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

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

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

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


Peer support

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

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

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

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

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

Nothing about us without us

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

Food

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

Waffles in Brussels. Both were excellent.

More than numbers

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

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

Women’s health

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

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

Learning from and supporting others

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

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

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

Science. Science. Science

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

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

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

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

The whole person

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

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

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

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

And finally, language

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

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

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

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

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Recently, I was tagged in a tweet that asked for my thoughts on a discussion that was already in progress, and had started with this tweet from diabetes consultant Pratik Choudhary:

(Click for original tweet and to read discussion)

It’s a long thread (that seems to still be going), but it is worth a read to see some different perspectives and thoughts on the role of psychologists as part of the diabetes multi-disciplinary team.

I think that Pratik’s original tweet is right in that diabetes clinicians have a role to play in acknowledging diabetes-related distress and working with PWD by asking the right questions.

But just asking isn’t enough and rarely actually gets to the root of it all. Because unless we are asked and can understand why we are behaving a certain way, we don’t know how to stop it. Why do we feel guilty? Why do we feel that we need to be perfect in the first place? Why do we base so much of our own worth on numbers (TIR or A1c)?

But in the real world, I don’t think these questions are being asked, and there are myriad reasons that’s the case. Some clinicians wouldn’t have a clue what or how to ask. And then if they did, they’d struggle to know what to do with the answers. Only recently, I heard of a diabetes educator say ‘You just have to do it’ to a PWD who had opened up and said they were really not checking their glucose levels because they felt ‘over’ diabetes and simply unable to manage its significant daily tasks.

I nodded in recognition when I heard this story because that was me for the first three and a half years of living with diabetes.

Also, sometimes PWD feel too ashamed and guilty to admit the distress they’re experiencing to their HCP, instead promising to do better and check more and respond accordingly.  But do nothing of the sort.

That was me, too.

In the limited time we get with our diabetes HCPs, we seem to have a focus on numbers and basal rates and tweaking X and Y to make Z better. We are in diabetes mode because we know those minutes are precious and diabetes is what we are meant to be focusing on – even though diabetes may be so far down our list of concerns we sometimes (try to) forget we even have it.

Yeah. That has been me too.

Even though I have an endocrinologist who asks the right questions, doesn’t fill those silences where I am looking for the right words, is encouraging and supportive and never judgemental, and understands that diabetes-related distress can be paralysing, she was not who I needed to get through those times. I love that she knew that.

She also knew that no matter how many SMART goals we set together, and even if I said that I would be able to do them because I could see they were achievable and completely not unrealistic, until I had a mental health professional work with me there was no way I was going to do them.

One of the first things she did when I started seeing her seventeen and a half years ago was refer me to a psychologist. The guilt that I was feeling about the imperfect numbers – or the lack of imperfect numbers because I was barely checking them, was steeped in a complex and convoluted mess. I needed a mental health professional whose expertise was to help guide me through it all and show me how to get things sorted.

THAT was what I needed at that point in my diabetes life…and numerous other times since then too.

For me, there has always a lot to the cause behind my diabetes-related distress, and speaking with many of my peers, they would say the same thing. I didn’t understand that it was okay for me to grieve my life before diabetes. I could remember it well – the days of not needing to think diabetes, breathe diabetes, sleep diabetes. My life was different post-diagnosis, but the recurring messages I’d heard was that diabetes wouldn’t stop me and I should just get on with life.

Well, I have done that. But that doesn’t mean I didn’t need time to mourn the days where I didn’t do all that. Having someone help me where diabetes now fit in my life was essential to clearing a path for me to actually make diabetes happen. And for the record – I’ve needed counsel with this several times because diabetes’ place does change around depending on other things in my life.

So where does a psychologist fit in the diabetes health professional equation?

For me, it must be as part of any multidisciplinary team.

