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Some weeks in diabetes feel longer than others. This week has felt like a millennium. And it’s felt nasty.

I took most of the Easter long weekend off Twitter because there was some mean stuff happening, with the usual suspects rearing their bullying heads. I ventured in once but didn’t want to spend my weekend seeing what people were saying about my tweet. Apparently said tweet also wound up on Facebook, because being held up as an example of the hopelessness of the diabetes mafia on just one social platform wasn’t enough.

Whatever.

If I had to say something positive about it all, (being the Pollyanna type), it would be that I do appreciate the lack of passive aggressiveness of these bullies. They let you know where they stand – no Vaguebooking or subtweeting from them!

But then, I also lack subtlety. And so, here’s an unambiguous reminder for everyone. Because after the week that was, I think we could all do with a little bit of kindness.

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A few years ago, I was introduced by my endo for I talk I was about to give. I was there to do a bit about how I like to be treated by HCPs, and there was a whole bit in there about how I was more than my numbers.  We’d chatted about how I would like to be introduced and I suggested she should read my bio and then say ‘And Renza’s last A1c was…’ before I would cut her off. It was a good lead into my talk.

My endo is one of the very few people who actually does know what my A1c is. As a matter of course, I don’t share it. It’s my data. I own it. Sure, I may post a screenshot of a recent CGM trance because right there and then it contributes to how I am feeling. But it is my own and my decision to put it out there for others to see. I understand that there may be judgement from others, or they may want to share their opinion. That’s fine. I can take it.

I would never, ever ask another person with diabetes what their A1c is. Or what their blood sugar is in the moment. In fact, I deliberately look away if someone pulls out their glucose meter or checks the CGM app on their phone. Of course, if someone wants to tell me what their numbers are, I’m happy to listen.

But I would never, ever ask. And would very pissed off if someone asked me. Imagine if someone asked you your weight? How would you feel about that?

Why is it that even though there are so many different aspects to our health that are measured, it is glucose levels or A1cs that are the ones that get shared around – by ourselves and by others. Get onto any online diabetes group and you will see this happening. I have to sit on my fingers and keep them away from the keyboard when the data being shared does not belong to the person doing the sharing. Some groups have regular ‘roll call’ threads where they ask for most recent glucose results. People sharing their own numbers is one thing – sharing someone else’s is another thing altogether, especially when it is annotated with what the person ‘did wrong’ to ‘cause’ the out of range number.

How can we truly believe that people see us as more than our numbers if that is what is shared? That was the point my endo and I were making during her introduction…she read my bio outlining all the things that I do believe go towards defining me. Yet there she was at the end focusing on a number that I refuse to believe does.

Imagine participating in a ‘current weight’ thread. How comfortable would anyone feel doing that? Or would they even consider sharing someone else’s weight online? (Step down now if you’re a Kardashian and that’s just regular Insta fodder.) I know that there are weight loss groups who do online weigh-ins. While I would never do it, they’re adults making the decision to do it.

I have a number of adult friends who use CGM share apps so that their friends, HCPs or loved ones can keep an eye on what’s going on with their glucose levels. (I’ve done this in the past, but don’t do it now.)

I asked some of them if they set up rules around how this sharing works. Some do. For example, they share only at certain times; they are clear about when they want the person they’re sharing with to get in touch, (one friend said that her partner is allowed to call her if she is low and hasn’t messaged within 20 minutes to say she’s on it – if she messages, he leaves her alone); they do not want to hear any judgement calls from the person seeing their data (and that goes double, triple, quadruple if that person has a functioning pancreas), they do not want to be asked if they have bolused as their trace inches (gallops) higher.

I guess what everyone is trying to do is make sure that they don’t feel as though they are under surveillance.

I asked these friends if there had been a conversation about ‘on-sharing’ – that is, the person who had access to their CGM data sharing it with others. No one had. I never had that conversation when I was using share apps because I knew that no one would think for a moment that was okay. They knew that flashing what they could see on their app to anyone around them was not okay – the information was not theirs to share. My friends said they knew their data was safe too.

