struggled with isolating body parts from the whole person living with diabetes. It doesn’t work that way – even if we have a diabetes-related complication in one part of our body, it still remains intact and attached to the rest of us. (I think this piece I wrote with Grumps for diaTribe explains best why this is problematic.)

In recent years, I feel that we have become a lot smarter and more systematic about our campaigns. This is as much about the approach to how we have done things, as well as the actual campaigns themselves. Previously, there was a theme and it was rolled out for a year, and one year only. Each new NDW meant a new campaign theme. And then, as soon as the week was over, we shelved it.

It’s not just diabetes organisations that are guilty of throwing all their energy at ‘their’ health week and building up a big campaign that they yell and shout about for the week and then, in a puff of smoke, it all disappears – often never to be heard of again. It’s as though there is a collective sigh and then everyone ticks a box as if ‘that’ issue has been done and doesn’t need to be done again.

Back in 2016, Diabetes Australia ran a campaign called 4,400 Reasons which addressed diabetes-related preventable amputations. There was clear calls to action behind the campaign and one was to highlight the need to reorientate the Australia health system towards early intervention and the implementation of more foot care teams across the country.

The campaign wasn’t graphic – there were no images of amputated limbs or blaming and shaming those who have had a limb amputated. It had a very clear focus on how the system is letting people down – not that people with diabetes were not looking after themselves.

Since then, we have continued to push the message of this campaign. Screening is important and it needs to happen systematically.

And then yesterday, at the start of another NDW, the federal government made an announcement about a new funding initiative that would start to build a national screening and treatment program called ‘Foot Forward’.

That’s how to do it – find a way to address an issue, make it a focus, keep going, continue to push the same messages, talk to the right people, make it happen. We’re not done, by the way. This is the start of a national screening program, but until we know that preventable amputations are happening far less frequently – or not at all – we keep working at the problem.

For this NDW, we are continuing to promote the importance of early diagnosis of both types 1 and 2 diabetes.

Our T1D campaign is the 4Ts and is a community awareness initiative to increase knowledge of the signs and symptoms of T1D.

Why are we doing it again? Because each year there are well over 600 Australians who are diagnosed with diabetes when they are very, very unwell. Most will have already been to the GP once, twice or even more times and have been misdiagnosed. Type 1 diabetes is fatal if it is not diagnosed in time. That’s the bottom line here. Until this stops happening, we need to teach people the 4Ts.

And when it comes to T2D we need a national screening program that means people are not living up to seven years with type 2 diabetes before they are diagnosed. Early diagnosis equals early treatment and that means better outcomes. That is a goal we keep working towards.

What can we learn about how to put together a meaningful public health campaign?

Time and time again, I hear people say, ‘Why can’t you run a campaign about the difference between the types of diabetes?’I want to ask you if you knew what those differences were before you or a loved one was diagnosed with diabetes. Think about other health conditions and just how much you know about the realities of life with those.

When it comes to health messaging, the airwaves are flooded. We have but a second to grab people’s attention. If we only talked diabetes 101 education to the general community, who do you think is really going to listen to that? I reckon it will be people already affected by diabetes – people who already get it. Do you sit there and watch or read about every other public health campaign for conditions that don’t have anything to do with you or someone you know? I know I certainly don’t.

I know nothing about stroke, however did learn FAST – because it was simple and important to know. Have I bothered to learn about what day to day life with someone who has had a stroke is? Or about the different types of stroke? Not really.

This week, you will see a lot of diabetes out there in traditional and social media. Share what you will and can. We already will share the things that are more relevant to our own experience – that makes sense. I’ll admit my bias and say that I am committed to getting the 4Ts message out that you’ll be seeing a lot of that from me. I have heard too many of my type 1 tribe talk about their horrid diagnosis stories.

I keep saying this – I don’t want or need or expect people to know the intricacies of my life with type 1 diabetes. Honestly – I don’t particularly to know that. But I would like people to be diagnosed with type 1 sooner. I would like them to be diagnosed correctly. I would like HCPs to know the 4Ts and have them front and centre.

I don’t want shock campaigns that scare people into inaction. But equally, I don’t want wishy-washy campaigns that offer nothing and have no call to action. I want more campaigns that deliver. And I think we’ve made great strides in that direction.

More musings from ADA, this time following yesterday’s diabetes-related complications session.

DISCLOSURES

I am attending ADA as part of my role at Diabetes Australia. My economy flights and accommodation have been covered by the organisation.

