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It’s day three of EASD which (allegedly) is in Barcelona. Most of my time has been spent in the cavernous Fira Barcelona conference centre and on Tuesday, I traipsed to one of the far corners for the tenth #docday event. (You can read about previous #docday meetings here and here. And here.)

As always, #docday featured some shining lights of the diabetes community who did a stellar job sharing some of the great work they are doing to support people living with diabetes.

I could do what I usually do and write up all of these terrific initiatives. Or, I could just share this video. For the first time, #docday was streamed live on Facebook so that it could reach a far broader audience. How great is that‽ Brilliant Mona manage the tech and made sure that the stream worked for the whole of the almost two hour event. (The start of the video is around the wrong way, but stay with it because it turns after just a couple of minutes.)

Thanks to Bastian for inviting me to speak again. I am so lucky that he thinks that I have something valuable to say. (This year, I do agree – I spoke about Diabetes Australia’s The Lowdown 2019 campaign and how digital peer support can reduce the isolation many people with diabetes experience.)

So… enjoy the video! I hope you’ll agree that there really are some dynamic people in this community who are truly working to help others. They’re all pretty damn awesome. (You’ll need a Facebook account to watch this stream.)

DISCLOSURES

My airfare and part of my accommodation to attend EASD was covered by Lilly Diabetes so that I could participate in the DOCLab advisory group meeting which took place all of Monday. Another night’s accommodation was covered by Novo Nordisk as I attended their advocate meeting on Digital Health Technologies. While my travel and some of my accommodation costs have been covered, my words remain all my own and I have not been asked to write or speak about any of the activities I attended, or anything I have seen at the conference. As ever, profanities are also all mine.

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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.

This is an edited version of a blog post I wrote over three years ago, but refer to frequently. Because it seems that there is a human need to force people to feel that their lives could be worse – so much worse – so they should be grateful that it’s only diabetes they have to contend with. Or that they only have a certain type of diabetes, because the other one is worse. Or that they were diagnosed at a certain age or in a particular decade, which is (somehow) better/easier/less crap than a different age/different decade. Oh, and of course…at least it’s not <fill in the blank>… because that would be worse.

I say, fuck that.

I get that people genuinely are just trying to make others feel better about a situation. Here’s the deal though – no one really expects that. At least, I don’t. I don’t need anyone to try to buoy me up or make me feel better. I don’t need anyone to point out others have it harder (yeah – I know that…). I just need people to nod. Aaron really has it nailed,  and I tell everyone that he knows just what to do in those moments when diabetes is pissing me off: offer a cup of tea, some chocolate, and loudly pronounce ‘Diabetes sucks‘. I don’t think he realises just how validating that is and how much more meaningful it is to me rather than insisting I look on the bright side and be all Pollyanna-ish about my screwed beta cells. 

Next time you are tempted to say ‘…at least…’ to someone with diabetes (or, for that matter, someone who is having a rough time about anything at all), stop for a minute and think about what you are really saying. Because honestly, you’re not helping at all.


For the sake of my own mental health, I have learnt to not compare myself with others.

I was thinking of this the other day when I was involved in a conversation with a woman newly diagnosed with diabetes. She told me that she was really upset at the response from a close family member who, when told about the diagnosis and how distressed she was, responded with ‘It could be worse. At least it’s not cancer.’

I’ve had that said to me. Several times. And it is one of the most offensive things I have heard. I don’t really know how to respond to it, because it’s true, I don’t have cancer. But I do have diabetes and that is pretty bloody horrible sometimes. (For the record, I equally dislike the idea of responding with ‘At least it’s not cancer? There is a chance of remission with cancer; type 1 is for life…’)

I get just as annoyed when it happens in our community. ‘At least it’s not type 1,’ is something I have heard said to people with type 2, diminishing the challenges they may face. A woman who had just been diagnosed with gestational diabetes told me that people kept telling her that at least her diabetes would go away when her baby is born. Sure, that may be the case, but right here and right now, this woman is pregnant, thinking about her baby and wondering just what diabetes is doing to her growing bub.