I’m not sure that the day I was diagnosed would have been the right time for me to have an appointment with a psychologist (but let’s be honest, it would have been no less helpful that the dietitian and her rubber food moulds), but I certainly do wish that I’d know that having someone to talk about my mental health was a sensible thing for when I  needed it, and given clear directions about how to go about getting an appointment. I was told about the eye specialists and podiatrists that would be part of my future team, but no one thought to mention a mental health professional.

It shouldn’t have taken almost four years – four very difficult years in a lot of ways.

Over the years, seeing a psychologist has helped me with my diabetes management enormously. Those times when diabetes has terrified me to the point of paralysis and inactivity, the times where I wanted to blame diabetes for other things going on (because it is there and I generally don’t like it so it’s convenient to point my finger at it!), the times when the uncertainty of diabetes and the fear of what lies ahead, or the times when life overall has felt just too big and scary and diabetes just doesn’t get a look in … I have benefited from having a mental health professional to work with. In fact, I doubt that I would see diabetes is the way I do now without that support.

There is so much more to managing diabetes than simply doing diabetes. And there is more to diabetes distress than just acknowledging that it is there. Having diabetes specialists who understand about distress is valuable. But I really do think that understanding it ourselves, being able to identify warning signs, and developing sustainable strategies to deal with it any time it comes back needs the expertise of a psychologist.

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

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

New Yorker Cartoons.(Click for image details.)

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

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

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

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

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

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

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

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

NOT talking about them makes them seem shameful.

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

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

 

I’m heading to Sydney this morning (it’s early…too early) for the Australasian Diabetes Advancements and Technologies Summit – ADATS, (follow along at #ADATS2018), which had me thinking about the conference last year where I spoke about Loop, scared a shitload of HCPs, was almost traumatised into never speaking again in public (almost – didn’t happen) and was happy to be branded non-compliant.

Today will be a far gentler experience – my role is as a member of the organising committee, and as a session chair. Surely no one will want to sue me for that. Right?

As I ponder that, and reminisce about last year’s talk, here are some links. So many links that I have been wanting to share. So, have a cuppa, have a read, and share stuff.

Also, being deliberately non-compliant is kind of fun…

(Disclosure first: My flights from Melbourne to Sydney are being covered by the National Association of Diabetes Centres (NADC), the organisers of ADATS. I am on the organising committee for the conference.)

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Finally DIYAPS makes it to the mainstream media in Aus

I’d heard of The Saturday Paper, (which was a surprise to the journalist who interviewed me), but apparently not all that many people have. It’s a weekly newspaper (somewhat unimaginatively named – it’s a paper and comes out each Saturday) with long-form articles. One of those articles was about DIYAPS and came about after journalist Michele Tyde heard about the Diabetes Australia DIYAPS Position Statement.

Read the article here.

Read the DIYAPS Position Statement here.

The body part is connected to the PWD

‘Talking about the “diabetic foot,” the “diabetic kidney,” or the “diabetic eye” suggests they are somehow separate from the person whose body actually hosts the diabetes. This language suggests the diabetes-complicated body part is more like a malfunctioning car part that needs service – if only we could be provided with a courtesy foot, eye, or kidney to use until our own is better!’

The language at ADA this year (all the way back in June…all the way over in Orlando) didn’t really set off too many alarm bells. Until we had a good look at the program. I wrote this piece with The Grumpy Pumper for diaTribe about how it seems that #LanguageMatters a whole load less when talking about diabetes-related complications…and that needs to change.

Conference blogs

It’s great to see the Ascensia Diabetes Care team continue to support diabetes bloggers by inviting them to write up their thoughts on diabetes conferences. The latest contribution is from Sascha Stiefeling (who blogs at Sugar Tweaks) where he gives some insights into the start of EASD. (It was written in German and translated into English.)

Oh – and here’s the post I wrote for them about the Australasian Diabetes Congress a couple of months ago. (I was not paid to write this, or supported by Ascensia to attend, but I did work with them on their Social Media Summit.) 