As a parent, I learnt there is this magical thing that happens when you are in a really crowded and noisy place with your kid/s. Somehow, over the roar of the crowd, you can always hear your kid if they are calling out to you. It’s some sort of sorcery that blocks out the din, and allows your kid’s annoying angelic voice to still be heard.

That kind of happened to me the other day when I was sitting in a café minding my own business, working away and savouring the always excellent coffee at my favourite local. There was a table nearby that seemed to be made up of a mum, twin two or three-year-olds and grandparents. They were talking loudly, the kids were playing and talking over each other. They were a little rowdy, but it made no difference to me. If you want to work in a café, you have to be prepared for the noise! I wasn’t listening to their conversation – I was focussed on what I was writing. I couldn’t tell you what was being said.

Until I heard the word ‘diabetes’ through the racket, clear as a bell. I looked up, to hear the rest of what the mum was saying ‘…and it’s like a sensor you wear – I think on the back of your hand – and you just run something over it and you get your result. I want to try it so I can stop having to prick my fingers.’

I have had a statistically significant number of diabetes in the wild encounters recently. It looked like I was about to add another one to the tally.

‘Hi,’ I said. ‘I have diabetes. I also am a diabetes advocate. I think you’re talking about the Freestyle Libre. It’s a small sensor that you wear on your upper arm, and you scan your smart phone or other reader device over it to see what your glucose level is. I wear a continuous glucose monitor. That transmits my glucose readings to an app on my phone. It’s different, but kind of the same in that it limits having to prick your fingers.’

We chatted for a bit and then a friend joined me. She was actually wearing a Libre sensor, so (after ordering her coffee) she did a quick show and tell to so the woman could see how it worked. (For the record, not all my friends have diabetes. This was a fluke!)

I passed on my contact details to the woman and encouraged her to reach out and get in touch for a chat. Because that’s what we do. That’s how this community works.

I’ve been thinking about our diabetes community a lot recently. After being in Manila (please read my disclosures on this post), I have felt that strong pull towards people who gather strength from each other because of our shared experience.

One of the sessions in Manila addressed some community initiatives that have really relied on that community spirit, and we talked about why they work. Grumps and I led the sessions and discussed Spare a Rose, #TheLowdown2019, and #TalkAboutComplications. These were examples of different ‘campaigns’ that all had similar results.

Spare a Rose is owned by the diabetes community and it is for the diabetes community. It works because no individuals own it – that’s not how it works. You want to support it, great! Do your thing and get the word out. No one directs what it looks like apart from encouraging others to reach into their pocket to support Life for a Child and save the lives of children living with diabetes.

#TheLowdown2019 is a campaign out of Diabetes Australia (disclosure: I work there), but it isn’t about us. It is us creating a platform for the community to share their stories and come together. What we heard as people shared their hypo experiences was others connecting to those stories.

And #TalkAboutComplications provided an opening statement and ongoing support and encouragement for the community to talk about a topic that is often seen as taboo, and filled with blame and shame.

As I wrote in this piece, the group in Manila was already a community, even if they hadn’t quite started calling themselves that yet. And since then, they have found their voices – loud, passionate, smart voices – and are showing what community does. They support each other; they build each other up; they share what they know.

We use the word ‘community’ a lot in diabetes. We talk about it in terms of face-to-face groups, we talk about it when it comes to meeting others with diabetes and welcoming them into the fold, and we talk about it in terms of our online connections. Some people struggle to find just where they fit in there, but I genuinely believe that there is a place for everyone. You just need to find the tribe that makes sense to you and your perspectives of diabetes.

I have written and read a billion words about why community matters, and how, when it’s right it can be an absolute saviour. When I try to explain the value, it’s easy to get lost in superlatives, and sickly sycophantic gushing that start to sound empty, so I often show this video and throw the hashtag #Simonpalooza at people, making them promise me to look it up and learn about it. Now, I can add the story to what happened in Manila last month.

I became part of a new community when I was in Manila, and those advocates became part of our bigger one. I feel that their experiences add to the diversity and the experiences of the DOC. Their stories start to meld into the fabric of other stories, and I so love that we now get to hear them too.

When those diabetes in the wild moments come my way, I can’t overlook them. I suppose I could have ignored what the woman in the café was saying and let her work it out on her own. But why would I do that? I have benefited from the no-agenda-other-than-wanting-to-connect attitude of many in our diabetes community – honestly, I benefit from it every single day. There is no way that I could do anything other than say ‘hi’. And connect.

(Video of Day 1 of the Manila workshop made by one of the advocates, Kenneth.)

