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.

C/W This post contains content about diabetes and suicide and intended self-injury. 

If you need help, this Wikipedia page has a list of mental health crisis lines around the world.  And for a list of contacts actively updated and maintained by the Wikimedia Foundation, go here. 

We talk a lot about taboo topics in diabetes.  For years, there have been concerted efforts to shine a light on many of the issues and topics that have not received enough attention but are very important to people with diabetes. Often it is people in the diabetes community who find ways to delicately begin conversations, and that is then followed by an interest from researchers and clinicians.

But there are still some topics that are often seen as just too difficult, just too fraught, just too scary. 

Suicide and intended self-injury (ISI) fall into that group. 

At EASD this year, I was invited to join a meeting for the RESCUE Collaborative Community, a project that is lifting the veil on one of the most difficult issues in diabetes mental health. The name of this project is a clue to what it is trying to achieve: RESCUE (REducing SuiCide rates amongst individUals with diabetes).

The mission of this project is:

To reduce rates of intended self-injury (ISI) and suicidal acts by people with diabetes through improved understanding of the risk factors and implementing strategies to address them.  In support of this mission, RESCUE works with stakeholders across the health spectrum including patients and care partners, academia, healthcare professionals, advocacy groups, industry, payers, federal and state agencies and regulatory bodies.

This is a big issue and a difficult one. There is a lot to think about, a lot of unknowns and a lot of questions to be asked. To work out how to help people with diabetes who are at risk, there needs to be a better informed workforce, with evidence to develop strategies that are going to help. And we also need to know how to approach the very basics when talking about suicide and ISI in relation to diabetes. 

When it comes to diabetes and mental health something comes up frequently: there is limited dialogue and understanding between diabetes HCPs and mental health HCPs. I remember hearing Georgie Peters speak at the IDF World Diabetes Congress in 2017 about living with diabulimia. She said that she would be told to ‘go home and take your insulin’ – a completely inadequate approach. In her talk, Georgie said that is the same as telling someone with anorexia to ‘go home and eat’. But when trying to navigate care from two highly specialised health areas, that sort of response is rife. 

And so, how to we make sure that when looking at diabetes and suicide and ISI, we are mindful of the specific diabetes issues that need to be considered? 

At the meeting last week, we spoke about trying to identify people with diabetes who may need attention. Contemplating how insulin may be used as a way to self-harm is one consideration, so people being admitted to hospital with frequent DKA, and people admitted for a serious hypo could be a starting point to investigate. Of course, not everyone who has DKA or a serious hypo is self-harming. Diabetes gonna diabetes and sometimes, things just happen. But it certainly does seem a good place to begin, with targeted approaches to ask questions in an appropriate way that might help identify people who need mental health support, in particular about ISI and suicide, with an aim of reducing risks. 

One of the other discussion points was asking about the role of peer support and the community when talking about suicide and diabetes? Is peer mentorship an idea? How can peers support each other? In the way that #TalkAboutComplications kickstarted meaningful community discussions about the taboo topic of diabetes-related complications and helped people with diabetes feel safe to first open up and speak about their own experiences of living with diabetes-related complications, could there be a way to signpost discussions about serious mental health conditions. And would this break down stigmas, help people realise they are not alone, and seek help, or at least ask where to seek help? Or, is this a burden too big for peer support?

There’s a lot to unpack here, and there really are no simple answers. But this work spearheaded by Professor Kath Barnard-Kelly with a team of dynamic health professionals, with input from diabetes advocates is lifting a veil to start to look for those answers. 

For more information about the RESCUE Collaborative Community, click on the image above.

MORE

#dedoc° voice, the brilliant Niki (@WhatNikiDidNext) live tweeted a symposium on suicide and ISI at EASD, and you can see her tweets here. Presenters at this session were Kath Barnard-Kelly, Marissa Town, Tadej Battelino and Simon O’Neil.

Disclosure

My travel and accommodation were covered by #dedoc°, where I am employed as Head of Advocacy. Thanks to EASD for the press pass.

I was invited to attend the RESCUE Collaborative Community meeting. I was not paid for my time to attend.

The last time I was in Stockholm was seven years ago for the 2015 EASD Conference. This year, as I walked to the conference centre from the train, everything about the venue flooded back. ‘Here we go again,’ I thought. Except this time was different.

I wrote this about #EASD2015:

‘There is much mention of the ‘patient perspective’ and on Monday there was an entire symposium dedicated to it. Unfortunately, there wasn’t an actual ‘patient’ on the panel, which surely is weird...But despite the limited presence of PWD in the official programme, there are a lot of satellite events and activities taking place.’

One of those satellite activities was the first ever #docday°. It was in a musty, overheated, overcrowded back room of a co-working cafe, and it brought together a rabble of diabetes advocates from around the world who had somehow made their way to EASD. I think most of us were there with Roche or Johnson and Johnson for one of their blogger events.

