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I’ve been rationing.
I only allow myself one story a day from Kerri’s new book, because I want to rediscover her writing little by little. I skipped over the contents page, so I would to be surprised when I worked out which stories from her Six Until Me blog made it into this new collection.
So it was with delight (and then tears) when I opened up to page 56, three stories into the section called ‘Diabetes in the Wild’ and saw my favourite ever diabetes in the wild story.
Kerri tells this tale beautifully, and exactly as it happened. I know, because I was there. The general gist is that on one her visits to Australia, Kerri and I were sitting outside in the Melbourne sunshine enjoying a coffee. At the next table was a woman and her daughter. When she heard us talking about diabetes, she looked up and joined our conversation, hungry to hear about our diabetes lives, and sharing with us that her daughter had been recently diagnosed. It was only a short chat, but as is often the case with diabetes in the wild stories, it has stayed with me, and I thought about the woman and her daughter each time I walked by that cafe.
Reading the story again in Kerri’s new book, I remembered that day – the perfect blue sky, the frothy tops of our coffees, the way that we were talking a million words a minute as we tend to do when we are together. And I also remembered how five years later I had another chance encounter with the woman from the cafe. ‘You were both so lovely & made me feel so much better,’ she said. ‘I was so glad for your openness and the hope it gave me! I always wanted to tell you that.’
Kerri’s stories are full of the humanity of diabetes. It’s one of the reasons her blog was so popular for the 14 years she wrote it, and why her occasional posts now are so welcome and gratefully received by people in our diabetes community. Her writing is real and generous, and rereading each post is testament to why storytelling is just so damn powerful when it comes to healthcare. I may live on the opposite side of the world to Kerri, exist in an upside down time zone and have to navigate a completely different healthcare system, but there is a familiarity to every single word she writes.
If you’ve never read Kerri’s writing before, this book is the a great place to start. And if you have, the book is a brilliant collection to have on your bookshelf, to pull down every now and then, open at any random page and envelope yourself in her magical storytelling.
And so, Kerri: Congratulations on this book, my darling friend. I remember you once wrote about the friends that live inside your computer. I’m delighted that now, I have you living inside this book and on my rainbow bookshelf. You’ll be alongside the blue spine-d books of Helen Garner, David Sedaris and Jhumper Lahiri – some of my favourite writers. Which is exactly where you belong.
This week, my socials have been flooded with a topic that rarely gets much of a look in: menopause, and in particular diabetes and menopause.
It’s a welcome change! It was World Menopause Day on Tuesday, and with it came an avalanche of great content shining a light on this particular aspect of diabetes – something that really doesn’t get much coverage at all.
I shouldn’t be surprised that a lot of what I saw was people with diabetes sharing their own stories. These are the trail blazers who could see that there needed to be more awareness, more recognition, more attention to the issue and took matters into their own hands and shared their stories. (I’m looking at you Dawn Adams, you amazing woman!)
Here are just a couple of things that I’ve seen this week:
Dawn’s story at Diabetes UK about managing diabetes with menopausal hormone therapy (MHT, also known as HRT).
And Dawn again here at JDRF – UK with this gorgeous piece about how there are peer networks offering support for others going through perimenopause and menopause.
This Twitter thread from Diabetes UK, highlighting just how they’ve listened to the diabetes community and calls for more research and information about diabetes and menopause. Their Diabetes Research Steering Groups have made the topic a research priority in coming years. That’s what I call being led by the folks you’re representing!
Twitter has joined the chat with a new account focused exclusively on diabetes and menopause with this neat bio: Peer support for those with diabetes going through the menopause – all types of diabetes, all stages of menopause – we’re in it together. You can follow Menopause Mithers here.
Not diabetes specific, but worth a share, is this brilliant Instagram video from Dr Jen Gunter which looks at the origin of the word ‘menopause’ (of course I love this!). Oh, and there’s a whole chapter in her book The Menopause Manifesto about language.
I’ll be linking all of these to The Diabetes Menopause Project post as a one stop easy place for links about menopause and diabetes.
If you google the words ‘diabetes public health campaign’, you will find myriad offerings from around the world. There are the good, the bad and the outright ugly. (Click on links at your own peril.) And many of these campaigns are the foundation of broader messaging about diabetes.
Why is it so hard to get messaging about diabetes right, and how do we fix years of getting it wrong?
The vast majority of type 2 diabetes messaging focuses on personal responsibility. It could be about losing weight, losing centimetres off your waist circumference, eating more fresh fruits and vegetables, being more active … you name it, it’s up to YOU.
It’s not just type 2 diabetes. Messaging aimed at addressing specific diabetes-related complications for all brands of diabetes also has a strong focus on personal responsibility: get screened/talk to your HCP/don’t miss appointments/don’t bury your head in the sand/look after yourself. The implication is that all accountability lies at the hands of the person with diabetes.
There are so many assumptions and that is one reason the messaging really hasn’t worked. There are more reasons, of course, and these are complex, multifaceted, and convoluted. You can almost understand why going with the easy ‘fix yourself’ messages are the ones that have been used.
