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I had a call the other day from one of my favourite diabetes HCPs who is writing about diabetes and female sexual health. I wanted to shout ‘Halle-fucking-luiah!’ but didn’t because I am polite and never swear.
Anyway. The reason I was so excited to hear this is because when it comes to diabetes and sex, women rarely get a look in. Let me reframe that. When it comes to information about diabetes and sexual health, women rarely get a look in. (Hopefully women with diabetes who are wanting sex are getting plenty of looks in…so to speak…Yeah, this is not going to be awkward at all, is it?)
When talking about the complications of diabetes, erectile dysfunction*** frequently is mentioned. It is actually one of the things that often get men to the doctor because, well, because…erectile dysfunction. There is information about it and it is a well acknowledged complication of diabetes in men.
But women also report problems with sexual function, yet there is very little information about it and it is spoken about very, very rarely. Or, when it is, it’s discussed around changes in sexual function relating to menopause, which may be an issue for all women – diabetes or not. I guess the thinking is that ‘this is when it is likely to be a problem, so let’s talk about it now’, which doesn’t really help those who may have concerns with sex and sexual function earlier than menopause.
So today, let’s talk about women’s health and diabetes – all of it, including the sex stuff.
(For the record, there is no kissing and telling in this piece. There will be no personal sharing of sex stories. This is for everyone’s benefit! Plus, I learnt that it is not cool to discuss my sex life in a public forum after I once mentioned in a talk to a group of first year med students that I hypo pretty much every time after sex, and then made some silly comment about it being because my partner was so good in bed. This would have been fine if it all stayed in the room. The next night, when out for dinner, a group of Uni students came up to me and told me that they had been at my talk the day before and it was great. Then they looked at my husband who was innocently eating a plate of pasta and one of them said ‘Well done, mate.’ I was mortified. Anyway, let’s move on…)
So, what is out there now for women who want some information about diabetes and sex? Well, while working at Diabetes Victoria we developed a nifty and gorgeous looking booklet which talks about contraception choices. It’s called Sexual Health and Contraceptive Choices for Young Women with Type 1 Diabetes, and I can’t for the life of me find it online, but if you can get a copy, it’s terrific!
There are also some great Australian resources available on diabetes and pregnancy – both for women with type 1 and type 2 diabetes – which provide information about pre-conception planning as well as what happens after conception, during the pregnancy, during delivery and post-partem.
There is some (limited) information about diabetes and breastfeeding. (So wish there had been more eleven years ago because, seriously, I bumbled my way through for almost 24 months and it was horrid at times, diabetes-wise…)
But where is the stuff about everyday diabetes and women’s health and sex – not necessary tied up with trying to get pregnant. (We’ll ignore the ‘tied up’ comment there, okay?)
On the day I was diagnosed, a lovely diabetes educator told me that sex is exercise. Exercise often causes hypos. Hypos are not fun. Not fun kills the sex stuff. Moral of story – keep jelly beans beside bed. I was terrified that I was going to pass out during sex and that it was going to be unpleasant for everyone involved. (Not that there would be a cast of thousands…)
Yawn – it was boring information and it made me think that in future, sex was going to very unsexy. What I wanted to hear was ‘you absolutely can still have sex and, if you want to, you absolutely should. There are some things you might want to consider such as the possibility of going low… I’m talking about your blood sugar, get your mind out of the gutter, Renza, and wipe that smile off your face… so Nutella body paint is a good idea.’
Now that would have made me smile, think of Nutella as a medical necessity and therefore how diabetes now justified me keeping a jar of Nutella by the bed. And on the kitchen table. In the bathroom… basically anywhere! As an emergency contingency, of course.
No one ever spoke to me about what orgasms may do to my BGL. Nor was I told much (in fact, anything!) about how high BGLs might impact on sexual function.
And then there is the minefield that is body image and diabetes, and thinking about how we feel about ourselves and its impact on how much we want to have sex. Or how it makes us feel when we are actually having sex.
Plus, the visible signs of out so-called invisible illness impact on how we feel about undressing in front of someone. I have scars all over my abdomen and hips from heeling pump sites. There is usually a CGM sensor strapped to my arm and a pump cannula in my tummy or hip. There are dregs of tape from old sensors and sites and sometimes tiny bruises. There are tubes and a little vibrating machine (pump, people…I’m talking about my pump).
