Nothing to see at diabetogenic today. All the action is over at the Spare A Rose donation page. Watch the diabetes community go, supporting this simple, yet important, campaign. For as little as AUD$7, you can provide a month of insulin   to a child with diabetes in an under-resourced country. I challenge you to tell me of a better way to show your love.

Please do what you can – every single donation helps. Just click to donate and #SpareARose.

What would you change about your diabetes diagnosis?

Mine was almost 22 years ago, but much is still fresh in my mind. While there is a lot I am eternally grateful for, such as the speed and accuracy of diagnosis, and the way I was easily able to access specialist care, there are things that I wish were different.

One of those things is the line-up of HCPs that was offered to me. Making sure I knew the basics of daily diabetes management, the importance of knowing how many carbs I was eating, and the impact of activity, were, of course, critically important to learn before I was sent on my way. But diabetes was presented to me with this very one-dimensional approach. It was all about the magic carb/insulin/activity equation. Get that right and all would be relatively simple.

I had the relevant HCPs that could help me get that equation right – the endocrinologist, the diabetes educator and the dietitian. This was the holy trinity of diabetes care, I was told. This was the team that had diabetes knowledge to share.

And perhaps, if I’d been able to keep diabetes all about numbers, that trio would have been enough. Alas, it didn’t take long for this new-to-me medical condition to move to my head. No one mentioned the anxiety and fear that started to accompany the distress that was due to not being able to meet any of the targets I’d been set, and feeling overwhelmed by just how much diabetes there was to do. Or the disordered eating that may creep into my thinking because of this sudden focus on food in a different way. Or the crippling fear of complications that was keeping me awake at night.

I wish a version of these words had been said to me: ‘Diabetes is not easy. You can do this, but it is not easy. But we are here to help you. And endocrinologist and educator can help you with the practical side of diabetes. Food questions can go through your dietitian. We have an arsenal of allied health professionals to think about when it comes to doing all we can to reduce the risk of diabetes-related complications. And if you ever feel that you are becoming overwhelmed or anxious or distressed, if you ever want someone to talk with someone about how you are feeling to work through what’s going on outside the clinical aspects of diabetes, we have someone here for that too. It is perfectly, perfectly normal for you to feel all of those things. It is also perfectly normal for you to not feel them! We can help with whatever you need.’

Planting that seed would have made those first few years – those years before I found an endocrinologist who did say those words to me – so very, very different. I may not have understood why I might need, or rather want, to see a psychologist straight away – I didn’t understand what diabetes was, let alone how it was going to impact on my emotional wellbeing – but I wish that I had known from the very beginning that I had easy access to a one if and when I needed it. And that it was perfectly understandable if I did.

While I believe that GPs, endocrinologists and educators all have a role to play in talking about emotional wellbeing, they are not experts in this area. Having our diabetes HCPs acknowledge the high mental burden diabetes places on us is reassuring, but they may not be equipped with the strategies to help us lighten that load. But a psychologist can – especially one that works with people living with diabetes or other chronic health conditions. Plus, I repeatedly see HCPs say that they don’t have time as it is to ask about mental wellbeing, because there is already so much to do in the allotted appointment time.

Here’s the thing: so, so many people with diabetes are not reaching targets. Now, while I don’t agree with measuring diabetes success on numbers, that is still the way that it is done in many settings. And with that in mind, so many of us are above recommended glucose levels and our A1cs don’t even closely resemble what guidelines tell us to aim for. Clearly what we are doing now isn’t working, in fact, I’ll be so bold as to suggest that the current standard HCP line up is not necessarily best for PWD. Would adding a psychologist to the mix help? Would the expertise a psychologist can offer to help us learn how to address behaviour change, distress, anxiety result in not only feeling better about diabetes overall, but also improve those other measures?

I am not for a second suggesting that everyone with diabetes should have to see a psychologist. I don’t think that PWD should have to see any HCP they don’t believe is helping. But I do believe that we should be able to access a psychologist as easily and readily as we can any other diabetes HCP. Psychologists should be integral in multidisciplinary teams in diabetes clinics in the same way that educators, dietitians and endocrinologists are.

In my experience, it wasn’t until I started working with a psychologist that I got any benefit from seeing the rest of the diabetes team. Go check out the hashtag #DiabetesPsychologyMatters for some more commentary on this from PWD, psychologists and clinicians. It’s already gaining momentum, but I think it’s time that it really took off…

Tuesday last week, I woke up to find this message in my Twitter DMs. I read it and read it again. It accompanied a tweet or two to me about my blog post from the previous day.

