Diabetogenic

Giving permission

March 26, 2020 in Diabetes, Health, Mental health, Real life, Wellbeing | 3 comments

So, today I had a moment and completely lost it. Tears – big, fat tears – sobbing and ugly, snotty crying. I didn’t even try to hide it, which is what I would usually do. There’s no hiding anymore now that we are all living in confined spaces and pretty much on top of each other all the time. (Sorry to the neighbours if they heard too. Inner-city living means not much space between house boundaries…)

I felt a lot better afterwards. Lighter and less overwhelmed. I realised that being all peppy and positive was weighing me down – perhaps that annoying Pollyanna-ish exterior was becoming like an armour.

I really try to not do the whole ‘what if’ stuff. This was something that I worked on for a long time with my psychologist. Catastrophising diabetes isn’t a great idea at the best of times. Adding a pandemic to the ruinous thinking isn’t especially fun.

It’s not surprising that people with diabetes are talking more about how our mental health is faring in the current situation. Living with a life-long condition that is so demanding and has the ability to mess with our minds in the most insidious way already makes us susceptible to feeling distressed. Now, it feels like that has been turned up to eleven.

I’m trying to remember how I learnt to move from thinking ‘what if <insert whichever scenario was terrifying me at that moment>’ to ‘what if it never happens’. It took me a long time to understand how to do that, with varying levels of success. There were always scenarios that made me feel extra level anxious, and it was a struggle to try to be rational. I found that by allowing myself to think about the most worrying, scary and uncertain things for a set amount of time – giving permission, I guess, to the worry and concern – I could then move on.

It turns out that pandemics bring out the catastrophising. The end-of-days thinking is not especially good for one’s already stressed mental health. Thinking about the things that are happening or that could happen is hard. Hard and scary and terrifying.

This week, I’ve kept coming back to how the Diabetes MILES study showed that the number one problem area for people who participated in the study was worrying about the future and development of diabetes-related complications. There is so much fear of the unknown in diabetes. We just don’t know how it will all play out. We do what we can, we assess and try to minimise risk, we do the best we can with the situation we are in. But we don’t really know what is around the corner.

COVID-19 is that all over again. But with diabetes thrown in for good measure.

Today, I gave permission for the worry and concern to come out because pushing it away wasn’t working. It flooded over me and weighed me down. And then I allowed the tears and the sobs. I didn’t try to stop it, I didn’t try to hide it away. And then…then I could breathe again, and work on the things that help me feel lighter.

So, I’m breathing so deeply. I’m standing in the sunshine. I’m watching our littlest dog run around in circles because she (still) hasn’t realised that she’s not a new puppy anymore. I’m listening to my husband play music. I’m listening to my kid’s laughter because it’s my favourite sound.

And I’m still muttering to myself that this too shall pass. Not yet, and maybe not for some time, but it will. This. Too. Shall. Pass.

Keep asking: How are you?

March 24, 2020 in Diabetes | 5 comments

Friends… how are you today?

Revisited: This is Italy

March 23, 2020 in Travel | Leave a comment

(For Daniela, Elena and Francesca.)

I wrote this piece for ‘No D Day’ back in 2012 when Aaron and I were holidaying in Rome. Of course, the aim of No D Day was to capture something that is totally unrelated to diabetes. I was caught up in the beauty, excitement and frenzy of Rome, and simply couldn’t think of a better topic to focus my writing efforts.

Rome – 2018

We visited Rome again in 2018, this time taking the kid with us. She’d been to Italy before, but not its capital. I wondered if she would fall in love with it the way that we had; if she would get swept up in the buzz and the people and the wonderful madness of it all. She did, in spades. We arrived late in the evening, and as soon as we dropped off our bags at our apartment, we took straight to the streets for pizza. She was in love with the city before her first slice.

I am reading everything I can about how Italians are banding together to get through this impossible time, and thinking so much about my Italian friends. I had no idea when I saw Daniela, Elena and Francesca at ATTD that we may not see each other for some time, or what they had ahead of them when they went back home. These women are like family to me, taking me under their wing and allowing me to pretend that I am part of the Italian crew at diabetes meetings, and half as graceful and smart and stylish as they are. I’m not, but they are sweet to play along.