All of these things point to the fact that I am not perfect and that my body is not perfect and that I need devices and drugs to keep me ticking along. This makes me feel crap at times, wonder what my partner is thinking and want to hide all the reminders that I am not a perfect woman away. This sucks even in my situation where I am married and have had the same partner since diagnosis. Add to that the idea of exposing and explaining all this to someone new and you bet that will impact on how one feels about one’s body and the very idea of sex.
I remember being warned a million times about how women with diabetes MUST PLAN PREGNANCY. And this is excellent advice. However, it made me so terrified of getting pregnant with a sub-perfect A1c. I learnt that fear is an absolute libido-killer. Even when pregnancy would have been welcomed, I was terrified to fall pregnant before I’d been given the green light by my endo.
…which for a while made me feel like there were more than just the two of us in the room trying to make a baby when we were…well…trying to make a baby.
My diabetes loomed overhead, and every moment, I was petrified of my BGL. I started pondering ridiculous things like ‘If I conceive right now and my BGL is not in range, what will that mean? Is it possible that my baby may not have eyelashes if that happens?’ Way to go being drawn out of the moment and into a weird space of imagining babies without eyelashes and how they would hate me forever and ever, and never be able to wear mascara.
So, who do you talk about if you want to have a chat about diabetes and sex? I have never ever been asked about my sexual health from any of my healthcare professionals. Of course there have been discussions about contraception and pregnancy planning and actually being pregnant. But no one has ever said ‘Does your diabetes in any way impact on how you feel about sex? Or do you think diabetes might impact on actually having sex?’
For the record, (and this is a personal bit), I did find that my attitude to sex changed after I was diagnosed. I am sure that was connected to how I felt about my body, so there was some psychological stuff I needed (and continue) to work through, but there was also a noticeable difference in actual function and how I felt. I couldn’t find any information about it, so naturally, thought it was just me.
Of course, it wasn’t. And as soon as I spoke to a group of women the same age as me who were all experiencing similar things, I felt heaps better. But it took me a long time to find those women and feel comfortable speaking about it (yay for prosecco!).
I don’t really have any answers in this, but I wanted to write to start a discussion. I know of many women who say that they believe diabetes has an impact on their sex life – both physically and emotionally. Also, I have come to understand that if it is an issue for one, it is usually an issue for many. Anything anyone want to share? Feel free to do so – anonymously if easier.
***LANGUAGE DIGRESSION
Erectile DYSFUNCTION? Can we please come up with a different term for this? Dysfunction sounds like failure – or at least like a penis has failed. It has not.
She called me because someone had told her to get in touch. ‘Speak with Renza. She gets it.’ Is what she was told. She we organised a time to meet and over coffee we talked. And she searched my face for reassurance as she told me how scared she was feeling.
When I meet someone who has recently been diagnosed with diabetes, I say very little. I listen. I ask questions and gently try to find out what is going on in their head. I don’t say much about my own diabetes, because I don’t want to imprint my experience in their mind. Everyone feels different at the time of diagnosis and working out exactly what they are feeling needs some time.
I listen and sit there quietly and try to reassure and be positive. I nod a lot, and let them talk and vent and, if they need to, cry. Usually people cry. And I let them know it is okay. I did all of this with the woman who called me. She did cry and she did vent. And then she cried some more. And I said hardly anything.
But this is what I wanted to say:
- It is okay to feel scared and uncertain. Or angry. Or completely and utterly ambivalent.
- Because, you see, there is no right way to feel right now – or ever – about living with diabetes. And equally, there is no wrong way to feel.
- You don’t have to work this all out this week. Or next week. Or next year. In fact, you never have to work it out.
- But do work out what you can manage today and do that. And whatever it is, it’s enough. It. Is. Enough. And well done you for doing it!
- Find your tribe. In fact, this is what I want you to know more than anything. Others who are also ‘doing diabetes’ will help you make sense of this new world. You have to be ready to do that, but do be open to the idea. I wish that someone had introduced me to others with diabetes when I was first diagnosed. It took me over three years to meet another PWD and I felt so alone in those three years.
- And when you do meet people, don’t think that anyone has this diabetes thing worked out completely. Even those who say they do…
- …because, there is always more to learn, which is daunting and exciting in equal measure.