I debated about whether or not I should share this publicly. I wrote some words, walked away, came back to them, walked away, asked a few friends their thoughts, walked away, wrote a bit more and walked away again. I posted it to my closed Facebook page to get some feedback from others and wondered if that was enough.

But then remembered this blog post. #StandUP.

So, here I am, standing up. Because I am upset and angry.

I am not upset and angry that someone didn’t like or disagreed with what I wrote. It would be frightfully boring if we always all agreed with each other and loved the same things.

I am not upset and angry that this message was unsolicited. I believe that people don’t need an invitation to comment when I write and publish things on a public forum. I invite all feedback – good and not so good.

I’m not even upset or angry that I don’t understand what was being referred to in the message. I re-read and re-read and re-read my post, and I can’t see where I ever, ever said that people with diabetes shouldn’t self-manage, or know what meds they’re taking or what their glucose readings are. I couldn’t find it in there. But, people interpret things differently and perhaps my writing wasn’t as clear to them as I thought it was.

I’m not here today to defend the content in that blog post, because that’s not what this is about.

I am upset and angry that I was being told to ‘be mindful of what and how I verbalise’. This is called tone policing. It is telling me that I should moderate the way that I talk and think about my own diabetes. This was an opinion piece. My opinion. People don’t need to agree with it – and they can tell me they don’t. But telling me to moderate the way that I communicate is a very different thing.

I will forever call out and stand up to anyone who tells me, or others with diabetes, to restrain our feelings or opinions, and that is why I am writing this post. Because more than anything, I believe that we have a right to express how we feel about diabetes, in the way we want to, especially when we are sharing our own opinions or experiences. When we are told to be mindful of what and how we are writing/speaking it is a step on the way to censoring and silencing us. We already do that enough.

Often, in clinical settings, we moderate the way we speak. We might minimise how tough things are, or don’t speak out about the way we are treated or the judgement we face. When we are told that we’re not doing enough and are failing, we look down, afraid to stand up for ourselves.

And so, we created spaces where we could be free to share and rant and cry in a way that gave us some comfort. We turned to others who are likely to have had similar – if not identical – experiences. We share our opinions, some of them unpopular, thought-provoking and challenging of the status quo because we feel we have the liberty to do just that.

We have had to be quiet for too long. But that should never be the case in our own space.

The diabetes online community is that space. Twitter, when we use our #xxDOC (or #DSMA) hashtags is that space. Other online and offline support opportunities and groups we have created is that space.

And this blog (and others written by PWD) is that space.

So, back to the message I received last week. I did ask for clarification, and for examples of where I’d used capital letters or words that could be considered harmful, but I didn’t get a response.

Just this message:

No answers, just a threat to mute me. To silence my voice. Sure, it is only being silenced on this one person’s twitter stream, but that was the response to me refusing to be ‘compliant’ and agree with a healthcare professional’s demands that I tone down the way I write about my own opinion. I had not been aggressive, abusive or rude. I had just shared my own opinion and thoughts in my own voice. In my own space.

These days, I usually don’t show my glucose data online. When I first started Looping (about two and a half years ago), I regularly posted the flat CGM lines that amazed and surprised me. I also shared the not-flat lines that showed how hard my Loop app was working as temp basal rates changed almost every five minutes. The technology worked hard so I didn’t need to, and the results were astonishing to me. I shared them with disbelief. (And gratitude.)

I stopped doing that for a number of reasons. It did get boring, and I definitely recognise my privilege when I say that. I also acknowledge my privilege at being able to access the devices required for the technology to work. And there was the consideration that sharing these sorts of stats and data online inevitably lead to comparisons and competition. That was never my intention, but I certainly didn’t want to add to someone having a crappy diabetes day while I blabbed about how easy my day had been.

But today, I’m sharing this:

This was my previous 30-day time in range data from the Dexcom Clarity app on the day I arrived back home in Australia after returning from New York. (My range is set to 3.9mmol/l – 8.1mmol/l.) I’m not sharing it to show off or to boast. I don’t want congratulations or high fives. In fact, if anyone was to see this and pat me on the back, I would respond with the words: ‘I had very little do with it’.

