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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.

Two little girls in red and white standing next to a car. The little one has her hair in pigtails and the older one has her hair in a ponytail. They are both drinking cartons of Big M (milk) through straws. There are trees behind them.

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.

Diabetes comes with a side serve of guilt in so many ways. Glucose levels above target? Guilty that I’m contributing to developing diabetes-related complications. Need to stop to treat a hypo? Guilty that I’m not participating fully in work, or focusing on family and friend. Forking out for diabetes paraphernalia? Guilty that the family budget is going to diabetes rather than fun stuff like (more) doughnuts from the local Italian pasticceria. Eating (more) doughnuts from the local Italian Pasticceria? Guilty that I’m not eating the way most diabetes dietitians recommend. Depositing the pile of diabetes debris on the bedside table? Guilty that I’m the reason the world is going to hell in a handbasket because of all the waste. 

The other day, I did a show and tell of diabetes tech. I brought along all the things I use, and things I don’t use. I’d been asked to show and explain just how the tech I use works and what it all looks like, but I wanted to show that there were other options as well. The people I was speaking with had a general idea of what diabetes was all about but didn’t have the detail. So, while they understood what an insulin pump was, they didn’t really understand what it means when someone says, ‘I need to change my canula’.

I did a pump line change to show the process and all the components. I didn’t need to change my sensor, so I brought along a spare and a dummy kit that is used for demo purposes. I also had some disposable and reusable pens and pen tips, blood glucose strips and a meter, alcohol wipes and batteries for the devices that need them. 

At the end of my demonstration and discussion, someone looked at all the debris. ‘That’s a lot of waste, isn’t it?’ I nodded. ‘It really is. And I think about that all the time. I hear people with diabetes lamenting just how much there is.’

‘It seems that what you use produces more waste than if you were using the reusable pens and a meter you showed us. Wouldn’t it be better for the environment if you did that?’

Yes, friend. Yes, it would. But it wouldn’t be good for me, my mental health or my diabetes. I was reminded of when our little girl was new and a man at the supermarket saw frazzled new-mum Renza covered in baby vomit and probably wearing my PJs, juggling baby and a box of Huggies and asked why I insisted on using disposable nappies rather than cloth. ‘Disposable nappies take 100 years to break down.’ In my new-mum fog, I looked at him, wondering what on earth I’d done to deserve this unsolicited approach, and said ‘Yes, I know. But if I had to deal with cloth nappies it would take me 100 seconds to break down.’ I blabbered on about other ways that we are more environmentally responsible, and then scurried away, adding environmental guilt to mother guilt and diabetes guilt

Diabetes waste is horrendous. There’s a lot of it. And we should think about it. I love the work that Weronika Burkot and Type1EU led a few years ago. You can still find details of the Reduce Diabetes Technology Waste Campaign online. The project aimed to highlight the amount of diabetes tech waste one person with diabetes produces in 3 days, 1 week, 2 week and 1 month. It was startling to see the piles of trash accumulate. 

But it can’t be solely the responsibility of the of us living with condition to address the issue. It’s brilliant that we talk about it – and we should do that. The Type1EU campaign got a lot of people thinking and talking about it for the first time. And we absolutely can and should do what we can to minimise our waste. I make sure that everything possible is recycled; I stretch out canula changes to four days when I feel it’s safe to do so; I restart sensors three or four times; I refill pump cartridges, sometimes to the point of them getting sticky; I use spent pump lines to tie the rose bushes in the garden; I’m using a fifteen year old pump – the last time I bought a new one was in 2013. I do all these things to try to reduce waste. I do what I can. I last changed my lancet one 2018. And, as an advocate, I have sat around tables with device manufacturers and begged that they consider how they can be more sustainable in their approach to diabetes tech, asking them what can be reused? What can be easily recycled? What can be removed from current packaging?

But the reality is, we don’t get a choice in how products are packaged. We don’t get to choose what the devices look like or the excess packages that surround them. We don’t get a say in the requirements of regulators who place stringent demands on manufacturers to make sure products meet safety obligations. 

Laying into people with diabetes as needing to be more responsible without looking further upstream at just who is responsible for the product we pick up from the pharmacy, or have delivered to our door, seems unfair. 

I gently pointed out to the person who was (most likely unintentionally) piling on the guilt with his comment about how I was contributing to the despair that is the condition of our environment, that his comment really was unjust and misplaced. To suggest that someone with a crappy medical condition that requires so much effort and attention, abandons the technology and treatments that go towards making it just a tiny bit less crappy is not really addressing the root problem. It can’t all be about individual responsibility. There needs to be scrutiny on everyone along the supply chain, but the least scrutiny and blame should lie at the feet of those of us with diabetes. 

Image is from this resource. I wrote and oversaw the design and photography of the first edition of this booklet years ago when working at Diabetes Victoria.
Promotional poster for The Human Trial. The films name is written in large letters with the words 'Would you go first?' above. There is the silhouette of a person standing at the top of the poster.

Have you see The Human trial, the documentary film about searching for a cure for type 1 diabetes? I saw it a while ago, and then again last week. It’s remarkable viewing.

I’m delighted to publish this guest post from Elizabeth Snouffer, freelance writer, diabetes advocate and a remarkable woman I’m fortunate to call a friend. Elizabeth wrote this review of The Human Trail just after it was released to US audiences, but I wanted to wait to share it until it could be viewed by people from around the world. Thanks, Elizabeth, for sharing your thoughts.