- I promise you – whatever you are feeling, whatever you are thinking, someone has had that same feeling and same thought. You are not alone. (Reading diabetes blogs will prove that to you!)
- Diabetes may feel like it is about to take over your life and it probably will for a little bit. And there may be times that it does again. But it will not define you for the rest of your life or determine who you are. It can be as much or as little of your identity as you choose to let it.
- You will be okay. You will be okay. You will be okay. (And, yes, I am saying that for your benefit as much as my own!)
- There will not be a cure in the next five years. Or even ten. I am not saying that to be pessimistic, I just want you to understand that hope is really important in living with diabetes. But unrealistic expectations that won’t come true are not going to give you that hope; they will destroy it.
- Ask questions. All of them! You may not like the answer (i.e. see previous dot point), but ask anyway. You will be amazed at the things you learn.
- Your diabetes; your rules. This will become more and more apparent the longer you live with diabetes. You don’t need to explain, apologise or justify anything you do to manage your diabetes. Ever.
- Anyone who makes you feel crap about your diabetes – whether it be the fact you have diabetes, or how you are living with it – needs to fuck off. (And if you can’t tell them that, find someone in your tribe who can! I am happy to be that person. Truly! I have the mouth of a trucker and I’m not afraid to use it.)
- Do not watch Steel Magnolias. Ever.
- Right now, this probably seems like it is the worst thing that will ever happen to you. This may sound odd, but actually, I hope it is. Because I know you can get through it.
- You will laugh again. And smile and feel light. You will not think about diabetes for every minute of the rest of your life. It will be there, but it does not have to rule your very being. It certainly doesn’t rule mine. You will learn where to place it in your world, and that is where it will sit.
- You do not need to feel grateful that you have been diagnosed with diabetes and not something else. Because it does suck. It’s good to remember that and say it every now and then. Or shout it out. While drunk.
- Go buy a new handbag. Trust me! If you want, I can help you to justify it as needing a new bag to cart around all your diabetes crap, but just do it for yourself. And while you’re at it, a new pair of shoes. Just because!
- Call me. Anytime. If you want. Only if you want. And even if it just to hear me tell you that you will be okay.
But I didn’t say those things. I only said this: You will be okay. I know this to be true because you are strong and resilient and capable. I know this to be true because many others have walked this path and worked out how to make it okay for them. You will do that too. It will be okay for you.
And I hope that was enough. Or, at least, enough to start with.
So this happened….
Yesterday morning, we got up bright and early to join the excited witches, wizards and muggles for the 9.01am launch of the new Harry Potter book.
And as we stood there in Carlton, on the cold Winter weekend morning, memories of the other times we did that flashed through my mind.
I have a lot of Harry Potter themed memories. It was my mother-in-law who first introduced me to the books. She had become hooked after reading the first three, and one long weekend when we were visiting their farm, she suggested I read them. I don’t think I moved from sitting in front of the open fireplace for the rest of the time we were in Mansfield, speeding through the chapters at the rate of knots. Aaron read them as soon as I finished and together, we became hooked on the story of the ‘boy who lived’.
The fourth book had just been released, so as soon as I finished the third book, I bought a copy of that and caught up. And started the count down until the launch of the fifth book, re-reading the already released books in the lead up – a tradition that would precede the big launch day of subsequent instalments.
The launch dates of the remaining books were marked in my diaries and on the day, I’d push little kids out of the way to get my pre-ordered copy, spending the rest of the day cuddled up on the couch ploughing my way through, refusing to even glance online for fear of spoilers!
In November 2001, I counted down until the first movie came out, lining up the opening weekend to see if the film came close to capturing the magic on screen that had leapt from the pages of the books. I loved it, just as I did all the films.
In London a couple of years ago, Aaron and I (without our kid – excellent parents!) spent a day at the Warner Bros Studio where much of the movies had been filmed. I burst into tears as I turned a corner during the tour to be faced with a scaled model of Hogwarts. We drank butter beer, rode broomsticks and flew above the trees in a Ford Anglia.
And then there was the delight and beauty of introducing our daughter to Harry Potter and watching her discover the world into which I had escaped years earlier. We loved seeing her fall in love with the stories and get carried away with the characters. Nights become a battle ground as we caught her reading with a torch under the doona after lights out because she was desperate to keep turning pages…
She loved the movies too when she was old enough to watch them – and after she had already read the books. That’s the rule in our house: books before movies!