Some people may think I am making too much of a deal about nothing. That it is just sharing a number in the moment and that is it. Or it is a moment of pride, sharing a loved one’s A1c they have worked hard on or CGM graph for the day, or snapshot showing how much time they’ve been in range.

But actually, I think it is more than that. I see it as saying that in that moment, that person with diabetes is only about a number and data. That is never, ever the case.

POSTSCRIPT

I wrote this piece a while ago and have been reluctant to publish it but changed my mind after seeing a conversation about this online earlier this week (that I stayed well clear of).

Please see my musings through the lens with which I am writing: I am an adult with diabetes. I was diagnosed as an adult. My perspective is my own and I don’t for a moment claim to understand anyone who is not a woman in their mid-40s, diagnosed with T1D at 24, living near the middle of a large city, who drinks too much coffee. And is called Renza.

Yesterday, Diabetes Australia launched a new campaign called The Lowdown (please read my disclosure statement at the end of this post). It’s all about hypoglycaemia, and designed to get hypos out in the open by encouraging people with diabetes to share the realities of what hypos mean, look and feel like.

I love this campaign because it’s truly about people with diabetes. You’ll see and hear our stories and our experiences, and it will provide a forum for us to learn from each other. (Vote 1 peer support!)

There is stigma associated with hypos. Have you ever had a low and been asked ‘What did you do for that to happen?’. Or has someone ever asked you why you are not better prepared if you find yourself without enough (or any) hypo food on you? Has someone overreacted when you have been low, making you feel that you need to manage them at the same time as dealing with your hypo? Or has someone told you that you shouldn’t be having (as many or any) hypos?

All these things have happened to me and the result was that often I simply wouldn’t say when I was low, or I would downplay the situation. Reading stats such as ‘people with diabetes have on average <insert arbitrary number> of lows a week’ always made me feel like an overachiever, because I could guarantee that I was having more lows than whatever stat was quoted.

One thing I could rely on was that my friends with diabetes never made me feel like lows were my fault, or that I was hopeless because I didn’t have enough stuff with me. More likely, they would silently pass me a few jelly beans or fruit pastilles and leave me to deal with things myself, which is exactly what I need to do when low.

The last thing I need is someone throwing a million things at me (‘Here…I have juice, sweets, sugar, a glucose IV…’)and stressing out (or even worse – saying that Iam stressing them out) and asking every two minutes if I am okay. (I know that people are doing this out of concern. But seriously, the last thing any of us need when we are low is dealing with someone more flustered around us!)

This campaign is for PWD by PWD and that is why I love it. I’m hoping it will help us understand that others are dealing with the same crap around lows that we are. And that it is nothing to be ashamed of. Getting things out in the open is always a good way to reduce stigma and make people feel comfortable talking and seeking the help they may need.

So, let’s talk about lows. Share your story and read what others have to say – remembering that, as always, we are not a homogenous group and you are likely to read a variety of different stories. That’s great! Hypos affect people in different ways. For some they are significant and can be terribly scary, and for others they are simply an inconvenience that just needs to be dealt with and then they can move on. No one’s experience is any less or more legitimate than another’s.

Just some of the people who have already contributed to #TheLowdown2019

 

How to get involved

It’s easy!

Share a video or photo about how hypos make you feel. Share your post on your social media account (Facebook, Twitter, Instagram etc.) using the hashtag #TheLowdown2019. Please make sure you use the hashtag so we can find your contribution and share it and add it to our website.

If you’re not on social media, you can email a photo of yourself (perhaps holding up a card with one word which best describes how hypos make you feel) to thelowdown@diabetesaustralia.com.au

This page of The Lowdown website explains more.

Disclosure

I work for Diabetes Australia and have had some input into the development of this campaign. I am writing about it because I hope that it will get more people engaged and interested in what the campaign has to say, and encourage contributions.

I have not been asked by anyone at Diabetes Australia to write about The Lowdown here or on any other social media platform (but I’m sure they’re pleased I have).  

