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

DISCLOSURES

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I would love to know what others think….


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Last Thursday morning, still wracked (and wrecked) with jet lag from having just returned from ten days in Europe, I boarded a flight to Manila. I would be co-facilitating a workshop for people with diabetes from across the Philippines about how advocacy, community and engagement. If I’m completely honest, I had no idea what was in store for me.

I knew that the PWD who would be attending had all been through a diabetes camps program in the Philippines. They were all young and very eager to step up as advocates. They were the reason the workshop was happening – they realised it was time to elevate the PWD voice in advocacy efforts in their country and they wanted some help in doing just that.

And so, the idea of a workshop was conceived, and the two facilitators were flown in from opposite sides of the planet to pull it all together. Enter me and the Grumpy Pumper (who for once had to travel further than me and was more jet lagged than me).

As the facilitators, we were there to talk about some examples of effective grass roots advocacy, talk about how engagement with other stakeholders is important, and highlight just why the voice of those living with diabetes is critical when it comes to lobbying. We had an vague outline of just how we thought the workshop would run, but we really wanted to ensure that the attendees could shape it the way they wanted, asking relevant questions and walking away with information that would help them.

Once the workshop started, it was very, very quickly apparent that we already had a thriving, dynamic and enthusiastic community in the room. They just weren’t seeing themselves that way. Over the course of the workshop, we saw the ten PWD realise that their own stories and voices are important and have real currency, and they are an unstoppable force when they came together. If ever I needed a reminder of the power of community, I’d have found it there in that room in Manila!

There will be a lot more about the weekend workshop in coming days. I’m still getting my head around it all and am not really sure what to write just yet. It may take me some time. What I do know is that the DOC now has some new voices. Their perspectives will be different to those we often hear about, and that diversity is always good in a community.

So, while I’m getting my words together, get to know these amazing young advocates. They’re on Facebook here; Twitter here; and Instagram here.

 

DISCLOSURES

Novo Nordisk covered costs for the advocacy workshop. Grumps and I were invited to facilitate the workshop as part of our involvement in the Novo Nordisk DEEP Program. Novo covered by flights, accommodation and ground transfers.

Language matters. I feel I’ve said it so many times, and yet I still have people asking me why it is so important. So, I’m revisiting this post from just over twelve months ago which explains just how the words we use to talk about diabetes has an incredible flow on effect. Read on…


I had a great conversation the other day with someone who was interested to talk about diabetes and language with me. ‘I’m trying to get a better grasp of why it’s something so important to you, because, quite frankly, I couldn’t care less what people say about diabetes.’ 

This isn’t the first time people have asked me this. And it’s certainly not the first time I’ve been asked why I spend so much time speaking about diabetes language matters.

I know the reasons, but to be perfectly honest, I’m not sure that I have them especially well mapped out when I need to explain them. So, let me try here.

There is a tangled and complicated link between the words used when talking about diabetes, and how we feel about it and how diabetes is perceived by others. That link then goes off on all sorts of LA-freeway-like tangents to include diabetes and stigma, and discrimination.

The effects of how we frame diabetes can be felt by us individually. But they can also be far reaching and affect how others feel about diabetes.

We know that language has the potential to make people with diabetes feel judged and stigmatised. In fact, most PWD I know have at some time or another faced someone speaking to them using Judgey McJudgeface words. Of course, we all respond differently to this. For some people, it’s water off a duck’s back. They couldn’t care less what people say and just ignore it. For others, it’s almost a challenge – they use it as motivation to prove that they ‘won’t be beaten’.

But that’s not the case for everyone. For some people, it can be absolutely paralysing.

Fear of being judged and shamed may lead to some PWD to not wanting to attend HCP appointments and, as a consequence, falling behind on complication screening. Some PWD may not even tell their loved ones they have diabetes for fear of being judged. I have met PWD who made the decision to keep their diabetes a secret and for years, not telling another person. This can add to feelings of terrible isolation.

When diabetes is spoken about in stigmatising and demeaning ways, this leads to the spreading of misinformation. And this can have far reaching consequences.