No weakness at all

On Mental Health Awareness Day this year, UK writer and poet David Gilbert wrote this beautiful post about the strength – not weakness – of living with mental illness.

How we are wrong about obesity

This piece about obesity is a must read. It talks about how weight bias from healthcare professionals and stigma often results in higher weight people avoiding going to the doctor because they fear discrimination, not being believed and being shamed.

More on weight stigma

And read this piece (also on diaTribe) about how weight stigma hurts people and affects health outcomes.

Keep Sight

This week, Diabetes Australia officially launched the first ever national eye screening program, Keep Sight. The program will make it easier for Aussies with diabetes to get their eyes checked. You can read about the program here (from when it was announced back in July).

Disclosure: I work at Diabetes Australia, but was not asked to write about this program. I’m doing so because it is important.

Your story is important

True champion of listening to ‘the patient’, Marie Ennis-O’Connor wrote this wonderful piece about the power of storytelling in healthcare.

Always be kind

I’m always fascinated to read stories from HCPs who write about their experiences on the other side of healthcare. Moving from care-giver to the one needing care can be life-changing. In this BMJ Opinion piece, health researcher Maria Kristiansen writes about how important compassion and kindness from healthcare professionals were for her and her family during her young son’s illness and death.

More on kindness (because we can never have enough)

The first sentence of this article in BMJ by Dr John Launer had me hooked: ‘I’m not a clever doctor, but I’m a kind one’. Have a read.

Diabetes in hospital

I know I’m not the only one to be terrified of needing to go into hospital, worrying about a lack of knowledge about type 1 diabetes treatment and my technology, and having to fight to maintain ownership of my own diabetes care. Adam Brown at diaTribe has written about his recent trip to A&E, surgery and subsequent recovery after his appendix ruptured. Lots of great tips for anyone who may wind up in hospital.

Digital diabetes

How can digital medicine and research, and artificial intelligence transform diabetes? That’s the question research scientist in diabetes, Dr Guy Fagherazzi, asks in his (open source) review in Science Direct that you can read here.

Bake these!

And finally…It’s nearly the weekend and if you have a spare 20 minutes, you really, really should think about baking these! They are crackled parcels of molasses, spice and all things nice and are, quite possibly, one of the best things I’ve ever baked.

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. 

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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

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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

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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.

There were some really important and impactful sessions in the Living with Diabetes stream at #IDF2017 in December last year, but perhaps one of the most significant was the final session. Chaired by Professor Jane Speight, the session was titled ‘Diabetes and mental health: distress, diabulimia and emotional wellbeing’.

Talk about finishing with something to get people thinking and talking!

Bill Polonsky kicked off the session with a talk about how emotional wellbeing is affected by diabetes, and offered some ideas for addressing these issues.

(Can I just say what a stroke of genius it was to have Jane Speight and Bill Polonsky on stage together?! To have two champions of diabetes behavioural psychology in one place was definitely a highpoint of the Congress, and anyone who chose to go to a different session missed out. Big time! … Credit where credit is due to us all, Manny, Mary, Hakeem and Kelly!)

The session ended with Erika Backhoff from Mexico who gave an outstanding presentation on diabetes distress and the importance of appropriate training and understanding of the difference between diabetes-related distress and depression.

But for me, the highlight of the session – and one of the highlights of the entire stream – was Georgie Peters speaking about diabetes-related eating disorders. (Georgie writes a great blog that you can read here.)

Georgie began by sharing her own story of insulin manipulation. I’m not going to write anything about this part of Georgie’s talk, because you can see and hear it all here. (You’ll need to have a Facebook account to view it.)

Often, when people speak about living with a health condition, they are called ‘brave’. I absolutely hate it when people refer to me as brave because I live with diabetes (and all that comes with it). I’m not brave, I’m just doing what I need to do to stay alive.

But Georgie WAS brave and I’ll explain why.