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The Human Trial documentary film is an intimate look at the overwhelming, messy, and unpredictable nature of living with type 1 diabetes alongside a similarly defined clinical trial seeking to fund and find a cure for the disease. Directors, Lisa Hepner and Guy Mossman, have painstakingly worked on their documentary film for more than a decade as Producer and Writer, and Director of Photography respectively. Abramorama released the film in theaters on June 24, 2022.  

Diagnosed with type 1 diabetes at age 21, Hepner, who narrates the film, represents millions of people in the diabetes community – including families, physicians, advocates and more – who would do anything to put an end to the auto-immune condition that leads to terrible complications and early mortality.

Mossman calls his documentary an observational film and it is hard to disagree.  The cinéma vérité approach allows the audience to experience the relentless burden diabetes exacts on the people it touches.  In the first scene, we watch Hepner prick her finger for blood while her 3-year-old son Jack looks after the test strip in the glucose meter. He is excited but turns quiet while we observe the countdown and Jack tells his mom the result—2-9-4.  Hepner brushes off her disappointment and Jack quickly moves on asking Dad to test his glucose.  Mossman complies with the child’s request, but the result, 96 mg/dL is startling. The health gap between Jack’s parents is a poignant reminder of the difficult impact disease has on a family. “I’ve spent the last 30 years trying to outrun diabetes, but it’s not working,” says Hepner as she prepares for an appointment with her nurse practitioner, expressing hope to stave off retinopathy and blindness.  Without adequate care for blood glucose stability, what will tomorrow bring for this young family?  When the well-meaning public questions prioritizing a diabetes cure because insulin is often misrepresented as the answer, The Human Trial offers a strong rationale for funding diabetes cure research.

The film is always on the move, symbolic of the stamina it takes to both manage a chronic illness and fight for cures.  From her car, Hepner asks “Why is the cure for diabetes taking so long?”  and we wonder, too. Viacyte, a California Bio-tech company, gives Hepner and Mossman real-time access to film various aspects of their first clinical trial – only the sixth-ever embryonic stem cell trial in the world.  It’s clear the film has moved away from the personal sphere into medical science and in a sense, the business of diabetes.  We become onlookers to an employee filled conference room celebration and listen to former Viacyte CEO, Paul Laikind, announce FDA approval for the biotech’s first human clinical trial with a bio-artificial pancreas. We feel the impact of their excitement and anxiety.  Will our methods work?  Will we run out of money?  

Trials take place across the world but Hepner and Mossman’s camera lands at the University of Minnesota where the first participants, who are high risk for acute life-threatening complications, are implanted with multiple small-format cell-filled devices called sentinels to evaluate safety and viability.  Maren, aka Patient 1, suffers from hypoglycemic unawareness and seizures, and Gregory, Patient 2, is concerned about vision loss.  Their ability to deal with adversity is uncanny, and their fortitude as pioneers on a surgical journey to the unknown is inspiring to watch. We observe the operating room from above as Maren and Gregory are implanted and witness the risks associated with the new therapeutic approach.  They have similar questions to the Viacyte team, but the stakes are higher.  

Could I be cured?  

Participants in clinical trials aren’t usually given any indication of outcomes before trial completion which is understandably excruciating for Maren and Gregory during the trial.  The countless surgeries and tests are grueling, and we are gripped by their resilience on the screen and our mutual desire for a positive outcome. 

The Human Trial gives visibility to the invisible—the often-hidden and challenged lives of people with type 1 diabetes and the thousands of scientists and researchers working arduously to fund and discover cures. The film’s subjects are not just fighters; they have accepted how obstacles, even failures, are a part of the journey to success.  I call that courage.  

Please click here to see where you can watch.

Elizabeth Snouffer is a freelance writer living in New York City. 

Let’s talk about perimenopause, periods, and diabetes. I’ll just wait a moment while a heap of people log off right now.

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If you’re still here, hi! Shall we go on? 

For the first, I don’t know, maybe 12 years I had my period, I had absolutely no regularity to it at all. I could never understand people who told me they got their period like clockwork, because for me the clock worked intermittently. It was less ‘that time of the month’ and more ‘that time of whenever’. Sometimes it came every three months. Sometimes every four and a half. It was a little surprise that showed up without warting when it felt like it, stayed for a few days, was minimally annoying (never particularly heavy and hardly any cramps at all), and then disappeared again, only to appear when it next felt like it. I spoke with my GP, and they weren’t concerned, and told me to celebrate the fact that I didn’t need to deal with period palaver each and every month. 

This was all good and well until I was ready to have a baby.  A regular period suggests that ovulation is happening regularly and that is kind of important if you need an egg to be fertilised. That wasn’t happening for me. Some fun fertility treatment (‘fun’, in this instance, means ‘frustrating, lots of tears, desperation and wondering why my body wasn’t doing what it was meant to do’), and I managed to get pregnant and have a baby. 

And then, from six months or so after I had our daughter, my periods started happening regularly. Like clockwork. It was as though pregnancy had rebooted the reproductive bits of my body and for the last 18 years, I’ve been paying GST on period products every month. 