We know that kids with diabetes may be teased by their schoolmates. Their teachers may not respond appropriately to diabetes because of the way diabetes is framed in the media or by others. We can’t really blame teachers. If diabetes is punchline fodder for every B-grade comedian, or an excuse to point fingers at those living with it by every tabloid news outlet, how can we expect anyone to take it seriously?

(And if right now you are thinking ‘This is why we need to change the name of type 1 diabetes’, stop it! People with type 1 diabetes shouldn’t be teased or mocked or judged, but neither should people with type 2 diabetes. This isn’t about people understanding the differences between type 1 and type 2 – this about understanding diabetes.)

The language we use when talking about prevention in diabetes – whether it be preventing type 2 diabetes or preventing diabetes-related complications – means that there is an underlying idea that developing type 2, or complications must be the fault of the individual. ‘If you can prevent it and haven’t, it’s your fault. You obviously lived an unhealthy lifestyle/are lazy/didn’t listen to your doctor/failed to follow instructions/refused to do what you were told etc.’.Can you imagine hearing that, or feeling that is what people think about you – all the time? This is the language – these are the words – used to talk about diabetes.

A couple of weeks ago in the UK, it was Prevent Diabetes Week. I saw countless tweets from people urging, begging, pleading with others to remember that type 1 diabetes can’t be prevented and the week refers only to type 2 diabetes. I wonder if those tweeting realised that comments such as these actually contribute to the stigma associated with type 2 diabetes? Of course type 1 diabetes can’t be prevented. But in many cases, neither can type 2 diabetes. There are so many non-modifiable factors associated with a type 2 diagnosis – factors beyond the control of the individual.

But let’s look beyond individuals, the health system and the education system for a moment. What else happens in other settings when diabetes is spoken about in stigmatising ways?

Health organisations, including diabetes organisations, frequently seek donations from the public to continue the important work they do. There is only so much money in the donation pie, and yet there are more and more competing organisations representing people with different health conditions wanting a piece of that pie.

Donations are harder to come by from the general community when there is the idea – the wrong idea – that diabetes is a largely preventable lifestyle condition that is the fault of those diagnosed. There is not the idea that people who have developed cancer brought it on themselves, even though we know that some of the risk factors associated with a breast cancer diagnosis are the same as for type 2 diabetes.

Research dollars for diabetes are far less than for other health conditions. We see that every year when successful NHMRC grants are announced. Diabetes is the poor cousin to cancer research and CVD research.

Diabetes is just as serious as any other condition that is worthy of research dollars and fundraising dollars. Yet because of the way we speak about it and the way diabetes as a condition has been framed, there is a perception that perhaps it isn’t.

Words matter. Language matters.

So, what I want to say to people who think that talking about language and words is a first world problem that only occupies the minds of the privileged is this: I acknowledge my privilege. But this isn’t simply about words. It’s about perception.

Until diabetes is considered the same way as other conditions that are taken seriously and thought of as blameless, the trickle-down effect is people with diabetes will continue to feel stigma. Diabetes will continue to be the poor cousin of other health conditions and diseases because there is the misconception it is not as serious. People will not as readily make donations towards fundraising initiatives. Research dollars will continue to fall short, instead going towards ‘more worthy’ conditions.

That’s why I care so much about diabetes language. Because, language matters… so much.

I regularly say that I wish I had an assistant to take care of all the diabetes admin. I’d like to be able to hand over all the scheduling, paperwork and the general keeping track if it all that takes time, brain power and forces us to find room that those not living with diabetes can dedicate to making sure they remember if there is milk in the fridge or when the new season of The Good Place starts.

It would be a thankless job, and I doubt that anyone would be interested in doing it, but I can dream.

A couple of weeks ago, Diabetes Australia officially launched KeepSight, the first ever national eye screening program for people living with diabetes. It’s actually a super easy concept: PWD register to be part of KeepSight and then receive reminders when it is time to have an eye check. No more needing to remember the last time you had a check-up.