But #docday° was different. This one was completely about and by people with diabetes, showcasing community and peer support. People shared their advocacy efforts and what they were doing in their own networks to support people with diabetes, and shared ideas about how others could do the same. Despite being all about diabetes, we were not welcome as a group at the biggest diabetes conference in Europe.

Fast forward seven years to this week, and the same spirit from the first #docday° event was visible. But this time, it was on stage as part of the scientific program at the conference. The #dedoc° Symposium was on the first day of EASD and it set a tone of inclusion and collaboration, making a very clear point that people with diabetes have a rightful place here, at professional conferences.

Adding to the #dedoc° symposium were the #dedoc° voices – diabetes advocates from across the world – participating fully in the conference. This is the largest scholarship program in the world for diabetes advocates and they made sure they were seen and heard! Everywhere! You only needed to walk the corridors of the conference to see the voices collaborating, not only with each other, but with health professionals, researchers and industry. Social media coverage of the EASD is dominated by the constant stream of ‘reporting back’. And almost evert single health professional I spoke with at the conference knew about #dedoc° and supported our very clear mission of #NothingAboutUsWithoutUs. How amazing is that?!

#dedoc° is all about inclusion. That’s why we can, hand on heart, say that we welcome advocates from around the world to become a #dedoc° voice. But it’s more than that. Our events are open to everyone, including our symposia at diabetes conferences. At EASD, our session was the only one that was live streamed to everyone and anyone via our socials channels. No one needed a costly registration to get inside the Stockholsmassan or another way in. Everyone could see Andrea Limbourg speak about some incredible work from advocates in Indonesia, France and Ireland, and Jeff Hitchcock explain how Children with Diabetes managed to keep supporting families of kids with diabetes throughout COVID, and Tom Dean share details of the brilliant #DiabetesChat and how he has embraced the idea of providing a truly welcoming platform for diabetes friends from around the world to gather on Twitter Spaces for a weekly chat. And Bastian Hauck tell the story of that overheated room for the first #docday° and how what happened on that afternoon planted a seed for a global movement of people with diabetes. #dedoc° provides a platform to elevate others. It’s a privilege to be part of it. 

If you missed the #dedoc° symposium at EASD, here it is!

Disclosure

My travel and accommodation were covered by #dedoc°, where I am employed as Head of Advocacy. Thanks to EASD for the press pass.

Recently, I shared some good news that I was finally ready to release into the wild after sitting on for a few weeks. 

Me giving Manny Hernandez a hug. We are standing on a stage with a purple background which is a giant screen. The words 'The importance of community for people with diabetes' (and Manny's name and Twitter handle @AskManny) is written in black above us. The logo for the 2019 IDF Congress is also on the screen.
Manny Hernandez gave an incredible Award Lecture at the 2019 IDF Congress.

And so, a tweet and a LinkedIn post later, I’d happily shared that I’ve been invited to give the Award Lecture in the Living with Diabetes Stream at the IDF World Congress in Lisbon later this year. When I talk about standing on the shoulders of diabetes advocacy giants, two of the previous Awardees define community and advocacy. I still can’t believe that anyone would consider me to follow on from Riva Greenberg or Manny Hernandez, who gave the lecture in 2015 and 2019 respectively. 

I was overwhelmed by the messages of support and congratulations from friends and colleagues, many from the global diabetes community, a couple from my own workplace – by and large people who know diabetes. But also, from those without diabetes too who acknowledged how honoured I would be feeling to be recognised in this way. 

But there was one comment that stood out and that was from one of the most dynamic, influential, and impactful diabetes advocates I know, Dr Sana Ajmal.

Sana’s message was this: Thanks for being unapologetically yourself! That’s what truly defines your activism. Looking forward to it!

I stopped when I saw it and read it a few times over. 

I often describe my style of advocacy as bolshy. Others have said I take no prisoners in my resoluteness. A former manager once said (I think affectionally) that I step off my soapbox only to climb onto my high horse. And I also accept that being unapologetically myself – and unapologetic in my approach – doesn’t always sit well. But Sara used the word so generously, which is probably not how everyone would see it…

I have been unapologetic in my attitude and determination. I’ve been unapologetic in the sheer doggedness I’ve employed over the last 21. I’ve been unapologetic for challenging the status quo and demanding that things change. I’ve been unapologetic in the issues that I have claimed are important to me. I’ve been unapologetic at sounding like a broken record and appearing a one trick pony when I’ve repeated over and over and over again that language matters, that peer support works, that people with diabetes have a right to be in the room and centred anytime diabetes is a topic of discussion. I’ve been unapologetic in the way I’ve challenged people – from HCPs, policy makers, diabetes organisations, industry – asking them to all do better for and by people with diabetes. I’ve been unapologetic in my fury against misogyny and the patriarchy in healthcare. 