Transparency is always important to me and I declare everything relevant (and not relevant!) on Diabetogenic. You need to understand and consider my bias when I am writing and sharing. You can always contact me if you have any questions about this.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

DISLCOSURE

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

It’s hot in Melbourne today and it’s going to get warmer over the next few days. I’m loving the bone-warming sun that just makes everything look so sparkly and bright. So, I’m spending as much time as possible soaking up the rays (and adding to the ridiculous tan mark around my Dex), because the cooler weather will be here before I know it. I’m trying to build up those vitamin D stores to last me for when winter hits here and I’m reliant on quick trips to the northern hemisphere for work to see the sunshine and warmer temperatures.

Anyway, diabetes doesn’t take a break over the summer. Or winter. Which means, there is always lots to read and see about it. Here are some of the things I’m catching up on now.

Hospital life in pictures

This piece from the guardian will break your heart. Explained pictorially, it’s easy to see that the medical system is broken, medical education is broken, hospitals can be incredibly cold and anxiety inducing places, doctors are at breaking point. And patients in the system are left to deal with the fallout from the disarray.

IDF comps

The International Diabetes Federation is working to reduce the stigma association with diabetes-related complications, with a focus on how the language used can make people feel judged and stigmatised. Last year, they launched the #DiabetesComplicationsTalk Facebook page, encouraging people with diabetes to share stories and support each other.

It’s really great to see the IDF in the #LanguageMatters space, encouraging people to openly speak about diabetes-related complications to help reduce the stigma associated with them. More here.

Diabetes Voice

Still on news from the IDF, the organisation’s quarterly magazine is now available electronically. The first edition is an absolute cracker. Start with this incredibly powerful piece from editor, Elizabeth Snouffer, about diabetes-related stigma. Read it. Share it.

Patient Revolution

If you’ve not checked out the Patient Revolution website, now is a great time to have a look.

Start with this page, which is a library of stories you can click through, finding any specific topics that you are interested in.

Also, there is a Patient Revolution chat which uses the hashtag #WhyWeRevolt. To keep up to date with their chats, and to take part, follow @PatientRev on Twitter.

1,200 mason jars

Do you ever find yourself in the midst of a Twitter thread, wishing, in equal measure, that you hadn’t started, but can’t get enough of it? Sometimes these threads are diabetes-related; sometimes they’re not. Go here for one that is definitely not.

I have spent far too much time in the last week invested in this bizarre tale. There is a lot to take away from the whole saga – maybe starting with: don’t pay USD$169 to hear someone ‘teach’ you how to ‘be you’. And there are a lot of unanswered questions, such as what the hell is going to happen to the mason jars.

Happy reading. (You may need a drink …)

Diabetes in the US

I will never understand the US health system. My head and heart hurt as I hear the struggles of friends with diabetes, and the difficulties they have accessing insulin, and diabetes tech and supplies.

This piece from the New York Times talks about non-medical switching, where insurance companies decide which drugs (and devices) they will cover and subsidise. In Australia, the government decides which drugs will be listed on the PBS (Pharmaceutical Benefits Scheme). If a drug is on there, it is the same price for everyone who has a prescription. There are some drugs that require a special prescription to be provided at the subsidised price. But there is no extra negotiating or pleading, or any involvement, with insurance companies.

In a system that is broken beyond measure, this seems like one more roadblock to make just surviving with a condition such as diabetes impossible.

Going beyond

Beyond Type 1 has grown to include a new platform for people with type 2 diabetes. Check it out!

Real life Loop stories

The team at diaTribe has a new series of personal stories of people who have been using DIYAPS solutions. Adam Brown’s story was first, and Kelly Close has now offered her experiences. Such a great idea to get a number of different insights into what has worked, what hasn’t and hopes for the future of DIYAPS.

Sharing and caring

Also from diaTribe, this great piece from Kerri Sparling which provides her own and others’ perspectives on sharing of CGM data. There is no one way to share data – it is personal, individual and can change over time, depending on circumstances. Some choose to; others don’t. I love this piece because it is balanced and offers some interesting thoughts.