The thinking behind so much of what we think and do about diabetes is misguided because too often we look to apply solutions that are medical in nature when we need to be considering social solutions. In a recently published New York Times article, writer Roni Caryn Rabin suggested a need to reframe (type 2 ) diabetes ‘…as a social, economic and environmental problem, and offer[s] a series of detailed fixes, ranging from improving access to healthy food and clean water to rethinking the designs of communities, housing and transportation networks.’
Telling people to eat better without establishing if there is affordable fresh food available and affordable, and the knowledge for what to do with a box from a farmers’ market, or to walk for half an hour a day without first asking about safe and accessible walking paths, leaves out a very big part of the equation. Assuming people have those structures in place is naïve, and yet that is what is assumed time and time again.
And telling people to not miss screening appointments lest they develop a diabetes complication is perfectly sound advice. Provided there are health professionals available, accessible, and affordable within decent timeframes. It takes only a cursory glance on Twitter to see that people with diabetes have difficulties when it comes to making those important appointments – and, for many, that’s been even worse with COVID.
Individual responsibility goes only so far when there aren’t the social and system structures around to support individuals. And it doesn’t go anywhere when generic messaging is the only messaging employed with the expectation that everyone will respond, and act as directed. Because there’s no time for nuance in a snappy campaign message.
We see time and time again that vulnerable people are disproportionately affected when it comes to health outcomes. In diabetes, we talk about high-risk groups, but what is the point of that if there are no solutions that are targeted for specific cohorts? Plus, if the at-risk messaging is thrown into the mix of the ‘fix yourself’ messaging, it gets very murky. Are people also now meant to be personally responsible for their backgrounds, age, family history…?
Messaging doesn’t only live on the websites and socials of those creating them. There is often a PR machine behind them that does its dark PR arts magic to get the message out there beyond those confines. News outlets pick them up and run, run, run with the messaging, dumbing it down to soundbites that often focus on anything that will get cut through. And often that’s the ‘fix yourself’ messaging.
And of course, the flow on effect of that is more blame, more shame, more stigma, more misinformation, more judgement, more discrimination. More people in the community not familiar and intimately connected with diabetes believing they’ve learnt something new, but really, they’ve probably only added more about how lacking people with diabetes are when it comes to personal responsibility. And on they go to perpetuate the myths about diabetes and personal responsibility.
The times the messaging is right is when people with diabetes are directly involved in developing and finessing it. We can predict the ramifications of messaging gone wrong because we’ve been on the receiving end of it. There’s never not a good time to engage people with diabetes, and I’ll always, always advocate that. It’s good policy because #NothingAboutUsWithoutUs.
But in the case of developing messages about diabetes, engaging people with diabetes can reduce harm to us. And surely that should be the starting (and middle and end) point for anyone doing anything about diabetes.
It’s World Mental Health Day and that seems as a good as any a day to speak about diabetes and mental health. Actually, every day is a good day for that, but with every health organisation’s social media manager’s attention turned to today’s health promotion day, I’m jumping on that bandwagon and adding this post to the myriad on Diabetogenic that address the very significant issue of diabetes and mental health.
I don’t think it’s fair to say that we don’t speak about diabetes and mental health these days. We do. As is so often the case, the conversations started in the community, led by people with diabetes and then were slowly, but surely picked up by other stakeholders. Many health professionals are tuned into mental healthcare being part of diabetes care. And in recent years, diabetes organisations have followed the lead of the community by running public health campaigns aimed at raising awareness of diabetes and mental health. Thanks to peer-reviewed research, we have evidence to show that diabetes impacts mental health and that mental health impacts diabetes.
But even if we say confidently say that diabetes mental health is on the agenda, there is still good reason to believe that more light be shed on the topic, and more attention be given to it. And to really advocate for mental health care to be seen as part and parcel of diabetes care. I really do believe that would make a huge difference.
When we talk mental health in diabetes, there’s a lot to consider. Of course, there are the diabetes-specific things like diabetes burnout and diabetes distress. Plus, eating disorders can take on a particularly diabetes-focus with conditions such as diabulimia (which really, really needs to be listed in the Diagnostic and Statistical Manual of Mental Disorders – it’s such a difficult, under-researched, misunderstood, yet very present reality for so many people living with diabetes).
But there are also ‘every day’ mental health conditions that are increased when someone lives with diabetes, such as depression and anxiety. Just how much of that is linked to diabetes?
And for those of us who dabble in the advocacy world, there is advocacy-related burnout to contend with too and that can and does start to impact our own diabetes management and mental health.
I couldn’t even try to estimate the number of times I’ve given talks about diabetes and mental health from a lived experience perspective. But I am always happy to be asked, and always willing to talk about it, even if it means being quite vulnerable and exposed when I do so.
I remember when my work in diabetes organisations started to focus more on mental health, and I also remember when those discussions were accompanied by a change in narrative. Suddenly, a lot of what we spoke about – from diabetes-related complications to risk reduction – came with a side serve of mental health commentary. It helped to show the undeniable link between the two. And the community responded to that favourably.
