I met someone the other day – a friend of a friend – who had recently been diagnosed with type 2 diabetes.

Within the first 15 minutes of our casual conversation standing in the street as the Saturday morning rush happened around us, I heard these words from their mouth:

‘It’s my own fault. I should have gone to the doctor sooner.’

‘I am not a good diabetic at all.’

‘I am doing a really bad job checking my bloods.’

‘I’m not sure how long I need to keep checking my bloods. Or how often, really.’

‘I was told if I didn’t look after myself I’d need injections. I’m terrified of needles.’

‘I have a list of foods that I should and shouldn’t eat.’

‘I’ve never been sick before. And now I feel as though people think I am sick. But I feel fine.’

‘The doctor said I don’t have diabetes too badly, but then told me all the things that could go wrong.’

‘I am scared. I don’t know anything about diabetes, but I am scared that I am going to go blind. I was told that’s what would happen.’

Here was an incredibly confident, capable and clear thinking person, not much older than me. Until now, their contact with HCPs had involved annual flu jabs (kudos for that!) and a trip to the GP for the occasional virus. They told me they’d never spent a night in hospital.

The diabetes diagnosis came about after their GP suggested routine blood checks on the day they went in for their flu shot. The following week, they were told they had diabetes. This was just last week. So far, this person had spent about fifteen minutes with their GP and 45 minutes with the diabetes educator who works out of the clinic.

And look at how diabetes has been presented in that time. Already, this person feels as though they are a ‘bad diabetic’ and failing in their treatment. And they are scared.

I responded to some of those comments gently:

‘You DID go to the doctor – for your flu shot. And when they suggested you have a blood check, you did it there and then.’  

‘You are doing a great job. There is no such thing as a bad person with diabetes. We do the best we can with the information at hand.’

‘This is all new. You are checking your blood sugar and that’s amazing. Well done. You didn’t have to even think about that two weeks ago!’ 

‘Do you have a follow up appointment? When you go back, as why you are being asked to check at the times they’ve suggested. And if this is something you’ll need to do for the next week…or month…or longer.‘ 

‘It’s perfectly understandable to be afraid of needles. I don’t know anyone who likes them. And you may need insulin one day. But not yet. And if you do, that’s not because you have failed. It’s because diabetes needs to be treated and sometimes with type 2 diabetes, (and always with type 1 diabetes) insulin is that treatment.’   

‘Have you been referred to a dietitian? It’s really hard to change the foods you’re eating if you’re not sure about diet. Ask for a referral.’  

‘I don’t really think of having diabetes as ‘being sick’, so I understand what you mean. But you will need to think about your health differently. That doesn’t make you a sick person, though.’

‘It’s perfectly, perfectly understandable to feel scared. If you think that having a chat with a psychologist or counsellor will help with that, ask your GP.’  

‘Also … find some other people with diabetes and talk with them. Here’s my number. Call me any time.’

Imagine, if instead of feeling the way they were feeling, this person felt empowered, confident and assured – even if there was a bit of fear and uncertainty in there.

On the day we are diagnosed, we walk into the GP’s surgery not having diabetes. And walk out with a diagnosis.

It starts early. Those messages at diagnosis can impact how we feel about our diabetes for a very long times – indeed the rest of our lives.

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It never fails to surprise me – that instant connection you make with a diabetes peer.

Today, I had the pleasure of meeting Amira who has lived with type 1 for over 20 years. I flew to Sydney to oversee some filming for a work-related project, and Amira was being interviewed.

I listened to her tell her diabetes story (one I really hope she will write about for here!) and afterwards, we had a coffee and chatted. And there it was: that connection that goes far beyond our lazy beta cells, and far beyond both being diagnosed around Easter.

Amira is one of those dynamic, passionate, smart and funny people who helps to make the lives of people with diabetes better. I listened as she explained to me how she works with people with diabetes and instantly I knew she was one of those people I would want as part of my HCP team.

We spoke about every day things that I would speak with any other woman about. But diabetes adds layers and complexities and frustrations and fears. We nodded at each other as we shared those thoughts. Because they resonated straight away. And I was reminded again: the power of peers. That connection of diabetes that goes so deep that it must somehow be built into the DNA of those first encounters.

A new diabetes buddy makes for a good day. Today was a good day!

Today’s mood:

…Of course this tee is from the awesome Casualty Girl, and you can get your very own by clicking here. (Not sponsored – I happily purchased this myself!)