Ascensia and CGM

More tech choices for people with diabetes is always great to hear, so Ascensia’s recent announcement of their move into the CGM market has been met with enthusiasm from the community. Read their release here and Diabetes Mine’s take on the announcement here.

SoMe at conferences

I believe social media engagement and use at all health conferences is a critical and necessary part of any communication strategy. There is no better, easier or more effective way to share details of the conference that by encouraging the people attending to broadcast using their own social media networks.

This article explores that, referencing the ridiculous photo ban at ADA in 2017 (which thankfully was changed in 2018).

Menopause and T1D blog

Sarah Gatward is a blogger from the UK and she is writing a series sharing her experiences of living type 1 diabetes and going through menopause. Yes! And thank you, Sarah. Start here.

NDSS reminder

Now is a good a time as any to make sure your NDSS details are up to date. Remember – the NDSS is not just about subsidised diabetes supplies. It also provides information and support for people affected by diabetes.

Go here to make sure your registration details are correct.

Bin the fax

All my dreams came true when I read this article in the Limbic today! Finally calls to get rid of the archaic fax machine in health care. Halle-bloody-lujah!

 

Well, it’s been a year. It’s always the same. Come December, and as Mariah is blaring in every store I walk into, I start to feel exhaustion. But it’s not all bad news. Holidays loom ahead. Sunny weather means more time outdoors. And long, warm nights out with friends and family seem like the perfect way to spend my time away from work. Oh, and perhaps most excitedly, my mother is going to make her famous zippoli – my favourite Italian Xmas food.

The happiest time of the year is when mum serves up zippoli. What a time to celebrate being from an Italian family!

The diabetes world remains comfortingly – and frustratingly – static at times. There are constants that shape each year, but there are also changes. Some are positive, some lead me to wonder just who is making decisions that impact on PWD and why do they seem so far removed from the realities of living with this condition?

I’m ready to draw a line under 2018 – a bold, thick, solid line – farewelling the year with the knowledge that there will always be some things about diabetes I know to be true.

Diabetes is hard. The relentlessness of it doesn’t really subside. As much as we have tools to try to make things easier, it permeates, something I realised back in July when the wind was knocked out of me as diabetes unleashed itself into every part of me, taking hold and trying to pull me under.

There is no silver bullet. Loop does seem magical to me, but my diabetes is still there. It is just here in a different way – a new normal.

The inequalities of diabetes continue to be an important theme throughout our community and we can’t turn our backs to the fact that access to the most basic of diabetes medications and treatments remains out of reach to many. There is no one way to advocate for change, and I commend everyone working at the front line to improve the situation.

Which brings me to the point where I remind everyone that it is absolutely not too late to make a donation – however small or large – to Life for a Child. Saving the life of a young person at Xmas time seems like an absolute no-brainer to me.

Peer support remains a cornerstone of my diabetes management toolkit. Of course the shape of that support changes – I’ve met some incredible new people this year and been involved in some remarkable projects. At the same time, there have been some important collaborations with diabetes friends I’ve known for some time. It’s those diabetes friends that continue to help me make sense of my own diabetes, make me realise that my village is global, and know that wherever I turn, someone will have my back. I can’t explain just how reassuring that is.

Despite feeling that there have been times that the community has been splintered and a little disjointed, I still believe that the diabetes community is something positive. I also know that it can take time to find your tribe in there, and accept that not everyone has to be best buddies. But when you do find those people who you just click with (and that doesn’t mean agreeing on everything, by the way) you do everything you can to hold on to them, because that’s where the magic of working with peers happens.

While co-design seems to have become a bit of a buzz phrase, there are some examples of it that just make diabetes activities and projects so much better! This year, I’ve had some incredible opportunities to work on projects with a vast array of stakeholders and what can be achieved is incredible.

Sometimes, (a lot of the time?) we need humour in diabetes. And sweary birds. Finding Effin’ Birds earlier this year was a source of such joy and happiness, especially as I realised that (unintentionally) the clever folk behind it have made it all about living with diabetes. I cannot tell you how many moments I have come across one of their pics on my social media feeds and it has perfectly nailed my diabetes mood.

