Diabetogenic

Calm down!

October 1, 2019 in cupcakes, Diabetes, DOC, Food, Health, Peer support, Social media, Stigma | 3 comments

The #DOC has brought some brilliant people into my life, and Melissa Lee is one of the most brilliant. I adore her. I adore her humour, her political sass, her intelligence, and she gets me thinking with a lot of the things she shares online. She is SMART, and if there is one thing the world needs right now, it’s more smart people. I first met Melissa when she was leading the Diabetes Hands Foundation, and her compassion and advocacy skills won me over.

She is also extraordinarily talented. She sings like an angel and used to be a singing teacher. Perhaps our shared past-music teacher lives have also drawn us to each other.

Melissa has been doing her #DParodies for a number of years now, taking well-known songs and giving them a diabetes work over. They can be hilarious or sometimes a little heartbreaking. But they are always clever and thought-provoking.

Today, she unleashed a new song. I knew this one was coming; I knew what it was about. And I knew she was going to nail it.

With this parody, Melissa has addressed an issue that is close to my heart: food shaming in the diabetes community. I have written a lot about this, (here, here, here…), most recently here after I was fat shamed following a TV interview I did for work during National Diabetes Week.

I know that not everyone who follows a certain eating plan becomes militant, but I can say with all honesty that the only place where I have seen a coordinated approach to shaming people for choosing to eat a certain food group is from particularly aggressive corners within the LCHF community. Don’t believe me? Start with this tweet. Still don’t believe me? Read the comments on YouTube below Melissa’s video. By the way – the comments are all unoriginal and boring: Suggesting that someone is eating their way to a litany of self-inflicted diabetes complications, or is in the pocket of Big Food for daring to eat a cupcake, or calling someone fat? Tick, tick, tick.

I don’t care what you eat. Really. Your diabetes; your rules. But I do care if you are cruel, stigmatising or just nasty. Melissa is suggesting that people who do those sorts of things calm down. And I couldn’t agree more.

#HackingHealth at #EASD2019

September 27, 2019 in Community, Conferences, Diabetes, DIYAPS, DOC, Loop, Real life, technology | 1 comment

One of the many highlights for me at last week’s EASD meeting was the satellite event about DIYAPS. It was a Hacking Health event, co-organised by the OPEN Project consortium and promised to highlight the perspective of the #WeAreNotWaiting movement through the eyes of people with diabetes, researchers and clinicians.

It was standing room only, with the event having sold out a few days earlier. I was a little late (I had to present at an event involving early researchers and PWD) so unfortunately missed the always brilliant Dana Lewis kick off the event.

If you ever need someone to warm up an audience and set the scene about the DIYAPS movement, Dana is your person! I have seen her present a number of times now, and always pity anyone who shares the stage with her. Her presentations are always enthusiastic, articulate and engaging, and leave the audience wanting more.

I followed her talk on Twitter as I was in the cab from the EASD conference centre to the Centre Cívic Sagrada Família (bonus of offsite events is actually seeing some of the tourist attractions the city has to offer!) and could see that the audience was enchanted and galvanised with her talk.

The program was packed – and provided a balanced view of not only people using the tech (because honestly, sometimes it can sound like we have all drunk the Kool-Aid!), but also about DIYAPS in clinical practice, and research settings, as well as a session on medical ethics.

There were many stand out moments for me, but perhaps the one that stands out the most was from paediatric endo, and fellow Looper, Katarina Braune where she was able to distil DIYAPS into this single sentence (as tweeted by another Looper, Andrea Limbourg):

Perfect, perfect summary of looping!

We also heard from Roman Hovorka who presented on the experience of developing the Cambridge closed loop system (CamAPS). Anyone who has been following artificial pancreas technologies and research would know of Roman. I’ve heard him speak a number of times at conferences around the world and have always been grateful for his passion and dedication to advancing technologies to benefit people living with diabetes. So, it was a little surprising that I found his talk a little challenging.

One of the things that I have always admired about the DIYAPS movement is that there is a strong sense that our chosen DIY path sits neatly alongside commercial systems and regulatory bodies. While we may not choose or want to use a commercial system (and, of course, are not waiting for them), that doesn’t mean that there is disdain or derision of other options. In fact, there is admiration and gratitude for industry working to provide this technology to a broader audience. We know that not everyone wants to build their own system, and many ARE happy to wait for a system that will be in warranty, and comes straight out of a box, rather than cobbled together.

I say this knowing that same courtesy is not always afforded to the DIY world from industry, and I can point to every single time someone from a company developing a commercial automated system claims their systems are safe – implying that those of us in the #WeAreNotWaiting world are all cowboys not concerned with safety.

I would so have loved to have heard Roman really highlight all that his system has to offer, and what sets it apart from DIY systems, and how it is one more choice that will be available to PWD, rather than put down the DIY movement. I am all – ALL – about choice and love the idea that with this choice comes a better chance for us to find the tech that works best for our personal circumstances.

We don’t need to be defensive about ‘the other’ in diabetes technology. We need to acknowledge that there is no one right, perfect choice. DIY is certainly one of those choices, and as we heard sprinkled throughout the day, has been life changing for many people. But it is not the only option out there, and few people in the DIYAPS world would even suggest that it is. I guess perhaps that is what challenged me about Roman’s talk – he did seem to throw DIYAPS under the bus a little when it would have been far better to suggest it was just another bus route people may like to take.