I know that we will visit Italy again. As soon as this is all over, we will go back, and fall in love with it all over again. Until then, I’m sending so much love to friends and family over there.

Jet lag is a bitch, but it does have its benefits. On our first full day in Rome we were out the door before 7am and watched the city wake up. Our apartment was a short stroll from the Spanish Steps. The afternoon before when we’d arrived, our driver had to battle his way throught the crowds to our tiny via. There were people everywhere – tourists with huge cameras, kids with gelati the size of their heads, locals pushing their way through the crowds and annoying men shoving roses into the faces of unsuspecting women and then demanding their partners hand over a few euro. It was chaos; it was loud; it is Italy and I love it.

But at first light, the area around the Spanish Steps was empty apart from a council worker hosing down the area, getting it ready for the onslaught. We saw a few nuns walking together, possibly on their way to an early morning service. The coffee bar owners were just starting to open their doors and set out the morning pastries.

We walked into the first open cafe we saw, stood at the bar and drank our perfect morning coffees and munched on crunchy cornetti filled with creamy custard.

Fuelled by caffeine and sugar, we walked. We started with the Trevi Fountain and were the only two people standing there. We snapped photos, read the signs and listened to the water flow. Together, we threw in coins – the legend promises we will now return to Rome.

We sat at the fountain, the spray from the water hitting our faces in the cool morning air. Slowly, other people started arriving, so we up and left and continued our walk. We wandered down little streets, stopped in different campi and watched as Rome woke up. We pointed out signs, statues and looked in closed shop windows.

And then, we turned a corner and before our eyes was the Colosseum.

It was after 9am by this time and the steets were starting to fill up again. The tables outside cafes were full. There was noise, laughter, talking.

I feel at home in Italy, which is ridiculous considering that I was born and raised in Australia by parents who moved here when they were tiny children. But it makes sense to me. The craziness of it and what looks like complete and utter disorganisation is actually ordered chaos. It works for the people who live there. Yes, it may take an hour to buy stamps at the post office (this did really happen – Aaron returned home to our apartment defeated, but at least our postcards home were mailed), and yes, it may take the woman at the gelati bar ten minutes to hand you your gelati because she’s talking to someone about her boyfriend and keeps walking away from the counter to tell her story, and yes, it is possible that you will get hit by a motorino scooting on the footpath.

But this is Italy. It’s beautiful. It’s crazy. It’s loud. And when I am there I feel my senses on fire and I am more alive than anywhere else. I just love being there. Love.

Empty Spanish Steps bright and early on a Sunday morning – 2012

How are you?

March 19, 2020 in Diabetes, Real life | 2 comments

Why I’m not stockpiling diabetes

March 17, 2020 in Awareness, Community, Diabetes, Real life, Social media | 2 comments

The other day, I went to a local pharmacy to buy some pump lines. There is one pharmacy in my neighbourhood that usually has insulin pump consumables on the shelf, so I don’t need to order them in. I just pop in when it’s time to top up my supplies and get what I need. I asked for a box of the lines I use. ‘There are two on the shelf,’ said the sales assistant. ‘Do you want both? You probably should stock up.’

‘No thanks,’ I said to her. I only ever buy one box at a time, usually when I am down to my last three or four lines. With the new box, I would easily have a six to eight-week supply.

‘Oh,’ I said to her. ‘You really don’t need to encourage people to buy more than their usual order. We don’t have shortages – that has been confirmed by Diabetes Australia and the Department of Health. Suggesting people stockpile is not a good idea at all.’

Are you stockpiling, or thinking about it? If so, I’m ask you to please reconsider.

I get that these are confusing and stressful times. I haven’t seen a roll of loo paper on the shelves at my local Woolies for weeks now. Other pantry staples are in high demand. And since the weekend, fresh fruit and meat sections have been almost stripped bare. Despite being told that we don’t need to panic buy, we’re seeing this behaviour and it is causing a great deal of distress to a huge number of people.

The last thing we need is for there to be the same situation when it comes to diabetes meds and supplies.

Here’s the deal: we are okay. There are no shortages. We don’t need to panic and stress. That has come directly from the Department of Health who has oversight of all drugs and NDSS supplies. It has also been communicated from Diabetes Australia*.