I can’t really take credit for these numbers and would feel a fraud if anyone thought I worked hard to make this happen. Using an automated insulin delivery system full time means that I do so much less diabetes than ever before while yielding time-in-range data that I could once only dream of.

I want to share it, not to focus on the numbers (because it’s NEVER about the numbers!), but to explain what happens when diabetes tools get better and better, and what that means in reality to me.

Those thirty days included the following: End of year break up parties for work and other projects (four of those); ‘We-must-catch-up-before-the-end-of-the-year’ drinks with friends (dozens of those!); actual Xmas family celebrations (three of those over a day and a half– and I’m from an Italian family, so just think of the quantities of food consumed there). Oh, and then there were the three weeks away in NY with my family. Our holiday consisted of long-haul flights from Australia, frightful jet lag (there and back), a lot of food and drink indulgences, out-of-whack schedules, late nights, gallons of coffee, no routine, and more doughnuts than I should admit to consuming.

Add to that some diabetes bloopers of epic proportion that had the potential to completely and utterly railroad any best laid plans: insulin going bad, blocked infusion sets, sensors not lasting the distance, a Dex transmitter disaster.

And yet, despite all of that, my diabetes remained firmly in the background, chugging away, bothering me very little, with the end result being time in range of over eighty per cent.

This graph is only part of the story of why I so appreciate the technology that allowed me to have a carefree and relaxed month. Diabetes intruded so little into our holiday. I bolused from my iPhone or Apple watch, so diabetes devices were rarely even seen. Alarms were few and far between and easily silenced. I was rugged up in the NY cold, so no one even commented on the Dex on my upper arm. The few times I went low, a slug of juice or a few fruit pastilles were all it took, rather than needing to sit out for minutes or hours. Diabetes didn’t make me feel tired or overwhelmed, and my family didn’t need to adapt and adjust to accommodate it.

That time-in-range graph may be the physical evidence that can point to just how my diabetes behaved, but there is a lot more to it, namely, the lack of diabetes I needed to do!

As I spoke about this with Aaron, he reminded me of my well-worn comments about not waiting around for a diabetes cure. ‘You’ve always said that although you would love a cure, it’s the idea that diabetes is easier to manage that excites you. Ten years ago, when you spoke about what that looked like, you used to talk about diabetes intruding less and being less of a burden to your day. That is what you have now. And it is incredible.’

In a couple of weeks, the diabetes conference juggernaut will descend on Madrid for ATTD.

This one is all about new treatments and technologies in the world of diabetes and, in its thirteenth year, looks to once again be a busy and enlightening meeting.

There is so much on the program that focuses on user-led technologies and initiatives. I think it’s fair to say that PWD have long recognised that technology in diabetes is more than just the devices we wear on our bodies. We have long used technology for support and to connect to others who help us manage the day-to-day life of diabetes, and to learn and share. DIYAPS may be about the systems, but grasping the role of online platforms and support is essential in understanding the #WeAreNotWaiting movement as a whole.

It’s great that a number of PWD already know that they will be part of ATTD this year, attending satellite events run by different device and drug companies. Some are on the program and some will be there through other opportunities and work.

The more the merrier, I say! Different voices with different experiences sharing and learning is always a great thing. And having the opportunity to meet people in real life after only seeing them online adds another dimension to our peer support networks.

For European diabetes friends yet to secure a place at ATTD, there is another possible avenue in, but you need to be quick. Launching at ATTD is the new #dedoc° voices program. Although #dedoc°has its foundations in Germany it is truly an international community, involving people from all over the world. #docday° events (always a highlight at these conferences) involve diabetes advocates from across Europe and the US, and even the odd Australian, too. It’s great to see this new initiative is helping more advocates get a seat at the diabetes conference table as active participants.

APPLY NOW

If you want to be considered for the #dedoc° voices program, you need apply, which is super simple – just go here, where you will find out all about the program and how to throw your name in the ring! Applications close on Friday, so chop chop!

Successful applicants will have their travel and accommodation costs reimbursed, and will receive full registration to the conference.

Good luck. And hope you see you there.

Disclosure

I am an advisor to the #dedoc° voices program. I do not receive any payment for this role. 

I am an invited speaker at ATTD 2020. Lilly Diabetes is covering my travel and part of my accommodation so I can participate in the DOCLab advisory group meeting held during ATTD.

A very smart friend I met through Twitter, and has become a treasured IRL friend, says that when publicly telling our diabetes stories we may have opened a window into our lives, but that doesn’t mean we need to open a door. We get to choose how we protect ourselves and who we let in.