During this time, I learnt that periods and diabetes don’t play nice. I’ve struggle to find patterns in my cycle so as to run different temp basal rates on my pump to accommodate. Anytime I’ve thought I’d nailed it and settled into a neat routine, the next month everything would go haywire. I guess I settled into another routine: a routine of no routine, where I just had to wing it at whatever time in my cycle things started to look a little sketchy. Loop certainly helped. I could see there were days each month when it was working overtime for no apparent reason, but those days didn’t correspond with the days the previous month. Or subsequent month…

And so, that brings us to present day when it’s time for another life transition or whatever euphemism you want to use to avoid using words that distract attention from hormones, uteruses, blood, and vaginas. 

The pretty regular cycles have stopped. I’m not back to three or four (and a half) monthly, it’s more like six weeks or three weeks or some other weird timeframe. My period is on the most bizarre schedule now that is, quite frankly, bloody (yes, I know) annoying. And when it does deign to stop by, it either stays around longer (as in days…) or pops in for just a day or two. Or, even worse, seems to be done after a few days, only to return a day afterwards. Truly, it sucks!

I have made an appointment with my gynaecologist to check-in (it’s probably cervical screening time again) and for a check-up. I know that my experiences are in line with what heaps of other diabetes friends have experienced (yeah, we turn to each other because where else is there to go?), but I have a heap of questions to ask, and accept that there may not be answers. 

And I’ve spoken with my endocrinologist. I think that I only ever think of my endo as my ‘diabetes doctor’ but really, her expertise in hormones is pretty bloody useful right now. And the fact that she does some work in a menopause clinic is hugely useful! 

But here’s the thing. There are not pages and pages of information out there about diabetes and menstruation or diabetes and menopause. Or how diabetes affects your period during perimenopause. In fact, as with so many things that affect those of us dealing with periods (when they start, when they happen and when they stop), there is a dearth of information and very little research. I mean, it’s no surprise, because the patriarchy in health (as everywhere else) is all powerful. (Don’t believe me? Look at the number of resources about, and treatments for, diabetes and erectile dysfunction as compared with diabetes and menstruation or diabetes and menopause…)

Meanwhile, I just keeping trying to work it out, and speak with friends with diabetes to listen, learn and laugh as they share their stories. And watch as we start to open up more and write more and talk more in our own communities and advocate for more attention. Because that’s the story of diabetes community – we start the conversations that need to be had and that sets off a chain reaction where others get on board. So…get on board!

A photo of my hand holding Dr Jen Gunter's book 'The Menopause Manifesto'. Black writing and a megaphone on the pink cover. There is a blurred bookshelf behind.
Dr Jen Gunter’s Menopause Manifesto is really an incredibly useful resource. It’s not diabetes specific (although, there is general information about diabetes that is excellent). Click on the image for where to purchase. 

More? Here’s The Diabetes Menopause Project.

I recently was invited to run a workshop for health advocates (not just diabetes) who are affiliated with health and community organisations either as employees or volunteers. I was asked to primarily focus on safety in advocacy communities – both online and in person. All participants were women. This was interesting to me because the workshop was open to anyone who was a health advocate – not just women. I could see why, after a few short minutes in, it was women who were keen to come together for this topic and talk about it in a safe space, with other women. 

I was delighted to be involved for a couple of reasons: 1. It’s important and 2. I know that when I run a workshop properly, I walk away learning a lot. And this was a topic I wanted to learn about. I set about developing a very vague program that would leave a lot of time for experience sharing and co-developing ideas that could be used by everyone in the room. I had a few discussion starters and things that I think have worked for me, so they formed the basis of the workshop, but most of the suggestions came from the day and with permission, I’m sharing some of the ideas here. 

Before I do that, though, I want to highlight the overarching message was that health communities and groups are really important and really valuable. I know I frequently talk about not needing to love everyone in the diabetes community, and how critical it is to find the people you want to be around, who are supportive, who build you up, who you build up and who make you feel safe. That squad becomes sacred. Everyone else spoke of the same thing. One woman mentioned that it had taken her years to find the right people in her health community before truly understanding how peer support can be so beneficial. Many mentioned that it took time to work out exactly what they were looking for – was it friendship, solidarity, advocacy mates, opportunities to grow professionally? There are as many reasons to ‘do’ peer support as peer support models!

But even knowing that, it came as no surprise that every single one of the dozen or so women participating in the workshop had examples of where they had felt unsafe, vulnerable, targeted, or exposed in their own health communities. As stories were shared, there were frequent looks of recognition and heads nodding. Many said it was the first time they had ever spoken about these experiences. And others took time to warm up, asking several times if anyone would know what they had said – worried that they may be identified. This reminded me a little of the Ascensia Women’s Diabetes Social Media Summit I facilitated last year. I’d probably done close to a dozen of those before and each one involved a lot of social media outreach while the event was taking place. But this event was different. This one, was not quite as open. As facilitator, it’s my job to read a room, and the reading I got was that there were a group of women who wanted to share in private. And so, we did. As happened again at this recent workshop. 