When I was anxious about my impending cataract surgery a few years ago, I was told ‘It’s nothing. At least you don’t have to have laser or have your eyeball injected.’ Again, that’s true. But I was still terrified and had every right to be.

When discussing a nasty hypo ‘At least you didn’t lose consciousness and wake up to a roomful of paramedics.’ Sure, I remained conscious throughout that unpleasant and seemingly endless low. But I needed help to treat it and it happened in front of my kid. She was scared, which really upsets me and makes me feel guilty.

When our experiences are belittled or minimised, it means we may stop sharing them. No one wants to be told they are being a drama queen and that it could always be worse. Of course it could be worse, but that doesn’t mean what we are dealing with doesn’t suck.

I have had diabetes for 21 years now. I have not had to deal with debilitating complications. I have not had to spend weeks in hospital because of my diabetes. But does that mean that my fears and concerns and anxieties are any less relevant than someone whose experiences are different?

And that’s why you will never hear me say to someone newly diagnosed ‘At least you have just been diagnosed. Just wait until you have had diabetes as long as me and <this or that> happens,’ because everyone’s experience is different and that newly diagnosed person may have their own concerns at that particular time. Or not. Which is also fine.

I had a healthcare professional once tell me that at least I didn’t have diabetes ‘too terribly’, because I worked, had a child and travelled. It was one of those (incredibly rare) moments where I was stunned into silence. I was torn between wanting to say  ‘Well, surely that makes what I’ve achieved all the more incredible‘ and stabbing her with a fork. I said (and did) nothing.

There is no ‘at least...’ when it comes to diabetes. There is no discussion about how it ‘could be worse’. Because the truth is, it could be a whole lot better. I could NOT have diabetes.

The perfect Effin’ Birds response (because there always is one!) if someone says ‘At least….’ about your diabetes. (For more of these wonderful sweary birds, click on the image. And buy the book!)

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.

Window seat on a Qantas flight back to Melbourne after a busy few days at #ADC19 and to say that I am exhausted doesn’t touch the sides of how I am really feeling. It’s been a busy conference, but then, when are conferences not busy? I’ve spoken to a lot of people, sat in a lot of meetings, heard a lot of sessions. But that’s just the usual way conferences go.

My exhaustion started before I even got in a cab to the airport on Monday. And really, that exhaustion isn’t just about the sore legs, the lack of sleep or the mental overload of trying to digest stats and presentations, or wandering around a huge conference centre.

I’m so burnt out right now. Not diabetes-wise; advocacy wise. I’m weary. And I feel so, so beaten that I almost ache. I feel like I am at the edge of tears a lot of the time because everything feels like such an effort.

This is a challenge when working in, while living with, diabetes. Even when my diabetes is impacting as minimally as I could ever hope it to (thanks to the Loop god/esses again), the big world of diabetes is there in a way that, at times, crushes me. I used to feel like this a lot more when I had to spend so much time justifying to co-workers the value and importance of the work I and my team were doing. That’s not the case now, but there are still times that it all does feel like it is too much.

And when I feel like this, things that usually would barely be a blip on the radar are weighing me down. I usually am ready to take on whatever is thrown at me, or whatever I see that needs the PWD voice to interject, but right now that actually feels like a burden. A relentless burden where my efforts are misfiring or yielding hardly any benefit. The fire that is usually ignited in my belly feels like instead of fuelling my enthusiasm and passion is instead giving me heartburn.

Right now, being in this advocacy space is making me feel hopeless. I know that there are always allies that truly do believe in what I believe in – the value of the PWD, the need for us to be heard, the value and vastness of our experience and expertise.

But the voices of those who don’t necessarily feel that way are especially loud at the moment. It’s the HCPs who still (STILL?) question the right for PWD to be wandering around and on the stage at diabetes conferences, the comments about how the value our lived experience doesn’t equal the weight of scientific evidence, the messaging that I keep seeing everywhere I turn that misrepresents diabetes and actually does PWD a disservice. It’s the idea that others think they can dictate to PWD how we need to see the safe places we have created, or tell us that because they can’t back up with data when we say a technology, or a service or a program helps us, it is not valid or deserves funding. It is being confronted constantly online and offline and at every opportunity, when really, if we say we feel a certain way about living with diabetes, we actually do have the right to have that unchallenged.

