Diabetogenic

I feel diabetes

July 19, 2018 in Diabetes, Real life, Wellbeing | 3 comments

I don’t get hit for six by diabetes much anymore. (Before we go on, please applaud that sport-ish reference there. I really must be growing as a person.)

Those days that would almost be a write-off thanks to a hypo that moved in, set up house and then wouldn’t clear out for hours, or hypers that made me think my insulin had turned to water and made my head so foggy and cloudy and stormy (all the weather analogies), just don’t seem to happen these days. I don’t have nights spoilt by erratic glucose levels and I don’t feel the hangover of lows and highs the way I once did.

This is all good news.

The daily impact of diabetes – both physically and emotionally – has diminished considerably and for that, I am eternally grateful to the magicians who have made Loop available to technology-fools like myself.

But this week? This week, diabetes has reared its ugliest of heads and I have been hit for six. My post the other day was called ‘Waking the beast’ and I think perhaps that is what has happened here. Except the once familiar beast is different now. It’s mutated into something I don’t recognise, and don’t know how to manage.

I don’t even have a word for what it is that is going on right now and if I’m perfectly honest, I don’t understand it. I thought that after my appointment with my endo and my ‘all is well’ complications screening conversation I’d be back to feeling less burdened and less fraught.

Yeah; about that. I was wrong. I certainly did feel lighter as soon as I left my endocrinologist appointment the other day…at least, I did for a few hours. (I even wrote about it!) And then I didn’t.

This week, I’ve found myself lying awake late into the night, thinking about diabetes and the scary things that I really don’t like to think about. During the day mind wanders to that dark place in my conscience, and I feel my breath catching and my heartbeat quickening for no reason.

As I lie awake at night, or am alone in my car driving to work, or standing in the kitchen preparing dinner, I suddenly feel diabetes in my body, flowing through my veins, being absorbed into my bones, twisting itself into my brain. And it’s been winding itself into my dreams when I finally do fall asleep.

What is this? It’s not burnout. To be honest, I do so few diabetes tasks these days that it’s not about being overwhelmed by daily diabetes. I am not ‘over’ diabetes. I don’t even feel that I hate it.

Perhaps the reason that it doesn’t make sense to me is because I can’t point to something and know what I need to fix. This isn’t a matter of needing to do some basal tweaking, or adjust what I am eating, or pre-bolus a little sooner. This has nothing to do with day-to-day diabetes. This is beyond that. This is deeper than that.

I feel diabetes – in, around and through my body and mind. This is within the very core of my diabetes. And the very core of me.

This photo I took at MONA last month of Pat Brassington’s ‘Cornerstone’ seemed a perfect image to accompany this post. (Click for more details of the artist.)

Revisiting: the term ‘carer’

July 18, 2018 in Communication, Diabetes, Family, Real life | 6 comments

A few years ago, I wrote this piece about why I am uncomfortable with the term ‘carer’. (I’m sharing it again below.) I often think about the word around Kellion Medal time, because there is a certificate given to ‘carers’ of medallists.

This is a lovely part of the ceremony, and acknowledges that diabetes can indeed take a village. Usually, the ‘carer’ is the partner of the person receiving the medal. Sometimes, it is a parent, sibling or other close relative. Other times, it is a healthcare professional.

Carer is a word with a broad meaning. It encompasses a wide range of situations and responsibilities.

As I said in the original blog post, I don’t believe that I have a carer. Aaron certainly supports all my efforts with my diabetes, is a wonderful cheer squad and knows when to mutter ‘Diabetes Sucks’ when I am feeling a little over the whole thing. I feel very fortunate to have him do that.

But carer? Nope.

It got me thinking to what I would want if (when?) I stand up to receive my Kellion medal. In thirty years’ time, I hope to proudly stand up there and appreciatively receive my medal. And in the room, I would want those near and dear to me, celebrating the milestone. I would certainly want to thank them for having lived alongside me as I lived with diabetes for so long.

But the word carer does not really adequately describe that role. And yet, I don’t know the word that does – or even if there is a word…

Words matter – so what is the right word?