She has other Harry Potter memories too – not only the books and the movies, but also dressing up as Hermione during book week when she was Year 1, and a visit to the Wizarding World of Harry Potter at Universal Studios in Orlando last year.
And now she will remember the launch of the eighth book where she was an active participant. She has heard our tales of the excitement of launch events and yesterday, she got into the spirit of the occasion, standing out as the only Bellatrix Lestrange in a sea of Harrys, Hermiones and Rons. (Very proud parenting moment!!)
I love that she has memories of Harry Potter and I wonder if these will be the occasions that stand out in her mind when she grows up and looks back on her childhood.
She has had some pretty incredible experiences that have made for pretty magical memories. Where does mum having diabetes fit in there? She asks me a lot of questions about diabetes that I try to answer as honestly as I can, but there is so much I want to shield from her – or at least, not have her think about.
A while ago, she asked ‘Is diabetes scary?’ and I paused before answering ‘Sometimes, but not too much.’ The truth is that it scares me senseless a lot of the time, but I don’t want her knowing that. I know I am not alone in this. My mum still tries to downplay things if she isn’t feeling great, and I am now over 40 and far less easily fooled by her ‘putting on a good face’ routine. Although, maybe I just tell myself that our 11-year-old can’t see through my lies about how I feel.
When our daughter is an adult and remembering her childhood, I don’t want her to think about diabetes. I don’t want her to think about me having to stop to deal with a ‘diabetes thing’.
I want her to remember the hours we spent reading, watching and talking about Harry Potter and having ridiculous discussions about who we would be if we were characters in the books. (I can tell when she is annoyed with me – then she says I remind her of Dolores Umbridge!)
Diabetes doesn’t get a look into our world of Harry Potter. In that world, there is no diabetes; there is no fear of complications; there are no scary lows or nasty highs. In that world, I don’t think diabetes. Because, those things don’t exist. There is magic. Only magic.
Last night, I was the ‘here’s one we prepared earlier’ on a panel discussing CGM technology. The audience was all healthcare professionals – mostly DEs, but some dietitians, RNs and also a GP-in-training (so much yay to him for coming along!).
I love being in the room for these events! I wrote about my last experience giving the same talk here. I cannot speak highly enough of the two experts on the panel last night. Dr Peter Goss – who spoke at the last one of these events – is what I would call a disrupter in the diabetes healthcare space and, honestly, all the power to him. He may ruffle some feathers with his sometimes unorthodox approach, but it is undeniable that he is a champion for kids and teens (and young adults) with type 1 diabetes. Also on the panel was A/Professor David O’Neal who is best described as a truly awesome endo (I have heard that from every single person I know who sees him as their endo) and an absolutely brilliant mind. His expertise in diabetes tech is second to none and he is genuinely interested in how the technology can safely, efficiently and effectively be incorporated into the lives of people living with diabetes.
I know that all sounds rather effusive. But I need to point out that they are remarkable. And that they are the sorts of HCPs you want on your side if you are a person with diabetes.
Because now I am going to talk about language and why I pulled them up a little bit after we all did our presentations and sat on the stage ready to answer questions from the audience.
As happens frequently when I am in the room with a group of healthcare professionals, the conversation turned to language. Okay, I made that happen. In fact, the words I used were ‘I’m going to hijack this conversation because we really need to talk about language here.’
One of my biggest pet peeves is the jokey, and somewhat snide, comments made about people with diabetes making up numbers in their diabetes log books. Because, it’s not a joke. It’s not something for HCPs to roll their eyes over and dismiss as ‘non-compliant’ behaviour.
The word that was used for PWD who make up numbers in their books was ‘fakers’. I cringed the moment I heard the word. And cringed even more at the audience’s response – laughter, heads shaking from side to side and knowing looks. I looked around the room and knew that we would be talking about this later on in the evening!
As I pointed out when the panel was seated on the stage, I absolutely did this. And I was incredibly good at it – different coloured pens, splotches of blood on the pages, dog-eared corners of the book. Once, I even splattered a few drops of juice, because on that particular page, I was having a lot of lows and I thought the juice would make it look more authentic.