We can’t be afraid to have conversations that can be considered difficult. This was the foundation of the Australian Diabetes Social Media Summit this year, but it went far beyond that. Women, diabetes  and sexual health remains an issue that needs a lot more attention. And we need to keep talking about mental health and diabetes.

Language matters. Whatever people believe, the way we speak – and think – about diabetes has far reaching effects. It affects everything from the treatment we receive, the public’s perception of diabetes, where fundraising dollars are allocated and how governments fund diabetes.

And so, I think it is fitting that I round out the year and this post with one of the things I am so proud and honoured to have been involved in. It is one of the best examples of co-design; it involves diabetes peers, it acknowledges that diabetes can be a difficult monster to live with, and it holds people with diabetes up. Oh – and it reminds us that absolutely, completely, utterly, #LanguageMatters.

I’m taking a little break from Diabetogenic to do … well… to do nothing. That’s what I have ahead of me for the next three or so weeks. No plane travel, no speaking engagements, no media, no dealing with the diabetes things that get me down. Except, of course, my own diabetes thing. But I asked Santa for a pleasant few weeks of diabetes being kind to me. I’m sure that’s what I’ll be getting under the tree. As long has he can work out how to wrap it. 

I hope that everyone has a lovely festive season. I do know for many it is a really difficult time of the year. Thank you to everyone for reading and sharing and commenting. I’ll be back some time in January. Ready to go again, and to rant and rave, celebrate, and shamelessly talk about what’s going on in my diabetes world. I hope to see you then. 

It’s Research Wednesday again. Still not a thing, although Jane Speight from the @ACBRD disagreed with me after I said that last time, so maybe it is a thing?

Anyway, here are a few research studies you may be interested in getting involved in. Remember, participating in research is a great way to help contribute to and shape diabetes care, as well as provide insights that only those of us living with (or around) diabetes truly can. Please do consider getting involved if you can.

Women Loopers in Australia – we need you!

The Australian Centre for Behavioural Research in Diabetes is currently recruiting women for a research project on DIYAPS.

This one has been open for a while and for some reason lots of blokes have participated, but we need some women to get involved. Women are a truly significant part of the DIY world. I know that when I want information about DIYAPS, the first person I look to is Dana Lewis. And for Loop specific info, Katie DiSimone. I also know that there are a lot of women loopers in Australia. And we need you!

So – if you are female, living in Australia, aged 18 years or over, have had type 1 diabetes for at least a year, and using Loop, OpenAPS or AndroidAPS , please consider getting involved. This study involves a phone interview which will take 45 to 60 minutes, and you’ll be asked about your looping views and experiences.

CLICK HERE TO CONTACT THE PROJECT MANAGER FOR FURTHER INFORMATION

(Disclosure: I’m involved in this study.)

Loopers everywhere – we need you!

The OPEN project is a collaboration of international patient innovators, clinicians, social and computer scientists and advocacy organisation investigating DIYAPS. The first piece of work from this consortium is called DIWHY (get it?) which is looking to provide a better understanding of the reasons that people with diabetes decide to take the DIYAPS road, as well as examine barriers and motivators to building and using these systems.

You can participate in DIWHY by taking the online survey which is open to adults with diabetes as well as parents/carers of children with diabetes. The survey is available in English and German.

CLICK HERE TO FIND OUT MORE AND DO THE SURVEY

(Disclosure: I’m involved in this one too…)

Social media and diabetes care

Jacqueline, from the University of Hamburg, is currently looking for people to complete an online survey to help with her Masters thesis. She is looking at the importance and use of social media in diabetes.

The survey is anonymous and will take you about ten minutes to complete.

CLICK HERE TO TAKE THE SURVEY

Still open – new mums with diabetes

Women with type 1, type 2 or gestational diabetes who are either pregnant or have been pregnant in the last year are still needed for a survey from the NHMRC Clinical Trials Centre at Sydney Medical School (from the University of Sydney).

This is a twenty minute survey and the aim of the research is to better understand the glucose monitoring preferences and experiences of women with diabetes during (or planning for) pregnancy.

