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

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

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

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

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

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

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

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

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I caught up with Grumps a couple of weeks ago in London and bored/annoyed him to death with requests for him to write for me again. Success! Off you go, Grumps… 

___________________________________________________________

A couple of weeks ago I was lucky. Lucky that my great friend Renza was in the UK. Lucky that we had time to catch-up. Lucky that JDRF UK invited us both to talk with their staff about #LanguageMatters & #TalkAboutComplications.

Smiley / Grumpy

One of the questions during the session was around how can we get the language matters message out to healthcare professional?

Renza gave her view. I can guarantee that it was brilliant and articulate. But if I’m totally honest, (which I can be now, with her back on the other side of the world again), I wasn’t totally listening.

I’m shit at multi-tasking you see. In fact, I struggle with single tasking most days.

You see I was thinking (another thing I struggle with….)

It’s easy (relatively) to get the message out to my diabetes team:

  • Discussions
  • Position statements.
  • Frowns and a raised eyebrow at the required time.

But what about my extended team?….. How would I do this?

What Would Grumpy Do?

Basically, I did what I often do, (which pisses people off).

I answered with a question.

  • ‘Who is in my HCP team?’
  • ‘How many HCPs are in it?
  • ‘Do I see the same HCP every time?’

Ok. That’s three questions. (I’m also shit at maths.)

I’d kind of inadvertently got a head start on this one because at the beginning of my foot ulcer treatment (fucking ages ago), I considered how joined up my care would be.

Don’t get me wrong. Each team is fantastic and the care is brilliant. It’s not joined up, though.

My brain works, (when it actually works), in pictures. So, I mapped this out:

Grumps’ brain drew this.

There are a lot of HCPs involved here, in several locations and different fields of expertise. The only person present at every single appointment and meeting is me.

So, I am the one best placed to ensure that my care is joined up. In which case, I am best placed to ensure that I am talked to in a consistent way, using the language that I am personally comfortable with.

I’m not saying that its easy. I am saying that it’s my responsibility to try.

The best manager I ever had used to tell me: ‘What you permit, you promote’. If you let people treat you in a way that you do not like, it validates it to them.

Live Long and Bolus!

Grumps.

Want more from The Grumpy Pumper? Check out his blog here. And follow him on Twitter here

I woke yesterday morning to a shit storm on Twitter. I had dozens and dozens of notifications where I had either been retweeted, mentioned or @-ed. (And yes, sorry, I did just turn the @ symbol into a verb). I was hoping that someone was sharing news with me that in the eight hours I’d been asleep, diabetes had been cured, JK Rowling had released a new Harry Potter book, or Nutella would be sponsoring me to…well, eat Nutella.

Alas…it was none of these. No; it was not.

I slipped down the rabbit hole of people replying to a tweet where I’d shared an awesome blog post by my mate and all ‘round wonderful human, Georgie Peters. Georgie was commenting on the recent study which has been widely shared (and written up in the NY Times) about type 1 diabetes and LC diets. (If you’ve not read the NY Times article, do! The study is really interesting and as someone who predominantly follows LC it all makes perfect sense to me…and makes my CGM trace devoid of roller coasters lines.)

Georgie’s piece was not demonising LC. In fact, quite the opposite. She was suggesting that it is absolutely a valid way of eating for some people, just as eating moderate to high carbs might be.

Distilled into one word, Georgie’s post was about CHOICE.

In more than one word, Georgie was warning that diets that are inherently restrictive in nature could lead to an increased risk in eating disorders. Georgie was specifically referring to children on LC diets who are not given a choice in the way they are eating, or as she far more eloquently puts it: …the food choices of children and their right to bodily autonomy.’

Choice. It all comes down to choice.

Apparently, that was completely lost on the people challenging what Georgie was saying. One person was somehow trying to say that the idea that a diet restricting carbs was no different to a kosher diet, and does that mean that people following a kosher way of eating have an increased rate of eating disorders? (If you can join the dots to make something that even remotely makes sense, please do so for me, because I have tried and keep coming up with a massive question mark.)

Another doctor claimed that she insists all her surgical patients go on a low carb diet (pre-surgery), and that they have no choice in the matter. Two things: type 1 diabetes isn’t the same as prepping for surgery. And any doctor who even suggestedthere being no choice in anyaspect of my diabetes management would be given the sack very quickly. (I’ve no idea about pre-surgery diets, because that’s not my thing. Diabetes is. Georgie’s post was about diabetes, not about pre-surgery diets. The surgeon’s comments added to my confusion, because: apples and oranges…which are probably banned on her LC diet. And further down the rabbit hole we go.)