I choose to leave the window open and have come to learn over the years that as more and more people walk by, more people see what is going on inside. I know I can shut the window and draw the blinds any time I choose, and I did that for a short time at the end of last year. But mostly it is very, very wide open.

But having an open window to glance into doesn’t give anyone the right to yell that they don’t like what you see through the window, especially if I don’t ask. And certainly make sure that you have a good look and understand what you are seeing before you start to tell me that I am wrong about my decorating choices.

My window is on one side of the street. You can cross the road to avoid looking in. Or you can walk by, but not stop for a chat.

I choose what it looks like inside my window. I choose where the furniture goes, how it looks and feels. I live in it the way that works for me. I’m not a professional window dresser or decorator, just someone who knows what looks and feels good to me. I have never given decorating advice because I am not a professional decorator. Just a person living in this room that can be seen through that open window.

This blog is my open window. I welcome anyone who wants to peek inside. No one has to be here, but they’re welcome if they want to be. Some people might have a quick look and decide that it is all a little too frivolous or boring. They may think the things I get worked up about are a waste of time and that there are far better things to spend energy on. They may think it’s all naval grazing. They may think there are far too many pink stripes. That’s okay. It probably is a bit of each of those things, but it works for me. I sometimes write my thoughts on things in the broader diabetes world – and  that may not be your take. That’s okay, too. We don’t need to agree on everything. I’m here, narrating my diabetes and how that intersects with the rest of my life, the world around me, the people I love.

Sometimes, I do that with great vulnerability. I share stories that are painfully personal and sometimes very raw. I try to infuse humour in there because sometimes, living with diabetes hurts so, so much that I need to break that up with something amusing.

I write about those sensitive topics, as well as more general day-to-day subjects, and that is not a decision I make lightly. I do it for selfish reasons – I hope that by telling my story I might just find someone who has a similar experience who can share their wisdom with, and help, me. Another reason is that I don’t want anyone to feel the loneliness and isolation I have felt at times. Diabetes can be lonely. Diabetes on top of other really tough things, such as infertility and pregnancy loss, parenting, mental illness, distress, diabetes-related complications can feel isolating.

If you don’t like what you see in here, that’s perfectly okay. If I have said something factually incorrect, I would really like to know about it so I can correct it. You can tell me about typos (I know there are many) and eventually, I may get around to fixing them. If I have upset you, I would love to understand why and welcome that discussion if you’re comfortable doing that. You can leave a comment – anonymously if you would like – sharing your thoughts.

But don’t ever tell me that I need to change what you read here because you don’t like what you see. Don’t tell me that I need to moderate what I say, or the tone in which I choose to say it. I have chosen to open the window into my diabetes life. But I have not ever chosen to be told how to live that life.

Outside looking in.

Recently, the Australian of the Year was announced. This year, the gong was awarded to Dr James Muecke, an eye surgeon from South Australia, who was acknowledged for his work raising awareness of type 2 diabetes and its links to preventable blindness.

I didn’t really know of Muecke before the announcement, but clearly, he is very accomplished, and his work reaches beyond Australia’s borders. He co-founded social impact organisation, Sight for All, which raises funds to deliver vision-saving programs and eye health projects to people in under-resourced countries.

However, it is Muecke’s work in linking type 2 diabetes and blindness that received the majority of the media coverage, with (as can always be relied upon) some pretty average reporting. Interviews with and soundbites from the newly crowned Australian of the Year did focus on a simple and incorrect equation of sugar equalling diabetes, and this certainly did seem to concern a lot of people responding to what they were seeing online.

I sighed as I read through a lot of that commentary, dismayed as the calls to differentiate between the types of diabetes drowned out Dr Muecke’s award, with repeated bleats that ‘Sugar didn’t cause my/my child’s type 1 diabetes’.

Sugar didn’t cause anyone’s diabetes – it’s just not that simple. I appreciate wanting people to understand that drinking too much Coke isn’t why type 1 diabetes develops. But equally, I want people to understand that it isn’t why type 2 diabetes develops either.

Asking for clarification of the different types of diabetes isn’t always necessary because it doesn’t always matter. You bet that it does matter at times, but other times, it really doesn’t.