CLICK HERE TO TAKE THE SURVEY

I really couldn’t find a better title for this post. Other ideas were a bit sweary, so I’m going with this, because that is the sound I seem to be making with increasing frequency when I look at online encounters.

I probably should acknowledge that it’s mid-December. I’m tired and a little grouchy and so is everyone else. I am ready for a holiday and to be away from the daily grind. I need quiet, and some downtime, and a break from the crap that a lot of the time I’d barely notice, but now seems amplified and awful. I know I’m not the only one.

But even with that caveat, this year, more than any other, I have found myself needing to deliberately and consciously switch off from the diabetes online world.

Two occasions stand out for me. The first was back over the Easter period when Dexcom UK and Ireland dared to suggest people with diabetes post a selfie with an Easter egg. That sent the low-carb community into a frenzy because obviously daring to take a photo with an Easter egg (which, incidentally, no one said had to be made of chocolate), was the same as committing some sort of crime against humanity. The fact that each photo was attracting a £10donation to Life for a Child was completely lost in the carb-deprived anger.

And the second was during ADA when some in the community once again jumped on the outrage bandwagon for, as it turned out, no good reason.

These have not been isolated incidents, and the latest explosion happened on the Diabetes Australia Facebook page just the other day. (So, by way of disclosure, I work for Diabetes Australia, but I don’t have anything to do with the daily running of any of our social platforms, In fact, I don’t even have the passwords to most of them.)

What happened? Well, last week one of the team shared an article from Diabetes Daily about Xmas gifting for friends and family with diabetes. I read the article. It wasn’t the first or only piece I’d read recently about diabetes-related giving, but this was the one that was shared.

Anyway, apparently this article is hugely insulting and offensive. Yeah, I know. I had trouble joining the dots too, but some people really, really took offense to the idea that a gift with a diabetes focus should even be considered.

The comments after the article were quite nasty, including horrid remarks to and about the author. This is completely and utterly uncalled for. The writer is a person – a person with diabetes as it turns out. One of our own. Yet the comments about, and to, her were awful.

If I’m honest, I don’t really want a pair of ‘diabetic socks’, in exactly the same way, I don’t want the gift of a Michael Bublé Xmas album. But you don’t see me ranting and raving and yelling at the staff in JB HiFi because, apparently, they think that’s what a woman in her forties wants for Xmas.

You know what? If you don’t like the idea of giving or receiving a diabetes-themed gift (or Michael Bublé), don’t do it. Melinda Seed wrote a great piece last year about why she thinks it’s a bad idea and offered some suggestions that, quite frankly, I’d be happy to find under the tree on Xmas morning. Her piece is not aggressive, it’s not mean spirited. It’s her well-considered viewpoint on why she wouldn’t really appreciate being given a ‘diabetic cookbook’. (Oh, and she managed to get the words weird-arse and diarrhoea in one sentence, which made me laugh out loud. Probably more than Mel intended.)

This sort of commentary is great because it provides a different perspective, once again showing that we don’t all have to agree to get along. But when the response is aggression and nastiness and rudeness, all that does is divide the community.

I feel that there has been quite a bit of that this year. I do know that it’s always been there to a degree. But this year? This year it seems to have been taken up a level. Maybe I’m just tuned into it more. Maybe I’m just over it more. Maybe my resilience around this kind of stuff just isn’t what it used to be.

So, for the sake of my sanity, the ‘block’ function has had more of a run this year than ever before. And, I’ve discovered and made a lot of use of the mute button. Not seeing negativity or aggression, or people who seem to just want to complain, constantly coming up in my stream is refreshing.

But the best thing I do when I see something that isn’t necessarily aligned with my diabetes philosophy? I scroll on by. That’s the only action necessary. Scroll on by.

I am en route back home from a flying visit to Copenhagen. I was invited by Novo Nordisk to moderate the first ever DEEPtalk event. (Please read my disclosures at the end of this post.)

I will write all about the event in detail, but in the meantime, here’s a video of the livestream, where you can see and hear nine fantastic speakers share how they manage diabetes specific challenges are found food and mealtimes. And see and hear me bumbling my way through.