Where things have the potential to go the way of loo paper is if people suddenly start changing their buying behaviours. Then we have problems.

Think about it this way: before coronavirus, when was the last time you couldn’t find loo paper if you needed it? Never, right? And now, because there was some weird idea that toilet rolls were going to run out, people bought packs and packs of it. I know people who have hundreds of rolls of loo paper stocked up in their houses at the moment. I also know people who have been down to their last roll and are desperately trying to find kindly neighbours who will happily and readily spare a square (or two).

This is what happens when people change their buying behaviour and we really don’t want that to happen with diabetes medications and supplies.

WHAT YOU CAN DO

Be sensible! And don’t change from what you usually do.

What is your usual buying pattern? For me, I have always called in my insulin prescription when I open my second to last vial of insulin. That has been my pattern for years.

I buy pump consumables when I am down to the last few of each. A box of lines lasts me around six weeks; cannulas longer because I tend to reuse them a couple of times. I top up blood glucose strips when I’m down to half a box. (A box lasts me forever because I really only use them to calibrate, and I am rather lax at that).

The only, only thing I have a ridiculous stockpile of is lancets. Because: who changes lancets? And the only reason I have that stockpile is because every new meter comes with about ten of them. Plus, I think I still have the same box I bought 22 years ago at diagnosis…

I am making no changes to my buying pattern and behaviour and I would urge everyone to do the same. If people just keep on keeping on, we will not have shortages. If people start to make changes and panic buy, we could be in situation loo paper.

OTHER CONSIDERATIONS

We do have limits on our NDSS usage. I know I rarely think about this, because I never reach mine. I remember needing a special exemption when I was pregnant because I was doing a heap more BGL checks each day, but other than during that time, I have never needed to worry about getting to my limit.

ALL drugs and diabetes supplies have ‘use-by’ dates. The shelf life on some items (such as sensors) is shorter that on others. If you stockpile, there is a good chance that what you have hoarded will be out of date by the time you get through your supply. That will mean that when you eventually go to use them, they are not covered if something goes wrong (such as sensors not lasting their full time etc).

Also, if you reach your limit, that could mean that you are no longer able to access subsidised product, and you may be required to pay the full amount for them. For those of us who remember the days before pump consumables were on the NDSS, it suddenly makes running a pump VERY expensive…

PLEASE THINK OF OTHERS

When I left the second box of lines of the shelf at my pharmacy last week, I did that knowing it was likely that someone else would be in soon after needing the same lines. If you order two or three times more than usual, someone downstream is going to potentially have trouble accessing what they need when they need it.

Some people can only afford their diabetes supplies on pay day, or when they are running really low on supplies. They rely on being able to access things WHEN they need them and cannot stock up beforehand. Please be considerate of people in all situations.

If we all are sensible about this, we can completely avoid supply problems.

WHAT TO DO IF YOU ARE ALREADY STRUGGLING TO GET WHAT YOU NEED

Contact the NDSS (1800 637 700) with every single detail of what is going on in your situation. Provide details of the access point (usually a pharmacy) that has not been able to provide you with what you need. How long has this been the case? What are you trying to purchase? Have you tried somewhere else locally? (Remember that most pharmacies do not keep insulin or NDSS products in stock and they need to be ordered in.)

Also, please, please, please do not engage in online speculation of shortages online. This is what causes panic! If you have a personal experience, contact the NDSS!

TWO FINAL THINGS

Keep washing your hands!
IF YOU ARE STOCKPILING LANCETS, STOP IT. STOP IT NOW!! You KNOW you will never use them! And no one else will either, so they will haunt and mock you from your diabetes supplies cupboard/drawer for the rest of your days.

*DISCLOSURE

Yes, I work for Diabetes Australia, however I am not writing this because of that and have not been asked by anyone at Diabetes Australia or the NDSS to write this.

I am writing it because I am a person with diabetes who does not want to find herself struggling to access the meds and supplies that I need to stay alive, nor do I want any of my diabetes brothers or sisters to find themselves in the same situation.

No need to stockpile lancets. Or anything else!

Distractions in the time of coronavirus

March 16, 2020 in Community, Real life | 2 comments

I’m not in lockdown, but I am spending more time at home, and definitely avoiding crowded spaces where possible.