We see this time and time again. Think about the time that café in Sydney thought they were being cute by calling a dessert ‘Diabetes’, or the time that guy on that UK cooking show referred to something as ‘Diabetes on a plate’. Was this really the time to get all uptight because the difference between type 1 and type 2 diabetes were not specified? Were the calls to stop stigmatising type 1 diabetes by not clarifying that ‘our’ diabetes isn’t because we ate that dessert? Does it matter in these moments if the person stigmatising and misrepresents diabetes doesn’t point out which sort of diabetes?

It really doesn’t. If the dessert was called ‘type 2 diabetes’ or the recipe was ‘type 2 diabetes on a plate’, it still would have been wrong. It still would have been stigmatising.

And yet, every time another lousy comedian, or celebrity or chef makes a diabetes joke, or the media gets diabetes wrong, or the Australian of the Year explains diabetes in the wrong way, the predictable cries, and rapid soundbite responses only feed into the stigma, prejudices and misconceptions of type 2 diabetes.

We can do better – we need to do better. And we can, by being more thoughtful in our response to correct people getting diabetes wrong.

I should point out that this goes beyond people with (or parents of children with) type 1 diabetes. Lots of other diabetes stakeholders get into it too. Some health professionals trip over themselves in their endeavour to speedily demand clarification of type, (even when it is not necessary). This has always left me somewhat befuddled and wonder if they think this will win them brownie points with the cool kids on Twitter. Surely HCPs working in diabetes understand that sometimes putting ‘type 2’ before diabetes is not actually rectifying what is factually incorrect in the original statement. And that should matter, a lot more than the ‘likes’ from the type 1 diabetes Twitterati they seem so eager to impress!

We can get it right, and get it right quite easily. When the Australian of the Year announcement was made, the comms team at Diabetes Australia absolutely nailed the messaging, striking a balance between commending Dr Meucke for his award, acknowledging how wonderful it was to see the Australian of the Year platform being used to highlight the link between diabetes and diabetes-related eye disease (with a plug for KeepSight!), and adding a note to clearly and eloquently explain the complexities of type 2 diabetes, the role that genetics and other non-modifiable risk factors play in its diagnosis, and reminding people that type 2 diabetes is not caused by eating sugar.

I think the team got it right – the information was correct and accurate and did not in any way add to the stigma of diabetes. (Disclaimer: I work for Diabetes Australia and I’m talking about my colleagues.  Whilst I sometimes work with the comms team, they are all far smarter and better at communicating than I could ever hope to be. Which is possibly why they won’t let me near any of our socials. That, and they worry I’ll swear, or share an Effin’ Birds cartoon…)

Each type of diabetes – and there are many! – has its own complexities and some of the time we need to make sure that it is clear which diabetes we are talking about. But next time you find yourself about to take to the keyboard to correct some misinformation, ask if you are actually adding to that misinformation. And if you see someone demanding such clarification, ask them if they are aware they are contributing to type 2 diabetes stigma. Because I think a lot of the time that is exactly what is happening.

Complete digression, but the title of this post reminded me of these books, which anyone who has been around kids in the last 15 or so years would know about!

Edwin Pascoe, who works as a registered nurse and credentialled diabetes educator, has explored the uniqueness of sexual orientation (gay) among men with type 2 diabetes in his PhD thesis with Victoria University.

This is Edwin’s second post for Diabetogenic (read the first one here).

This weekend, the Mid-summa Pride March marks its 25th year of the LGBTQIA+ community and this year diabetes will be represented.  Edwin invites you to participate and march in what appears to be the first-time diabetes has been represented at such an event in the world. 

To get involved in this historic event and support LGBTQIA+ people with diabetes, please contact Edwin Pascoe on diabetes-education@hotmail.com

 

But first, read Edwin’s post.


They say that you can’t really know what it’s like to experience a particular-group of people’s world, unless you have been there yourself. The reason is that your vantage point restricts your line of sight.  You only get to see certain things and while people can explain these things to you, their gravity may remain elusive.

This line of sight is often further obscured by well-meaning comments directed at members of the Lesbian, Gay, Bisexual, Transgender, Queer, Asexual, Intersex plus (LGBTQIA+)

community, such as ‘aren’t we all the same’, which are often offered up when a person makes that leap of faith to come out as non-heterosexual to their health care practitioner.

In a sense LGBTQIA+ people are shut down in these conversations by such comments and blended into some kind of homogenised one size fits all approach: a far cry from patient centred care. To put it crudely, it’s nice not to stick out like dogs’ balls but there are times when its important, and even pivotal to explain your truth when speaking about matters as important as your health.