None of the ideas I’m sharing will identify anyone, and this post has been reviewed by the people who attended. Safety of the women is my primary concern. So, here are some ideas that may or may not be of use to folks out there:

  1. You are not alone. Feeling unsafe in a community group can feel isolating, especially if there are cliques and groups that seem to form alliances. But there will be others you can turn to – often outside the group. I know I have turned to people outside the diabetes world at times to learn about how they have managed certain circumstances. It’s fascinating just how transferable things can be and how universal others are!
  2. There are reasons that functions such as block and mute are available on all social media platforms. But go one further. By blocking certain accounts, you may still see people you would prefer to distance yourself from. Mute their name, their account handle and, if they are associated with any specific words, terms or hashtags, mute those too. (So, want to not see my stuff? Block #LanguageMatters and mentions of coffee, stripes, bookstores, baking and red lipstick.) 
  3. Keep records. Even of things that seem irrelevant. I have an online folder where I collate anything that has ever made me feel unsafe or helpless. It’s shared with others, so they know what’s going on. 
  4. Talk to your workplace or associated organisation. This was one of the points that I wanted to raise. As all participants were either employed by, or volunteers for, health organisations, they have access to several services to support them if they feel unsafe. Perhaps they can use the organisation’s EAP which can be a terrifically helpful resource. It’s also important that those records you keep are seen elsewhere and there is a timeline of when things happen, and they are reported in real time. I do this a lot, mostly because it helps to talk to someone. Sometimes it’s done proactively. Other times, it’s after something happens. For example, the first time I spoke about DIYAPS and a slew of HCPs made formal complaints about me daring to talk about something so dangerously off label. Or the time a diabetes educator wrote to my employer after I called them out for tone policing me. There have been the multiple times people in the low carb community have become aggressive and threatening. Or just weird. There have been times when I’ve spoken with the CEO or other senior managers about situations and as well as being great sources of advice and comfort, it also means that they have an idea of how things started and are going. Oh, and it means there are few surprises!
  5. Walk away – for a bit or a lot. No one is obliged to continue to be involved in advocacy spaces or being part of a community if it is not working or if it is feeling unsafe. 
  6. Go incognito. My name and face have always been associated with the advocacy work I do because that is what I have chosen. But there are times that I wish I’d come up with a nifty pseudonym (Blossom?) and a cute meerkat picture. I know that probably wouldn’t have been possible considering the number of quite public facing things I do means there’s limited anonymity. But there are lots of super effective advocates who are anonymous when doing any online work, and that is absolutely an option. It doesn’t mean that you don’t need to do any media or presentations. It just means not linking the public stuff to your socials. A couple of women at the workshop do that, and I somewhat embarrassingly squealed when I realised that they were amazing anonymous campaigners I’ve learnt so much from over the years!
  7. Learn the anatomy of gaslighting. It’s an artform, but it’s a predictable one. And expect to be gaslit if anyone ever takes objection to what you do – especially if the source of that objection is from a group that is used to not being challenged. Don’t believe me? I present exhibit a: #AllLivesMatter and exhibit b: #NotAllMen. The term gaslighting was coined to refer to misogynistic abuse and manipulation and it often presents that way these days. Learn how it works and you’ll be astonished at how frequently it is used to disempower women.
  8. Be prepared for your work to be challenged; to be told you’re not good enough; to be told that you are not worthy; to be told that your work is irrelevant and insignificant; to be criticised for your successes and to be diminished. The first time that happened to me, I was crushed. Now, it’s only mildly soul-destroying. (This isn’t to say that people can’t disagree with your work. Of course, they can, and they will. And that’s perfectly fine. It’s when your work is dismissed and disparaged, and you are personally targeted that it can be especially challenging.) 
  9. Cry. This was my suggestion. I know it sounds ridiculous, but it really helps. I think it just comes from the idea of giving myself permission to not have to be confident all the time and to admit when I am feeling especially vulnerable. When there were weird emails coming to me about fundraising activities, I spent a lot of time bawling. 
  10. Be public about how you are feeling and your experiences. This is a tough one, because it can add being vulnerable onto an already vulnerable situation. But if you are able to assess if it is going to help you get through it, go ahead. 
  11. Ignore it. That sounds naïve considering some of the points I’ve shared, but we all agreed that in some instances, this does work and is the best way forward (albeit with keeping notes). 

It is undeniably true that women face a lot of rubbish online and a lot of that is from men. Women who dare to be strident, vocal and stand up and are confident often get it more. We see it everywhere. But I will add that as a straight, white cis woman, I know that the lousy behaviour I’ve experienced is nothing compared to women of colour and people from the LGBTQIA+ community. I’m so grateful to people from those groups who are bravely sharing the horrible attacks they receive and absolutely feel that doing what I can to support them, listen to them and believe them is essential.  

The women in the workshop are so committed in their advocacy efforts. It seems unfair that they have had periods where they’ve felt unsafe or targeted. I know how hard it is. Maybe the tips in this post might help others and if they do, great! And if you are reading this and prickling because you object to what you’re seeing, please remember that these experiences are from women who have had a tough time. That doesn’t in any way delegitimise what you have experienced. But I hope that everyone does understand and accept that in living with the patriarchy and with internalised misogyny pretty much part and parcel of everyday life, women do face an unfair share of rubbish, including in advocacy communities. 

Stress impacts diabetes in different ways. And of course, everyone’s response is going to be different. 

Before Loop (which now feels like almost a lifetime ago), the effect of stress on my glucose levels was tricky and unpredictable. At times, it would make me high. Other times, I’d be in Hypotown (the town no one wants to visit) for hours, without any respite. The clever Loop algorithm tidies most of that up for me these days. 

But when it comes to diabetes, stress doesn’t only impact what I see on my CGM trace. It’s far more than that. Loop can only do so much… Insulin automation doesn’t mean diabetes automation. And it certainly doesn’t mean life automation. 

Let me talk about how it’s affected things in the last couple of months …

To some, it might look as though I have become lazy about my diabetes management. I have run out of insulin in my pump more times than I care to admit, scrambling to find my spares bag to refill the canula. I ignore the alerts, silencing alarms and putting the task that needs to be done out of mind. 