Diabetes Week kicked off in the UK yesterday with the launch of their very own Language Guidance statement. Well done to all involved. It’s great to see another language document joining the movement started by Diabetes Australia back in 2011, and added to in recent years by the ADA and AADE (who presented their Guidance Statement last year), diaTribe Foundation (who has written extensively on the issue) and the Team Novo Nordisk (who developed a great guide for media reporting on the team.) And now, it’s great to see the UK on board, too.

Click to read the new UK Diabetes Language Matters guide.

In Australia, it’s been wonderful to see just how widely our statement has been used. Conference organisers have embraced the Diabetes Australia statement, including it in speaker packs, encouraging presenters to align their talks with the document. (The table which offers suggestions for words and phrases that can be problematic is a very useful reference tool.)

I can still remember the launch of the Diabetes Australia statement. It was at the State Library of Victoria which played to my word and book nerdiness almost perfectly. There could not have been a better setting for a media launch about words, language and diabetes.

Little did we know back then just how significant or far-reaching this document would be. At first, we were met with a lot of resistance, and people thinking that it was political correctness gone slightly mad. But we persevered and made sure that we were clear why this work was necessary.

I remember sitting in talks given by HCPs and flinching constantly as judgemental and stigmatising language was considered appropriate. Now, in Australia at least, it is startling when someone uses words such as non-compliant, because the ongoing, constant and committed efforts by many have completely changed the way that the words are used when speaking about and to people with diabetes.

While the official statement was launched seven years ago, the impact language and words have on diabetes was not a new area of discussion. People with diabetes have been talking and writing about how significant the (positive and negative) impact of words can be. I remember seeing discussions about it on the Reality Check forum not long after I was diagnosed, and speaking about it at events we ran back when the consumer program started at Diabetes Victoria in the early 2000s. We knew that words had power. We just needed to bring everyone on the ride with us to get them to understand it too.

And that’s why the Diabetes Australia statement – and all those that have come since – are so important. They provide a framework to refer to; something to hold up as an example of how things could be better.

Even though there has been a lot written and spoken a great deal about language and diabetes over the last seven years, we’re not finished. This is not a static movement. No one can for a moment think that we have ‘done’ language; there will always be new and different things to consider. Some particular areas of interest to me in recent times include the language we use when talking about hypos. And how we reframe the way we talk about diabetes complications.

I wrote this piece after the ADA Annual Scientific Meeting last year when I realised that we need to keep moving forward because there is still much to be done.

But while we do that, I believe it is important that we never deviate from the intention of the language matters movement. It is not about dictating to people with diabetes the words we can and cannot use when talking about our own diabetes, or criticising the words we choose to use. It is about framing the way people speak to and about those of us living with diabetes, and encouraging the use of language that is inclusive, engaging, non-judgemental, destigmatising and respectful. It is about using words that make us feel empowered, positive, hopeful.

Fundamentally, it is about making things better for us.

‘No one asks to get diabetes. And no one asks to be diagnosed with a diabetes complication.’

I don’t know how many times I have said these words – in presentations, casual conversations, in meetings. I feel like a broken record sometimes, but it seems that I’m not done saying it because there are still real problems with the way we talk about a type 2 diabetes or diabetes-related complications diagnosis.

Both are discussed as an end point. And often an end point following failure which is so problematic that it makes every single part of me wince.

‘You got type 2 diabetes because you did/didn’t do this, this and this….’

‘You developed a diabetes-related complication because you did/didn’t do this, this and this.’

And then…there is nothing. There is nothing about what happens next: who to turn to, what help is available, ways to live well. Just some blame and shame and a massive spoonful of guilt, too. You’re welcome!

We need to change this. How different would things be if news of a type 2 diabetes or complication diagnosis was not accompanied with finger pointing at all the things that got us to that point, but instead an acknowledgement that this may feel scary, and a helpful list of what is available to help us.

Being diagnosed with type 2 diabetes is not an end point. Neither is being diagnosed with a diabetes complication. It’s a transition. And at that transition point, we need hope. And to know what’s next. (Cue: Snuffy Walden.)

Pumps. Pens. Syringes.

Patch pump. Pod.

Share your data. Don’t share your data.

Blood glucose monitors. Continuous glucose monitors. Flash glucose monitors.

Low carb. High carb. Low(er) carb. No carb. ALL the carbs.

Private diabetes team. Public clinic.

#WeAreNotWaiting. #WeAreWaiting.

Apps for recording data. Scribbling down numbers on the back of an envelope. Making up numbers as you go along.