Often, when we hear from people living with diabetes, what we hear about is people conquering mountains (literally and figuratively). We hear tales of the super heroes running marathons and winning medals. These are the socially acceptable stories of living with a chronic health condition: the ‘I won’t be beaten’ anecdotes. They give hope, are meant to inspire and make those not living with diabetes feel better about things because suddenly, it seems that this health condition is manageable and everyone with it is a champion.

But the reality for most people with diabetes is the same as most people with diabetes – we don’t run marathons, we don’t climb mountains, we don’t win gold medals. We are just doing the best we can with the hand we’ve been dealt. And sometimes, we deal with difficult stuff.

Sharing stories of the tough times and the challenging things that often go hand in hand with diabetes is not always easy – for the person sharing the story or for those reading or listening to them

But perhaps that’s exactly why we do need to hear about these stories, and ensure stories like Georgie’s are heard and given a platform.

Just because something is difficult or uncomfortable to listen to doesn’t mean that it should be hidden. This is why people don’t seek the care and assistance they need. It’s why people think they are the only one’s struggling and why they don’t know where to turn.

I could see some people in the audience shifting uncomfortably in their seats as Georgie eloquently, determinedly – and completely unapologetically – shared her experience and, most usefully, offered suggestions for how to work with people with diabetes and eating disorders. I know that I left with a far better understanding of the topic. And an even more resolute desire to keep these types of issues in the public domain.

Disclosure

I was the Deputy Lead for the Living with Diabetes Stream, and an invited speaker at the 2017 IDF Congress. The International Diabetes Federation covered my travel and accommodation costs and provided me with registration to attend the Congress.

Georgie owning the stage at #IDF2017

 

 

 

At #DX2Melbourne last week, we had a live webcast in an attempt to include people not invited to be part of the event to hear from some of the bloggers and contribute to the discussion. The hour-long webcast was about diabetes and mental health.

With delusions of Jenny Brockie and Tony Jones, I facilitated the discussion – which was actually quite difficult as there were thirteen of us sitting in a row meaning we couldn’t all see anyone other than who was sitting directly next to us without leaning dangerously forward. Also, I kept nearly falling off my stool, which suggests that I am the most ungraceful creature to have ever been positioned in front of a camera.

I’d put together some questions and discussion points to guide the discussion, but was very open to any tangent the group wanted to take to really navigate and explore the topic of diabetes and emotional wellbeing.

As the discussion flowed, I couldn’t help but feel a sense of déjà vu. Another talk about how diabetes affects us emotionally; another talk about not getting the support from psychologists and counsellors that we need; another talk about how usually it’s not even recommended that we may need to speak with someone about the mental health aspect of living with a chronic health condition; another talk from well-connected diabetes advocates saying that there is more to diabetes than simply being told our A1c, or any other number for that matter.

Amongst all the chatter, I asked myself how many times I’d participated in talks, how many talks I’d given, how many tweet chats I’d tweeted in, how many blog posts I’d written that were about the emotional side of diabetes. And then today, on my TimeHop app came this tweet, from an OzDOC tweet chat about mental health, held exactly 12 months ago today:

I’m not saying this because I think we’ve ‘done’ this topic and should leave it alone now. Not at all. I’m just suggesting that we’ve been having the same discussions about this really important topic for a long time, and yet diabetes care still seems to have this imaginary, yet somehow real, line down the middle, with the physical aspects of diabetes to one side, and the emotional aspects on the other as if the two are not fundamentally connected.

I knew that there would be some people listening in who would be hearing all of this for the first time. It would be the first time that although they had probably worked out that there was something missing from their diabetes care, they weren’t sure what it was. Or, they may have known they needed to speak to a psychologist or a counsellor, but didn’t know who to ask about it…and anyway, they may have thought, surely if this was something that lots of people with diabetes feel, someone would have mentioned it by now, right? Right???