Cabin fever is going to be something that many of us have to deal with – more rapidly for some. I don’t really like being cooped up, and need to have things to keep me busy and entertained. So here are just a few things I’m doing to keep me occupied:

Baking…lots and lots and lots of baking (So, if I can be selfish, I would ask people in my local area to please not stockpile all the flour, sugar and other baking necessities, because one of my coping mechanisms is getting into the kitchen and creating cakes, biscuits and slices!!)
Homemade bread – this is new for me, but it is such a lovely and relaxing and rewarding thing to do
Reading books that I have already read and love – comforting and familiar is good at the moment, but I’m keen for suggestions
Netflix binges (Anyone watched Cheer?)
Watching Nigella re-runs and getting cooking ideas
Going for walks in the park with the dogs, and just hanging out with the pups. (They’re fun and don’t keep telling me how at risk I am)
Cleaned out the pantry. (I know: odd, but it was therapeutic and very satisfying!)
Effin’ Birds. Just do it – it will make you feel better!

I know this seems somewhat frivolous considering what is going on in the world, but sometimes, a distraction from the constant stream of bad news, and increasing numbers on a graph is a good idea.

And so, with that in mind, I’ll keep adding to this list, or do separate posts for recommendations. Help me out with book, and tv and movie suggestions. And recipes! Let’s see how people in our diabetes community are keeping distracted in the time of coronavirus.

Baking therapy.

Mental health & diabetes & coronavirus (oh my!)

March 13, 2020 in Diabetes, Mental health, Wellbeing | 10 comments

Burnout. It’s absolutely on my mind at the moment. I am burnt out with diabetes; I’m burnt out with advocacy. And I am burnt out with coronavirus – especially the bit where everything I see and read keeps mentioning that it’s all really just mild…except for elderly people and those with chronic health conditions.

Oh yeah – that’s me. The chronic health condition bit, although I am feeling old – so old – at the moment, too.

(I’m also burnt out at my husband breaking into song every time he hears the words ‘COVID-19’, and if I never hear the song Come On Eileen again it will be too soon. But I digress…)

I’m not afraid of coronavirus. I’m taking the precautions that have been recommended. I’ve not panicked or stockpiled anything, and I’m still going into work. Probably the way I have been most impacted is that I will be in Melbourne next week instead of Berlin, and again at the beginning of April when I was meant to be in Copenhagen. As with most people, I’ve been grounded and probably won’t be seeing the inside of an airport for a few months. It’s a small price to pay to stop the virus’ spread. (Alas, reaching Qantas Platinum One status will remain elusive for another year.)

All in all, I’m pretty calm and rational about what I need to do personally and understand how our own personal actions can and will contribute to the wellbeing of others. At least, I have been feeling calm and rational…

In the last couple of days, I’ve noticed that I am starting to tense up whenever coronavirus is mentioned, and I know that I have moved from just taking any information in, to feeling increasing levels of concern. I get that my anxiety has been heightened lately – due to completely unrelated reasons – and that is now being reflected in how I am responding to coronavirus. I am tangibly feeling upset when I hear stories of people with chronic health conditions being diagnosed with it, and the other day, I found that I was fighting back tears as, yet again, some politician somewhere promised that people who were diagnosed with the virus would most likely be okay – as long as they were not old or chronically ill.

I don’t like diabetes making me feel defenceless, and yet, here I am, feeling highly exposed and vulnerable.

Thankfully, reporting has seemed to be a little more sensitive in recent days and I’m feeling less disposable, or perhaps I was just getting better at avoiding anything that was making me seem that way. At least, that was the case until I started reading accounts out of Italy about how overwhelmed their health system has become. I can’t even begin to imagine the distress HCPs must be feeling at needing to determine who gets treatment and who doesn’t – in many cases deciding who lives and dies. If the situation in Italy was to happen here, would I be one of those left to die because of my diabetes?

These thoughts are starting to keep me awake at night.

So today, I’m thinking about my mental health and how I can better look after it in light of the way I am starting to feel. The last thing I want is to become completely overwhelmed. I need to keep being rational and calm and sensible – not panicky and unable to think straight.