So, please help me out! If you are an adult with diabetes, do you have a word you use to describe the people who support you? Are you comfortable using the word carer? Do you prefer to use something else? Or nothing at all? (Fifth option: Never even thought of it. Get over yourself with your language palaver, Renza!)

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I am lucky when it comes to my diabetes support network. I know this and I will say it several times in this post. I also know that I am likely to come off as being ungrateful which is not the case at all. Today, I want to explore the idea of how these support people are identified, either by themselves or by people living with diabetes. Specifically, I want to talk about the term carer.

The Oxford Online Dictionary defines carer as:

a family member or paid helper who regularly looks after a child or a sick, elderly, or disabled person.

I don’t have a carer. I am the person responsible for living with my diabetes, but I do not have a disability and I certainly don’t consider myself sick. And, although I’m pushing a ‘significant age’ I am not yet elderly.

I understand and completely believe that there are people who are really and truly carers. There are people who are responsible for feeding, toileting, bathing, communicating for another who is unable to do it themselves. I am not referring to instances like this. I am referring to, I guess, diabetes.

I don’t consider my husband, who is involved in my life with diabetes to be my carer. He’s my husband, my partner.

Living with diabetes is not a solo game for most and this is a truly wonderful thing. We get support and help from people and I for one feel very fortunate to know that I have people (family, friends, healthcare professionals), I can rely on if I need them.

But I don’t consider any of them my carer. I would refer to them as my support network. In the case of my HCPs, they’re paid to help me with the things I need.

My husband would never say that ‘we’ are a family with diabetes. He would say that I (his wife) have diabetes. Not for one moment would he consider himself to be living with this condition even though he regularly is part of it. But as far as ‘ownership’ goes, it’s mine. He will step up as much or as little as I ask and in the few times it’s been necessary, he’s taken over, done what’s needed to be done and then, when safe, stepped back.

My independence and confidence in my ability to self-manage comes from being given the space from those around me to do what it is I need to do. I know there have been times when Aaron would like to sit me down and force feed me glucose because he can see that I am low. As I stand at the open fridge and in my hypo-fog state try to calculate the carbs in a cucumber (yes, I know!) he has had to just step back and let me work it out myself, stepping in if asked.

I see this like watching my daughter do something in a way that is frustrating to me. I would love to jump in, show her how to do it far more effectively (or do it myself) and then move on. But her self-confidence and her ability to trust her decision making process needs to be encouraged, not overshadowed by a parent who insists on taking over all the time which suggests that she cannot do anything herself.

To me, the term carer implies helplessness. I get that diabetes is a lifelong condition and that there are stages in a person’s life when they may need extra care. For example, children with diabetes are reliant on their parents for the day-to-day management tasks. But is that being a carer or is that called parenting albeit with an incredibly extra degree of difficulty? Or what about an adult with diabetes who is having a period of hypo unawareness and their partner is required to, at times, inject them with glucagon? Is this being a carer or is this just doing what partners do – look after each other at a time of illness or need?

What about when I am lying in bed, unable to move because my BGL is high, I have mild ketones and am vomiting? As I decide whether or not I need to take myself off to A&E, my husband is holding a bucket in one hand and my hair in the other. I don’t consider him to be my carer, any more than I considered myself to be his carer when he hurt his back and I was warming up a heat pack and giving him pain killers every four hours.

I don’t in any way want to undermine the importance, help or value of the support I receive. I don’t for a minute want to say that I don’t need it or resent it. But equally, I don’t want to be considered as being helpless. The relationships I have with people where diabetes is sometimes considered are based on incredible respect – from both parties. They respect that I am the one who is living with this and dealing with it and I respect the way they allow me to do that.

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Thanks to Ash for chatting with me over coffee about this today.