However, the influences among LGBTQIA+ people are so subtle and varied that they escape detection, by even the people who are affected by them – these are often described as incognizant social influences.

For many, the idea of sexual orientation having an influence on diabetes management does not make sense, so when this idea is challenged cognitive dissonance comes into play.

Cognitive dissonance is an internal psychological self-talk that serve to maintain some sort of order when beliefs are inconsistent. Internal beliefs shared by many HCPs are:

  1. They treat all patients equally
  2. Being gay (sexual orientation) is about sex practices, hence the word sexual orientation.
  3. Psychosocial factors influence people’s management of diabetes and so need to be considered in diabetes education.

However, these 3 factors clash and have, to this date, resulted in silence when it comes to talking about sexual orientation and diabetes as evidenced by a lack of research in the diabetes space within Australia and indeed the world. Silence, however, only serves to further perpetuate this silence.

While point 3 is true, point 1 and 2 may not be the case. In point 1, many people in my study expressed that they treat all people the same which is probably true, but does that mean the people they care for receive equitable care or equal chance of access? Review this famous picture which makes it abundantly clear that we must do different things to achieve the same outcome.

There are myriad psychosocial factors that are unique to LGBTQIA+ people with diabetes, e.g. homophobia in sport, eating disorders such as binge eating disorder found to be at higher rates in gay men and stress (including depression and anxiety) and stress related behaviour (smoking, drugs e.g. amyl nitrate effecting eye health, alcohol).

Likewise support structures among gay men are generally quite different. For straight people their family will often be there to support them when required (e.g. taking them to an appointment, motivating them to take medicines and monitor or seek help and assisting them in an emergency.) For LGBTQAI+ seeking support can be problematic as they may be estranged from their family to varying degrees; provision by religious groups are absent for many gay men; and they may disengage from the gay community if they don’t meet image ideals that can exist.

Loneliness and isolation is a problem in the LGBTQIA+ community. In point 2, the belief that the discussion of ‘gay’ is synonymous with a discussion of sex, is quite pervasive but only represents one aspect of a person’s life. This obsession with sex of gay men has been represented in a multiplicity of discourses, from different powerful institutions in society throughout history like law, religion and medicine, that have directed that conversation, including endocrinology.

A German doctor by the name of Eugen Steinach in the speciality of endocrinology performed orchidectomies on gay males in the 1920s and transplanted them with those of straight males, in the belief that homosexual tendencies were rooted in the testicles. Various barbaric gay conversion practices were carried out up until recently; while time-lines are unclear due to wide spread secrecy, we know homosexuality was removed as a mental illness in 1992 in the WHO ICD classification system.

However, 28 years on, the legacy effect of this cruel regime remains ever present in medicine as reported by various Australian studies and case reports of homophobia.  There is a paucity of education within healthcare on matters of LGBQIA+ people and this is in part leading to ongoing ignorance.

In addition to this specialisation within medicine has meant that those who are well informed on LGBTQIA+ issues are usually far removed from mainstream medicine e.g. sexual health and mental health clinics, meaning possibilities for mentoring by colleagues and upskilling is reduced.

Again, LGBTQIA+ remain invisible as we don’t tend to record this information due to sensitivities around this topic. Generally, we use labels to denote difference but leave them out if they are part of the ‘norm’. This is problematic as the so-called norm is that which other things are compared to, while those labelled are counted as second to the norm – but at least they are counted.  However even more frightful are those that don’t receive the reward of that label – they are the invisible.

To put it in religious terms we could refer to this last group as the dammed. Therefore, it is those of the ‘norm’ that get to decide who gets counted and who do not. For example, we talk about women in cricket, why? to denote they exist and are unique as compared to the norm which are men. However, what would it mean if we didn’t label women in cricket? Would it render them invisible and we didn’t get to see their contribution? We don’t say men in cricket.

It is common to talk about men in nursing to denote they bring a difference to nursing, normally a female dominated profession. Of course, these labels are artificial but speak to power of words in healthcare and why LANGUAGE MATTERS.