The food we eat; the diet we follow, are inherently personal choices. No one has the right to insist that there is only one way of eating. One of the frustrations that some of us who do want to follow a LC diet have is that there are some HCPs who refuse to even acknowledge that it could possibly be a positive and useful diet for people with diabetes, some going so far to say it is harmful.

The other day as many of my friends shared the NY Times article, I saw them plead for others to open their minds. I want that, too! I want people to have the information about how LC might work as a diabetes management strategy and be open to the idea. But more than that, I want people to then choose what works for them.

And when it comes to parenting (and I know that I don’t have a kid with diabetes, but I am a parent), I know this to be true: we all want what is best for our children. The thirteen-year-old in our house doesn’t have complete autonomy over food choices, because I do ninety percent of the shopping for food and cooking. I like it that way, because I get to eat what I want, and don’t have to do any of the cleaning up after I’ve messed up the kitchen! Win, win!

While she doesn’t have a choice in what is served up at the dinner table, she does get to decide what of it she eats. I know she doesn’t have diabetes, so when it comes to thinking about food, she doesn’t have to consider her glucose levels. But there is far more to health than that.

I am doing all I can to inform and educate her on what makes for a healthy, balanced diet. I have to trust that what I am doing is enough to result in her making healthy choices most of the time.

Choice – that’s what Georgie was writing about. Is it really that hard to understand?

In kind of related, but really, just that I want to share something: this nut and seed bread is incredible:  

It’s low carb (at least, it is the way I make it, because I swap the oats for coarsely ground hazelnuts) and, quite frankly, is the best thing I have ever eaten. (To make it decidedly not low carb, slather in Nutella…!)

There is something to be said for the comfort of routine. Yesterday, I had my annual eye check. And like clockwork, it played out the same way it always has.

Just like always, the week before my appointment, I received a reminder message from doctor’s office. That cued the call to my dad to lock him in for chauffeuring and morale duties.

Just like always, a little part of the back of my mind was occupied with the upcoming appointment and a series of ‘what if’ scenarios played out.

Just like always, the night before my appointment, my anxiety levels were heightened. I tried to alleviate them with a bit of twitter humour.

Just like always on the day of the appointment, Dad picked me up and just like always, I told him how nervous I was. ‘Twenty years of diabetes now, dad.I’m worried this might be the appointment where the news isn’t all good.’

And just like always, he said ‘Just wait and see. There’s not point worrying before you see your doctor.’ His morale boosting comments, just like always, right on point.

Just like always, I nervously waiting in the second waiting room to be called in to the first appointment.

Just like always, the orthoptist had me read from a chart and put drops in my eyes and sent me on my way to the next waiting room. And just like always, my vision blurred and my heart rate increased.

Drops in; vision blurring. Waiting…

Just like always, my dreamy ophthalmologist called me into his room. (Dreamy because he’s lovely to look at. But more dreamy because he is just so damn kind to me in my ridiculous nervous state). ‘Are you well,’ he asked, just like always asks, and I realised that I have not always answered, ‘Yes. So well…’

Just like always, he said: ‘Your vision and eye pressure look good, Renza. No changes at all since last time.’

Just like always I allowed myself to smile a tiny bit. But no too much. Because the reason we were really there hadn’t happened yet.

Just like always, he turned down the lights in the room and shone an almost painfully bright light into my eyes. He asked me to look this way and then that way. He looked at the front and back of both of my eyes.

And just like always, when he’d looked for all he needed to look for, he turned the lights back on and smiled at me. ‘There is no sign of retinopathy or any other diabetes-related eye problems. Your eyes are great.’

Just like always, I breathed again. I smiled. Really smiled. ‘I’ve had diabetes for twenty years now. Today’s news has made me really happy.’ I said. And I thanked him for giving me such good news.

Just like always I wandered back down the corridor, feeling far lighter. I paid the bill, I found my dad.

And just like always, he looked at my beaming smile and said, ‘I told you so. Just like I always do.’

When I was in my teens and twenties, I was, just as many women are, dismayed with the way I looked, and susceptible to the claims of beauty products that promised I could be thinner, more toned, more beautiful, smoother, more attractive, more <insert whichever part of me obviously needed improving>.

Of course, all of the things I was desperate to change and refine were measures of my worth, right? Because if I was thinner, more toned, more beautiful, smoother, more attractive, more <insert required improvement> that would make me a better person. Right? Of course.