Online peer support. Face to face peer support. No peer support.

How fortunate we are to have choices – to have choices we can make for ourselves for our own brand of diabetes.

I’m feeling a little burnt out at the moment by the zealots online who think it’s their way or the highway. Do what works for you and share it, by all means. But attacking someone else for doing something different is just being a dick. Don’t be a dick. There’s really no need.

On Saturday, I had the pleasure of attending the Australia Diabetes Society’s (ADS) annual Insulin Pump and CGM Workshop. I’d been invited along another ten or so people with diabetes who already wear CGM or Libre to share our insights into living with and wearing sensing devices.

(Quick shout out to the ADS. For those who don’t know, the ADS is the professional body for endos in Australia. Over the last few years, their leadership team has been absolutely instrumental in finding ways to better include PWD in what they are doing. As an organisation, they have been innovative, and responsible for ground-breaking initiatives such as the Enhancing Consulting Skills resource. We need our professional bodies to be like this. And we need them to work with us so that we can provide our perspective to the work they are doing.)

The idea of the workshop is for endocrinologists to have hands on experience of the technology rather than just what they see and are taught at industry events. (For the record, the industry events are super important because they are an opportunity to learn about the shiny technical side of things. And get branded pens. Pens are awesome.)

Discussion was the focus of this session. There was no long presentation with people taking notes. Instead, we were asked to sit at tables with endocrinologists, and encouraged to share our the real life experience of wearing the technology.

Now, I don’t know about you, but this is always the way I want to learn and to share information. I seem to get annoyed at sessions when I have someone speaking at me for ages, telling me what they think I need to know. I much prefer to have discussions and watch conversations go off on tangents, providing attendees with the details and information that is relevant to them; that they will be able to take home with them and put into practise.

The thing about having PWD in the room is that we have a tendency to hold little back. My friend Jodie and I were at the same table. We both wear Dexcom, but our experiences are quite different. (Or as I put it: ‘She does what she’s meant to. I don’t’.) This was actually a master stroke, because it showed the endos just how varied our experiences can be. And that while what works for one person may not necessarily work for another, there really may not be a ‘right’ way to do things.

Jodie and I demonstrated putting in new sensors so that the endos could see how the actual insertion works. We talked about using an alcohol swab where we were about to site our sensor (in this case, I was the one following the instructions I’d been taught when I first started using CGM. ‘ Yeah…I can’t be bothered,’ said Jodie and I wanted to high five her and welcome her to the dark side of non-compliance.)

There was one endo at our table who was pressing every single one of my ‘OH-YES-LET’S-TALK-ABOUT-THAT’ buttons, and the first thing she said when we removed the sensor from the packaging was ‘Why is there so much waste in there?

We spoke about the fact that current Dex sensors don’t have reusable inserting devices and that really, the companies could perhaps do a little more to find ways to reduce waste, while continuing to produce a sterile product. (The G6 apparently has addressed this…)

At one point, the Dexcom rep. mentioned the share function on the G5, and as if by magic, my new favourite endo jumped in with ‘Who makes the decision as to whether or not their data is shared.’ I wanted to hug her, but it was the first time we’d met and I thought that might be a little creepy. But yes; oh yes! We were going to talk about consent.

The absolute best thing for me was that not once as I shared by clearly (and absolutely owned) deliberately non-compliant CGM existence, did one of the endos look at me with disdain, shake their head, raise an eyebrow or tut tut. They asked how what I did made things better for me.

Some examples of questions and my answers:

Why do you wear the sensor on your arm and not your stomach?

I find it more comfortable and it reads more accurately. Plus, it lasts longer there than on my tummy.

Why do you restart the sensor?

Because I’m frugal and don’t want to fork out $90 every seven days when I know it works perfectly well for me still at 21 days 

Look, the Dex reps should turn away right now, block their ears and pretend that they don’t understand me, because I am going to be really candid about this. Firstly, I am going to say that I adore this product. I would say that no matter who is in the room – I’m not sucking up to the AMSL reps because I’m hoping they’ll throw some free product my way. They don’t and that’s fine. I mean it. This is a brilliant product that I literally trust with my life. But there are some things that piss me off…

Sensors are around the $90 mark. They are approved for use for seven days. But at the end of those seven days, the sensor is still working perfectly. In fact, many people report that it works even better after the first week. Why should I throw out a perfectly good, working product if it is still doing what it says on the box? 

I know the risks. I am choosing to do this myself and I am more than happy to own it.