This is similar to the cervical screen program that has been around for a number of years now. I have relied on reminders from that program to alert me when it is time to make an appointment for a screening check. KeepSight will help us keep track of our eye checks.

I could give stats about the number of people who are missing out on regular eye checks, and even more stats about rates of diabetes-related eye complications. But I won’t. Because that is not what is getting me excited about this program.

I’m excited because this is one of those simple ideas that goes towards making our lives with diabetes easier. And, quite frankly, there’s not enough of that happening!

Click on the link below; it takes literally two minutes to register.

Now, if we could just find a way for insulin scripts to never run out, diabetes supplies to be endlessly replenished when running low and all our other appointments sorted, we’d be halfway to making this condition just a tiny but easier to manage.

Disclosure

I work for Diabetes Australia, but I am not writing about this because I have been asked to. I am doing it because I genuinely think this is a program that goes towards helping those of us living with diabetes and I will always share anything that does that.

But you do need to be aware of who pays my salary each week and consider my bias when I share things by my employer. You have a right to know that, which is why I will always make sure that it’s clear – each and every time I write about anything in which I am involved. Transparency is important.

This post marks one thousand posts here on Diabetogenic*. That’s a lot of senseless rambling, ragey-moments, times celebrating and despairing about diabetes, and links to brilliant ideas and post… or to things that have either amused, frustrated, delighted or annoyed me.

A thousand posts in and diabetes is still a constant in my life (damn it). And I remain not good at diabetes…and I have many of those thousand posts to prove it.

There are clearly some recurring themes that I write about. I say that I am a one trick pony, but perhaps that’s not completely true. I seem to have a few tricks up my sleeve, really. And now I’m confused, because ponies don’t usually have sleeves and my metaphors are very, very mixed.

Here are the things that seem to have taken up a lot of writing time and words over these thousand posts…


Peer support

Most of the time, I am pretty positive about living with diabetes. Let me be clear: that doesn’t mean I love it, or even like it. But I feel that generally, I know where it belongs in my life and it seems to fit in that place as well and happily (begrudgingly) as it can.

I know that one of the reasons that I feel this way is people in the diabetes world I am lucky enough to call friends and peers. Online friends, in real life friends and those who cross both boundaries are a critical part of my living-well-with-diabetes strategy. Knowing that there are only a very few places around the world where I couldn’t find someone from this community to have a coffee/tea/prosecco/mojito with gives me an incredible sense of comfort. (And reassurance in case of diabetes emergency…)

I say that my peers with diabetes help me make sense of my own diabetes and that’s true. Knowing people who understand innately what it is like to share a body with diabetes means that I never feel alone. Diabetes is so isolating at times – even for those of us surrounded by great people who support and encourage us. As much as I need those people and am grateful for them, it is others living with diabetes that help me realise that I am never, ever alone in dealing with the ‘diabetes things’.

The diabetes online community is made up of lots of people and not all have diabetes. We each bring our own experience and perspective to it. I’ve learnt so much from those living arounddiabetes and how they incorporate it into life, because it comes with its own set of challenges and victories. That is why the community is so valuable – its diversity and range of experiences and perspectives.

I regularly talk about the value of community and diabetes peers and finding our tribe. It can take time to settle into just who and what that looks like, and it changes because there are always new people around. But it is so worth it. My tribe? I love them so hard.

Nothing about us without us

I am not the tattooing type but if I was, I think that I would have this phrase inked on my body somewhere (or maybe I’d be really pretentious, and have it written in Latin: Nihil de nobis sine nobis, according to Google translate.) It remains a frustration of mine that this isn’t the starting point for pretty much anything and everything to do with diabetes care. The fact that we still need to fight for a seat at the table – or a ticket to a diabetes conference – is, quite simply, not good enough. Having others speak for us, on our behalf thinking they know what we need, is offensive.  It should never be the case that non-PWD voices speak for us or over us. Ever. Our stories are powerful, but they are ours and we should have the platform to tell them in our own way; in our own voice.  Tokenism is rife and sometimes, that frustrates me even more than when we are completely excluded. The delusion of inclusion is, I think, worse.  Whilst there may have been some strides made to true co-design and inclusion, we have not come far enough and until we get this write, I’ll have a lot of content fodder for this blog.