I didn’t look like one of the supermodels (not just models, mind; these ones were super) that were everywhere I looked. At the time, I was spending all my energies being a flute player, but even the classical musical world wasn’t spared the attention to how women should look, with Jane Rutter suddenly appearing wrapped in nothing more than a bedsheet and a sultry look (impressive with a flute shoved against her bottom lip, while playing Debussy). ‘Great’, I thought. ‘Now not only do I have to look like a fucking model. I have to do it while playing flute. Naked.’

The feelings of inadequacy were strong and I know I spent far too much time desperately wishing I looked different. I probably spent too much money on products that promised to make that happen. And delivered nothing.

When I was twenty-one, someone gave me a copy of Kaz Cooke’s fabulous book Real Gorgeous. I can’t remember who it was, but suspect it was my mother. I read it in one sitting. I already knew of Kaz Cooke (from her brilliant ‘Keep Yourself Nice’ column in the weekend papers), but this book was a revelation. She laid bare all the sneaky tips and tricks and lies the beauty industry used to expose our insecurities, feel as though we needed to be different and, subsequently, buy their products. Of course, I already knew what she was saying. There was nothing in there that, when I had a moment of rational thinking, I didn’t already understand. But to have it set out so practically and emphatically was just what I needed to get over the idea that I needed to look and be different to how I was.

I actually saw Kaz at Marios over the weekend and stopped her she walked past me. I introduced myself and the kid (who was so horrified and embarrassed that she looked as though she wished the ground would swallow her up), and thanked her for all her books, but especially Real Gorgeous. ‘It saved me, in some ways.’ I told her.

And it did. It stopped the self-doubt. And it made me confident enough to admit to myself that I was more than enough. Just the way I was. And that nothing about the way I looked needed improving. (Thankfully, this was before I tried any naked flute playing. At least, any in public…)

As it turns out, I struggled with the same insecurities and feelings of inadequacy and self-doubt when it came to being diagnosed with diabetes. I think it is only in recent years that I have come to understand that the constant second guessing about being good enough achieves nothing other than increasing my anxieties and contributing to burn out.

With time, I came to apply the same cynical filters to diabetes product advertising as I now had permanently in place when looking at health and beauty advertising. In the same way that not every woman looks like Cindy Crawford, not every blood glucose check will be 4.8mmol/l.

‘Real Gorgeous’ wisdom on the left. Real diabetes on the right.

One of the most damaging things that we can do is compare ourselves to others. Because when we do, we often fall short. Our A1c may be higher, our time in range lower, our technology not as advanced, our healthcare professionals not the ones on the TV or on conference stages.

Being around and sharing with others living with diabetes is wonderful (here are twenty reasons why) but it can be damaging if the only thing you are doing is using them as a yardstick for your own diabetes.

It took me many years to stop feeling that I needed to ‘keep up’ with my diabetes peers, or that my diabetes needed to look like someone else’s diabetes. While I may try to align myself with others who have similar ideas about diabetes, I do it on my own terms, using and doing the things that work best for me.

The way I have adopted DIYAPS is not the same as many others. I call it ‘Loop Lite’, using just the absolute basics, without any of the add-ons. I don’t produce pages of graphs to analyse, because that’s not what I need. But what I do is perfect for me.

The same goes for finding the way to an eating plan that works for me. While learning about the details of LCHF, I refused to go ‘all in’ as many seem to. I adapted it for the way I live.

The way I do diabetes and the way my diabetes behaves is enough. It is right for me. It is my Real Diabetes.

Today, I have a brand new copy of Real Gorgeous on my desk, all wrapped up. It’s a gift for the kidlet who is already a huge Kaz Cooke fan (she has had Girls Stuff on her shelf for a few years now).  She already has a very healthy filter when it comes to beauty advertising, but I know that it is possible that she will be susceptible to the same feelings of self-doubt that I was.

I want her to know she is enough. So very much more than enough. We all are.

Click on photo to order your own copy of ‘Real Gorgeous’.

Today I’m in Sydney giving a talk to the team at Roche about how I try (and generally fail) to simplify the most complex health condition in the world.

Alas, as I finished prepping my slide deck, I realised I have no real solutions and actually, diabetes remains bloody complex.

As you were…

Three days in Vienna is never going to be enough, and neither were three days at ATTD. But mother guilt is a very strong motivator for getting back home as quickly as possible.