Diabetes has never just been about glucose levels, or carbohydrates. And there are healthcare professionals and researchers and organisation leaders that understand that – probably because they have spent time really listening to people with diabetes, rather than just churning out the old tropes about the ticking time bomb of diabetes. Actually, those tropes have probably contributed to a lot of diabetes-related distress.
Starting conversations about diabetes and mental health can be difficult. I like to think that all HCPs these days are aware of the intersection between diabetes care and mental health care, but sadly, I don’t think that is necessarily the case. If the stories I frequently see on social media are anything to go by, there is still a way to go when it comes to having frank, open, honest discussions that recognise that the mental health of people with diabetes needs attention.
These days, I know that my mental health is really not that great. While I know that may seem alarming, I actually see it as progress. Being able to identify that I am feeling this way means I can do something about it. In years gone by, I had no awareness about my mental state. I didn’t know what to do about it.
When I talk about how my mental health is faring – especially when feeling as I do now – there is often surprise. I am not backwards in coming forwards and I know that many people see me as confident, assertive, and self-assured. And I am that way. I’m also pretty bubbly and positive about life in general. But with it comes some dark times and dark thoughts and dark days that are really not especially easy to manage.
I don’t know about others, but when things are dark, everything seems bigger and scarier. I had a low the other night that hit below 2.0mmol/l, and ordinarily I’d deal with it and move on. But during the hypo and since then I’ve not been able to stop thinking about it and worrying about it. It never pays to play ‘what if’ in diabetes, and yet most of my thoughts when remembering the other night have started that way. The constant crap that I’ve been dealing with in the advocacy space for far too long now feels unbearable, and seems so, so nasty that I feel a wave of anxiety just being online. The burden of simply doing diabetes feels massive. The other day, I cried when my insulin pump demanded a battery change. And I can’t shake this overwhelming feeling that I have no idea what I am doing with my own diabetes management and am so anxious about complications, even though there is no good reason for it. These are the dark feelings. The reason sleep gets disturbed. The reason that my heart beats faster.
If I could wave a wand and make one thing come true this World Mental Health Day, it would be that everyone with diabetes has access to mental health care as part of routine diabetes care. And if I could wave that wand for a second time, I’d want my own mental health to build back up and become a little more robust than it is right now. That would be really, really great.
Six weeks ago, my sister almost died.
They are seven of the most awful and terrifying words I’ve ever typed and my heart breaks and mind wobbles just looking back at them.
Almost died.
She contracted bacterial meningitis, and if not for everything happening in the way and in the timeframe it needed to, I fear that the word ‘almost’ would be missing from the first sentence of this post.
Let me tell you about my sister. She is incredible. She is smart, funny, savvy and sassy. She scares me which is bizarre because I am the older of the two of us, she is five foot (and half an inch) and is, in my mind, still fifteen years old. But the reality is that she has a ferocious presence. She is a force in meeting rooms. And in family discussions in living rooms. I’ve watched her take down real estate agents and beat them at their own game at auctions. I’ve seen her negotiate, walking away when every one of her demands has not been met, only to have whoever she was negotiating with chase her down the street, not only giving in, but throwing in a proverbial set or steak knives for her troubles. Shakespeare may have written the words ‘Though she be but little, she is fierce’ hundreds of years before my sister was alive, but those words were written in preparation for her.
So to suddenly see her helpless, scared and incredibly vulnerable and horrifically sick was a shock.
My sister has never been really unwell before. She doesn’t have the firsthand knowledge of navigating the health system the way I do. She doesn’t ‘speak medical’. She hates hospitals, and other than a quick stay for a tonsillectomy when she was 5, has never spent the night in one. And so, knowing that she was being taken away in an ambulance with so much uncertainty, and not being allowed to have anyone with her, was horrid. I knew she’d be terrified. COVID restrictions meant that there were no visitors in A&E, but then, when she was moved onto a ward she was put in isolation because, in addition to bacterial meningitis, she also had an unknown infection. She spent four days without anyone able to console her, hold her hand, rub her back, and tell her everything would be okay. And remind her how very much she is loved.
She’s recovering and has come through it with some effects that she is going to have to learn to manage. She is also dealing with the trauma of it all, and piecing together in her mind exactly what happened. Watching her go through it is hard because she is second guessing herself at every step and I just want to tell her how incredible she is; how incredible her brain is, doing it all it can to repair itself and manage the trauma. But mostly, I want to tell her that more than anything I am so glad that she is here. She will start to feel like her old self, even if she is forever changed. We will laugh and giggle and be mean to each other and relentlessly make fun at our parents like we used to. She will continue to kick arse at every single thing she does. She will keep on being the best sister I’ve ever known, and a fabulously inappropriate aunt. She will just do it all now with this horrible experience in the review mirror. Right now, it’s still really close, but it will move further and further into the distance. I have promised her that.
Six weeks ago, my sister almost died.
I don’t know who I would be without her. I’m holding her very close at the moment. Sisters are weird. We can oscillate between loving each other and needing space within minutes. But now, I just want to fulfil my role as big sister and protect her while she heals.
My sister read this post and consented to me sharing it. She didn’t consent to the photo, but I’ll deal with the backlash when I next see her.
Diabetogenic 