Now, let’s all just remember for a moment that I was diagnosed as an adult. This wasn’t insolent teenager behaviour. This was a woman in her mid-twenties who was terrified of disappointing and being judged by the HCP to whom she would be handing the grotty book and its made up numbers.
I told the room my story of this last night and there was laughter – because the way I spoke about it was amusing. It was a cheeky anecdote. But at the time, it wasn’t funny. I was scared, I hated checking my BGL, I was paralysed by numbers that didn’t make sense and I didn’t know what to do about it. So I lied. Of course my HCPs knew that. And I knew my HCP knew.
But the question is about WHY people do this. The discussion needs to stop being about diabetes at that point, because really, managing BGLs and most other diabetes tasks is not the issue here. The issue is distress, anxiety, fear. And, in my case, I felt desperate.
One of the panellists made the point that the reason that he brought it up was because HCPs need to know what to do when someone is ‘faking’ their numbers. He’s right. I completely agree. And then there needs to be understanding of how to approach it, which is likely to be different with each PWD.
For me, it took until I found a HCP who I felt I could trust – one who wouldn’t judge the numbers that were out of range (which one HCP always circled in red pen, making me feel even more like a delinquent adolescent) – and was interested in knowing what was stopping me from feeling able to check my BGL.
When we worked through that, I was better equipped to not only regularly check my BGL, but also to deal with the numbers and act upon them. I came to understand that a number was nothing more than a piece of information that I could use to make a treatment decision – not an indication of me being a good or bad person.
Language does matter. And words count for a lot. Using the word ‘faker’ in this context is loaded with judgement and accusation, and even if that is not the intention, it made me – a person with diabetes – feel very uncomfortable. But mostly, it fails to consider the real problem at hand which is not that a PWD is making up numbers in a book. It is why they feel the need to do that.
On Sunday, I pottered around the front garden, doing a bit of weeding and tidying up and decided to cut a couple of small branches from the beautiful Little Gem magnolia trees we have along the fence-line, doing their best to hide us from the bluestone lane that runs along the side of our house.
I took them inside and arranged them in the largest vase in the house, setting it in the middle of the table in the kitchen. They looked magnificent – the leaves are the most beautiful glossy dark green on one side and a matte brown on the other.
Standing in the kitchen later that day, I said to Aaron ‘Aren’t the magnolia leaves gorgeous?’ ‘Yep,’ he answered. And then added ‘Are they steel magnolias?’
The term steel magnolia is a term used in the US South and refers to a woman who is traditional and feminine (that’s the magnolia part) and strong (that’s the steel part). I didn’t know this until quite recently – it isn’t a term we use here in Australia and for me, it was just the name of a film.
I can remember first watching the film years and years ago when I was babysitting. I can’t remember who I was babysitting, but I know that the kid was in bed and I was looking through the families VHS collection (I said it was a long time ago!) and there on the shelf was Steel Magnolias. I popped the tape in and watched it, and was a completely dishevelled mess of tears by the end of it.
There was no comprehension of what it meant in terms of someone living with diabetes – I had no idea. And yet, a little seed was planted: women with diabetes shouldn’t have babies or they will die. From somewhere, the seed became a huge tree the day I was diagnosed with diabetes, because one of the first questions I asked the endo treating me on 15 April 1998 was ‘Does this mean I can’t have children?’
On Sunday night, as I was flicking through the TV channels, there in front of me was the scene in the hair salon from Steel Magnolias. It was early on in the movie, and the women were discussing Shelby’s wedding (‘My colours are blush and bashful’).
I snapped a photo and snapped off the TV quickly, because I knew watching Julia Roberts have a hypo in a hair salon, and then two hours later die after having just had her beautiful baby was not going to be a good way to end the weekend.
I joke about this movie, I quote this movie, (frequently a juice is accompanied with the comment ‘Drink your juice Shelby’), and I shake my head at how ridiculous it is and how untrue – or at least old-fashioned – it is in its portrayal of diabetes and pregnancy. Most women with diabetes I know have a Steel Magnolias story.
I may mock it. But there is no way that I can watch it. Which is what I said on Facebook when I posted the photo I had just snapped of the TV.
The comments after my photo (and in some private messages) were from friends around the world with diabetes. The impact and consequences of this movie for women with diabetes – many of them having seen it for the first time as children or teens – is far reaching and actually did shape their decisions about having babies.