This is the second ATTD conference I attended. Last year, I returned a little bewildered because it was such a different diabetes conference to what I was used to. But this year, knowing what to expect, I was ready and hit the ground running.

There will be more to come – this is the initial brain dump! But come back from more in coming weeks. Also, if you emailed me, shot me a text, Facebooked me, Tweeted me or sent me a owl last week, I’ll get back to you soon. I promise. Long days, and long nights made me a little inaccessible last week, but the 3am wake up thanks to jet lag is certainly helping me catch up!

So, some standouts for me:

DIY

The conversation shift in 12 months around DIY systems was significant. While last year it was mentioned occasionally, 2018 could have been called the ATTD of DIY APS! Which means that clearly, HCPs cannot afford to think about DIY systems as simply a fringe idea being considered by only a few.

And if anyone thinks the whole DIY thing is a passing phase and will soon go away, the announcement from Roche that they would support JDRF’s call for open protocols should set in stone that it’s not. DANA has already made this call. And smaller pump developers such as Ypsomed are making noises about doing the same. So surely, this begs to the question: Medtronic, as market leaders, where are you in this?

It was fantastic to see true patient-led innovation so firmly planted on the program  over and over and over again at ATTD. After my talk at ADATS last year – and the way it was received – it’s clear that it’s time for Australian HCPs to step up and start to speak about this sensibly instead of with fear.

Nasal glucagon

Possibly one of the most brilliant things I attended was a talk about nasal glucagon, and if diabetes was a game, this would be a game changer! Alas, diabetes is not a game, but nasal glucagon is going to be huge. And long overdue.

Some things to consider here: Current glucagon ‘rescue therapy’ involves 8 steps before deliver. Not only that, but there are a lot of limitations to injectable glucagon.

Nasal glucagon takes about 30 seconds to deliver and is far easier to administer and most hypos resolved within 30 minutes of administration. There have been pivotal and real world studies and both show similar results and safety. Watch this space!

Time in Range

Another significant shift in focus is the move towards time in range as a measure of glucose management rather than just A1c. Alleluia that this is being acknowledged more and more as a useful tool, and the limitations of A1c recognised. Of course, increasing CGM availability is critical if more people are going to be able to tap into this data – this was certainly conceded as an issue.

I think that it’s really important to credit the diaTribe team for continuing to push the TIR agenda. Well done, folks!

BITS AND PIECES

MedAngel again reminded us how their simple sensor product really should become a part of everyone’s kit if they take insulin. This little slide shows the invisible problem within our invisible illness

Affordability was not left out of the discussion and thank goodness because as we were sitting there hearing about the absolute latest and greatest tech advantages, we must never forget that there are still people not able to afford the basics to keep them alive. This was a real challenge for me at ATTD last year, and as technologies become better and better that gap between those able to access emerging technology and those unable to afford insulin seems to widening. We cannot allow that to happen.

Hello T-Slim! The rumours are true – Tandem is heading outside the US with official announcements at ATTD that they will be supplying to Scandinavia and Italy in coming months. There are very, very, very loud rumours about an Australian launch soon but as my source on this is unofficial, best not to add to the conjecture.

How’s this for a soundbite:

GOLD STARS GO TO….

Massive congrats to the ATTD team on their outstanding SoMe engagement throughout the conference. Not a single ‘No cameras’ sign to be seen, instead attendees were encouraged to share information in every space at the meeting.

Aaron Kowalski from JDRF gave an inspired and inspiring talk in the Access to Novel Technologies session where he focused on the significant role PWD have in increasing access to new treatments and his absolute focus on the person with diabetes had me fist pumping with glee!

Ascensia Diabetes packed away The Grumpy Pumper into their conference bag and sent him into the conference to write and share what he learnt. Great to see another group stepping into this space and providing the means for an advocate and writer to attend the meetings and report back. You can read Grumps’ stream of consciousness here.

Dr Pratik Choudhary from the UK was my favourite HCP at ATTD with this little gem of #LangaugeMatters. Nice work, Pratik!

ANY DISAPPOINTMENTS?

Well, yes. I am still disappointed that there were no PWD speaking as PWD on the program. This is a continued source of frustration for me, especially in sessions that claim to be about ‘patient empowerment’. Also, considering that there was so much talk about ‘patient-led innovation’, it may be useful to have some of those ‘patient leaders’ on the stage talking about their motivations for the whole #WeAreNotWaiting business and where we feel we’re being let down.

I will not stop saying #NothingAboutUsWithoutUs until I feel that we are well and truly part of the planning, coordination and delivery of conferences about the health condition that affects us far more personally that any HCP, industry rep or other organisation.