And right now, I don’t seem to have the energy to try to counter that.

I tried to explain to someone the other day why I rarely let something that I see as being negative towards PWD go by. I know that it would be easier to ignore a lot of the crap and let it just slip by. I know that being angry is tiring. But that isn’t enough for me to not respond.

Usually, I have the resilience and robustness to address whatever the issue, and then whatever gets thrown back at me. I don’t think that I am the only one who can do this, but I do know that often I am one of the few people who actually is at the table while it is happening. Once, where I was the only PWD in a meeting of HCPs someone told me that I didn’t need to have an opinion on everything and I pointed out that actually, as the only PWD in the room when others were making negative comments, I actually do. And that it was in my position description, so I was simply doing my job.

I am tired. I really am.

Having my tribe around me this week has helped – it always does. But even with this support, and the laughs and the knowing looks and the understanding, I’m feeling beaten. (I am so grateful to have had them around this week…I’m not sure how I would have otherwise coped…)

I know it’s a phase but this time I don’t know how to locate the strength I need to get back to where I like to be. Or to push down the doubt and imposter syndrome that shoots up alongside this sort of advocacy burnout. That’s what happens – just as with diabetes burnout – we start to second guess out efforts and wonder if what we are doing is enough or really has any point. There is a point – I know that. There has to be. Because the personal investment is vast and really, there is no other choice but to keep on keeping on.

Grateful for my tribe.

It’s day one of the Australasian Diabetes Congress (#19ADC) which is being held in beautifully sunny and shiny Sydney over the rest of this week. Once again Diabetes Australia has brought together a team of diabetes advocates and bloggers to provide real time, on the ground updates from the Congress, which is a brilliant way for people with diabetes not here to keep updated on the sessions, latest research and new tech that is on display.

I have spent a lot of my advocacy life talking about the value of having people with diabetes at this sorts of healthcare professional events. I’ve defended our right to be here until I have turned blue in the face. I have said the words ‘Nothing about us without us’ so frequently that people have asked me if I coined the phrase (of course I didn’t – others have been saying this for years longer than I have). I have challenged people who have said that this conferences are a safe place for HCPs to talk amongst each other without concern that PWD might misinterpret what they are saying. We belong here – it is as much a place for those of us living with diabetes as it is for those working in diabetes.

Yesterday I was involved in two events – I gave a talk with Grumps at the Roche Educators Day (#RED2019), and then we co-facilitated the Ascensia Social Media Summit (#OzDSMS) – and there was a lot of talk about the importance of people with diabetes at events like this. I’ll be writing about both these sessions later on, but for now, I want to share a comment that came out of the Ascensia event when we were talking about what advocacy means and why we need to be present in all diabetes discussions. Kim Henshaw spoke about the importance of PWD being advocates and I think this just nails it.

The lived experience is critical for people to understand what diabetes is all about. It was so refreshing to hear Diabetes Australia CEO, Greg Johnson, say I’m a real believer in the power of the person with diabetes telling their story. It’s not just about organisations doing it, it’s about individuals doing it in all sorts of ways.’ 

This is why it makes sense to have us at these conferences. Our insights, ideas, thoughts and knowledge and expertise is valuable. That’s why we’re here.

Disclosures

My flights to attend ADC were covered by Roche Diabetes Care Australia. Thanks to the Australian Diabetes Society and the Australian Diabetes Educators Association for providing me (and the other #DAPeoplesVoices) with a complimentary press pass. My accommodation and all other costs have been covered by Diabetes Australia (which is where I work). My words here and in all my tweets and other social media activity are mine and mine alone. I’m trying really hard to not be sweary and these efforts should be rewarded with chocolate. 

I so love it when New Yorker cartoonists are able to provide me with a beautifully succinct explanation for something that seems to confuse people.

Sure, we can talk about prevention and what we can do to reduce risk. But sometimes, there are things way out of our control. Being able to explain that particular side of the diabetes coin may just go some way to reducing a little of the blame and shame that gets thrown in our direction…

(Click cartoon for details.)