DISCLOSURE

The DEEPtalk event was hosted by Novo Nordisk and was held at one of their facilities in Copenhagen. I was invited by the Global Patient Relations Team to moderate the event. Novo covered costs for my (premium economy) flights (I used my own frequent flyer miles to upgrade flights) and two nights’ accommodation as well as transfers and meals while I was in Copenhagen. There is no expectation from the Global Patient Relations Team (or Novo Nordisk more broadly) that I will write about the event or other activities held while I was in Copenhagen and what I do write is mine. All mine. 

This year for World Diabetes Day, the International Diabetes Federation has decided on the theme ‘Diabetes Concerns Every Family’. According to the WDD website, the aim of the campaign is ‘…is to raise awareness of the impact that diabetes has on the family and to promote the role of the family in the management, care, prevention and education of the condition.’

I get that. I have said it on numerous occasions: it takes a village to live with diabetes.

I was a little nervous when I first saw some of the materials from the campaign, because I was worried that it may focus too much on the negative effects of diabetes and how it burdens the families of those living with diabetes. I know how diabetes impacts my family and I feel enormous responsibility already about that. I don’t need to be reminded of it, and I certainly don’t need to be guilted into being told that if I am not managing my diabetes properly I am doing a disservice to my family.

Although there have been a few little things that hint at those ideas, mostly, what I’ve seen has been positive and focused on celebrating and acknowledging those villagers who help us live with diabetes.

Diabetes Australia has decided on the campaign of #MyDiabetesFamily to highlight the idea of the village, and acknowledge that ‘family’ looks different to a lot of people.  For some people with diabetes, it will be their immediate family – parents, partners, kids etc – who are their main cheer-squad and supporters; for others it will be their friends, work colleagues or maybe gym partner. Someone the other day told me that their dog is their most important diabetes supporter, providing them with comfort – and alerting them to lows.

I was asked to put together a collage of the people who I would refer to as #MyDiabetesFamily. This is it:

#MyDiabetesFamily

Obviously, and most importantly, Aaron and the kidlet feature. They know my diabetes in a way that no one else does because they see it most. They see the difficult days, the frustrations and how overwhelmed I can get, but they also see my celebrate the positives. And they have seen how much my diabetes – and my attitude to it – has changed in the last 12 months. In some ways, they benefit from Loop, too because my diabetes intrudes a lot less into our family’s life.

My parents and my sister are on there too – another obvious inclusion. Their support is never ending.

My gratitude for my family – in the more traditional sense of the word – is unending. They may not have diabetes, but they deal with it in different ways. While they may not understand that feeling of unquenchable thirst that comes from high glucose levels, or the panic of an ‘eat the kitchen’ low, they do know what it is like to be spectator to it all and I know that they all wish that I didn’t have to deal with those things – and everything else diabetes has to offer.

And the photo at the top shows just some of my friends with diabetes. As it turns out, this was the first photo on my phone with a group of diabetes friends, and these fab people are just a tiny number who also make up #MyDiabetesFamily; I am lucky to say that there are so, so many more.

These are the people whose islet cells are as absent as my own; these are the people who ‘get it’; these are the people who intrinsically understand what diabetes feels like – even if each of us have different experiences, and we use different words to explain it, and come from and with different perspectives. These are the ‘us’ in #NothingAboutUsWithoutUs; they are the ‘tribe’ in ‘Find your tribe, and love them hard’.

And in the middle? Well, that would be me. Because I am the one who is so grateful to have them all there as part of my life, helping and supporting me.

Want to get involved and celebrate your own diabetes family?

Have a look at the Diabetes Australia Facebook page (click on the image below to be taken there) to find out how.

DISCLOSURE (because they matter and I always disclose. ALWAYS.)

I work at Diabetes Australia, and had some involvement in the development of this campaign. I am writing about the campaign because I think it is a truly important one – not because I was asked to by any Diabetes Australia staff. Plus – I’ll take any opportunity to highlight the folks who make living with diabetes easier!

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