I’ve let the batteries on my pump and RileyLink wear almost right down. In fact, the batteries have got to the point where they are so crucially low Loop has stopped working. Even the Red Loop Of Doom on my Loop app hasn’t been enough to swing me into action. 

I’ve almost run out of insulin. I never do this. Ever. I have a system that works for ordering new scripts to make sure that there is always at least two weeks’ supply, and then back up plans for my back up plans. And yet, there I was, staring down the last few drops of insulin in a penfill. I don’t use insulin pens. I use vials. But I’d run out of vials and was using a penfill that I have for absolute emergencies. 

This had become an emergency. 

Same goes for pump consumables. I was reduced to searching the depths of my diabetes cupboard and discarded handbags looking for an infusion set, desperately hoping that there was at least one, somewhere, that would do the trick before I had to knock on the door of my neighbour, asking her to tide me over.

This is one part of diabetes burnout for me – the way that I deal with my diabetes tasks. It’s not feelings of resentment that I must do those tasks; it’s not feeling distressed that I must do them. It’s not even feeling a paralysis about doing them. It’s simply not caring enough about them to take the time and energy to engage my brain and actually do it. 

I know that when I am stressed, something’s gotta give, and for me, that’s always been doing diabetes. 

I cannot tell you how much having automated insulin delivery sweeps up a lot of it. Forgotten boluses get sorted by Loop. Sure, it may take a little extra time and mean a bit of extra time above my upper range limit, but if I don’t engage, Loop will bring me back in range soon enough. 

The low-grade nausea I’ve been living with for the last month means that eating is sometimes difficult, but I don’t even need to think about what that means for glucose levels, because Loop mostly does it for me. 

And sleep! Sleep the gift that Loop keeps giving has been interrupted, not by diabetes, but by waking stressed. Or, as has happened twice in the last week, with a splitting headache, so painful that the throbbing has woken me from a deep sleep. Pre-Loop, sleep disturbances would wreak havoc with my glucose levels (often because most of the time those disturbances were because of my glucose levels). But now, as I see the upward spike start because I’ve been woken in the middle of the night and glucose is being dumped because apparently, I’m now up and awake, Loop kicks in with an ‘I don’t think so’, and that spike is shut down quickly.

But the nausea is debilitating physically. And being woken in the middle of the night is exhausting. And the stress is leaving me feel a little hopeless all around, to be honest. Teary, emotional, tired. And burnt out. 

Many years ago, after a couple of periods of intense burnout, I did a smart thing and found a psychologist to help me. Together, we learnt to identify the triggers that precipitated burnout. This has truly become one of the most powerful tools in my diabetes emotional wellbeing arsenal, because learning when I am heading down the slippery slope of burnout, and realising it’s coming, has meant that I’ve been able to address it before I get so deep into that dark space, it becomes challenging to come back from. 

So, right now, I know this is happening. I can feel the stress and the physical manifestation of it, and I can see how it is influencing my diabetes. Today, I spoke with my psychologist – in a way waving a white flag of surrender knowing that I need someone else to come in and help me through this, because I can’t do it myself. 

The win is that I’ve seen it and I’ve recognised it. The win is I’m seeking help. The win is that I’ve caught it before I’m plunging to dark depths (I hope). 

It’s not a win that I’m feeling this way. It’s not a win that this level of stress has started to affect so much, including my diabetes. It’s definitely not a win that I’ve reached the point where I’m staring down the path to diabetes burnout despite the reason being un-diabetes-related stress. 

But that’s how it goes. Diabetes becomes part of it. Of course it does. Because diabetes is always part of it. Always part of everything. Always hand in hand with whatever else is going on. Stress and diabetes leading to burnout. One of the few equations in diabetes that I can count on.

I saw this image by illustrator Alessandra Olanow and thought it perfectly summed up what is going on inside my head right now.
(Click to be taken to Instagram for details.)

This morning on ABC Melbourne’s Conversation Hour, the topic was how people are using the internet to self-diagnose mental health conditions using TikTok. Apparently, HCPs are seeing more people claiming to have undiagnosed mental health conditions based on videos they’ve seen on the app. 

The question being posed in the discussion was this: Are Dr Google and TikTok helping raise awareness of mental health conditions or misleading millions of viewers?

Oh’, I thought. ‘We’re having this conversation. AGAIN’, as the hosts were engaged in a bit of pearl clutching and assumption-making. I couldn’t help but roll my eyes at the suspicion and cynicism I was hearing. Sure. It might be a different health condition and a different social media platform, but haven’t we been doing this for years? For DECADES?

Yes. Yes, we have. 

The gist of the discussion today was questioning just how safe and sensible it is for people to use TikTok videos as a basis of self-diagnosing ADHD and other mental health conditions. The people in these videos are sharing their experiences and their symptoms, and others are recognising what they see. As a result, increasing numbers of people are heading off to their GP or a psychologist in the belief they have ADHD. Are these videos a good thing? Or is it misleading and dangerous? 

There were stories of lived experience – people sharing how they had seen something on social media and used that as the springboard to find answers to health questions they have. And others explaining how difficult it had been to get help in the first place, often after having been dismissed for years. 