I’m being very selective about what I am reading. I don’t watch or read tabloid news ever, and I’ve actually blocked accounts on my socials so that I don’t accidentally see their scaremongering on my feeds. The balance between informing and alarming people seems to be a fine line that many don’t seem to understand.

Instead, I’m looking at the sensible and smart advice, where evidence is king, and content is based on fact. Diabetes Australia (disclosure: I work there) has been providing regular updates for Aussies with diabetes, including information from the Department of Health which reassuringly confirmed that there are no shortages or supply issues with insulin, diabetes drugs or NDSS supplies. (If you’re elsewhere, check local diabetes org sites and if there is nothing there, reach out and ask them to get onto it!)

Children with Diabetes, Diatribe and Beyond Type 1 have been doing a stellar job providing smart information and avoided any panic and alarm. I am so grateful that when I see a post from one of them on my feed because they calm, rather than distress. I also love how they are acknowledging that this is tough for those of us with diabetes and that feeling overwhelmed is understandable. I’m holding on to that.

I’m also doing a lot of risk assessment. We’re not in lockdown here in Australia, so I am still going into work for the main part. Perhaps if I didn’t drive in or have my own office once I get there, I’d reconsider working from home for the next couple of weeks, but honestly, being around people is therapeutic sometimes and keeps those dark thoughts at bay.

As ever, trying to find a balance is essential and I think about that whenever I am about to walk out the door. Minimising contact with the outside world is hard and as social isolation is one of the things being recommended, I think about friends and family living alone. Online communities work to reduce isolation, and I hope that people who need to connect with others are able to do so.

These are difficult times and finding a way through will be different for everyone. As much as I don’t understand people stockpiling loo paper (really, I’m confused), I don’t want to blame or judge anyone who is doing whatever they can to try to feel some control over a situation with so much that is unknown.

Living with diabetes means we do have extra things to think about and they can make us feel overcome: this is perfectly normal and okay (as is feeling completely relaxed about everything, by the way!). I seem to be muttering to myself ‘This too shall pass’ a lot. Because it will.

But in the meantime, to my friends and peers with diabetes, be kind and gentle to yourself and each other. That always goes a long way to helping with emotional wellbeing.

Revisited: ‘Just’

March 12, 2020 in Conferences, Diabetes, Language, Loop, Pumps, technology | Leave a comment

Sometimes it feels as though discussions in the diabetes are seasonal. Like clockwork, we see the same conversations happen at the same times. Without missing a beat, almost as soon as a scientific conference is over, someone will comment about how difficult it is for PWD to get to conferences (true, however this year, #dedoc° voices could have assisted a number of the people who were stating that), and then there are discussions about disclosure by PWD who are fortunate to attend, even though pretty much every advocate I know who attends these sorts of things does a stellar job of disclosing.

And of course, the nature of the first big meeting of the year, ATTD, means that there inevitably will be noise about the gap in technology access. And you bet this is a discussion that we need to be having on regular rotation.

After attending my first ATTD, I wrote a piece about the complete and utter dichotomy of being at a conference that was only talking about the latest and greatest in technology while, at the same time, whilst the community was in the midst of its usual Spare a Rose month of fundraising. I struggled to balance the idea that we were talking about automated insulin delivery at the same time as urging donations so people could just get insulin!

Today, I’m revisiting the piece I wrote after last year’s ATTD, where my worlds of diabetes technology and language matters merged, and combined this with the over-representation of those at the super-dooper-tech-y end of the diabetes technology spectrum. (‘Super-dooper-tech-y’ is, obviously, a very technical term.)

I don’t for a moment think that meetings with a strong tech focus should end, or that those who are innovators in technologies should take a seat and let others speak. I don’t believe that at all. I will be forever grateful to the pioneers who continue to push the envelope and make things better for people with diabetes. But I do think that we need to ensure that there is equal attention to those who – by choice or because of their circumstances – are not walking around with an algorithm driving their diabetes.