 

As part of my role at Diabetes Australia, I am often a media spokesperson for the organisation and will do radio or television interviews to talk about … well … diabetes. I usually step in when our CEO, Greg Johnson, is unable to do the spot, or if it is more in-line with the lived experience work that I do.

In the lead up to National Diabetes Week, I was interviewed on a program on commercial TV that airs in the middle of the day over the weekend. I spoke about NDW, gave a quick diabetes 101, answered a few questions. And responded to a segment they’d run the week earlier where they had interviewed Dr Michael Mosley, where he had spoken about intermittent fasting, the 5:2 diet, and low calorie eating for rapid weight loss as management tools for type 2 diabetes.

When asked about Mosley, I started by saying there is a growing body of evidence suggesting that rapid weight loss and/or intermittent fasting is a way that some people with type 2 diabetes have found is useful in managing their condition. (You can read my thoughts on using words such as reverse, remission or cure here.) Building on this evidence is important – and so is seeing how people are going 5, 10, 15 years down the track. Plus, it is fantastic that this is a treatment option that works for somepeople with type 2 diabetes.

I added that we need to caution suggestions this treatment is something that will work for everyonewith type 2 diabetes. Some people won’t respond to these methods, and will need other options for how to manage their own brand of diabetes. They should not be made to feel that they have failed if one treatment does not work for them.

I said all of this in about 45 seconds, and didn’t think any more of it. I walked out of the studio, climbed into the back of a cab and got on a plane to Brisbane, settling in for a week or NDW-prep and then NDW itself. I completely forgot about the segment airing until a few people had mentioned seeing it.

I still haven’t watched the whole interview, but I honestly can’t remember anything that I said that was especially offensive. The hosts and the segment producer said it had gone really well.

But clearly, there were some viewers who took objection to what I said. I know this, because my inbox and socials DMs were infiltrated with quite a few comments from people who were more than happy to tell me that I was wrong. They told me that following a similar program to Mosley had worked for them, (I am always, always happy when people find what helps), and that perhaps I should be more open minded, (I am – I just don’t believe that there is a one size fits all solution to diabetes). I was told that low carb is the only way to go and that my comments about there being no such thing as a ‘diabetic diet’ were wrong and that I was a shill for Big Food (yawn).

And then, a few people took the discussion in a direction I’d not had to deal with before, with these choice comments:

‘It’s obvious you could do with some intermittent fasting.’

‘Stop believing food companies and your own organisation and start eating low carb to manage your own diabetes because at your weight you are doing yourself harm.’

‘You are an example that dietary guidelines don’t work. If you ate low carb and fasted, you’d lose some of that excess weight.’

‘Stop listening to your dietitian and eat low carb, high fat. You’ll lose weight and won’t get all the complications that are in your future.’

‘Do you add sugar to your coffee? You mention baking cupcakes and brownies. Do you add sugar to them? Do you eat all normal foods which have sugar in them?’  

There were others. They were equally tedious, misguided and, at times, laughable. (For example, ‘my dietitian’? As if!)

Now, I didn’t at any point during the interview say that I live with diabetes. I didn’t say anything about the type of food I eat or how I manage my condition. I didn’t mention baking or drinking coffee. If you know me, you would know that I do have diabetes, bake and drink coffee. And if you don’t know me, you can find that out quiet easily. If you went looking.

It seemed that some people went looking. I didn’t know any of the names that accompanied their useful and not-asked-for counsel. I assume they didn’t come from people I know, because I don’t know too many people who would send me this sort of advice.

But these folk (there weren’t many – maybe a dozen or so) took the time to find out who I was, how to message me and then tell me that I needed to lose weight and manage my health condition differently.

Please understand that I’m not asking for positive comments or reassurance about my body or my size. I don’t want anyone telling me I am a healthy weight, that I look fine and that I didn’t deserve what I got. NO ONE – whatever their size or shape – deserves this sort of unsolicited commentary from complete and utter strangers. Or people they know, for that matter.

This is about the idea that there are people out there who, if they disagree with something someone says, or if they hear someone suggesting that people manage their diabetes in a different way, get online and insult a person they have never met before by telling them to lose weight.