Social media doesn’t exist in a vacuum. Even if someone does self-diagnose – correctly or incorrectly – they still need to see a healthcare professional to find the right treatment and care. That’s certainly the case when it comes to diabetes. So much of what I have learnt about different treatments or devices has come directly from the community, but in almost all cases, I then need to see a HCP to actually access that new therapy. I can’t write myself a prescription if I want to try a new insulin. In most cases, new tech also needs a HCP sign off, especially if you want to access subsidy programs. 

I’ve come to learn that a good healthcare professional is one who considers Dr Google a colleague rather than a threat. Those who grimace and dismiss someone who walks into their office with the announcement ‘I’ve been googling’ is really just admitting that they believe they are still the oracle of all information; information to be disseminated when they decide it’s time and in the way they believe is right for the individual. 

We have moved on from that. 

And surely we have moved on from the idea that social media is evil and highly distrustful. I’ve been writing and speaking about this for over ten years. In fact, in 2013, I wrote this in a post‘The diabetes social media world does not need to be scary and regarded with suspicion. The role of HCPs is not under threat because PWD are using social media – that’s not what it’s for. It is just the 2.0 version of peer support.’

I so wished that the discussion I listened to this morning had started with a different framing. Instead of highlighting how social media in healthcare could be problematic, they could have emphasised just how empowering and positive it can be for people to recognise themselves on social media. How seeing those stories and hearing those experiences normalise what we see in ourselves, and how they can help us find the right words for what it is that we have been thinking and direction for what to do next. 

It’s not social media and online health discussions that are going to make HCPs redundant. Rather, it’s their refusal to understand just how important and useful these sorts of communications and communities can be. In a post in2016 I referred to it all as a ‘modern day kitchen table’. Sure that kitchen table now looks like a TikTok video, a Twitter discussion or an Instagram reel. But learning from others living similar lives isn’t new. And neither is searching for answers using something like Dr Google. It’s sustaining. And for so many, essential.

Diabetes and menopause – there are two things that have an image problem! Diabetes’ image problem has been discussed a bazillion times on here and is well documented by others. 

And menopause? Menopause is middle-aged women; women who are past their prime and ready to settle down with a pair of slippers and a good book. Women who are a hot mess rather than just hot. Angry old women who are, at best, easily ignored, at worst, are given labels such as the incredibly sexist and derogatory ‘Karen’ thrown at us, especially if we dare demand attention for issues that are important to us. Oh, and we are invisible, apparently.  

Well, fuck that. I am none of those things. I am as loud and out there and determined as I have always been. Sure, I like the idea of settling in for the night with a good book and a cup of tea, but I’ve been like that since I was in my twenties. And the anger isn’t new. Being radicalised as a kid does that to you, and I fairly, squarely, and gratefully credit my mother for it. 

Turns out that my attention now is being turned to an issue that is one of too little research, too little attention, and too little available information that is relevant, evidence-based and engaging. And that is diabetes and menopause, and perimenopause. 

Yes, I’ve written before about before. Missed it? Well, here you go: This time; this time and this time.

If you jump on Twitter now and search the words ‘diabetes’ and ‘menopause’ you’ll find a number of discussions which have been started by people with diabetes who are desperately looking for information to do with the intersection of these two topics. As well as information, people are asking to be pointed to examples of others who have been through it and are willing to share their stories. At the recent #docday° event, the inimitable Dawn Adams from IRDOC gave a rousing talk about why we need to focus more on this issue. (Follow Dawn on Twitter here.)

Here’s the thing: I still get diabetes and pregnancy reminders from my HCPs despite being 48 years old and very clear that having a baby right now (or ever again) is not on my to-do list. Been there, done that, bought the t-shirt and have an almost fully formed adult to show for it!

And yet despite that, I still get reminders about how important it is to plan for a pregnancy, take birth control to prevent it, and make sure that I take folate. Cool. That’s really important information. For women planning to get pregnant (and the birth control bit is important for women looking to avoid it).

But more relevant; more targeted; more person-centred for me is information about perimenopause and menopause. 

Just over twenty years ago, when I was looking for information about diabetes and pregnancy, there wasn’t a heap of it. There was, however, a lot of research about it. What we really needed were resources for people with diabetes who wanted information that didn’t look as though it had been written and illustrated in the 1980s. We wanted the evidence-based materials that didn’t scare us. And so, working with other women with diabetes who were the same age as me, and looking for the same sort of information, we made it happen. The diary I published online when I was pregnant added to other stories that were already there. It was hugely reassuring to know that I could find others who were sharing stories that either mirrored my own or suggested the path that mine might follow. 

These days, it’s super easy to find stories about pregnancy and diabetes. You don’t need to search too hard to find and follow diabetes pregnancies on Instagram, from pregnancy announcements through to delivery announcements and every twinge, craving and diabetes concern in between.

Less so menopause. Look, I get it. What’s the cute, good news story here? With pregnancy stories, there is a baby at the end – a gorgeous, cooing baby! There is nothing like that with menopause. Despite that, I think there are stories to tell and share. And a community to provide support and lived experience advice. 

Right now, there is a chorus of people in the diabetes community who are calling out for this information and talking about the topic. I’m willing to bet that a lot of us were the ones who, twenty years ago, were calling out for decent diabetes and pregnancy info. 

I’m not a clinician and I’m not a researcher. I don’t write grants for studies about menopause and diabetes that suddenly put this topic on the research agenda and start to help grow an evidence base. But what I can do is generate discussion and create a space for people to share their stories, or ask for information in the hope that others will answer the call.