If we truly believe that all diabetes stories matter, then we need to hear from people doing diabetes in every way possible. Perhaps if we make more of an effort to find and hear those stories, we will stop minimising our experiences, and starr seeing that whatever we are managing to do is truly enough…

DISCLOSURE 1 (for ATTD 2020)

I was an invited speaker at #ATTD2020, and my registration was covered by the conference organising committee. My airfare and part of my accommodation to attend ATTD was covered by Lilly Diabetes so that I could participate in the DOCLab advisory group meeting which took place on Friday, Saturday and Sunday. Other accommodation was covered by DedocLabs (I am an advisor for the #dedoc° voices program) and Novo Nordisk (I am a member of DEEP). I have not been asked to write or speak about any of the activities I attended, or anything I have seen at the conference.

We all do a good job at undermining ourselves at times. We use a four letter word that diminishes what we are doing, and limits the value of our experience and expertise. That four letter word is ‘just’.

In diabetes, we hear it all the time: ‘Oh, I just have type 2 diabetes’ as though it is insignificant and doesn’t have any challenges. ‘I’ve lived with diabetes for just a couple of years’ because we think there is only currency in decades of living with the condition, when really any length of time with diabetes is meaningful.

And we are all about minimising our experience when it comes to the treatment of our diabetes. ‘I just use diet and exercise to manage my type 2 diabetes’ or ‘I’m just on tablets’ or ‘I’m just on injections twice a day’ or ‘I’m just on MDI’. The list goes on and on. And on.

I realised just how ridiculous we have become with this when I heard myself, during a conversation with a fellow Looper, ‘Oh, I just use Loop’. (More on that later…)

At the Ascensia Social Media Summit at ATTD we spoke about this, specifically how there is almost a stigma within the diabetes for those seen to not be using the shiniest and brightest and newest of technologies. It seems that some people almost feel embarrassed if they are not constantly updating their technology toolkit with the most recently launched product.

The idea that anything that we are using today is ‘yesterday’s technology’ is wrong. Blood glucose monitoring can’t be ‘yesterday’s tech’ if it is what most people are using to track their glucose. And syringes and pens can’t be considered the ‘old way to deliver insulin’ when that is how the vast, vast majority of inulin-requiring people with diabetes get insulin into their bodies. Plus, every single one of us using a pump must be able to deliver insulin this way because machines break.

Somewhere in discussions about our treatment technologies, we seem to have forgotten that, actually, not everyone wants to be using the latest kit. And that is okay. There is a spectrum of diabetes technology, and as long as we are on it somewhere and managing our diabetes the way that works best for us, then elephant stamps all around!

There is clearly an over-representation of people at one end of that spectrum dominating on and off line conversations. Spend a couple of hours in a diabetes Facebook group and it would be a reasonable assumption that most people are wearing pumps and CGM. But that’s not true.

And it could appear that DIYAPS is the way to go for most people with T1D, when the fact is that numbers are relatively low. It’s hard to estimate exactly, but there may be somewhere between 2,000 and 3,000 worldwide how have ‘built their own pancreas’. That is just a drop in the type 1 diabetes ocean.

It’s fantastic for those of us interested in this technology to be able to (virtually) congregate and talk amongst ourselves. I learn so much from my peers in these groups – just as I have with all aspects of life with diabetes. The lived experience continues to trump any other way of learning about diabetes.

Of course, that doesn’t mean that we shouldn’t be talking about technology used by limited numbers. Of course we should. We want others to know about it so they can make an informed choice about whether it may be right for them. We want our HCPs to know about it and to support those of us using all sorts of technologies and treatments.

Where it becomes problematic is when there is the misconception that this is the norm. Or when those not using the newest technology feel that they are wilfully doing diabetes the ‘old way’. It’s unfair to think for a moment that those who are not using the tech ‘don’t care’ enough about themselves – especially when decisions are made based on a very good understanding of what is available and what they have decided works best for them.

So, back to my ‘Oh, I just use Loop’ comment. It was directed to someone far more technologically advanced than me; someone who runs all sorts of other programs alongside their DIYAPS. They generate lots of reports and make lots of changes and seem to have far more bells and whistles than I even knew were available.

I nodded as they told me all they were doing and then, when they asked me how I manage my diabetes, I answered that I just use Loop. I heard myself saying it and stopped and corrected myself. ‘I mean…I use Loop. It works for me. Perfectly.’