So how could this event have been better? Well, I wish it had been part of the official EASD program. There is a lot of opportunity for HCPs to learn from the user-led tech community, and this extends to technologies and treatment options beyond DIYAPS. Reinforcing what is an overarching fact of life with diabetes – that all diabetes is DIY – is important for all working in diabetes to remember.

While DIYAPS technology may be at a far spectrum of the whole DIY diabetes idea, having HCPs and researchers listen to just how diabetes impacts on daily life, and the decisions we need to make is critical in their approach working with us.

Panel session to finish the day.

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.

I am part of the OPEN Project Consortium. I did not receive payment for my involvement in the Hacking Health event.

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.

Tell us how #LanguageMatters to you!

September 25, 2019 in Awareness, Communication, Diabetes, DOC, Engagement, Language | 3 comments

Once or twice in the years I’ve been working in the diabetes advocacy space, I have spoken and written about diabetes and language. And by once or twice, I mean rarely a day goes by when I don’t hashtag language matters somewhere on some social network.

You can call me a one trick pony (or Blossom), but I don’t mind, because I think that trick is pretty bloody important, and for the last eight years, I have been more than happy to highlight why the words we use when speaking about diabetes is critically important.

The first time I spoke about this was at the launch of the Diabetes Australia position statement, ‘A New Language for Diabetes’. I stood on stage at the Victoria State Library alongside Diabetes Australia CEO, Greg Johnson and ACBRD Director, Jane Speight as we started what has become a movement, supported by the diabetes community around the world. This was in September 2011 and this photo is from that day.

Now, eight years later, it’s time to revise the statement the started the #LanguageMatters juggernaut, and that’s where you come in.

Diabetes Australia is inviting people living with diabetes, their friends and families and HCPs to complete a survey about to have their say about the words and language used when speaking and writing about diabetes. This is your chance to share what is important to you, what really matters and what doesn’t really bother you at all. We know that the way we communicate about diabetes does matter, but we need your help to shape our revised survey.

Click on the word cloud below to be taken to the survey, and please share in all your networks. We need to hear from you to help build the evidence for why this continues to be a critical issue in diabetes care and communications. Please help us do that!

DISCLOSURE

I work for Diabetes Australia and am on the working group reviewing the Language Position Statement. I was also involved in the development of the initial statement. I have not been asked by Diabetes Australia to share details of the survey which will be used to inform the revision, but of course I am, because how could I not?!

#docday at #EASD2109

September 20, 2019 in Conferences, Diabetes, DOC, Peer support, Social media | 1 comment

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.

Seen on the 6

September 13, 2019 in Awareness, Diabetes, Language, Mental health, Real life | 2 comments

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.

Revisited: At least…

September 12, 2019 in Diabetes, Real life | 5 comments

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!)

Ally? Not really

September 9, 2019 in Awareness, Diabetes, Health, Healthcare team, Social media, Stigma | 3 comments

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.

Revisited: Diabetes girls’ and women’s business

September 6, 2019 in Awareness, Diabetes, Health, pregnancy and diabetes, Real life | 3 comments

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.

Refocusing

August 30, 2019 in Advocacy, DOC, Peer support | 1 comment

Jeez, burnout sucks. And boy, was I feeling it last week. My blog post from last Friday accurately summed up the exhaustion, stress, feelings of defeat and the heaviness I was feeling as I flew back home. I didn’t even have the energy to yell ‘Bullshit!’ during the part of the safety video when the guy ~~claims~~ lies that there is great coffee to be had on the aircraft. That is just not true, Qantas.

Thanks to everyone who reached out – to everyone who Tweeted, Facebooked, Instagrammed, commented, texted and emailed. I did take a few days off SoMe, but when I logged back on, I read absolutely everything that was sent to me, and I am overwhelmed (but in a really good way) by everyone’s support.

I participated in yesterday’s #DSMA chat because the awesome Cherise thought that a community chat about advocacy burnout was a good idea, and as is Cherise’s way, she was right. I learnt a heap about how others manage the inevitable feelings of overwhelm that affect so many of us at one time or another.

I am incredibly fortunate to work in a place that truly values the lived experience. As I wrote in this piece after the Ascenisa #OzDSMS, my CEO has always not only valued my role in the organisations he has led, but has championed the importance of lived experience. I’m really glad he was able to speak to some of Australia’s most impressive advocates (all of whom he already knew) to continue to explain just how important the work they/we all are doing truly is. I held on to that for a lot of last week and over the weekend too.

But it was the support of those with diabetes that helped me dig deep to find the way out of the dark space; those who understand that special brand of burnout that we feel when not only has our own body done its best to undermine us, but others and circumstances around us pile on, making things just so damn hard.

There is an ever-increasing body of evidence that shows peer support is helpful to people living with health conditions. But there is so much more to why we become parts of these communities than to just improve our health and wellbeing, or to connect with others who ‘get it’.

In these communities, those advocacy efforts we are working on in our own little corners of the world become real and big. Heather Gabel wrote this awesome Twitter thread about frustrations I share with her about how we need to focus on the social change our communities create. I will always need the tea and sympathy, but I also need the connections with those world-changing folks whose drive, determination and dedication help me thrive.

I would be naïve to suggest for a moment that the devastating and crushing burnout I was feeling last week has disappeared. It’s still there, and I suspect it will be for some time, and I’m going to keep taking time out, and stepping back for a little bit longer. But I am far more motivated now, and the crappy things that culminated in feeling overwhelmed are starting to look like blips rather than insurmountable peaks. Thanks to everyone who helped me step back and refocus.

Burnt. Out.

August 23, 2019 in Advocacy, Diabetes, Real life | 10 comments

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.