The ‘The Diabetes Menopause Project’ isn’t really a thing. It’s a community cry to generate that discussion and some lived experience content. There are some great pieces already out there and I can’t tell you how many times I’ve pointed people to those blog posts and articles. But there needs to be more, and they need to be easier to find. 

And so, to start with, here is what I do know is out there. If I’ve missed something, please let me know and I’ll add to it. At least then there is an easy one stop place to find the limited information that is out there. Get in touch if you have something to share. 

The Big M – More Taboo Subjects, from Anne Cooper. 

Type 1 and the Big-M – a five-part series from Sarah Gatward about her personal experiences of type 1 diabetes and menopause from Sarah Gatward

Managing Menopause and Type 1 Diabetes – also from Sarah Garward, published by JDRF-UK

Menopause + Type 1 Diabetes – Ginger Viera’s writing for Beyond T1

I hosted a Facebook live with endocrinologist, Dr Sarah Price where, amongst other issues, we discussed diabetes and menopause

Research!! This journal article looks at the age menopause occurs in people with type 1 diabetes 

I frequently say that these days, I do hardly anything when it comes to diabetes. I credit the technology behind LOOP for making the last four-and-a-half years of diabetes a lot less labour intensive and emotionally draining than the nineteen-and-a-half years that came before. 

It’s true. Justin Walker’s assessment that his DIYAPS has given him back an hour a day rings true. (He said that in a presentation at Diabetes Mine’s DData back in 2018.)

The risk that comes with speaking about the benefits of amazing newer tech or drugs is that we, unintentionally, start to minimise what we still must do. I think in our eagerness to talk about how much better things are – and they often are markedly better – we lose the thread of the work we still put in. But our personal stories are just that, and we should speak about our experiences and the direct effect tech has in a way that feels authentic and true to us.

And that’s why accuracy in reporting beyond those personal accounts is important. Critical even. 

Yesterday, the inimitable Jacq Allen (if you are not following her on Twitter, please start now), tweeted a fabulous thread about the importance of getting terminology right when reporting diabetes tech. 

She was referring to a tweet sharing a BBC news article which repeatedly labelled a hybrid-closed loop system as an ‘artificial pancreas’. Jacq eloquently pointed out that the label was incorrect, and that even with this technology, the wearer still is required to put in a significant amount of work. She said: ‘…Calling it an ‘artificial pancreas’ makes it sound like a cure, like a plug and play, it makes diabetes sound easy, and while this makes diabetes less dangerous for me, adopting a term that makes it sound like it can magically emulate a WHOLE ORGAN is disingenuous and minimises the amount of time and effort it still takes to keep yourself well and safe.’ 

Jacq’s right. And after reading her thread, I started to think about the time and effort I had dedicated to diabetes over the previous week. 

This weekend, I spent time dealing with all the different components of Loop. For some reason my Dexcom was being a shit and all of a sudden decided to throw out the ‘signal loss’ alert. After doing all the trouble shooting things, I ended up deleting the app and reinstalling it, which necessitated having to pair the transmitter with the app. This happened twice. I also decided it would be a good time to recharge my Fenix (Dexcom G5 transmitter) and reset it. 

I ran out of insulin while at a family lunch, necessitating some pretty nifty calculations about how much IOB was floating around, and what that meant in terms of what I could eat from the table laden with an incredible spread of Italian food. 

Saturday night, Aaron surprised me with tickets to the Melbourne Theatre Company and in our usual shambolic fashion, we were running late, which meant a little jog (don’t laugh) from the car park to the theatre. I was in high-heeled boots and a skirt that scraped the ground. The degree of difficulty WITHOUT diabetes was high. As I less-than-daintily plunked myself in my seat, I looked at my CGM trace, trying to decide if the 5.5mmol/l with a straight arrow was perfect or perilous, and did a bit of advanced calculus to work out if the audience would be serenaded by the Dexcom alarm at some point in during the 90-minute performance. I snuck in a couple of fruit pastilles under my mask, and surreptitiously glanced down at my watch every ten minutes or so to see if further action was needed. It was. Because that straight arrow turned into double arrows up towards the end of the play.

I spent two hours out of my day off last week for a HCP appointment, as well as several hours dispersed throughout the week trying to work out if there would be any way at all that I might be able to access a fourth COVID boosted prior to flying to Barcelona at the end of the month. 

And that doesn’t include the time spent on daily calibrations required because I’m still using up G5 sensors, the pump lines that need replacing every three days (and checked on other days), reservoirs that need refilling (when I remember…) and batteries that need replacing. Or the time set allocated to daily games of ‘Where is my Orange Link’. And the brain power needed to guess calculate carbs in whatever I am eating. (And you bet there are clever people who no longer need to ‘announce’ carbs on the systems they’re using, but the other tasks still have to happen.) It doesn’t include the time out I had to take for a couple of so-called mild hypos that still necessitated time and effort to manage. 

Short of a cure, the holy grail for me in diabetes is each and every incremental step we take that means diabetes intrudes less in my life. I will acknowledge with gratitude and amazement and relief at how much less disturbance and interruption there is today, thanks to LOOP, but it would be misleading for me to say that diabetes doesn’t still interfere and take time. 

Plus, I’ve not even started to mention the emotional labour involved in living with diabetes. It is constant, it is more intense some days. There are moments of deep and dark despair that terrify me. It is exhausting, and no amount of tech has eliminated it for me. 

The risk we face when there is exaggeration about the functionality and cleverness of diabetes tech is that those not directly affected by diabetes start to think that it’s easy. In the same way that insulin is not a cure, diabetes tech is not a panacea. Setting aside the critical issue about access, availability, and affordability, even those of us who are privileged to be able to use what we need, still probably find a significant burden placed on us by diabetes. 

This isn’t new. Back in 2015 when Australia was the launch market for Medtronic’s 640G, it was touted as an artificial pancreas, and I wrote about how troubling it was. I stand by what I wrote then:

‘Whilst this technology is a step in the right direction, it is not an artificial pancreas. It is not the holy grail.

Diabetes still needs attention, still needs research, still needs funding, still needs donations. We are not there yet, and any report that even suggests that is, I believe, detrimental to continued efforts looking to further improve diabetes management.

All of us who are communicating in any way about diabetes have a responsibility to be truthful, honest and, as much as possible, devoid of sensationalism.’

It’s why I frequently plead that anyone who refers to CGM or Flash GM as ‘non-invasive’ stops and stops now. There is nothing non-invasive about a sensor being permanently under my skin and being placed there by a large introducer needle. Tech advances may mean we don’t see those needles anymore, and we may even feel them less, but they are still there!

We still need further advancements. We still need research dollars. We still need politicians to fight for policy reform to ensure access is easy and fast and broad. We still need healthcare professionals to understand the failings of technology, so they don’t think that we are failing when we don’t reach arbitrary targets.

We still need the public to understand how serious diabetes is and that even with the cool tech, we need warm hands to help us through. We still need the media to report accurately. And we still need whoever is writing media releases to be honest in their assessments of just what it is they are writing about.  

Keep it real. That’s all I am asking. Because overstating diabetes technology understates the efforts of people with diabetes. And that is never, ever a good thing. 

Amazing. But not an artificial pancreas.

Someone asked me the best question the other day and it was this:

‘What is a really important characteristic or personality trait to have if you live diabetes?’

I thought about it for a while. The first thing that came to mind was resilience. The never-ending nature of diabetes means that staying power, strength, plenty of flexibility and being able to push on and through is needed to deal with just the day to day. 

And so, resilience was the answer I gave. 

But I haven’t been able to stop thinking about that question, and I think that I have a better answer. 

Curiosity. 

Being curious is not only important, but it leads to some of the best outcomes and opens doors to aspects of diabetes that I may have otherwise missed. 

It has served me well. Being curious about how others with diabetes were interacting and the opportunities they were creating to build communities is the reason that I delved into the world of online diabetes peer support. I asked a lot of questions to learn about collaborations between industry and advocates to see how our expertise was bring recognised and utilised. From there, I was able to develop those same sorts of activities locally that also had a global bent.

As an advocate, being curious about the experiences and knowledge of others with diabetes living in different places around the world has meant that I have a far broader understanding of the challenges, the successes, the things that work well and the things that don’t, and the health systems of people in the global diabetes community. It has meant that I look far beyond my own perspective, instead learning and asking about others. It is one of the reasons that I am so often invited to participate in advisory groups or facilitate discussions and other initiatives. Those doing the inviting are aware that my knowledge and understanding will never just be that of what’s going on in the Australian sector – I will be able to point them to people in the global community who can provide wider and more diverse experiences. 

I have frequently referred to diabetes as a petulant toddler, but I think that acting like one, with regular sprinklings of ‘But why?’ is often a perfect response when a diabetes therapy is offered. 

Asking ‘But why?’ has meant that I’ve never accepted the status quo or simply done what I’ve been told. I know it has driven HCPs to distraction in the past, but it has helped tailor care to what I need and centres me and my diabetes in conversations. 

Even before that, being curious about how a HCP operates, the way they engage and their interpretation of person-centred has resulted in me connecting with the absolute perfect HCPs for me…and leaving the ones that were not.

Being curious about different technologies was the starting point for me to investigate further and learn from others and ask questions to work out just how those technologies might work for me. I’m not just talking Loop. It was that curiosity that had me seeking out the few people using pumps in Australia back in 2000 to find out just what it meant to wear one. The questions I had couldn’t be answered simply by reading what the pump companies had to offer. I was curious about the realities of pump therapy.

I’ve also come to appreciate curiosity as a trait in others. My own endocrinologist is curious in her approach and the way that she conducts our consultations. Her ‘How are you?’ at the beginning of consultations isn’t a perfunctory question. She uses that as a launching pad to get a good idea of just where I am at, and then listens as I guide the discussion. When I spoke with her about Loop, for example, she wanted to learn more – not dismiss it as a dangerous endeavour. I have appreciated that desire to understand more and her own curiosity because I know it means that 

And the most wonderful GP I ever saw (damn him for moving to bloody Darwin!) had never seen an insulin pump the first time I walked into his office. He asked me about it, but better yet, the next time I saw him, he had read up and had more questions. His curiosity helped expand his own comprehension of diabetes, and I was so grateful that he thought like that. 

Being curious means that there are always more questions to ask, different options to investigate and keeps my desire to learn active. It’s meant that I’ve never settled, always intent on finding out more or difference options. I am curious and I search for curiosity in others because there is still so much about diabetes that I need to understand. Undoubtedly, the best way to do that is when my mind is open and I am curious, and I am around people who have that same open-minded approach.

Click on the tweet to read how others answer the same question. I tweeted it this morning and there have already been dozens of great replies.

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