Nineteen years I’ve had diabetes. And for at least seventeen of them, I’ve understood and known the importance of checking in on how the emotional impact of diabetes is contributing to how I am managing my diabetes. Or how I am not managing my diabetes (see above tweet….).

The idea that we can separate our mental health and emotional wellbeing from our diabetes is ridiculous. A condition that permeates every aspect of our life, moves in, makes itself a home and lords over us with terrifying threats of what lies ahead, impacts on our abilities to manage the day-to-day physical things we need to do.

Those watching the webcast at home could submit questions for the panel. A couple of diabetes healthcare professionals were watching and one asked a question that, as I read it, made my heart sink. He said that he sees people with diabetes who he believes would benefit from seeing a psychologist, but he is concerned that they will be offended if he suggests it. He asked the panel for ideas on how to broach the subject without causing offense.

Why did my heart sink? Because the question showed that there is still so much stigma associated with seeing a mental health professional, that other HCPs – on the ball, sensitive ones who know and understand the intersection between diabetes and mental health – feel worried that they might upset someone with diabetes if they suggest referring to a psychologist.

Until we normalise psychological support – until at diagnosis when we’re introduced to our new diabetes HCP best friends and psych support is part of that team – the stigma will continue. I’m not suggesting that everyone will need or want to see a psychologist. But putting it on the list, alongside a dietitian and a diabetes educator and an eye specialist will at least people understand that, if needed, there will be someone there to help with that particular piece of diabetes. (And to be perfectly honest, I really do wish I’d seen a psychologist at diagnosis rather than the dietitian who has scarred me for life with her ridiculously large rubber-mould portions of carbohydrate she insisted I eat at every meal!)

I don’t feel as though I am a failure because I have needed to consult a mental health professional in the past. I don’t think that it suggests that I can’t cope or that I can’t manage diabetes. I see it as important a part of my diabetes management as anything (and anyone) else. A lot of the time, I don’t feel as though I need to see someone. But other times, I do. And that is fine.

DISCLOSURES

Abbott Diabetes Care covered all my costs to attend #Dx2Melbourne, and provided all attendees with two FreeStyle Libre sensors and, if requested, a scanner. There was no expectation from Abbott that I would write about the event or any of their products, and everything I do write about it is my opinion, in my own words, and in no way reflects those of Abbott – or anyone else, for that matter.

It’s day four of the eighth annual #DBlogWeek, created by Karen from Bittersweet Diabetes. This is the sixth year I’ve taken part and it’s a great opportunity to not only write about some truly interesting topics, but also a chance to read some blogs you may not otherwise.  Here are the links to today’s posts.

 

Today’s prompt: May is Mental Health Month (in the US) so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?

One of the things I’ve found about living with diabetes is that the way I respond to certain situations is inconsistent. Some days, I’ll look at a rollercoaster CGM trace, shrug my shoulders and think ‘That’s diabetes!’ and move on. Other times, I’ll look at a similar rollercoaster CGM trace and burst into tears, wanting to curl up in the corner under a quilt, asking ‘Why? Why? WHY?’ while someone brings me a cup of tea and Lindt orange chocolate.

There are periods when my resilience stores are high and I can manage anything thrown at me, and other days where the smallest diabetes issue sends me into a spiral of despair. The unpredictability of diabetes is matched only by my own haphazard responses.

There do seem to be some things that do get me down pretty much any time they happen. When diabetes starts to affect my family, making my health issue theirs, I get very emotional and upset. I think it is probably a combination of sadness, guilt, anger and frustration that guarantees an emotional response.

The unknown of diabetes worries and scares me. I don’t think about it most of the time – I guess that is how I cope. The fears and anxiety are neatly packaged up and hidden away, brought out only in moments of weakness – or perhaps when my resilience is low.

Earlier this month, when I was an invited speaker at the Primary Care Diabetes Society of Australia (#PCDSAus) conference, and in the same session as me was Dr Christel Hendrieckx from the Australian Centre for Behavioural Research in Diabetes. Christel was very clear that clinicians need to consider diabetes and emotional health side by side as the two are undeniably connected.