I was reminded of this post from a couple of years ago when I was recently speaking about hypo simulators. I understand that there is some merit in trying to help people not living with diabetes understand some of the day to day issues and challenges we face. The idea is that this can create empathy, and a greater insight into how we feel about living with diabetes.

I also am very critical of these ideas when they are given more weight than they should. When we simulate something to do with diabetes, the focus is in the physical and practical. Wearing a pump (as described in this piece) or CGM will provide experience of feeling the device on one’s body, and learning how to drive it. It gives little more. 

When I first published this piece, a GP friend who lives with type 1, said that he likened this experiment to him shoving a pillow up his jumper and walking around for a few days and then claiming to know what it is like to be a pregnant woman. Another friend said that sitting in a wheelchair for a few days may give her an idea about how hard it can be to manouever a wheelchair around, she would have no understanding of what her friend who lives with quadriplegia deal with day in, day out, our how she truly feels. 

I am interested to know how others feel. I did receive some criticism when I first wrote this. When I shared in on Facebook, a friend said that I should at least credit the doctor for trying. Perhaps I was too critical – it wouldn’t have been the first time.

When we reduce diabetes to being about nothing more than the daily tasks and devices, we seriously undermine the effort it takes to live with diabetes each and every day.

I would love to know what others think….


I was recently sent an article from Medscape that was written by Svetlana Katsnelson MD, endocrinology fellow at Stony Brook University Medical Center in New York.

The gist of the piece is that for a week as part of her endocrine fellowship training, Dr Katsnelson wore an insulin pump and checked her BGLs, and now believes she knows about living with diabetes. She also considers herself non-compliant because she didn’t bolus for an apple.

This may be oversimplifying the article a little and I honestly do believe that the intention here is good. But a little perspective is needed, I think. It was this comment that really upset me:

‘The experience provided me with a better understanding of how to use the devices that many of our patients use every day, but it gave me much more than that. I truly began to understand how difficult it is to live with diabetes.’

No, Dr Katsnelson, no. You do not truly understand how difficult it is to live with diabetes.

What you have is an idea of what it is like to walk around with a device delivering non-life saving saline into your system. You also have an idea of how it sometimes hurts when a sharp object pierces the skin on your finger. You probably could have deduced that anyway because, you know, sharp object, skin, nerve endings etc. You know how the buttons of these devices feel under your fingers and the weight of the devices in your hands.

You may have an idea of how tricky it can be to accommodate a pager-like device if you are wearing a pretty, flowing dress to work (if that is your want). You may now understand how annoying it is to have to stop what you are doing because it’s time to do a BGL check.

But what you don’t understand is that diabetes is about so very much more than that.

Here is what you don’t have any idea about.

You don’t understand the feeling of ‘this is forever’ or ‘I never get a holiday from this crap’. I know that this was acknowledged in the article, but really, you don’t know how it feels to never be able to escape diabetes.

You have no concept of the boredom of living with a chronic health condition, or the monotony of doing the same tasks each and every day over and over and over again!

You don’t understand the fear that overtakes your whole being as you imagine all the terrible complications that have been threatened and promised as result of diabetes.

You have no notion of the frustration of living with a condition that doesn’t have a rule book – and in fact changes the rules all the time!

You haven’t any perception of the fear I sometimes feel that I’ve passed my faulty genetic matter onto my beautiful daughter; or that I am a burden to my family and friends.

You will never feel the judgement from healthcare professionals because numbers are too high or too low – or that there are not enough of them.

You will never be called non-compliant by a doctor or made to feel guilty because you are eating a cupcake – all because your beta cells decided to go AWOL.

While I really do commend the notion of HCPs trying the ‘day in the life’ (or ‘week in the life’) idea, I think that being realistic about what this experience provides is important. It does not give any insight into the emotional aspects of living with a chronic health condition. It doesn’t explain the dark place we sometimes go when we are feeling particularly vulnerable or ‘over it’.

I have to say that all in all, this article left a sour taste in my mouth and I don’t like to feel that way because it sounds like I am being Grouchy McGrouch. I’m not. And as I said, I think that the intention here is good.

I just don’t want Dr Katsnelson to think that she now knows what is going on in my head when I wake up at 4am and every terrible scenario plays out leaves me feeling a pressure on my chest and a blackness in my mind that threatens to overtake me.

But I also want Dr Katsnelson to know that I really don’t expect healthcare professionals to know and understand all of these things. I expect them to treat me with respect and dignity. If this exercise has helped that, then great, but please, call it for what it is.

The article discussed in this post (Svetlana Katsnelson. Becoming the Patient: Not as Easy as It Looks. Medscape. May 12, 2014.) can be accessed here by first creating a free login.

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