Yesterday, as I was standing in the kitchen making dinner, I walked over to the leaves on the table and gently rubbed one between my fingers. I thought of how in a few months’ time the trees out the front would be covered in beautiful white flowers that last for days before their beautiful petals drop to the ground. ‘White flowers‘, I thought, and shook my head because I always connect them with babies – my babies – lost.
And then my kid ran into the kitchen to tell me about something that had happened that day. I listened to her and watched her unstack the dishwasher, barely pausing for breath as she told me her funny story. We giggled together and I reached out and gave her a quick hug. And as I do more and more often, I marvelled at her just being there. That movie terrifies me. But not as much as the thought of not having had my baby girl.
Oh, Melbourne. How lovely it is to see your gorgeous self and drink your exquisite coffee. How miserable it is to be in your ridiculous Winter and to not be walking the streets of New York still, but I’m moving on….
Yep – I’m back home and, today, back at work and the reality of life is setting back in. Words cannot express how thrilled we were to see our kid after three weeks of being neglectful parents (her words), but on our last day in NY, when I checked the weather forecast for Melbourne, I did think about the logistics of sending for her to join us in the sunny Big Apple, rather than return to her here.
Lots and lots and lots to report back – both from the ADA conference in New Orleans, as well as the two weeks on the road, exploring Memphis and Nashville and returning to the familiar streets of New York. Stay tuned!
But for now, I am getting my head around a few new things on the diabetes landscape – mainly the changes for accessing NDSS supplies is different. I did indeed make sure that I had plenty of pump consumables and strips prior to going to the US, so at this stage, I am okay for supplies. But I do need to get in touch with my local pharmacy and have a chat about their processes for accessing what I need when I need it. I am most curious to see how the new program will work.
Of course, we’re in a position of complete and utter uncertainty as to what is going to happen following our federal election on Saturday. With bipartisan support for CGM subsidies, it is good to know that whoever forms government has pledged to make at least one aspect of diabetes a little more affordable to some PWD. Watching the roll out and implementation will be most interesting.
So for today, I am sorting through the debris from the conference and getting back on track for a very busy couple of weeks. It’s nice to be back. And it’s nice to be writing again. Come back and check in again if you get a chance.
Conference debris
My head is full of lists:
- Packing list
- Travel checklist
- Work to do list
- Hug-the-kidlet-a-million-times-before-we-leave-her-for-three-weeks list
- Diabetes-supplies-for-three-weeks-away list
And a list of great things I’ve seen online lately…
PLAID
Do you read PLAID – a research journal with a focus on people living with and inspired by diabetes? If not, you should. Why? Because it’s awesome!
Here’s the link to the latest edition. I’m really proud to have contributed to it because it is (as already mentioned) awesome, and this edition is all about the patient perspective. I sit very comfortable in there!
Unspeakably Wonderful
A new movie about Banting and Best and the discovery of insulin is hoping to be made by UK production company AngryMan Pictures. Details for how you can contribute to their crowd funding campaign are here.
Diabetic Living online
The Australian edition of Diabetic Living magazine has relaunched its website with a gorgeous new look. Check it out!
Totally (dia)badass
Take 5 minutes…
…and read these great blog posts that have been recently published:
- Anyone thinking of starting on an insulin pump and wanting a front seat view into what it’s all about should jump on board Type 1 Writes. Frank is a couple of weeks into his pump start and is sharing lots about what he is learning. I’ve been pumping for over 15 years now so have completely forgotten about dealing the challenges and successes of starting pump therapy.
- Lots of posts coming in from people who were at #DXSydney, sharing their experiences of using Libre. This post listed all the people who attended with links to their blogs. Have a read and share your experiences too.
- The Grumpy Pumper is a man of few smiles and, it would appear, few blog posts. Here is his first blog for the year. Pop by and leave a comment suggesting he blog more. Then it won’t just be me nagging him!
- Awesome pics in this blog from Scott from Rolling in the D. He hacked his Dexcom and this is what it looks like on the inside!
- Why do we need online communities? Anna from Glu gives some reasons here. And she’s right on every count!
- Also from Anna, this profoundly moving and brave post about her recent pregnancy loss. These stories need to be told. Thank you, Anna, for sharing yours. I am so, so sorry for your loss.