Food

I like food. I write about it a lot. And I want to be Nigella. That’s really all I have to say about it right now…

Waffles in Brussels. Both were excellent.

More than numbers

Apparently, stating the obvious is still necessary in diabetes. We are more than numbers; our A1c does not define us; our worth is not wrapped up in our glucose levels. We have been saying these things for years…decades…and yet there are still times that this is what we are reduced to.

New treatments, devices, drugs, education programs are measured in reduction of A1c. Perhaps this is because it can be measured, but talk about only getting part of the story. I can’t help but think that if PWD were part of establishing research protocols, there may be far more than numbers to assess the success of a treatment or therapy. (See also: nothing about us without us…)

Women’s health

In recent years I’ve written about the issues specific to women, health, sex and diabetes a number of times because there is so little out there about it. And it seems it resonated with a number of women who wrote to tell me (and the HCP who saw me in the fresh produce section at my local Woolies and yelled how she loved my idea of giving lube in diabetes event bags).

Anyway…talking about the stuff that may not be the easiest is important. It’s the only way we get remove stigma and encourage people to share their stories. Which helps others. That’s why I have openly written and spoken about miscarriages and infertility. And eating disorders. (I know – not an exclusively women’s health issue.) There is nothing shameful or embarrassing about these topics. Other than we don’t speak about them enough.

Learning from and supporting others

The Interweb Jumbles I write are my favourite (and cheat’s) way of pulling together all the things I’ve seen that have interested me and leaving them in future place for (my) future reference. Plus, I love sharing what others in the diabetes community and world are doing.

I have always benefited from the generosity of others in this community who have shared my work and I pay that back whenever and wherever I can. Supporting each other is critical.

There’s so much going on in the diabetes world all the time and I highlight the things that resonate because I think that if they mean something to me, they may mean something to someone else, too.

Science. Science. Science

From pseudo-science rubbish, to ridiculous made-up diabetes cures to anti-vax delusions. How much writing material have they provided!

I live in hope that one day – and may that day be soon – we won’t still have to read about these charlatans trying to convince us that all that ails us can be cured with fairy dust and positive thought, or that vaccines are evil and cause diabetes, or that ‘wellness warriors’ are the true experts and professionals when it comes to diabetes.

While a lot of what I write is spent mocking these fools, there is an underlying seriousness to it all. Who can forget little Aiden Fenton who died after his parents stopped giving him insulin, instead leaving him to be treated by a ‘slap therapist’?

Anyone who is sprouting any treatment that is not based in science when it comes to diabetes or perpetuating anti-vax rubbish is as barbaric as the man who was charged with Aiden’s death.

The whole person

Diabetes happens because of something not working properly with our pancreas. But it affects every single part of us – something that astoundingly still seems to surprise some people.

Considering our mental health and emotional wellbeing is critical when assessing just how diabetes impacts on our every day. For some, diabetes seeps into every single part of us and for others, we keep it at bay and manage around us. For most of us, there is an ebb and flow of just how that works.

And while we’re talking about the whole person, diabetes-related complications may be specific to a particular body part, but those body parts remain connected to the rest of us.

For so long, we get metaphorically chopped up with as only bits of us get attention and focus. But nothing in diabetes is ever in isolation. That’s just not how it works.

And finally, language

The trick this (however-many-trick) pony is most known for is #LangaugeMatters and you know what, I’m happy to wear that. I really am. If I was to stop this blog today (thought about it…1,000 has a nice rounding off feel to it), and never spoke about diabetes ever again (oh, if only), I would not be disappointed if this was what people thought of when they thought of me and this blog.

Language matters. It does and I refuse to, for a moment, believe that it doesn’t. I am certainly not the only person playing in this space and I am so grateful to have a tribe of language matters peers and colleagues can rise above the small details to understand just why this issue does really matter.