I know that this is a really tiny incident. And it’s the first time it has ever happened to me. I know that there are some people who face this sort of bullshit regularly.

It is not okay. Body shaming or commenting on someone’s weight or how they look is never, ever acceptable. And tying it up by telling them they are harming their health does not make it any better.

I totally had coffee and lemon cake I baked last night for breakfast. There was sugar in both.

If you’re living with diabetes and need some body positivity (and hey, who doesn’t), here’s another plug for Body Posi Betes which you should definitely follow on Instagram right now. 

Sometimes, something happens at a diabetes conference that I need to sit on for a while before I can write or talk about it. At ADA this year (almost six weeks ago now), there was a moment that has stuck with me and I think it’s time to talk about it.

I was sitting in the front row of the language session – because, of course I was – eager to hear from the all-star panel that was going to be looking at the language issues from the perspective of the PWD and HCP, as well as look at the role HCPs play in addressing diabetes stigma and how they can improve communication. I loved the well-rounded approach the session was taking, and settled in for a couple of hours of discussion.

The line-up was a veritable A-list of the best voices in the space. We had ‘Jane squaredhttps://diabetogenic.wordpress.com/2019/06/08/greetings-from-san-francisco-and-ada2019/, with Dickinson and Speight book-ending the program, Joe Solowiejczyk giving the consumer side and Kevin Joiner providing strategies for dismantling stigma.

Jane Dickinson has been an absolute champion of the diabetes #LanguageMatters movement in the US. And it was in her introductory session that the moment of today’s post happened. Jane was speaking about how HCPs see diabetes and people living with the condition. And she showed this slide:

I can’t remember if Jane read out the quotes. But I do remember how I felt as I read them and took in what they meant. I felt beaten.

As people living with diabetes, so many of us have firsthand experience of hearing these sorts of comments directed to us. Or we have had friends with diabetes tell us their tales. Or we have heard passing comments from HCPs expressing similar sentiments. The idea that we don’t care, have brought it all on ourselves, deserve what we have coming – and conversely, don’t deserve care – us pervasive through the diabetes landscape.

This is how diabetes and those of us are living with it are perceived. And it is heartbreaking.

There is no consistency as to who is making these comments – healthcare professionals from all different disciplines, at different stages of their careers, with different experiences. Some work in tax-funded settings, others in private settings. They are considered the best in their field, they are held up as examples of excellent care. Other HCPs refer PWD to them.

Often, I hear people say that these attitudes are really only ever the thoughts of ’old school’ HCPs who have been around for a long time; it’s a throwback to the patriarchal attitudes of healthcare – to days when doctor or nurse knows best and ‘patient’ does what they are told, and if they don’t, they get told off, while being written off as not caring for themselves.

But that assessment is actually not true at all. Some of the most sensitive and tuned-in HCPs I know have been working in diabetes for many, many years.

And some are yet to have even started their career. In exactly the same way that diabetes doesn’t discriminate, it seems that these horrid attitudes and stigmatising comments can come from people at every stage of their career.

Here is the whole slide.

That’s right. These comments came from future nurses. They hadn’t even set foot on the wards yet as qualified HCPs. But somehow, their perceptions of people with diabetes were already negative, and so full of bias. Already, they have a seed planted that is going to grow into a huge tree of blaming and shaming. And the people they are trusted to help will be made to feel at fault and as though they deserve whatever comes their way.

This – THIS – is why I am not stopping banging on about language and diabetes. THIS is why I get frustrated when someone responds to – and reduces – a discussion about this issue with ‘But I/my kid is happy to be called (a) diabetic’. THIS is why I constantly highlight when people or organisations or people in the media are using stigmatising or negative language.

The words we use shape the attitudes we have, and the attitudes held by many about diabetes are disgraceful. Imagine if instead of mindsets like this, HCPs came out of their training with the idea that people with diabetes need support, education, information, compassion and skills to best manage a condition that no one, but no one, ever asked for Just think about how different – and better – that could be.

The ADA session ended perfectly – with Jane Speight (my personal diabetes #LanguageMatters hero) playing the Mytonomy ‘Changing the Conversation’ video. So, here’s that video again. Watch it. Share it.

 

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