I’ve been thinking a lot about what I plan to say when I give the Award Lecture at the World Diabetes Congress. I have decided on the theme of the talk, and it will come as no surprise to anyone that I’ll touching on successes and challenges of advocacy. When I get to thinking about what a massive enabler of my work in this space has been, there is something I keep coming back to and that is the remarkable leadership of remarkable people I’ve been fortunate enough to encounter. I’ve learnt so much from the advocates who came before me. The barriers they broke down to do what many of us now do, and the grace, confidence and, often, brazenness they needed to push through is nothing short of inspiring.

And it’s been the extraordinary curiosity and bravery displayed by those without diabetes. I will forever be grateful for the way those people never asked me to apologise, never tried to stifle my voice, never tried to centre themselves over the community and always – always – included lived experience and were led by our needs, willing to be uncomfortable when they were challenged. They are the leaders who understood our expertise and made sure it was included when diabetes was on the agenda. And understood how they could learn from it. They define the idea of diabetes allies!

I’m thrilled that I’ll have a chance to stand up at an international conference and talk about why #NothingAboutUsWithoutUs is the foundation of my advocacy and activism and how, most unapologetically, I’ll never change that.  

Two drawings. On the left is a horse with one legs and a ladder leaning against it. On the right is a stick figure of a person and the word 'me'. The figure is standing on a square that has the word 'soap' written on it. It's. meant to be a soapbox.

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.

___________________________________________

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. 

Sometime last year, I presented a webinar about how to be a good diabetes ally. The webinar was for a startup that would be working closely with people with diabetes. Earlier this week, someone who attended the webinar sent me this neat graphic which captured the main points of my presentation. I know that there are lots of other things that could be added, (and during my talk I covered more than what made this list), but I think that this is, perhaps, a good starting point. I’m especially pleased my point about avoiding hypo simulators made the cut!!

When I think of the diabetes allies I’ve worked with over the last 21 years in the diabetes world, I realise that their main strength is that they made point number one the foundation of their work. I find myself being drawn to the activities of those who centre people with diabetes in meaningful, not token, ways. They are the people who happily step into the shadows so that people with diabetes can be in the spotlight.

A real diabetes ally works with us. They stand with us, not speak for us, because when anyone claims to ‘be the voice of diabetes’ they are simply silencing people with diabetes. We have voices, we have words – our own words – we don’t need others to speak for us. Hand us the microphone.

Being an ally is easy. It really is.

List in black writing on a pink background that says:
HOW TO BE A DIABETES ALLY
a non-exhaustive guide for people working in the diabetes world 
1. Centre people with diabetes 
2. Hand people with diabetes the microphone; 
3. Understand that being adjacent to diabetes isn't the same as living with it
4. If diabetes is the topic, make sure there are people in the room influencing outcomes 
5. You're not being person-centric if people with diabetes are not front & centre 
6. Don't cosplay diabetes 
(AKA: no hypo simulators!)
7. Believe people with diabetes when we say you are not acting in our best interests 
8. Don't excuse diabetes stigma when you see or hear it, and always call it out 
9. Share the words & work of people with diabetes, acknowledging our contributions
10. Recgonise the emotional labour that goes into sharing our lived experience 
11. Don't make us feel like a burden when acknowledging people who support us 
12. If people with diabetes aren't in the room, ask why not
Diabetogenic.blog

More? I’ve written before about how healthcare professionals can be allies to people with diabetes when they see and hear stigmatising comments from their colleagues. A lot of what was in that post is relevant here too.

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

.

.

.

.

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. 

One of my favourite memes on social media is the response to people who tell the world they’re taking a break from or leaving social media groups or platforms: ‘This is not an airport. There is no need to announce departures.’ (Aussie airports at the moment are full of cancelled flights, so departure announcements seem to be few and far between, but I digress.)

And so, I didn’t announce that I was taking a little break from the online world. It wasn’t really planned. But it has coincided with a couple of weeks break from work and it’s been nice to step away a little and just be. Plus, it’s given me a lot of time to write and write and write and smash deadlines for some of the freelance work I never seem to have enough time to get done. (My submission emails inevitably start with ‘I’m so sorry for the delay in getting this to you…’) But here on Diabetogenic, I’m the editor, so delays are only holding me up and it would be weird to apologise to myself for repeatedly missing deadlines, especially when I don’t even have deadlines (mostly because I don’t set them because I know I’d never meet them) and there I go digressing again and is it any wonder I get nothing done?!

Having said that, I’ve received dozens of emails from people asking when to expect a new post, so to everyone who has messaged or wondered: ‘I’m so sorry for the delay in getting this to you…’.

But here I am back again, with a heap of great things I’ve seen recently and I want to share them here in a bit of an interweb jumble!