I truly think that when we break it down, we can’t separate the two. When we live with a condition that is so ever-present; that we invest so much of our time and energy into managing; that we can’t put in a box when we are feeling over it and come back to it when we feel more equipped, it’s impossible for it to not impact emotionally.

We, all too often, draw a line with the physical on one side and the emotional on the other side. That line is terribly blurred – if it’s even there at all – when it comes to diabetes.

I’m still getting my head around the #HealtheVoicesAU conference – there was so much that happened over the event that it’s taking time to write about it all and really nut out what I took away from each session. (Previous posts here and here.)

When I looked at the program, I was probably most excited to hear from Nick Bowditch. I knew nothing about Nick other than what the program told us: He is the only person in Asia Pacific to have worked at Facebook and Twitter; he’s an entrepreneur who helps small businesses here and across the globe shape their online presence. And his personal health story is that Nick is a mental health advocate as someone who has lived with depression for many years.

I knew Nick’s talk would have lots to offer, and title of his talk that had me excited: ‘The Art of Storytelling’.

I’ve written before about why I love story tellers and story-telling. And telling my own story. It’s reading and hearing the stories of others with diabetes that helps put in context my own experiences. Others’ perspectives shape my own and I learn so much from how others deal with the clusterfuck that diabetes can be.

The first slide Nick showed us was of the wonderful Jamaa el-Fna in Marrakech. He told us how he spent an evening captivated in the square. There amongst the snake charmers and the men walking around with monkeys on leads and the little girls selling tissues and the vendors hawking fresh orange juice, were story tellers. And although he couldn’t understand a word they were saying, he was enthralled as they animatedly told their stories.

That’s the beauty and magic of a good story teller – you don’t necessarily need to understand the detail; just getting the gist of the tale is enough.

And then, Nick gave us the snapshot of his story. In a nutshell, he told us this:

Slide from @NickBowditch

It’s easy to make assumptions and think that you know what Nick might be living with if you see that list. But you’d probably be wrong. I know I certainly was. My initial ideas of what life must be like for Nick were turned on their heads as he put into context what each of the above aspects of his life actually means to him:

Slide from @NickBowditch

By turning our assumptions on their head and reframing how he lives with mental health conditions shows us that Nick is not ‘just coping’, he’s living. His words were: ‘These are not my defects. These are my superpowers.’ And it challenges us to reconsider our preconceived ideas. I know that those of us who speak about diabetes often challenge what others think.

The image of T1D being all about kids and needles and blood is not really what it’s about for me. And the far-too-easy idea that T2D is all about older, overweight, inactive people is wrong too.

When we tell our stories – and reframe the narrative – the truth comes out.

Possibly the most powerful thing Nick said was this: ‘Telling the truth is not brave. It’s easy. The hard thing is not being authentic.’ We’d come full circle back to the first speaker of the day who implored us to find authenticity in what we were saying. And it reminded me of why I have always been an advocate of having people with diabetes sharing their stories in any forum where people are talking diabetes: the legitimacy of lived experience cannot be found in any other way than actually having someone tell their story.

I see first-hand the power that having a person with a health condition stand alongside a healthcare professional and put into context the theory and research that they have just presented.

There is an art to storytelling. We do it every day that we tell our story. We do it every time we put words on a page for a blog post, or in a diary or in a letter, ot when we stand up and tell it like it is. Some do it far more elegantly and eloquently, but the things is; it doesn’t matter. As long as we’re authentic.

DISCLOSURE

Thanks to Janssen (the pharma arm of Johnson and Johnson) for covering my travel and accommodation costs to attend the #HealtheVoicesAU conference. There was no expectation by Janssen that I would write about the event and everything expressed here (and on Twitter Facebook and other social feeds) is mine and mine-alone! To read more, check out the conference hashtag, #HealtheVoicesAU, on the socials. 