But while we’re on this topic. The transmitter is AUD$540 every three months. That’s right, after three months, it stops working. The batteries are still good to go for a couple of months, but the device is factory set to stop working. Now, this has been done with a whole lot of safety considerations in mind and I understand those. But again, a device that is not rechargeable and still has some use in it has to be thrown out.

So, I don’t really have any qualms about using all sorts of DIY solutions that allow for the transmitter life to be extended.

I’ll say it again – I know the risks. This is about me and no one else. I am happy to take those risks.

So, you don’t calibrate it as recommended. Why?

Because sometimes, stopping whatever I am doing to calibrate is not something I want to do. Plus I’ve been wearing this for over 2 years now and I’ve learnt what to trust and what not to trust and how to use it safely. I have set my own boundaries that I feel are acceptable and perfectly safe.  

Do the alarms bother you?

They used to. But now I’ve managed to customise them to a way that works for me. I have all the alarms on now, but in the past, I had all the high alerts and alarms disabled because they pissed me off so much. But the predictability of Loop means that the alarms are rare and I generally I have the headspace to respond to them as they happen. (Although the please calibrate one can drive me nuts sometimes.) 

Do you share your CGM data?

I have in the past, but I don’t these days. As an adult with diabetes, I make that decision and there have been times when I’ve liked the idea of someone having my back – usually when I’ve been travelling solo. But since I’ve been looping there has been no need.  

What’s Loop?

Um…we’re going to need a longer session… Here’s the address to my blog. Sorry for all the swearing.

After the event, the event organiser sent me a lovely text message, thanking me for my time and for speaking at the Workshop. She said that the CGM session was a highlight for many of the attendees. ‘People with diabetes make the best teachers,’ she added. And she’s right. When we are talking about what it’s like to actually live with these device on our bodies and in our everyday life, we really are the best people to talk about it! HCPs are great at talking about the science and the clinical side of things. But we make diabetes real because we are living it. You can only get that when you go straight to the source. And yes; we’re the source.

Disclosure

The ADS provided me with a $50 gift voucher to thank me for my time on Saturday. I was also given one Dexcom sensor to insert at the Workshop which I am still wearing. (And will do so for the next three weeks or so…)

It takes a village.

How often do we say that about life with diabetes? I know I say it all the time.

It doesn’t matter if you were diagnosed as a child or as an adult, diabetes is rarely a solitary health condition. While those of us whose beta cells actually decided to go AWOL are the ones physically affected by the condition, our loved ones are also part of our diabetes existence.

As someone who is surrounded by a village of loved ones – family, friends, neighbours, colleagues – I can’t ever state enough how important they are in my diabetes wellbeing. I am so grateful for their love and support. I love that they are there for me when it feels like diabetes is kicking my arse. I love how Aaron knows that when things are tough, all I need is him to look at me, nod and say ‘diabetes sucks’, hand me a cup of tea and hold my hand to make me feel better. I love it when our daughter displays her keen advocacy skills by talking about diabetes in the same way I do, using the language I use. And I love it when my loved ones celebrate the wins and successes and diaversaries alongside me.

The Australian Centre for Behavioural research in Diabetes (ACBRD), in collaboration with the NDSS, is currently looking for family members and friends of people with either type 1 or type 2 diabetes to participate in some research to help them develop an information resource about how to support people living with diabetes. The resource will also focus on how loved ones can take care of themselves too.

To be eligible to participate you must meet the following criteria:

  • You are 18 years or older
  • You are either a family member or close friend of someone with diabetes (e.g. parent, sibling, spouse, best friend)
  • You live in Australia and are able to partake in a telephone interview, or meet with us in person in either North Melbourne or Geelong
  • You are able to read, write and speak English
  • You are available in early-mid June 2018

You will be thanked for your time and for providing your experiences with a $50 gift voucher.

If you are the loved one of someone with diabetes, thank you! And please consider taking part in the research for the development of this resource by contacting Caitlynn Ashton by email or phone (03) 9244 6668. (Please note, Caitlynn’s days of work are Monday-Wednesday.)

Celebrating my 20th diaversary with some of my village people.

A couple of years ago, I clumsily wrote a post about how there is simply not enough information available about women, diabetes and sex. That post remains one of the most read posts on this blog. Within half an hour of pressing the publish button, over two dozen women I don’t know reached out to me to say it was the first time they had ever read anything about the issue, and that their concerns and questions have never been addressed…mostly because they didn’t know how to ask them.

A week or so ago, the topic came up again thanks to a new survey that is being conducted out of the UK, headed up by health psychologist Kath Barnard. The introduction to the survey highlights that sexual health issues for women with diabetes are a neglected are of study, acknowledging they have an impact on wellbeing, self-image and relationships.

Here is what I wish I was told about sex and diabetes when I was diagnosed – or at least could easily find information about somewhere.

  • Diabetes can affect how you feel about sex. (Seriously, being diagnosed as a 24 year old, this should have been a headline.)
  • And it can affect sexual function in women. I really wish I had known this, because it was not mentioned when I was diagnosed (or for a long time after). Sex was different after diabetes, but because no one told me that it could be, or what might happen, I thought that this was just me. And because I thought it was just me, I didn’t speak to anyone about it. I guess because I was embarrassed and ashamed.
  • Yes, sex is exercise and can result in hypos. But it’s not just lows that affect sex. (This was literally all I was told at diagnosis about the impact of diabetes on sex: ‘You might have a hypo after or during sex, so eat a sandwich beforehand.’ And all I could think about in that moment was trying to work out how to incorporate a sandwich in foreplay. (Please do not send suggestions.)
  • High glucose levels are not good for libido. Sitting with glucose levels in the high teens and twenties does not put me ‘in the mood.’ It makes me feel tired, grumpy, frustrated and stressed. All of these feelings are conducive to diminishing sex drive.
  • And rollercoaster glucose levels don’t help either.
  • While I was warned that sex can cause hypos, I wasn’t equipped with how to deal with that. ‘Sorry, honey – I need…well, I need some honey, because I think I’m about to pass out,’ is a mood killer. For everyone involved. I learnt that very early on.
  • I wish I had been told how to speak about my concerns about sex – with HCPs and especially with Aaron. I felt like my body was failing at everything and that made me feel decidedly unsexy. But by not having the words or ideas of how to speak about it, I simply didn’t. (And again, I wouldn’t have had any solutions even if I did speak about it, so what would have been the point.)
  • The body image issues I had been living with for some time became amplified once I had diabetes. Suddenly not only could I see all these faults with my body, but now it was also broken from the inside. I felt unattractive, I didn’t want to have my body on show because to me it felt inadequate. It would have been good to have someone suggest I speak to a psychologist and work through this sort of shit!
  • Here are some ideas that might work if lubrication becomes an issue, because it might.’ That would have been a mighty useful comment to have received, instead of feeling like my body was slowly, but surely, shutting down all functions that I had, until that point, taken for granted.
  • Here’s an idea: often, at diabetes events, we receive bags chock full of goodies: Foot cream, alcohol swabs, glucose tabs, cardboard-tasting muesli bars, recipe books. Throw a tube of lube in there too, event organisers! At least this will get people thinking, realising that if this is an issue for them, they’re not the only ones, and probably start some conversation.
  • I wish HCPs understood that this may be a really difficult and awkward conversation for some people, and many women with diabetes won’t feel comfortable raising the issue. So please take the lead here and ask questions – even: ‘Have you noticed any difference in how you feel about sex?’ Do it gently…
  • Desire and arousal are not the same thing. Wanting to have sex, but knowing that it may be painful, difficult or just plain not the same as before, plays with your mind. I wish that had been explained to me, because arousal issues actually meant desire was affected.

I think that had I been better informed about all of these factors, or at least told that sex was something that diabetes could (or would most likely) affect, I would have been better equipped. It took me a while to muddle through it all myself.

I know that talking about sex – in and out of a diabetes context – is not always easy. But just because something is difficult doesn’t mean that it should be swept under the carpet and ignored.

Unsurprisingly, it was speaking with other women and learning that they had the same issues, questions and concerns that led me to seeking clinical and psychological help to work through everything. I feel like I got there in the end, but it took a lot longer that it needed to. Because I honestly thought that I was the only one dealing with it all. However – as is so often the case with diabetes – our concerns and stories are already someone else’s, and there are answers to be found if we know where to go to looking. I just wish that instead of having to search, they had been given to me at the beginning.

Please consider filling in the Female Sexual Health and Diabetes survey here. It only takes about ten minutes.

I’m a little late to the whole Black Mirror thing. Aaron has watched through all four series and has repeatedly told me that I should get onto it, but I’ve just not been in the right mood to start and work through a new sci-fi series. (For anyone equally behind the times, Black Mirror is a Netflix series.)

However, there was one episode in particular that Aaron, and a couple of other people, suggested I watch. It is called Arkangel. The Netflix description for this episode is:

Worried about her daughter’s safety, Marie signs up for a cutting-edge device that will monitor the girl’s whereabouts – and much more.

The device (called Arkangel), an implantable chip, allows Marie to see her three year old daughter, Sara’s, location and vitals – blood pressure, heart rate, cortisol levels etc. – in real time. But more than that, the chip allows Marie to actually see exactly what Sara is seeing – not to watch her child as if there were CCTV cameras everywhere, but to see the world precisely as her daughter is seeing the world. There are parental controls that allow Marie to change what her daughter sees, effectively, blocking out (by pixilating) anything not PG-rated. The device was completely controlled via an iPad-type device and would alert if Sara was in any distress.

Arkangel was sold as a way for parents to know that their children were safe at all times. And what could possibly be wrong with that? It’s what all parents want. Right?

About ten minutes into the episode, I looked over at Aaron. ‘This is making me really uncomfortable,’ I said to him. Watching Marie getting on with her life, with the Arkangel tablet device next to her for easy access to what her daughter is experiencing at that moment, made me feel very uneasy. Every single thing her little daughter saw was replicated on the tablet.

As the episode progressed, Sara got older and Marie continued to monitor her daughter’s every move. But by the time she gets to about ten years old, Sara starts to question her mother’s use of Arkangel. Sara has come to realise that the parental controls mean she had never seen, and therefore could not understand – a lot of things her friends were talking about. Marie decided it was time to put Arkangel away. The tablet was switched off and stored in the attic, and Marie and Sara got on with their lives.

Until Sara hit teenage-hood…!

One night, after discovering Sara lied about her whereabouts, Marie reactivated the Arkangel tablet to locate her daughter, and see what Sara was up to.

My neighbour, Jo, was one of the people who urged me to watch this episode. She knew that I would see what she had seen when she watched the episode. And I did, immediately recognising the parallels between sharing of CGM data and Arkangel. And the issue of consent, or rather, the absence of it.

At the Roche Diabetes MeetUp at ATTD this year, I  joined in a very robust conversation about the whole idea of sharing CGM data. There were adults with diabetes and parents of children with diabetes in the discussion, each with their own idea about the value of the technology.

A number of adults were appalled at the idea of sharing data, claiming it was simply a way for others to spy on them.

Personally, I am very apprehensive about sharing my data. Of course, this is a highly personal way to feel about the technology and there are other adults who absolutely love the idea that there is someone else keeping an eye on what’s going on with their glucose levels, and able to make sure they are okay if there is a problem. It makes them feel safer and more confident – and if that’s what people get from the technology, it’s only a good thing. But I am not sure just how comfortable I am at having someone see every high or low.

But we are adults – fully formed and grown and making decisions about ourselves and our diabetes, forourselves and our diabetes.

I also completely understand that as a tool, CGM sharing is one of, if not THE, most valuable and essential tool for parents to feel confident that their children with diabetes are safe at school, or other places, when they cannot be with their child. I know that CGMs with share capabilities have, in many cases, completely changed family dynamics for the better.

So when I question the technology and what it can do, I’m not in any way searching for answers about the value of the tech – that is indisputable in my mind. But I am questioning the issue of consent.

While it may make perfect sense for an infant in day care, or a primary school-aged child to have data share activated, what happens when the child starts high school. Or begins university? Or moves out of home? At what age does the idea of having the ability to remotely monitor someone’s CGM data become the decision of the person whose data it is?

I don’t think we have had these discussions, or thought through the long-term implications of CGM data sharing. And I worry that we still seem to not be having those conversations.

When the episode of Black Mirror ended, I felt unsettled. I actually noticed that my heart rate was elevated. I was rattled and had trouble sleeping that night, and I couldn’t help but see Arkangel as a cautionary tale.

Where are the conversations about consent? Where is the line in the sand when it comes to who makes the decision about data sharing? Obviously it will be different for every family, but where are the guidelines or conversation starters to equip people to make those decisions? If this is not being discussed at the time that children and adolescents are commencing CGM, why not?

These are not easy conversations to have – and, quite frankly, as an adult with diabetes, one diagnosed as an adult and not the parent of a child with diabetes, I am not sure that I am the right person to be even talking about it. Some might (and undoubtedly will) say that I should pull my head back in because I don’t understand the situation at all, and simply stop talk about it.

But someone does need to. And I think that it needs to start happening right now.

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