DISCLOSURE

Roche Diabetes Care (Global) covered my travel and accommodation costs to attend their #DiabetesMeetup Blogger event at #ATTD2018 (more to come on that). They also assisted with providing me press registration to attend all areas of ATTD2018. As always, my agreement to attend their blogger day does not include any commitment from me, or expectation from them, to write about them, the event or their products. It is, however, worth noting that they are doing a stellar job engaging with people with diabetes, and you bet I want to say thank you to them and acknowledge them for doing so in such a meaningful way.

New year, new jumble. And lots of saved links from the last few weeks to share.

#OzDOC 2.0

Did you know that after OzDOC had it’s ‘final’ tweetchat at the beginning of December last year, it’s had a reboot and is now continuing to go at a great rate. David Burren (AKA Bionic Wookiee) kicked off the chat but is looking for people to volunteer to the moderators’ roster. There’s a brand new Twitter account to follow (@OzDOC_host), but the #OzDOC hashtag continues to shine brightly.

Same #OzDOC time, same #OzDOC channel. (i.e. Tuesdays at 8.30pm AEDT)

And while we’re talking tweetchats…

…make sure you keep an eye out on the #GBDOC tweetchats, which also had a bit of a restart last year and are going absolutely brilliantly. Follow @GbdocTChost for topics and moderators.

Now is a great time for Aussies to participate in #GBDOC because with the time zone difference, the chat is on Thursday 8am AEDT…which is actually quite pleasant. (It all goes to pot and becomes more difficult when daylight saving kicks in/out in respective hemispheres in coming months, but for now, it’s certainly manageable!)

Jane’s profile

It’s no secret that I’m a huge fan of Professor Jane Speight and I make no apologies for mentioning her so frequently on this blog. She is truly a champion for and of people with diabetes and her pioneering work on diabetes and #LanguageMatters, and social stigma are changing the landscape for those of us living with diabetes.

Last week, a profile of Jane and her work was published in The Lancet. Congrats, Jane. I can’t imagine a more worthy recipient of this attention. Please keep on keeping on. I for one am very grateful to have you on our side!

Read the article here – it’s free, but you will need to register/log in to access it.

(Click photo for source)

Dear ‘patient’

I was really interested to read this BMJ Opinion piece about medical letters, with the writers suggesting that instead of addressing ‘report letters’ to referring (and other) doctors and HCPs, that they should be addressed directly to the person, CCing in the doctor who would ordinarily have been sent the letter.

I love that idea! My endo generally copies me in on anything she sends out to my other HCPs to keep me in the loop, but I think that actually writing directly to me is even better.

HCPs would need to completely reconsider the language they adopt, the terminology they use and the overall tone of the communication, and I believe that there is nothing that should be shared with another HCP about me that shouldn’t be shared directly with me.

Interesting idea. And interesting to see if it has legs…

Writing for Grumps

After writing for me a few weeks ago, I returned the favour and wrote a post for The Grumpy Pumper. (I think the deal he made was something like ‘I’ll show you mine if you show me yours’, so I had to come up with the goods.)

This is all part of Grumps’ attempts to get people with diabetes speaking about #TalkAboutComplications in an open and honest way to help reduce the shame that seem to go hand in hand with a complications diagnosis.

Get ready for Spare a Rose spam

This year’s campaign is about to kick off. And if you want to know why I support this campaign, here’s just one reason.

Hospital admissions and T1D study

Rebecca Munt from Flinders University is currently enrolled in a PhD at Flinders University and is looking for participants in her research.

The focus of her study is to explore the experiences of self-management for adults with type 1 diabetes in the hospital setting (when T1D is not the primary admission diagnosis). If you’re interested in participating in Rebecca’s study, have type 1 diabetes, are over 18 years of age and have been admitted to hospital within the last two to five years (not for diabetes), please call Rebecca on (08) 8201 5749 or email rebecca.munt@flinders.edu.au

(The project has Social Behavioural Research Ethics Committee approval from Flinders University.)

Future of medical conferences

I have been very vocal in recent years about the shortcomings of diabetes conferences, specifically the lack of involvement and engagement of people with diabetes as part of the planning, running and presenting of the conference. So this piece really resonated about why medical meetings need a revamp, and some ideas for what could be done differently.

(Click for original tweet)

Because #NothingAboutUsWithoutUs.

Does the story we know and love about Banting need a rewrite?