It’s day four of holidays for me. Already lazy mornings, easy days and gentle plans to meet up with friends and family are clearing my mind, and I can feel the backlog of stress and exhaustion – the things that are part of everyday life – start to make way for sharp thinking and smarter decision making.

And in terms of diabetes this means more attention paid to alarms and alerts on my various devices: the calibration alert on my phone for my CGM gets attended to immediately, the low cartridge reminder on my pump is heeded at the first warning. I stop and think before blindly acting, and calmly troubleshoot as I go along.

My head is clearing. I am starting to think about diabetes the way I like, at a level that feels safe and sensible and manageable.  I make rational decisions; I take the time to fine tune what I am doing. Diabetes has a place that is comfortable, I feel better overall and far more capable of ‘doing diabetes’.

miles-study-2-logo-hires-land-colour-e1426127802906Earlier this week, the findings from the Diabetes MILES-2 study were launched. (Quick catch-up: MILES stands for Management and Impact for Long-term Empowerment and Success and is the work of the Australian Centre for Behavioural Research in Diabetes (ACBRD). The first MILES survey was conducted back in 2011, with over 3,300 Australians with diabetes taking part. The MILES Youth Report was launched in 2015, reporting the experiences of 781 young people with type 1 diabetes and 826 of their parents. This study formed part of the NDSS Young People with Diabetes Project for which I am the National Program Manager.)

The MILES reboot (Diabetes MILES-2) once again provides a snapshot of the emotional wellbeing and psychosocial needs of Australian adults living with diabetes. Over 2,300 people participated in this study and the results are comparable to those from the first MILES study. The Diabetes MILES-2 survey included the addition of some issues that had not been investigated in MILES, such as diabetes stigma.

Some key findings from the report include:

  • 17% of survey respondents had been diagnosed with a mental health problem at some point of their life
  • The respondents most likely to experience moderate-to-severe depression and anxiety were those with insulin treated type 2 diabetes
  • The respondents most likely to experience severe diabetes distress were those with type 1 diabetes
  • The aspects of life reported by all respondents as being negatively impacted by diabetes included emotional well-being (for those with type 1 diabetes) and dietary freedom (for those with type 2 diabetes)
  • More stigma was experienced by people with type 2 diabetes using insulin as compared with people with type 2 diabetes not using insulin

Anyone affected by diabetes knows that the psychological and emotional side of diabetes is as much a part of the game as the clinical tasks. In fact, for me, it is the most difficult to deal with. What’s going on in my head directly affects how the I am able to manage the practical side of the condition.

When my head is clear – the way it is slowly, but surely becoming as I settle into holiday mode – and I have time and space to rationally think about, and focus on diabetes, the routine tasks seem manageable. The numbers present as nothing more than pieces of information: they allow me to make decisions, act, or not act. I am able to be practical and seem to have my act far more together.

But for the most part, diabetes is not like that for me. I don’t manage my diabetes the way I want and that is mostly because I am simply unable to due to the distress and anxiety I feel about living with a chronic health condition that terrifies me a lot of the time. I feel overwhelmed and, in the mess of life, diabetes becomes impossible. I am not proud of this – but I am honest about it.

If I am perfectly truthful, there is nothing in this report that surprises me. But it does provide validation for how I am feeling – and how many others with diabetes are feeling too. And I am so pleased that there is evidence to support what so many of us who live with diabetes feel.

It’s no secret that I am a very big fan of the ACBRD’s work. Diabetes MILES-2 once again shines a light on the ‘other side’ of diabetes and serves as a reminder that unless the psychosocial side of living with this condition is addressed, we simply can’t manage well the physical side. And it forces those who want to believe that diabetes is a matter of nothing more than numbers and mathematical equations to consider the emotional wellbeing of those of us living with diabetes each and every day.

The MILES 2 report can be read online here.

 

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