___________

Thanks to everyone who has read one or more of these thousand posts. Thanks especially to the people who keep coming back. I can’t promise that there are going to be a thousand more posts. And I can’t promise that I will learn any new tricks other than the ones that I seem to have on repeat at times. These issues remain important to me and perhaps to you too.

* At EASD, my mate Bastian Hauck gave me a head’s up that I was getting close to publishing the 1,000 post on this blog. I’d not have had a clue otherwise. Thanks, Bastian!

I am blunt and I am direct. I am often criticised for my lack of finesse and accused of having the subtlety of a sledgehammer. Guilty, guilty, guilty as charged.

But I have always believed that the best way to address any issue is to get it out in the open, talk about it and normalise it so people feel comfortable discussing it.

New Yorker Cartoons.(Click for image details.)

This has resulted in some uncomfortable times. There was the time I spoke at a healthcare professional event about some research we’d conducted on diabetes-related eating disorders, and the subsequent information resource we’d developed about the issue which provided information for people could seek help. A dietitian stood up during the question time and told me in no uncertain terms that this work was irresponsible and that we had just written an instruction manual showing people with diabetes how to develop an eating disorder. I reminded her of the research I’d just presented which showed that over 60% of the women in the survey had explicitly stated that they had omitted, altered, or restricted insulin for the purpose of weight loss and suggested that no one needed an instruction manual – we already knew how to do it. I also pointed out that over 80% of the women had never had a conversation about it with a HCP, so perhaps it WAS time we started talking about it so people knew how and where to get help.

Then there was the time at ADATS when I introduced the concept of DIYAPS to pretty much everyone in the room, terrifying them all. That was fun. As was the bit where a couple of endos suggested that I needed to be ‘reined in’.

After writing a booklet on diabetes and pregnancy. After being awarded a grant to publish it as a national resource, we sent the booklet out to all women with type 1 diabetes aged 16 – 40 years. The response we received from a bucket load of parents was that they did not want this issue raised with their daughters and how dare us for sending them information suggesting they have sex and get pregnant. (For the record – the booklet did neither of those things. It did, however, reassure young women with diabetes that a healthy pregnancy was possible, and that pre-planning said pregnancy was the best way for that to happen.)

When I was at Diabetes Vic, my team developed two resources about diabetes and sexual health and contraception (one for young women and one for young men). We knew that this information was desperately needed, and that young people wanted to know about how to be safe having sex, but there were concerns that the response from some quarters would be that we were promoting promiscuity. (Surely that word should only be accompanied by someone who has teleported here from the 1930s.)

And, of course, the pieces I’ve written on sex and diabetes have elicited a huge discussion about how they had never before even seen anything about diabetes, women and sexual health – and, it turns out, it was the first time many women had even seen the topic raised.

There is so much more: I write about pregnancy loss, because as hard as it was to live through it, it was harder to feel alone. I write about the emotional toll of diabetes because too often all we hear about is the impact of numbers. I write about burnout because it is a reality for me – and so many others.

These taboo topics are elephants in diabetes rooms around the world and it’s time we did more than just acknowledge them – we need to change that.

Disordered eating behaviours, concerns and problems with sex and sexual health, diabetes-related complications, mental health conditions are facts of life. People experience them. There is nothing shameful about any of them.

NOT talking about them makes them seem shameful.

How do we get to a point where those topics that have been so difficult to broach previously become as everyday as a conversation about a broken arm in a cast; that when we need to discuss something about our sexual heath or mental health with a health professional we are as comfortable as talking about an earache?

I’d quite like this SHAG elephant in a room!

 

Today I’m talking about cervical screening checks. Because yesterday, I had mine. (Oh, did I mention that I’m an over-sharer?)

Let’s be honest. No woman ever gets excited about having a cervical screen. At least, no woman I’ve ever met. Maybe if they handed out lollypops at the end, (or something more applicable for the area being screened?), we might get more excited, but as things go, rocking up for our scheduled cervical cancer screening is not really one of those things we anticipate with glee. (Or maybe you do. And if so – good for you!)

My OB/GYN – who is now purely my GYN because the OB part of me has shut up shop for good – called me (well, his receptionist did) while I was in Berlin. The call came at some ridiculous hour of the night, so I ignored it, rolled over and went back to sleep, making a note to return the call when I got back to Australia.