I was fascinated to watch the short documentary shared in this story which suggests that the frequently-told story of the discovery of insulin is missing out a critical part.

It was the best of times, it was the worst of times…

This blog post by Sue Robins detailing two vastly different medical appointments is compelling – and quite heartbreaking –reading.

More D Merch

Totally true!

Click image to get your own!

 

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

 

 

 

As explained previously, I don’t do new year’s resolutions for the simple reason that I never stick to them. I’m unable to do the whole SMART thing and make my goals actually attainable, and so after the shortest time (a day… an hour… minutes), have thrown in the towel.

However, I am not above making resolutions for others. Because that’s the sort of person I am. Caring and sharing. Or bossy. You decide.

Here are some New Year’s resolutions for HCPs working with people with diabetes to consider:

  • Use language that doesn’t stigmatise – both in front of PWD and away from us.
  • And while we’re talking words: use words we understand. We may know a lot about our health condition, but we don’t necessarily understand all the medical speak. If you are talking to us, check in to make sure we actually understand what you are saying to us.
  • Lose the judgement. We all judge; we do it subconsciously. Try not to.
  • Remember who is in charge. While as a HCP you may have a direction that you would like us to take, or our consultations to follow, that might not work for the person with diabetes. Our diabetes; Our rules. Learn the rules and stick to them. (Also, there are not really any rules, so don’t get shitty when we seem to have no idea what we’re doing.)
  • Remember this: no one wants to be unhealthy. Or rather, everyone wants to be the healthiest and best they can be. Use this as an underlying principle when meeting people with diabetes.
  • Sure, offer help with setting goals. We all like to work towards something. But setting the goal is actually the easy part. Help us work out the steps to get there. If someone comes to you and wants to lose weight or reduce their A1c, that’s awesome, but they are big asks. So, tiny steps, easily achievable mini-goals and rewards for getting there.
  • Acknowledge and celebrate victories. You know that person with diabetes sitting opposite you? For some, just getting there and being there is a huge achievement. Recognise that. Showing up with some data – in whatever format? That’s brilliant – so say so. Sure, it may only be three BGL readings from three different meters and all at different times, but that is a start.
  • Diabetes is rarely going to be the most important thing in someone’s life. Please don’t ever expect it to be.
  • Include us in every discussion about us – from letters to referring doctors or others in our healthcare team and when it comes to any results of bloody checks or scans. Make sure we have copies of these and understand what they all mean.
  • Please be realistic. If someone is currently not checking their glucose levels, don’t ask them to suddenly do six checks a day, analyse the data and send you pretty graphs. Small, attainable, reasonable goals. (Once, during a period of particularly brutal burnout when my meter was not seeing the light of day, my endo asked me to do two checks a week: Monday morning before breakfast and Wednesday morning before breakfast. That was it. Next time I went back to see them, I’d not missed a single one of those checks. And even managed to do a few others as well. I felt amazingly good for actually having managed to do what was suggested and eager to keep going from there.)
  • Ask us if we want to be pushed a little. Are we interested in new technologies to try, different meds to consider, a more aggressive treatment plan? Don’t assume you know the answer. Present us with the options and then help us decide if it’s something we want to try.
  • Equally, if we’re pushing you because we want something new or more intensive, help us get it, learn about it and support our decision to try it.
  • Do not dismiss peer networks and peer support. Offer it, direct us to it, encourage us to find it.
  • Be on our side. We need champions, not critics. We need people to cheer us on from the sidelines, go into bat for us when we need an advocate and take over the baton when we’ve done all we can (and shit yeah! – that’s three sports analogies in one dot point – I deserve a gold medal!)
  • Understand that diabetes does not start and end with our glucose levels. There is so much going on in our head and sometimes we need to be able to get that sorted before we can even begin to think about anything else. Get to know some diabetes-friendly psychologists, social workers and counsellors, and suggest we see them.
  • Please, please, please, when it is time for our appointment, do nothing but be there with us. Of course interruptions may happen, but do apologise and excuse yourself – and do everything possible to minimise them. Look at us, take notes on a piece of paper – not a computer, and listen to us.
  • Again…listen to us.
  • Explain to us why you feel we need to have something done. It could be as simple as asking us to step on the scales (which often is actually not simple, but fraught) or it could be asking us to have a scary-sounding and invasive procedure. Why are you suggesting this? Is this the only course of action?
  • Treat us like a person, not our faulty body part. And see all of us – not just our missing islet cells. Because really, if all you are seeing is those missing islet cells, you really are not seeing anything at all.

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