- This one is not a blog post, but a podcast. Stacey Simms produces some awesome podcasts over at Diabetes Connections. Do check them out!
Finally, if you’re looking for some more diabetes blogs to read, healthcare social media guru, Marie Ennis-O’Connor, has curated this list for you. There are 50 blogs to choose from. Get comfortable. Get reading!
Myths be gone
Team Novo Nordisk are doing awesome things to dispel myths about diabetes and address the issue of stigma. This latest video is terrific. Watch. And share. Share. Share.
Off to NOLA
It’s that time of year again. The American Diabetes Association Annual Meeting kicks off in New Orleans at the end of this week. I’ll be there, frantically tweeting.
I hit the road – well, air – tomorrow, so I’ll be out of touch for a bit as I embark on the nightmare transit. But I’ll be mainlining iced-coffee and beignets to keep awake and get in with it all.
Follow along at #2016ADA for the latest happenings in the world of diabetes.
New Orleans = Dr John. So here you go!
Twitter is a great source of discussion and yesterday this tweet from a diabetes consultant in the UK certainly did start an interesting conversation that had me thinking.
I should point out a couple of things before going any further. The tweet, asking if lack of guidance in social media is a concern, was in response to a tweet from someone else who shared a post from a Facebook page about insulin omission for weight loss. This is a very serious issue – one that I have written about here, (and elsewhere), and worked on a lot in the last decade or so.
Also, the consultant was absolutely not suggesting that social media is a ‘bad’ thing, and he is actually an advocate and user of online platforms, so this is not about the individual. It is about the issue at large.
Obviously, I am a huge fan of social media. Apart from finding online – and more broadly, peer – support an important part of my own personal diabetes management, I have built a significant part of my career extolling the benefits of online connections and the value of sourcing information and support from others living with diabetes.
The changing landscape of diabetes information and support over the last ten or so years has been significant. With more and more available online, and more and more people being online, there has been a real shift from healthcare professionals being the keepers of information and deciding what people with diabetes SHOULD know to a more egalitarian framework from which to source what we need.
While some may believe this to be the end of civilisation as we know it, (dramatic, I know), I consider this change terrific, because instead of having very controlled and conservative information on offer, there is now a veritable smorgasbord of material – and knowledge – from which consumers can pick and choose. Personally – I love being able to do that. Hearing personal experiences and picking up tips and tricks about day-to-day life with diabetes contribute to me making decisions about how to manage my own condition.
One of the suggestions frequently made about how to safely use SoMe is for it to be better moderated. My argument is that the power and value of SoMe platforms is that it is not moderated. Being free to share my ideas and experiences without fear (or perhaps care?) of judgement is not only useful, but also cathartic. And getting feedback from my peers often provides a different lens through which I can view a situation. Much of what I have learnt would not be found in the pages of a textbook, or offered in the office of a HCP. And that’s fine – there are other very valuable and important considerations that are shared in that context.
The idea of moderating online support – or any peer support, actually – is about control. It can be packaged up into a nice parcel of ‘protecting’ the person seeking the information, but that is not only patronising, but also incredibly demeaning. There is enough of that going on in more traditional settings – peer support is where there is freedom from that control – and a freedom to explore different ideas.
For me, peer support has always been about finding my tribe and learning from them. It has been about finding a source of sustenance and care that makes me feel better about my situation. It’s never been about replacing or substituting what I get from my HCPs.
So what is the role of HCPs in our support space? My belief is that it is a place for them to learn. There are times that it may be appropriate – and even encouraged – for HCPs to step in and share. On Facebook, one of Australia’s leading CDEs frequently comments and adds to conversations in closed diabetes groups. Her professional advice is always spot on – never judgemental – and her personal perspective (she has diabetes herself) shows just how it is possible to blend the ‘What-I’m-told-I-should-do’ with the ‘And-this-is-what-works-in-real-life’.
But not everyone who wants to be involved in this space has diabetes, nor should we expect them to. But I think for me, I have a very clear understanding of online and peer support works – and what everyone’s role is. When this works well, it works because it is being led by PWD; they (we!) are the ones driving the discussion and the focus. It’s not dangerous. We don’t need guidance. Because it is our space and we own it.
What peer support means to me,
Diabetogenic 