I knew that was I was well overdue for a check-up – I’d been thinking I needed to make an appointment and was also a little confused about the new screening procedure and process. It’s changed since my last screening. I knew that pap smears were a thing of the past and that a new cervical screening check had replaced it.

But I didn’t really understand about the change to timeframes or just what the new check was all about. So, I made, and prepared myself for, the appointment.

I’ve known my gynaecologist for a long time now – about seventeen years. He knows diabetes and pregnancy which was why I started seeing him. He was the one who I went to for all my pre-conception care and then he was my OB each time I was pregnant. He has seen me at my absolutely lowest as I dealt with the heartbreak and trauma of recurrent miscarriages. But he also was the one who handed me our daughter the day she was born, so he has seen me at my most elated, too.

This time, I walked in with absolutely no intention of talking about babies, other than mentioning that mine is now fourteen which obviously makes no sense because surely I am still only 36 and I had her when I was three days shy of 31. (This is a lie. No one believes it.) I was there to talk about how hopeless I was because I’d completely neglected thinking about needing a cervical screening check. And have the said check.

There is a reason that I continue to go back to the same doctors for seventeen years. It’s because they don’t judge, and they treat me as though I have a life outside the body part in which they specialise. (Which is good when seeing this particular doctor, because I am more than my vagina.) Before getting to the reason I was there, he asked me how I was and what I was up to. We spoke about the work I was doing. He asked specific questions about my health and asked me how I found the Dexcom that was clearly visible on my upper arm. We started to talk about DIYAPS, and how that was working for me. He wanted to know about my family and how they were, and what sort of a kid the tiny baby he delivered on that day back in November 1998 had become. (She reads a lot more now. And has more sassy opinions.)

Then I mentioned that I had been a little remiss in organising my cervical screening check and started to say how I was usually a lot better at this and that I always, always make sure my diabetes screening was up to date and that I NEVER miss an appointment with my ophthalmologist, but that this one had slipped through the cracks. He didn’t shake his head and tell me to be better. Instead he said, ’It’s great you’re here today. Life is busy and there is a lot going on.’ It may not be healthy to love your gynaecologist, but after that comment I remembered why I had always been so fond of him.

He then explained how the new screening worked, and why the changes were made. He spoke about what was involved today and how long it would take for me to get the results. ‘We call you whatever the result,’ he said and I realised that was a really useful piece of information. If I had a missed call from his rooms in seven to ten days’ time, not knowing that calling everyone was routine, I would have worried that something was wrong until I’d been able to speak to someone.

He started by taking my blood pressure. ‘Is your blood pressure usually okay when you have it checked?’ he asked. ‘Yep. Always fine. Why? Is it high?’ My heart rate was slightly elevated, and I was anxious. (See point above about no one wanting to have this particular screening check.) ‘A little,’ he said. ‘But I know that you’d be anxious about this. It’s nothing to worry about if you have recently had your BP done and it was okay.’ 

I have always appreciated how this doctor, when asking questions, explains why he is asking them. ‘Any changes to your period, bleeding in the middle of your cycle, or bleeding during or after sex?’ He asked, going through what each of these things could mean.

The rest of the examination took all of about 5 minutes. He explained everything that was going on, and I distracted myself during the bit where I had a piece of cold metal inside me by asking about the HPV vaccination.

I’m not sure if that was necessarily the best time to have a conversation about why it’s important to have this vaccine (there’s more about it here, including who the vaccine is for and when they should have it). He told me it protects against the types of HPV that cause around 70% of cervical cancer, as well as other cancers (vaginal, vulval, anal, throat and penile), and protects against genital warts.

We then both had a lot to say about our frustrations with anti-vax lunatics and their anti-science idiocy, and why Pete Evans should be sent to an island (one other than Australia) and left to his paleo devices where he can’t harm anyone else. (Thankfully the cold metal instrument has been removed, and I was covered up by a sheet again by this stage. We were both getting a little ranty and I was waving my hands around; being completely exposed could have made that awkward…)

When I was dressed and sitting opposite him again, he asked if I had any questions. I had a few, and he answered them clearly. I mentioned again that I would make sure that I had future checks as scheduled and he suggested I be less hard on myself.

He’s right, of course. Diabetes alone puts so much pressure on us – as well as all the screening we need to keep on  top of there is the daily stuff too. (I love that he understands diabetes and realises just what it takes to deal with it.) Add to it the other things we need to stay on top of – such as screening of our lady bits – and it’s no wonder that sometimes something will slip through to the keeper.

And of course, there are a number of other reasons that we delay or postpone having this particular check done. For some women, there can concern or embarrassment. Even if we know that the actual procedure takes only minutes, it’s not especially comfortable. And then there are concerns about the state of our lady garden. According to a 2018 survey by a British cancer charity, a third of women won’t make an appointment for a cervical screening if they haven’t waxed or shaved their pubic area, and are embarrassed about how their vulva looks. I could scoff and say how ridiculously shallow, but you bet that I have had that concern too.

I know that this, as with all screenings, is important because early detection of any changes means early treatment and that is always the best approach. And so, I’m trying to stop beating myself up for the fact that I was overdue getting this done and instead pat myself on the back for actually having made and kept the appointment. I’ve done my bit. I now wait for the results and then take it from there.

More information about cervical cancer screening here.

Click for source of image.

Have you ever heard of an ‘Everesting Challenge’? No? Neither had I until recently. It involves a cyclist climbing a single hill the number of times that’s required to reach a total ascent of 8498 metre to equal Mt Everest. Oh – it gets better. It has to be done in a single ride. It’s known as one of the toughest cycling challenges in the world and I’m exhausted just writing about it. Now I know what it is, I can confidently say that I will never be completing this challenge.

But Neil McLagan is, and he is doing it for a really good cause. He will be raising funds for Insulin for Life (IFL) Global. I’ve written about IFL Global before, and have done some (volunteer) work before, promoting what they do.

As a refresher, IFL Global is a not for profit organisation, raising awareness of the lack of insulin and diabetes supplies in developing countries. The organisation collects and transports insulin and supplies and then distributes them to clinics and health professionals in these countries, as well as offers a complications screening program in places where this simply does not happen.

IFL Global’s mission is that no one should die because they can’t afford or access insulin. Their efforts save lives and help those with diabetes survive and thrive in their communities.

Obviously this is something that I will support – not by starting to do extreme cycling, but by promoting those doing it. And that brings me back to Neil McLagan.

Neil will be undertaking his ‘Everesting Challenge’ by climbing Admiral Road in Bedfordale, Western Australia more than eighty times. Apparently, that is going to take him more than eighteen hours. It’s not the first time that Neil has undertaken this sort of challenge. Last year he rode solo and unsupported from Sydney to Perth raising funds for another diabetes cause. Over twenty days, he spent a total of almost 180 hours on his bike, riding a total of 4011kms (almost 2,500 miles). He says that his ‘Everesting Challenge’ will be one of the most physically and mentally difficult single day challenges. He’s not kidding!

Oh – did I mention that Neil has type 1 diabetes?

He is hoping to raise AUD$20,000, along with a lot of awareness about Insulin for Life Global. Without the work they do, a type 1 diagnosis for many people in the counties where they have a presence would almost certainly mean a drastically shortened life.

This is where you can help.

Look – if you’re inclined to get on a bike and ride it for the equivalent of climbing Mt Everest while fundraising for IFL Global, all the power to you. Please let me know and I promise to throw more than just a couple of bucks your way.

But if you’re like me and would prefer to sit in a café reading about people like Neil, you can still help.

You can make a donation by clicking here. Every donation counts – don’t ever think that $5 won’t make a difference.

And you can follow Neil’s story by liking his Facebook page here and following his adventures, and sharing it with your friends.

Please do consider making a donation to Neil’s efforts. Insulin for Life Global is truly a very important cause and is making a massive difference to the lives if people with diabetes.

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