Sexual orientation labels are however judiciously applied in medicine as there is a lot of anxiety around this. Anxiety arises from HCP who fear causing offence and LGBQIA+ people themselves who fear discrimination by HCP. Anxiety is often attributed to the sexual factors and as such attempt to adjust this medical gaze must be challenged and adjusted to above the waist to encapsulate the entire person because maybe only then, the laser sharp focus on sex and the judgment that goes with this may start to dissipate? It doesn’t mean we forget sex but that this only becomes part of the whole. This is important, as both the sexual practices and the non-sexual practices of people contribute to health in diabetes.

Sexual health education in diabetes for all people e.g. male, female, LGBTQIA+ and HIV is presently only rudimentary and for some non-existent. Our sensitivities in this are harming people with diabetes.

Straight people are spared the need to come out with a label as this is the norm. They have the freedom to flow casually into and out of conversations which encapsulate topics such as relationships and sex, which gay men must first censor or even disguise if it means coming out, if they want an answer to their question.

While the topics such as erectile dysfunction may be similar between gay and straight men, the psychosocial context of these are different which HCP must be attuned to if they are to develop a therapeutic relationship, but are they? While it is clear that there are some homophobic HCPs out there, for the most it’s a lack of awareness and nervousness about how to navigate this field.

Although it’s unclear why, in my study, gay men with type 2 diabetes attended allied health services 50% less than the general population in Australia e.g. diabetes educators, dieticians and endocrinologist. In addition to this those who didn’t attend, displayed an increase in complications and a trend towards glucose levels outside the range. This highlights 2 things here, one is that multidisciplinary care works and secondly that gay men disengage from these services that can help.  Allied health needs to explore ways to better engage LGBTQIA+ people through education and further research.

My packing-for-travel routine is pretty relaxed. We left for New York at 8am on Boxing Day and I started packing when we got home from our five millionth family gathering at about 10pm on Xmas night.

Admittedly, my laid back attitude to diabetes-supplies packing could be because I usually spend my time travelling surrounded by other PWD who are far better organised than I could ever hope to be. I know that if I run out of insulin, pack the wrong glucose strips for the meter I’m carrying or forget a charging cable, someone will be able to help me out. (I know this because these things have all happened. More than once. Way more than once.)

Anyway, I thought that I had done a pretty damn good job of throwing everything I needed together for New York, with back up supplies and contingencies. As we headed to the airport bright and early, still full of my mother’s Xmas zippoli, I felt comfortable that diabetes was going to be a relatively easy companion on this trip.

Turned out that I got it mostly right. Just not completely!

Issue one happened when I got a transmitter low battery warning the first week we were in NY. ‘Bugger,’ I thought, remembering back to the last time I recharged my Fenix G5 transmitter*. It was while I was sitting at breakfast one morning in Boston at ISPAD. I recalled that I definitely hadn’t had the transmitter plugged in long enough for a full charge. At the time, I thought I’d charge it fully the next time I did a sensor change…and then promptly forgot.

Of course, I had forgotten to pack the very specific charger required to recharge my Fenix. And I couldn’t for the life of me remember what it was called. ‘It has two little magnetic-y things on the side. And it’s kind of shaped like this,’ I said sketching a rough picture to the people behind the counter in about fifteen electrical stores around the city.

After getting nothing more than blank stares, I went directly to the source – Facebook – and sent a message to a couple of tech friends back home (including the bloke responsible for building the device). I had a response minutes later, placed an Amazon Prime order straight away and two days later my Fenix was charging on the kitchen counter in our apartment.

I had a re-batteried travel transmitter with me that I used in the interim (with layer upon layer upon layer of waterproof tape over the top of it because I had also forgotten to pack the resin needed to finish off that little device…),  but as soon as the Fenix was fully charged, I reset it and shoved it back into the still in situ sensor. Crisis mostly averted.

And then there was the run in with Dex sensors. I’d sited a new sensor a day or two before we left and took two spares with me. I usually get three weeks out of a sensor, so thought that if lucky I wouldn’t even need to change one at all during our time away. But if I did, I would be right and have another there … and a spare just in case.

Well, best laid plans and all… the original sensor failed after less than a week. The second sensor did too, and the third sensor was actually faulty – the needle scarily poking out the end as I released it all from the packaging.

I believe the word I used at that point was ‘Fuck’. Loudly. And then turned straight back to Facebook with this:

A few NY friends reached out and shared the post, and within an hour, I had organised to meet up with someone who could help me out. Thanks a million to Stacey for connecting us, and thanks two million to Caroline who rode into Manhattan with her ridiculously beautiful baby to drop off sensors to me and have a coffee. (Off topic, but Caroline and I thought this was our first-time meeting, but we realised later that we had met for dinner one night in New York back in 2011!)