We don’t need to make excuses for doing diabetes our own way. If we truly have choice (which I know is not always the case), and we have made the choice based on what we believe to be the best possible treatment and technology for us at that moment, then surely that’s a great thing. We shouldn’t ever be made to feel less committed to our own health and wellbeing. That’s not how it works.

DISLCOSURE 2 (for ATTD 2019)

I was invited by Ascensia to co-chair the Diabetes Social Media Summit at ATTD (#ATTDDSMS). I did not receive any payment or in-kind support from them for accepting their invitation. I have co-written a piece for the blog, however this was not edited (apart from inevitable jet-lag-induced typos) and all words are those of mine and the piece’s co-author. You can read that piece here.

Strident women

March 8, 2020 in Awareness, Diabetes | Leave a comment

Happy International Women’s Day!

I usually acknowledge this day with a post about some of the amazing women that we see in the diabetes world. Instead, today I’m going to take a more personal approach and mention some of the women who have so impacted me recently. Some will have been mentioned before – but maybe that’s because they continue to be the women who I look to. (I’ve linked to their Twitter accounts where possible.)

Alicia Jenkins

Cheryl Steele

Deb Greenwood

Emma Wilmot

Nina Mills

Marissa Hitchcock Town

Ann Morris

Ashley Ng

Melanie Stephenson Gray

Emma Stendhal

Rachel Portelli

Helen Murphy

That’s a pretty long list and it barely scratches the surface. But it serves more than the purpose of just signalling some of the women whose paths I’ve crossed in recent times, or whose work has inspired me in some way. It is a list to show just how easy it is to find women who are experts in diabetes in one way or another. It shows how women can just as easily be singled out to stand on a stage, sit on a panel, be interviewed in front of a camera to talk about diabetes.

Because that’s not always happening as equally as we would like.

Last year, at the IDF, the Women and Diabetes stream was led by a man (as it had been at the previous IDF Congress); there is only one woman on the advisory panel for ATTD; gender balance when it comes to speakers at diabetes events is generally not even close to equal; panels are often dominated by men.

All the women I have mentioned have, in some way, been trailblazers. I know many of them quite well, and I have seen and heard the challenges they face, the looks given around them when they speak and write, and the words that are used to describe them when their challenges hit a nerve. There is no one way that we choose to do our advocacy or our work. But our personality – how loud or quietly we do it – shouldn’t be a measure of anything.

Recently, a couple of people have referred to me as ‘strident’. My views and opinions have also been described that way. For the record, I didn’t ask for an assessment of my personality or my opinions; these were offered up to me (by men) who thought that my confidence and directness – and stridency – was part of the reason that I’ve been having a slightly tough time in some parts of the diabetes world lately.

Strident is a word that mostly seems to be directed towards women who will not go quietly, who stand up and challenge the status quo, who are seen to rock the boat, who want to be heard, who have opinions and are not afraid to share them. Sometimes, our anger and frustration comes to the fore and that is seen as us being unable to control our emotions. We’re not always called out overtly; sometimes instead there is reference to the preference for ‘moderate voices’. Moderate voices and opinions are okay. Strident ones? Not so much.

But you know what? I’m owning it. In much the same way that I have embraced the term ‘deliberately non-compliant’, I am now taking on board the term strident. You bet I’m a strident woman and I am proud to say that. And I’m proud to stand alongside dynamic, passionate, smart, controversial, sassy women who will not, and do not go quietly. Strident women – I know them and I am one of them. I am in outstanding company.

Previous IWD posts

IWD Interweb Jumble (2019)

The Women (2018)

Hear Me Roar (2017)

The F Word (2016)

Revisited: Call me Blossom

March 6, 2020 in Diabetes, Language | Leave a comment

My head is firmly in the language space at the moment, thanks to a big piece of work I’m involved in. So, I’m sharing this post from last year. I remember being frustrated during a session at ATTD last year where a roomful of diabetes advocates were acknowledging how stigmatising and damaging language could be – and equally, how positive and positively powerful it could be, too. My frustration was because despite some pretty insightful tweets going out from people at the event I was in, the online discussion pivoted it all to being about the diabetic/people with diabetes debate (despite this NOT even being discussed in the session), and then how some people with diabetes don’t even care about the words used.