Waking the beast

July 17, 2018 in Complications, Diabetes, HbA1c, Healthcare team, Real life | 2 comments

I had an endo appointment yesterday. It was my first in over six months, but this was by choice, rather than inattention. Last November, I decided that I really didn’t need a three month follow-up appointment, and my endo agreed. So, after settling my account for the visit, I made an appointment for May this year. A work trip to Copenhagen via London necessitated a reschedule and this was the first appointment time available that worked for me. The six month follow-up timeframe was pushed out to eight months.

Early last week, I called for a pathology request to be sent to me so I could have a blood draw before heading in. While I had a list almost as long as my arm of things I wanted to discuss, I really am trying to stay on top of having regular screenings so that we can compare results year to year.

Clearly, I am in a really good headspace about my diabetes and, in particular, diabetes HCP care, at the moment. I am happy to attend appointments. Even though I needed to cancel the May appointment, I made a follow up and kept it. I had all my bloods done beforehand. This is a far cry from how I was just a couple of years ago … when actually, I was crying just thinking about it all.

So, last Thursday, I made my way to a local pathology clinic, my request slip scrunched tightly in my hand. And I realised that even with my generally low level of worry about all-things-diabetes, I felt my anxiety levels going up in the days leading to, and the day of, the blood test.

‘I’m nervous about having my A1c done,’ I said to someone last week, and, puzzled, she asked why. It was a sensible question to ask, because truthfully, of all the things I was being checked for, that was the one that I had a pretty good idea what the result would be.

I estimated my A1c and got it right to 0.2 percentage points. The truth is, I am totally ambivalent about A1c. I couldn’t care less about the number because my TIR is where I want it, and I knew this would be reflected by a way-in-range A1c number. (I take no credit for it – it’s all Loop.)

But my kidney function? My cholesterol? My thyroid function? Coeliac screening? Everything else? I have no idea how they are tracking. There is no app on my phone to remind me how I going with those, or helping me guess what they me be. I have no Loop for my kidneys!

I realised that was the source of the anxiety, not my A1c, even though that’s where I was pointing. I guess that makes sense: feeling nervous about A1c results is expected and easy to explain. But the truth is that wasn’t my I was feeling uneasy.

Those complications screenings that I am diligently trying to make sure I have annually still terrify me. Both in the lead up to having the checks done, and then as I wait for the results.

The beast of diabetes that lives within our very core behaves in different ways. Often it is slumbering, lying almost dormant, lulling us into a false sense of all is well. I guess that is how I have felt since I started looping. I say that I am the least burdened I’ve ever been my diabetes because my diabetes is not thrashing around and making itself known so much. But this last week, it has started to wake, reminding me of its presence. I have felt diabetes more in the last week than I have in the last ten months.

I tried to describe this to a close friend the other day – a friend who has seen me live through some pretty horrid diabetes times, and celebrate some damn fine ones. She asks sensible questions and is always listening and learning. She gets it. But she struggled to understand how I could move from saying I’ve felt the best I have ever felt in relation to my diabetes to suddenly speaking of the anxieties that I hold so deep; especially when nothing had changed.

It’s the unknown. It’s the waiting. It’s the fear of what I may be told. That is the beast.

Today, the lightness in my step and in my heart as returned. The appointment went well, the results showed little, if any, change from the last screening checks. I am back to feeling the way I was before last week. After stirring, and stretching, the diabetes beast has curled up and resettled, and is hibernating again. At least, for now…

Waiting with diabetes

New week

July 16, 2018 in Advocacy, Awareness, Diabetes, Diagnosis, Social media | 2 comments

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.

Will this report equal better care for people with diabetes?

July 13, 2018 in Awareness, Diabetes, Diagnosis, HbA1c, Health, Healthcare team, Real life | 1 comment

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:

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.)
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.
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.

Diabetes and sexual orientation – a time to rethink

July 12, 2018 in Awareness, Diabetes, Guest post, Health, Healthcare team, Mental health, Real life | 8 comments

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:

Not all people are the same.
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.
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.
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.

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.

‘That’s a lot of diabetes…’

July 11, 2018 in Awareness, Diabetes | 2 comments

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.)

Outside the echo chamber

July 10, 2018 in Awareness, Diabetes, Diagnosis | 2 comments

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.

Where’s Drew?

July 5, 2018 in Diabetes, Peer support | 5 comments

Dear Channel 9

Hi. You don’t know me, and to be perfectly honest, I don’t really know you either. My TV tastes run less to the sensationalist and more to the Netflixist, but nonetheless, here I am writing to you.

You see, I want to talk about Drew Harrisberg for a minute.

So, I work for a diabetes organisation and as a diabetes advocate, and one of the best things about my work is that I get to meet people with diabetes from all over the world and from all walks of life.

One of those people is Drew Harrisberg, who I met through some diabetes device events that I have facilitated.

Drew’s on the far left. With the red circle around him.

Drew is an exercise physiologist and a diabetes educator (as well as a singer/songwriter, model and also probably saves kittens from trees/rescues small children from wells/helps grandmothers across the street with their grocery shopping.) Oh – and he happens to have type 1 diabetes.

I can tell you now, Drew and I have very different interests. He’s all about physical activity. I’m all about sitting around drinking coffee and making cookies. But, we both have AWOL beta cells and love dogs, so there’s something in common there!

Just after the latest Abbott DX2 event where we caught up, I was watching TV and there on the screen was Drew’ face. He was on the promotional advertisements for Ninja Warrior.

Okay – full disclosure here: I had to see the ad half a dozen times before I worked out the name of the show and then I had to Google it to work out what the hell it was all about. I’d never heard of Ninja Warrior before. Now I know it’s a reality TV show involving ridiculously athletic and fit people engaging in competitive torture completing obstacle courses. (I know – it’s an absolute fucking miracle I’m not all over this and wanting to be part of the action…)

Anyway, after seeing that Drew was involved, I did get a little interested. While my reality show viewing generally extends to Masterchef (because: Nigella) or Grand Designs (because: Kevin McCloud), I was suddenly keen to know just how Drew would be presented on the show.

Reality TV show producers love a back story. In fact, they’re ALL about the back story. And I figured that Drew’s back story was going to be about the fact that he lives with type 1 diabetes. I could hear the emotive music playing already and see Drew running slow-mo along the beach, his dog beside him, as his voice told the story of his diagnosis and how, despite the obstacles he faced by diabetes, he could still face the obstacle course of Ninja Warrior (and, fuck! I should be writing copy for that show right now; give me a job).

I do love a little bit of diabetes awareness on mainstream TV. If there is an opportunity to bust some myths and smash some stigma, I’m all over it, and I figured that Drew’s appearance on the show could do that. Plus, I’ve been told that kids LOVE this show, and I thought it would be great for kids with diabetes to see Drew not letting diabetes be a barrier to him being his very-best-obstacle-course-beating self.

So, I was resigned to watching the show when it starts (soon, apparently) and cheering on my mate from the comfort of my sofa (while drinking coffee and eating the cookies that I choose to bake in lieu of doing any exercise). I figured that the diabetes community here in Australia would really get behind him, hoping that he would not have to deal with any pesky hypos just as he was…well…doing whatever one does on an obstacle course.

Except, then I noticed that he was no longer in the advertisements. Where Drew’s face had once been, I suddenly saw the perfect smile of someone else (someone, I assume, with a functioning pancreas). I checked the website and he was nowhere to be seen. It appears that Drew has completely disappeared from all Ninja Warrior promotional materials. (Wait! Is this the ninja part of the show? I still don’t really understand it…???)

Although I may be a tiny bit pleased that I don’t need to commit to a three month reality show, I am so disappointed that having someone with type 1 diabetes on prime time TV has been lost.

So, Channel 9 – any chance you can share what’s going on? What have you done with Drew? Why has he disappeared? Why have you completely forsaken this awesome opportunity to showcase someone on your show who is living with a serious and seriously challenging health condition?

Looking forward to learning the full story…

Best,

Renza

Just what does Life for a Child do?

July 5, 2018 in Advocacy, Awareness, Diabetes, DOC | 1 comment

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.