I am forever grateful for the support I receive from my peers online – and being my back up plan because I am so crap at diabetes. I do promise to try to do better when getting myself organised for travel, but I know that I am still likely to get things wrong. Diabetes is a hard task master and demands a lot. Slip ups happen.

But there is always help at hand. I was off Twitter at the time, feeling particularly vulnerable after the brutal time on there at the end of the year. Thankfully I had Facebook to turn to and a huge group of diabetes friends there to help me out. But what if that wasn’t the case? This is why our online spaces must be safe at all times, and why that power imbalance between HCPs and PWD, and how potentially harmful that can be, needs to be recognised. We need to feel safe reaching out wherever our peers are for whatever support we need. I did that and that’s why this blogpost is called ‘Peer support on the road’ rather than ‘Loopless in New York’!

Back to the important things.

* I use a rechargeable G5 transmitter with my Dexcom, built by a very clever bloke in Australia.

I wrote a post a while ago called ‘You Do You’, (and revisited and expanded on it here). It’s where I wrote about how everyone should have the freedom to do diabetes whichever way they see fit. I’m pro-choice in all aspects of life*, especially when it comes to PWD choosing their own management tools.

And I think that people with diabetes should have the choice to BE the people we need to be. And the people we are. I touched on this on my post on Monday when I spoke about how I felt intimidated online because my opinions and thoughts, and the way I addressed issues, were not everyone’s cup of tea. I felt that I was being called out for being myself. And that wasn’t okay.

No two people with diabetes are the same; no two people with diabetes will have precisely the same management ideas and preferences, and no two people with diabetes will react and respond to situations in exactly the same way.

THAT IS OKAY.

Diabetes is messy, frustrating, weird, annoying, amusing (rarely, but sometimes), scary, boring and a whole lot of other adjectives. And how we react and respond to it is our own business and no one else’s. You BE you, because you have the right to do that.

You have the right to be as loud or as quiet as you want.

You have the right to be as bitter and angry as you need to be in the moment.

You have the right to celebrate and be joyful about your diabetes.

You have the right to call out things that upset you just as much as you have the right to commend the things that make you satisfied.

You have the right to step away from groups, situations, people who upset you.

You have the right to disagree with others. Having an opposing view does not mean that you are attacking another person.

You have the right to have an opinion on what you see in the world of diabetes – even if it is happening on the other side of the world. I was incredulous when it was suggested that I shouldn’t question something happening in a healthcare system of which we are not a part. (I may not use the healthcare system in the US or the UK or Italy or anywhere other than Australia, but I am allowed to comment on what I see being done in those places.)

You have the right to be passionate and not be told that is a character flaw.

You have the right to be emotional because diabetes is real in a way that only makes sense to those of us who are living with it or have a loved one living with it. I don’t know how to take the emotion out of this, so you bet I will be emotional at times. I don’t get to clock off at the end of the work day and not think about it.

You have the right to use the words and language that works for you when talking about your own diabetes and if anyone tells you that #LanguageMatters is actually preventing PWD from doing that, tell them to fuck right off. It’s not. It never was. It never will be, and anyone who says it is has missed the point of the whole movement.

You have the right to use the word ‘fuck’ or whatever else you want to use. Profanity helps some people and we shouldn’t be told to wash out our mouths if others don’t like us using those words. (Sorry, dad.)

You have the right to be the sort of advocate you want to be. Or to not be an advocate.

You have the right to share your experiences – even the ones that don’t shine a particularly positive light on health systems or HCPs. No one – NO ONE – should silence us when we turn to our peers to seek support, or talk about what is going on in our diabetes lives.

You have the freedom to talk about your own diabetes, especially in the diabetes online community which we created for this very reason – to be able to share our experiences, learn from each other, support our peers and build each other up.

So, this? This is me being me. This is me standing up and not going quietly. This is me saying that I will be the person with diabetes I need to be, because it’s the only way I can be true to myself and true to my community.

*Except vaccinations. I don’t believe in choice there.

Follow Diabetogenic on WordPress.com

Enter your email address to follow this blog and receive notifications of new posts by email.

Read about Renza

This website is certified by Health On the Net Foundation. Click to verify. This site complies with the HONcode standard for trustworthy health information:
verify here.

Archives

Twitter

%d bloggers like this: