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The Monday after National Diabetes Week is a chance to take stock, take a deep breath and take a moment to look back over the busy days.

This year’s campaign was terrific in that the messaging was strong and it got a lot of attention. It was great to see the same information being rolled out across the country, and shared internationally, too. I certainly believe the campaign’s main theme of needing to detect and treat all types of diabetes sooner resonated with people across the globe.

So, there are some of my highlights from last week:

Frank Sita can certainly claim best on ground for his relentless support of the campaign. He blogged, vlogged and SoMe’d the hell out of the campaign and was also interviewed in a great piece for The West Australian newspaper. (Plus, he nailed the #LanguageMatters talk with the journalist.) Nice work, Frank!

Diabetes NSW & ACT held their Diabetes Australia Research Program Awards on Thursday night, using NDW as an opportunity to underline the importance of research, and recognise just some of the wonderful researchers working to unwrap the secrets of diabetes.

There are far too many stories of missed type 1 diabetes diagnosis, and many were featured last week. You can see these stories on the Diabetes Australia Facebook page. It’s simply not good enough that people have to become really, really sick before they are correctly diagnosed. Everyone must know the 4Ts.

 

There was a most welcome announcement with Health Minister Greg Hunt launching Australia’s first national diabetes eye screening program to reduce vision loss and blindness in people with diabetes. this is a great example of Government, and industry (Specsavers will also be contributing to the program) working together and with health groups to support people with diabetes.

Bill Shorten’s Friday evening call to the Government to broaden CGM funding was beautifully timed and was a great way to end the week, providing an awesome bookmark to the previous week’s piece on The Project.

 

Theresa May would have no idea that she provided an outstanding opportunity for us to get in a little #NDW2018 last-minute advocacy and awareness across the national press, just by wearing her Libre sensor.

And so, it’s a wrap. Except, of course it isn’t. We still need to remind people of the signs and symptoms of diabetes. We need better detection programs. We need more awareness. This campaign doesn’t get boxed up and archived, never to be thought of again. We must keep talking about it.

Of course, National Diabetes Week may be over, but for those of us living with it, every week is diabetes week. And so on we go: ‘doing’, ‘living’ and ‘being’ diabetes.

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Yesterday an article was published across Australia detailing a new report showing that Australians with diabetes are missing out on the recommended levels of diabetes care. Most of these people receive their diabetes care in general practise.

A couple of things before I go on:

  1. The article was behind a paywall, but Diabetes Australia shared an image of a portion of the it, and that can be accessed here. If you have access to a News Ltd. account, you can read the article here.)
  2. I want to say that in writing this post today I do not want to be seen to be doctor-bashing. I don’t believe that is constructive in any way whatsoever. However, I do think that there needs to be acknowledgement that the level of diabetes care in general practise is not ideal for a lot of people.
  3. The language of the article was atrocious. It appeared first under the heading ‘How diabetes sufferers are dicing with death’ Seriously, journos, ready the freaking Diabetes Australia Language Position Statement.

Onwards…

There was some discussion online after the article was shared, with a few doctors believing the article wasn’t all that helpful and feeling that it was unfairly unfavourable towards GPs. Someone also commented on the language used. (I’m not sure if they meant on Twitter or in the article. The language in the article was strong and very critical of GPs.)

The report is damning, and it shows that the results for people with diabetes are not good at all with only one in three people diagnosed with diabetes receiving expected standards of diabetes care. Only half had their A1c checked, and of those, only half again were in range.

This is despite there being a documented diabetes annual cycle of care (for which GPs receive funding). If completed fully, the annual cycle of care includes: annual A1c, cholesterol, and kidney checks, weight and blood pressure checks, as well as two-yearly eye and foot checks.

For me, it shows yet again how stacked the decks are against so many people with diabetes. We don’t receive the level of care recommended and then, when we don’t meet expected outcomes, or develop diabetes-related complications, we get blamed.

If we want to talk about things that are unhelpful and not constructive, let’s begin with that.

We seem to forget that most people don’t innately know what is required to manage diabetes, or what screening checks are required – especially people newly diagnosed with the condition. A lot of people rely on their healthcare professional – in the case of diabetes, usually their GP – for this.

I’ve written before that in my case, my GP is not in any way involved in my diabetes care. This is a deliberate decision on my part. I understand it is also a privileged decision – I have easy access to my endocrinologist, and other diabetes specialists for all my diabetes healthcare needs.

But that’s not the case for everyone, and a lot of people are reliant on their GP for all their diabetes clinical care.

People with diabetes are being let down.

Even though pointing fingers and appropriating blame is not necessarily helpful, it’s what we seem to do. We can blame the system. We can blame a lack of funding. We can blame a lack of continuity of care. We can blame the fact that there are no coordinated screening programs. We can blame the need for more specialist care. We can blame a lousy and ineffective electronic records system.

But what we can’t do is blame people with diabetes. No one asks to get diabetes. No one asks to get diabetes-related complications. So how is it possible that in a system that is letting us down, we are the ones blamed when it happens?

Also, this week, we have heard story after story of missed type 1 diabetes diagnoses with people reporting that despite seeing their GP (often repeatedly) about their symptoms, they were not checked for type 1 diabetes.

It is undeniable that some GPs simply do not know enough about diabetes to diagnose it in the first place, and then to treat it in an ongoing and effective way, and this is leading to those of us living with it not receiving an adequate level of care to live as well as possible with diabetes.

While there may be some hard truths in the report, hopefully the result will be better care for people with diabetes. Because, surely, that is all that matters.

As National Diabetes Week activities began, I kept a close eye on the Twittersphere to see just how the week was being received. Pleasingly, there were a lot of mentions of the #ItsAboutTime campaign, and I set about retweeting and sharing activities by others involved in the week. 

One tweet, from Edwin Pascoe, caught my attention:

Edwin Pascoe is a registered nurse and credentialled diabetes educator in Victoria.  He is currently undertaking a qualitative study as part of a PhD at Victoria University into the lives of gay men and type 2 diabetes in the Australian context.  Data is collected but analysis is underway.

I read Edwin’s tweet a few times and realised that he is absolutely right. I can’t think of ever seeing anything to do with any diabetes campaign that addresses the specific issues faced by LGBTI people with diabetes. So, I reached out to Edwin and asked if he would like to write something for Diabetogenic. I’m so pleased he did. 

One of the criticisms of diabetes representation in the media is that it lacks diversity. I completely agree with that sentiment. Because while we certainly may share stories, we also need more voices and more perspectives, and come to understand that there are different, unique and varied experiences and issues faced by different groups. 

I’m thrilled to feature Edwin’s post today, and am so grateful that he took the time to write it. 

__________________________________________________

CDE, Edwin Pascoe

Diabetes is a chronic condition that is managed in the context of people’s lives and this fact has been increasingly recognised by peak bodies in diabetes within Australia such as Diabetes Australia, Australian Diabetes Society, Endocrinology Society of Australia and The Australian Diabetes Educators Association.

Diabetes education has therefore become not just about defining diabetes and treatment for people but exploring how people with diabetes manage these things in context.  Creating the freedom and space for people to speak their truth will allow health practitioners to explore appropriate solutions that are congruent with the person with diabetes needs.

The following will cover some of this context and how sexual orientation may influence diabetes.

Context is everything

The context of lesbian, gay, bisexual, transgender and intersex (LGBTI) persons has not been recognised formally by these same peak bodies in diabetes specifically.  Arguments shared informally have suggested that what people do in bed does not affect diabetes and considering we have full equality under the law why would it matter. Further to this health care professionals (HCPs) have suggested none of this worries them as all people are treated the same, but herein lies the problem as:

  1. Not all people are the same.
  2. LGBTI people are still not fully recognised under the law in Australia despite the recent success in Marriage Equality. For example religious health care services and schools are permitted under law to fire or expel anyone that does not follow their doctrines.  In some states gay conversion (reparative therapy) is still legal despite the practice having been shown to cause significant psychological harm.  It is also important to note that it was only quite recently that the last state Tasmania decriminalised homosexuality in 1997 so this is in living memory.
  3. The law is not the only determinant of social acceptability but is entrenched in culture (we know this from numerous surveys that have seen the up to 30% believe that homosexuality as immoral (Roy Morgan Research Ltd, 2016)). Law changes have only meant that in part hostilities have gone underground.
  4. The focus on sex or what people do in bed fails to see people as whole and often lead to false claims of promiscuity in LGBTI people. There are also assumptions in relation to what people do in bed for example anal sex is one of these stigmatised practices.  In reality not all gay men practice this and a significant percentage of heterosexual people do engage in anal sex.

Reports from the Centre for Disease Control and Prevention in the USA identified that 44% heterosexual men and 36% of heterosexual women have engaged in anal sex (Chandra, 2011).  Mild displays of affection such as holding hands and leaning into each other engaged routinely by heterosexual couples are heavily criticized when observed in same sex attracted people causing LGBTI people to self-monitor their behaviour.  If they choose to engage in this behaviour it is often considered and calculated rather than conducted freely.

The result of this is that there is a lot of awkwardness around the topic of sexual orientation for both the HCP and LGBTI person, something not talked about in polite company.  This means that rather than talking about their health condition in context there is tendency to talk in general terms if they are recognised as LGBTI, or they are assumed heterosexual until the person outs themselves during the consultation.

However outing oneself can be an extremely stressful experience as, despite good intentions by HPCs, LGBTI people may still be fearful and remain silent to the point of even creating a false context (a white lie to keep themselves safe).  It has been a known practice among some LGBTI people that some engage in the practice of ‘straightening up’ the house if they know HPCs or biological family members are coming to their homes, to again keep themselves safe.  This is not to say that all situations are this bleak but that for some at least it is.  Does this prevent people from seeking help in the first place when required?

Studies on rates

In the USA Nurses’ Health Study, it was noted that the rates of diabetes in lesbian and bisexual women was 27% higher (Corliss et al., 2018).  Anderson et al. (2015)examined electronic records for 9,948 people from hospitals, clinics and doctors’ offices in all 50 states (USA).  Data collected included vital signs, prescription medications and reported ailments, categorised according to the International Classification of Diseases diagnostic codes (ICDs). They found that having any diagnosis of sexual and gender identity disorders increased the risk for type 2 diabetes by roughly 130 percent which carried the same risk as hypertension.  Wallace, Cochran, Durazo, and Ford (2011), Beach, Elasy, and Gonzales (2018)also looked at sexual orientation in the USA and found similar results.

However one must consider the country in which this data was collected as acceptability of diverse sexualities and differences in health care systems do make a difference. In a study within Britain the risk for type 2 diabetes was found to be lower than the national level (Guasp, 2013).  In Australia the rates of diabetes in a national survey came out as 3.9% in gay men in 2011 (Leonard et al., 2012)and this was the same as data collected by Australian Bureau of Statistics (2013)for that year (they did not differentiate between types).

Life style factors

Life style factors such as exercise and food consumption are important to consider as these are tools used to manage diabetes.  Studies have found significant level of homophobia in Australian sport that prevents participation(Erik Denison, 2015; Gough, 2007)and that there are elevated levels of eating disorders including binge eating disorder in LGBTI people (Cohn, Murray, Walen, & Wooldridge, 2016; Feldman & Meyer, 2007).

Qualitatively, a study was conducted in the UK/USA by Jowett, Peel, and Shaw (2012)exploring sex and diabetes, and in this study one theme noted was that equipment such as an insulin pumps put participants in a position to have to explain and the fear they were being accused of having HIV.

Stories

The following two stories may help give context to how sexual orientation has influenced these two people’s lives.

The first story is regarding a gentleman who came to see me for diabetes education for the first time who had lived the majority of his life hiding his sexual orientation due to it being illegal.  During the consultation I was trying to explore ways to increase his activity levels in order to improve blood glucose levels, strength and mental health.  He advised he didn’t like going for walks even if it was during the day in a built-up area as it was dangerous.  When asked to explain this he said he feared being attacked due to his sexuality as he felt he looked obviously gay, but I didn’t see that.

A second story later on was from an elderly lesbian woman who was showing me her blood glucose levels.  I noted her levels were higher on Mother’s Day, so I obviously asked what was going on there. She bought out a picture of her granddaughter from her purse which immediately bought a tear to her eye. She said her daughter had a problem with her sexual orientation and so stopped her from seeing her granddaughter, and that it had been two years since she had seen her.

It’s only the start

It is important to note that each letter of the LGBTI acronym has their own unique issues with regard to diabetes.  I have mainly talked about gay men here as this is what my study covers but there are studies on transgender people (P. Kapsner, 2017), increased rates of diabetes in people with HIV (Hove-Skovsgaard et al., 2017)and of course many others.  In Australia we don’t routinely record sexual orientation, only in areas of mental health and sexually transmitted diseases, and as such data is lacking in this area. It’s time to be counted and there is a need to learn new ways to improve engagement for LGBTI people with diabetes.

References

Anderson, A. E., Kerr, W. T., Thames, A., Li, T., Xiao, J., & Cohen, M. S. (2015). Electronic health record phenotyping improves detection and screening of type 2 diabetes in the general United States population: A cross-sectional, unselected, retrospective study.

Australian Bureau of Statistics. (2013). Australian Health Survey: Updated Results, 2011-12. from http://www.abs.gov.au/ausstats/abs@.nsf/Lookup/by%20Subject/4338.0~2011-13~Main%20Features~Diabetes~10004

Beach, L. B., Elasy, T. A., & Gonzales, G. (2018). Prevalence of Self-Reported Diabetes by Sexual Orientation: Results from the 2014 Behavioral Risk Factor Surveillance System. LGBT Health, 5(2), 121-130. doi: 10.1089/lgbt.2017.0091

Chandra, A. (2011). Sexual behavior, sexual attraction, and sexual identity in the United States [electronic resource] : data from the 2006-2008 National Survey of Family Growth / by Anjani Chandra … [et al.]: [Hyattsville, Md.] : U.S. Dept. of Health and Human Services, Centers for Disease Control and Prevention, National Center for Health Statistics, [2011].

Cohn, L., Murray, S. B., Walen, A., & Wooldridge, T. (2016). Including the excluded: Males and gender minorities in eating disorder prevention. Eating Disorders, 24(1), 114-120. doi: 10.1080/10640266.2015.1118958

Corliss, H., VanKim, N., Jun, H., Austin, S., Hong, B., Wang, M., & Hu, F. (2018). Risk of Type 2 Diabetes Among Lesbian, Bisexual, and Heterosexual Women: Findings From the Nurses’ Health Study II. Diabetes care, 41(7). doi: https://doi.org/10.2337/dc17-2656

Erik Denison, A. K. (2015). Out on the fields.

Feldman, M. B., & Meyer, I. H. (2007). Eating disorders in diverse lesbian, gay, and bisexual populations. International Journal of Eating Disorders, 40(3), 218-226. doi: 10.1002/eat.20360

Gough, B. (2007). Coming Out in the Heterosexist World of Sport: A Qualitative Analysis of Web Postings by Gay Athletes. Journal of Gay & Lesbian Psychotherapy, 11(1/2), 153.

Guasp, A. (2013). 2013Gay and Bisexual Men’s Health Survey.   Retrieved 09/07/2018, 2018, from https://www.stonewall.org.uk/sites/default/files/Gay_and_Bisexual_Men_s_Health_Survey__2013_.pdf

Hove-Skovsgaard, M., Gaardbo, J. C., Kolte, L., Winding, K., Seljeflot, I., Svardal, A., . . . Nielsen, S. D. (2017). HIV-infected persons with type 2 diabetes show evidence of endothelial dysfunction and increased inflammation. BMC Infectious Diseases, 17(1), 234-234. doi: 10.1186/s12879-017-2334-8

Jowett, A., Peel, E., & Shaw, R. L. (2012). Sex and diabetes: A thematic analysis of gay and bisexual men’s accounts. Journal of Health Psychology, 17(3), 409-418. doi: 10.1177/1359105311412838

Leonard, W., Pitts, M., Mitchell, A., Lyons, A., Smith, A., Patel, S., . . . Barrett, A. (2012). Private Lives 2: The second national survey of the health and wellbeing of gay, lesbian, bisexual and transgender (GLBT) Australians.

  1. Kapsner, S. B., J. Conklin, N. Sharon, L. Colip; . (2017). Care of transgender patients with diabetes. Paper presented at the European Association for the Study of Diabetes, Lisbon Portugal http://www.abstractsonline.com/pp8/#!/4294/presentation/4612

Roy Morgan Research Ltd. (2016). “Homosexuality is immoral,” say almost 3 in 10 Coalition voters [Press release]

Wallace, S. P., Cochran, S. D., Durazo, E. M., & Ford, C. L. (2011). The Health of Aging Lesbian, Gay and Bisexual Adults in California. Policy brief (UCLA Center for Health Policy Research)(0), 1-8.

Kellion medal day – it remains the most hopeful day of the year. And yesterday, I was lucky enough to attend what I fondly refer to as ‘The Most Hopeful Day of the Year’.

As is typical at these events, once the formalities are over, I find myself gravitating to those in the room who have been awarded their medal for living an extraordinary number of years with diabetes. It’s almost as though I want to stand close enough to them to learn everything they know. Just being in their presence is awe-inspiring, even though they would say that all they re doing is living their lives – lives impacted every single day by diabetes. But to me, these people somehow seem magical and I want to understand how to be too.

A diabetes diagnosis fifty years ago (or sixty, seventy, eighty years ago) was very different to one today. Or event twenty years ago for that matter. The devices, education and information that is available today was very, very different. To see people who not only survived with diabetes, but lived their very best lives with it, in times of the most basic of treatment options, is remarkable.

The people in this photo are my peers. They have walked the path I am walking ahead of me and are more than happy to tell their stories. I listen to every word, hoping to unlock some of the secrets to how they have managed for so long with diabetes. My pitiful twenty years of type 1 simply affords me ‘still a newbie’ status; I have nothing remotely useful to share  – I can offer nothing. So I listen. I ask questions. I watch.

It is an honour  to attend the Kellion Victory Medal Award Ceremony each year. And to stand amongst the medalists is a privilege I will never, ever take for granted.

‘That’s a lot of diabetes’. (L-R: 60 years, 70 years, 20 years, 51 years, 42 years of living with type 1.)

I am certain that almost all the people who read this blog are in some way affected by diabetes. (Because, really, if you are not, why would you be reading?) It makes sense that the people who want to hear about my real life with diabetes have their own real lives with diabetes.

Most of the blogs I read are to do with diabetes. Most of my interactions online are to do with diabetes (with the occasional detour down avenues of language, Nutella recipes, Effin’ Birds, and idolising Nigella).

It makes sense and there is nothing inherently wrong with focusing on things that we understand, or that is interesting to us personally. Of course we feel a connection when reading stories by others going through similar experiences, and that makes us feel safe and less alone.

This week, however, I am hoping that a lot of what we are talking about is received by people outside the diabetes world. Because #ItsAboutTime that others know and understand the importance of early diagnosis and treatment of diabetes.

It’s National Diabetes Week (#NDW2018) and Diabetes Australia’s campaign this year is building on the 2017 campaign of raising awareness of the signs and symptoms of type 1 diabetes, and the fact that there are 500,000 Australians with undiagnosed type 2 diabetes.  (Disclosure: I work for Diabetes Australia. I am writing about this because it is an important issue, not because I have been asked to.)

These days, my loved ones and I know all about the symptoms of diabetes. And somehow, I knew them just over 20 years ago when I walked into my GPs office and said ‘I’m thirsty all the time, I can’t stop peeing, I’ve lost weight and I’m exhausted. I think I have type 1 diabetes.’

My GP told me that she thought I was being a hypochondriac, so I’m actually not sure if she would have sent me off to pathology for a fasting glucose check as quickly as she did had I not prompted her with my (as it turns out correct) self-diagnosis. (In hindsight, getting me to pee on a stick would have been an even better idea, but I didn’t know that at the time…)

The rest of the story is that a few days later, I was told I had type 1 diabetes. That’s my whole story. It’s utterly, completely, totally uneventful and, quite frankly, I love that it is.

But that’s not the way it is for a lot of people. In fact, each year 640 Australians end up in hospital because the signs of type 1 diabetes have been missed. In many cases, these people have already been to see their GP one, two or more times because they , or their families, have known that there was something not quite right, and they were not checked for type 1 diabetes.

Is that your story?

Here’s the thing: if you have diabetes, or someone you are close to has been diagnosed type 1 diabetes, you know the signs. You may not have known them beforehand – in fact, you may have your own diagnosis story that mirrors those that we are sharing throughout NDW – but you know them now. You are not the target audience for this campaign.

The target audience is people in the community without a connection to diabetes. It’s GPs who are not routinely asking people to pee on a stick so they can quickly and easily check if a person has glucose in their urine.

We need to tell those people. Because we can talk all about this amongst each other all we want, but then all we are doing is adding to the noise in the echo chamber. We need to step outside of the diabetes world and shout from the rooftops 4Ts of type 1 diabetes:

These symptoms need to trigger people – everyone – to automatically think type 1 diabetes.

Share the poster. And ask everyone you know to share it too – including people not affected by diabetes. #ItsAboutTime we ALL knew the 4Ts so that we can diagnose and treat type 1 diabetes sooner.

Without fail, the first thing I put into my schedule when I am attending either ADA or EASD is the update from Life for a Child (LFAC). It’s usually held on the first day of the conference, bright and early in the morning and, for me, it sets the scene for the conference. It anchors me, so that throughout the remainder of the meeting, while I am wandering around a fancy exhibition hall, or listening to talks about the latest in technology (usually what I am drawn to), I must never forget that for some, access to insulin, diabetes supplies, education and support is incredibly difficult.

At ADA this year, there was no update session. Instead, the LFAC team gathered some of the advocates who were there so we could meet to discuss how we could continue to work together, through initiatives such as Spare a Rose, to raise funds for, and awareness of, the program.

L-R Dr Graham Ogle (General Manager LFAC), Grumps, Emma Klatman (Health System Reform Specialist LFAC), me, Angie Middlehurst (Deputy Manager & Education Director LFAC) and Manny Hernandez.

When I am writing and talking about LFAC, I usually do it in the context of asking – urging – people to consider making a donation. Around Valentine’s Day, the one rose = one month of insulin equation is repeated over and over again to highlight just how little it takes to make a difference to a young person with diabetes in a developing country.

But I’m not sure that everyone knows just how far reaching and important the work carried out by LFAC actually is, or how donations are used. Recently, they released their annual report, highlighting just some of their successes, and I thought I’d share some of them here.

To start with, last year LFAC helped over 18,500 young people from 40 countries.

Support offered by LFAC goes beyond just providing life-saving insulin for young people with type 1 diabetes. Other diabetes consumables, such as syringes and blood glucose monitoring kit is available. A1c checks are provided, providing baselines and ongoing data for centres in developing countries. Services such as education, workshop and resources are developed, translated and distributed, and support for healthcare professionals is offered.

In Haiti last year, 51 children attended a camp for children with diabetes – the first of its kind ever held in that country. (As someone who frequently speaks about the benefit of peer support, I know how amazing this would have been for the children who attended. Meeting other kids who instinctively ‘get it’ would be the same as the feeling I get when I meet and speak with others who are living with diabetes.)

LFAC also has an active research focus which is critically important in highlights aspects of diabetes, (including incidence, prevalence and mortality; cost of, and access to care; success of intervention and care-giving approaches; psychological impacts of diabetes), in young people in less-resourced countries. This research is vital in informing future programs, activities and services. LFAC research can be accessed here.

Life for a Child does all this and more, working towards their vision of a world where no child should die of diabetes. The fact that this should be their (or any organisation’s) vision – 97 years after the discovery of insulin – is heartbreaking.

Being a part of the extended Life for a Child family is one of the most important things in which I am involved. Writing blog posts and talking about the program sometimes seems like such a small thing to do, but I am committed to raising awareness of the issues faced by the young people the program helps, and raising funds so they can do more.

I have only touched on their important work, and despite the great achievements I’ve mentioned here and the number of young people benefiting from the program, there is still a waiting list for support.

Go here for details of how you can make a donation. Please. 

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.

I’m back from a very busy week in London and Copenhagen. I arrived back in the door at home exactly two minutes after Harry and Meghan got hitched, so I missed the whole happy occasion. If only we had some sort of magical way to see photos and videos and relive beautiful experiences like that. Oh well, never mind.

The main reason for my trip was for the kick-off meeting for Hypo-RESOLVE, a new four-year project focusing on better understanding hypoglycaemia. I’m there as part of the Patient Advisory Committee (PAC), which is made up of advocates from across Europe. Obviously, it is now legislated that an Australian also be included in any European diabetes advocate activities. I believe it’s called the Eurovision Law.

The project is made up of eight work packages, each led and staffed by leading European diabetes researchers and clinicians, and after seeing just who was going to be in the room, I suddenly was struck down by the worst case of Imposter Syndrome I have ever experienced. This didn’t get any better when I was told that the presentation I had been asked to give was not only for the PAC. No – it would be in front of all eighty project participants. I looked at the list of who I would be standing up and speaking to, and cursed the meme- and photo-filled presentation I had prepared, wondering if I could pretend to understand statistics and graphs, and add some to my slide deck to at least try to sound smart.

I decided to stick with what I knew (memes, cartoons, photos of weird hypo tales), and left the slide deck as it was, hoping against all hope that I would manage to keep myself nice, and sound as though I understood what I was speaking about.

I was asked to give a talk about the real life experiences of hypoglycaemia. Fortunately I have kept a pretty good record of the literal lows of my diabetes (which, incidentally, was the title of my talk). Thanks to the search function on Diabetogenic, I was able to easily pull together a number of stories about the lows I’ve had. This proved to be more useful than I realised because these days, lows are few and far between. Since I started Looping, I’ve not had the sort of low that has made me want to write about it and try to analyse what it all means in my diabetes life. In fact, I’ve not had any lows that have required anything more than a mouthful of juice or a couple of fruit pastilles to treat.

Reading back through my blog posts was actually really quite confronting, and I found myself getting emotional as I read details of terribly scary lows and how they had impacted on me – in the moment, and in the days following. As I read, I remembered the anxieties I felt about something happening while low that would seriously affect my family.

I’ve not asked them, but I wonder if the fact that I have so few hypos these days makes Aaron and the kidlet feel calmer about my diabetes. They still see me sucking on a juice box every now and then, but it is done without urgency, and without the look in my eyes that betrays the calm I used to try (and fail) to convey.

In my talk, I really tried to express just how significant hypos have been in my life with diabetes. I tried to explain that even once a low is ‘fixed’ there are often residual effects – effects far beyond just trying to work out what my glucose levels would do after playing the how-low-can-you-go-hypo-limbo.

I spoke about how the emotional fallout after a nasty hypo can be crippling, leading me to second guess every diabetes decision I made, wondering what I had done to cause the low in the first place – because that is the ongoing narrative of diabetes….we did something wrong to cause the hypo (or the complication, or the high, or the technology failure). And I really tried to explain how sometimes there are no answers, no matter how hard we look, or how desperate we are to find something to blame.

Of course I spoke about the language of lows and how the words we use impact on the way that hypos are considered. There is no doubt that ‘severe’ hypos are serious and need urgent attention and investigation, but so-called ‘mild’ hypos can be just as burdensome.

Obviously, everyone’s hypo stories will be different and I took great pains to clarify that I was speaking of my own experiences only. In the past, hypos have terrified, paralysed and alarmed me. I was afraid to sleep, I was afraid of lows when awake. I was scared I would have a particularly nasty low around my daughter and scare her. I am fortunate that my deliberate non-compliance has resulted in almost no lows, and feeling safer that I have ever felt before. My fear of hypoglycaemia is manageable these days, yet I don’t take for granted that it will always be like this. I still carry hypo food around with me – there is no point tempting the hypo gods by not being prepared!

I’ll be writing more about Hypo-RESOLVE in coming days. I’m so pleased to be involved in such an exciting and interesting project; I’m honoured to have been selected for the PAC. I’m beyond thrilled that PWD are included in the DNA of the project – right from the kick-off, not brought in at the last minute for comment when all the decisions have been made. And mostly, I am grateful that hypoglycaemia is being given the attention it deserves. I honesty hope that one day no one ever needs to feel the panic and fear that so many of us have come to know.

Kicking off the kick-off meeting (Click for source)

You can read all about Hypo-RESOLVE in the Innovative Medicines Initiative media release from last week announcing the launch of the project. My flights and accommodation to attend the Hypo-RESOLVE kick off meetings were funded from within the project. PAC members are volunteers on this project.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Words matter. Language matters.

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

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

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

I really love a good list. And twenty is such a lovely round number. Plus, I’m going to milk the twentieth diaversary thing for as long as I can. Or at least until I bore everyone. And myself.

On the day I was diagnosed, I was given a meter. It came in a padded navy bag and had a cream-coloured lancet device. The meter looked quite similar to a basic BGL meter today. And it took twenty seconds once the drop of blood was placed on the strip to countdown to give me my reading. I know, twenty seconds! Barbaric!

There have been a lot of advances in DTech in the last twenty years. Some of it has been incredible (CGM, Flash, advances in pumps, better insulins); some…not so much (hello GlucoWatch!). But either way, I’ve always been interested in the latest technologies and have wanted to get my hands on it as soon as possible. It’s not all been great. But I’ve always learnt something when I’ve tried something new.

So, here are twenty things I’ve learnt about diabetes technology.

  1. There is no one way to do diabetes technology. This fits into the My Diabetes, My Rules thing again.
  2. Diabetes technology does not only refer to the latest and greatest! It includes your BGL meter (even if you are using one from a few years ago!), your insulin pen, the app you use to track your glucose levels and food intake…
  3. And MedAngel!
  4. You don’t need to use the latest and greatest if you don’t want. If you are happy with using a BGL meter and MDI, keep going. AKA: If it ain’t broke, don’t fix it. Unless you want to. And then knock yourself out.
  5. An insulin pump is just a way to deliver insulin. That’s all it is! It’s a fancy way to do it, but it’s just an insulin delivery device. There are other ways to deliver insulin, so if you don’t want to pump, that’s perfectly okay.
  6. But if you do want a pump, learn to use it properly. I spent the first three years pumping not having a clue with what I was doing because I was trained by a rep from the pump company who just wanted to get in and out as quickly as possible. I learnt what the buttons did, but had no idea about anything else. I learnt nothing about carb counting, or how to make adjustments. My basal rates were wrong, but I couldn’t fix them because I’d never understood how to.
  7. That actually goes for any sort of technology. You won’t get the most out of anything if you don’t know how it works.
  8. So…find HCPs who know DTech, will support whatever you want to use, are up to date with the latest technology and are okay with you customising your devices to suit your needs.
  9. Once you find those awesome HCPs, listen to them. Learn the rules for your Dtech devices. And then break them to suit you. Being deliberately non-compliant only works if you know what you’re being deliberately non-compliant about!
  10. And further to that, after listening to your HCPs and reading all the official information and documentation, find out the truth about diabetes technology! Turn to your peers and learn how to use it in real life. I can honestly say that every single tip and trick I have learnt when it comes to DTech came from other people with diabetes. Peer support for the win!
  11. Worrying about how and where you will site wearable technology is not a frivolous thing to worry about. It makes perfect sense and it’s okay if that is something you are concerned about or if it’s the reason you’re wary about getting a pump, CGM or Flash glucose monitor. (But do ask around for tips in online groups to hear about how others manage – you’ll get some great ideas!)
  12. Just because you have decided to try something doesn’t mean you have to use it forever. If you decide that tech isn’t for you, put it away in a drawer, or pass it onto someone who wants to use it, and go back to what you were doing before. Or switch between the two. DTech is not like a puppy – it can actually be just for Xmas!
  13. Dtech may not necessarily make your diabetes easier to manage. Sometimes, it can feel like (and may be) more work – especially at first. Those of us who have been using different devices for some time can forget that.
  14. Just because one brand is the market leader and has the flashiest flyers, or your HPC wants you to use it, doesn’t mean that’s the one to go with. Look at all on offer and work out which one works best for you.
  15. And if colour is important (or anything else about the way it looks), and you’re using that as a factor when making a decision with which device to choose, that is perfectly fine!
  16. Diabetes technology is not a luxury item and don’t let anyone tell you otherwise. I once had a politician ask me when I was giving a presentation at Parliament House why it should be up to the Government to fund my ‘Mercedes Benz DTech’ when there was a perfectly suitable Hyundai option available. We had such a fun conversation after that…?!
  17. The playing field is not even. Some diabetes technology is expensive to use and out of reach of a lot of people. This is unfair. And sometimes, it’s really hard to talk about DTech access when people can’t access insulin.
  18. Going old school and analogue is perfectly fine if that’s what works for you. Sure, there are brilliant tracking apps (hello mySugr!), but if you really want to use a record book and pen, knock yourself out.
  19. DTech can be overwhelming at times. There can be a lot of data available all of a sudden and it is perfectly understandable if you find that it’s a little bit too much to manage.
  20. Don’t compare your glucose graphs to someone else’s. Their diabetes is not your diabetes.

Extra tip for good luck:

Just as you don’t need to use the latest in DTech, you don’t need to know all about everything new or emerging. But it makes sense to keep an eye out if you can. Find a trusted source that gives sensible information that is up to date. Some great places to start include diaTribe, Diabetes Mine and A SweetLife.

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