So, twelve months on from first publishing this post, some people do occasionally call me Blossom. I’m okay with that. It’s my decision. And as a person with diabetes I get to decide how I talk about diabetes, just as every other person with diabetes can. I’m pretty sure that’s been my personal opinion about diabetes language matters for more than decade now: it’s our diabetes. We get to talk about it however we want.

These days, it’s impossible to be at a diabetes conference and not have at least one conversation somewhere about language. Sometimes there are sessions dedicated to the topic on the program, but that wasn’t the case at ATTD a couple of weeks ago – a conference solely devoted to advancements in diabetes technology and treatments.

But despite there not being a session about language, it was still a hot topic. My eagle eye was trained when walking through the exhibition centre for examples where diabetes is misrepresented or the language used stigmatises people living with the condition. And in sessions, I immediately heard terms that suggested that we are misbehaving because the results of treatments aren’t living up to their promise. (A new one: I heard the statement ‘People with diabetes on <therapy> were not performing as expected’ which now makes me think that we are being trained, watched and judged by pageant mums/moms.)

At the Ascensia Diabetes Social Media Summit (more on that another day), there was a discussion about language and diabetes-related complications. This event was a follow on from the one we had at the Australia Diabetes Social Media Summit, and took the initial conversations and expanded it with a new group of PWDs.

Once again, as the discussion unfolded, it was clear to see that the PWD in the room all had experiences where the language they were faced with had impacted negatively and positively. One person commented that early on in their diagnosis, a health professional had addressed diabetes-related complications by saying ‘If you are diagnosed with a diabetes-related complication it will not have been your fault.’ What an empowering way to begin the discussion about complications, care and risk reduction!

I’ve been talking about language for a number of years. Some may call me a one trick pony and, honestly, that’s fine. My appetite for the subject matter has not diminished one bit despite more than a decade of speaking and writing about why language is so important and holds such power.

Language is not a one dimensional issue. Additionally it does not necessarily have a ‘right way’ to do it – especially when looking at it from the perspective of the person living with diabetes. The work I have been involved in has never been about policing the words used by people with diabetes, but rather how words used by others affect us.

It’s why the piece Grumps and I wrote for BMJ was important – it targeted healthcare professionals, explaining to them why the words and language used around diabetes-related complications needs to not make us feel hopeless. Because that is what can happen and when we feel that way, it is all too easy for diabetes to seem just too big and too hard and too much.

I have frequently written about how diabetes can become so overwhelming, that it can leave us unable to attend to even the most basic and mundane of diabetes management tasks. I myself have been paralysed by the detail and demands of this health condition. I understand that there are times when a conversation about language is not possible, because, quite frankly, there is a lot more to deal with. I know that there have been moments when even though I can hear judgement and blame in the words being directed at me, all I want to do is find a way out of what feels like a hole. I’ve heard others say that they have felt harshly treated by HCPs, but simply didn’t have the capacity to try to deal with that because there were other things higher up on the list.

And I am sure that there are people who simply wouldn’t even know where to begin if the words and language being directed at them were disempowering and negative.

But that is exactly why language matters. It is for the people in those situations – for me when I was in that situation – that we need to get the way we communicate about diabetes right.

I am so sick of people trying to delegitimise the language discussion, or, even worse, reduce it to something that is insignificant. It frustrates me when the discussion returns again and again and again to the diabetic/PWD debate. As I said at the Ascenisa event at ATTD when we were discussing the annoying way some try to redirect meaningful discussion back to this single issue: ‘You can call me Blossom for all I care, language is about far more than this.’

And I think that while it is critical that we acknowledge that sometimes the language issue isn’t going to be a priority for some (by choice or otherwise), it seems unfair – and a little counter-intuitive – to diminish its importance, or criticise those of us trying to keep it on the agenda and actually do something about it.

(Click for original tweet)

DISLCOSURE

I attended the 2019 ATTD conference in Berlin. My airfare and part of my accommodation was covered by DOCLab (I attended an advisory group meeting for DOCLab), and other nights’ accommodation was covered by Roche Global (I attended the Roche Blogger MeetUp). While my travel and accommodation costs have been covered, my words remain all my own and I have not been asked by DOCLab or Roche Global to write about my attendance at their events or any other aspect of the conference.