I’m writing

Yes, I know it’s weird to share my own writing on my own blog, but whatever! Plus,, there is nothing wrong with a bit of self-promotion. I’m back writing for diaTribe and absolutely delighted to have had these two pieces published recently.

This one is about how it’s important to tell stories of people with diabetes who choose to not run marathons or climb mountains in amongst stories of those who do. 

And this one is about a new type 1 diabetes screening program for Australian children. I write about the reservations I had about having my daughter screened when she was little, but how things might be very different with research like this. The response to this article has been lovely and a lot of parents with diabetes have reached out to say that they have had similar concerns and feelings to those I articulate in the post. 

Advocacy through art

I’m a huge fan of Jenna Cantamessa’s artwork, and this beautiful image and accompanying post is one of the reasons why! Click on the artwork to be taken to the TypeOneVibes Instagram account to read Jenna’s words.

Stripped Supply

I’m always happy to promote smart women doing smart things and so let me introduce you to Ashley from Stripped Safely. Here we are at the recent Australian Diabetes Congress.

When Ashley’s boyfriend was diagnosed with type 1 diabetes, she realised there was a gap in the market when it comes to mail ordering NDSS supplies. Remember the old days when we used to be able to easily place an order online and have our pump lines or BGL strips delivered straight to our front door? Well, Ashley is making that happen again. It’s a subscription service and is super easy to use. Details about how to use Stripped Supply here.

Gong

You bet I’m proud to share this! Diabetes Australia’s Heads Up on Diabetes campaign recently received an award from the Australian Patients Association. The campaign was recognised as the Best Patients’ Campaign and how wonderful that shining a spotlight on diabetes and mental in such a powerful way has been awarded. 

I’ll just say that while it is truly amazing to be acknowledged in this way, the real measure for me of the success of a campaign is how the diabetes community responds and it was clear from year one of this three-year campaign that people with diabetes from across the world absolutely loved it, as evidenced by the number of times the campaign videos were shared online. Oh, and there’s something quite incredible about sitting in a conference room and seeing our work played back to us by someone from outside the organisation. Yeah – that’s happened a number of times! 

The Human Trial

So much buzz in the diabetes world at the moment about the incredible documentary out of the US, The Human Trial. Until 9 September, you can stream the film for free by going to this link. You will be prompted to make a donation if you can. All funds raised go to diabetes research.

More about this documentary soon.

Advocacy through poetry 1

At the recent Australian Diabetes Congress, I had the honour and pleasure of chairing a session with an brilliant array of diabetes advocates from Australia and across the world. One of the speakers was Ash Byrne who began her presentation with an incredibly powerful poem and then went on to speak about the mental health burdens of diabetes. You can see Ash readying her poem, Invisible, at this Facebook link.

Advocacy through poetry 2

Aussie diabetes advocate and #dedoc° voice, Leon Tribe shared this poem on Twitter earlier this week which beautifully explains the power of language and communication between people with diabetes and our healthcare professionals. (You may need to click on the image to read the poem more easily.)

Stigma – diabetes and beyond

I have a new thing, and I didn’t want to talk about it. In part, because of stigma. Mostly, because of stigma.’ 

This is the start of a powerful post from Dana Lewis where she shares how the stigma that comes with diabetes has influenced how she feels about being diagnosed with another autoimmune disease. Read it here.

TEDx does diabetes advocacy

I’ve been a long-time fan of Grainne Flynn’s advocacy work and have shared her posts here before. Recently, she did a TED Talk about grassroots advocacy. It is all shades of brilliant and an absolute joy to watch. So… watch!

#dedoc° is busy! 

There is a lot going on in the world of #dedoc°! Here’s just a taste of upcoming events that everyone can get involved in. Plus, the #dedoc° voices program will be kicking off again later this month at EASD with a cohort of new voices and alumni on the ground in Stockholm as well as following along virtually. 

I’m so excited to be part of the #dedoc° symposium at EASD! Delivering a community led and focused symposium as part of the scientific program at a professional is a Big.Deal. We’re continuing to live and breathe #NothingAboutUsWithoutUs in the most impressive ways!

Disclosures

As always, I am thrilled to share things that I’ve found interesting, but disclosures are important. I’ve not been asked to share anything you see here, but figure if I find something interesting (or feel like doing same shameless self-promotion) you might too. I also figure that being transparent is important as is reminding you to consider my bias when sharing things.

  1. I am a paid contributor to diaTribe
  2. I am the Head of Communities & International Affairs at Diabetes Australia
  3. I am the Global Head of Advocacy at #dedoc°
Follow Diabetogenic on WordPress.com

Enter your email address to follow this blog and receive notifications of new posts by email.

Read about Renza

This website is certified by Health On the Net Foundation. Click to verify. This site complies with the HONcode standard for trustworthy health information:
verify here.

Archives

Twitter

%d bloggers like this: