Diabetogenic

Showing up for kindness

June 3, 2019 in Diabetes, Eyes, Healthcare team, Real life | 3 comments

I had my annual eye screening today. If you want to get an idea of how I was feeling in the lead up, you can read this, or this, or this. Because it’s always the same.

The orthoptist called me from the waiting room, and as I followed her in, she said ‘We’ve been seeing you for eighteen years now.’

‘That’s right,’I said. ‘Obviously, we were both twelve years old when I first started coming here.’

She laughed and agreed with that assessment.

‘You know there’s a reason for that, right?’I asked her. ‘You and Prof Ophthalmologist know how I feel about my eye screening. And you have always been so kind and lovely about it. I have never been made to feel foolish. If I have been late with a screening check – as I often was back in those early years – I never felt shamed or told off. You have always been kind to me. Kindness in care is so underestimated.’

We chatted some more about that and then she did the usual checks and delivered the news as she always does. Diabetes-wise everything was exactly as it was last time I was there, and I let out half a sigh of relief. I still had to see the ophthalmologist, so the other half would have to wait a little more.

Finished with me, she escorted me to the second waiting room where I kept myself occupied trying to read things as my vision blurred more and more, and convincing myself that I was not having some sort of heart event, despite my racing heartbeat.

The rest of my visit was as unadventurous as the beginning of it. My ophthalmologist was his usual self – he made some cheeky comments about my aversion to seeing him, asked me how I was, commended me on living with diabetes for 21 years, and then looked at my eyes. After announcing them to be ‘pristine’ (I asked if that as a technical term and he said in this instance, yes), we spoke a bit about how flying seemed to flare up the blepharitis I had been recently diagnosed with. (That’s all for another blog post, but basically, it’s inflammation of the eye lids.) I noted down how to best manage those flares and what I needed to watch for in the future. My heartrate had returned to normal and I was breathing easily again.

As I put on my coat, I mentioned the eighteen years I’ve been attending his clinic. ‘I really don’t like the fact that I have to come and see you. I don’t look forward to it – in fact I pretty much dread it,’ I said. I watched him smile and shake his head slightly. He is more than used to my melodramatic tendencies.

‘But I am eternally grateful for how generous you and your staff have always been. I love that I have never felt anything other than safe here, and that says a lot when the thought of someone so much as looking at my eye makes me want to cry. The fact that you touch my eyeball to check the pressure of my eye – or whatever you do – is just beyond terrifying. But I would never think to miss an eye screening now – never. I know when it is due, and I am completely dialled in to it all. A lot of that has to do with knowing how this whole experience will play out.’

I picked up my bag and he handed me some samples to help my eyes when I am stuck on aeroplanes for days on end. ‘I’ll see you in a year, He said.‘But earlier, of course, if you have any concerns or notice any changes. You are really doing an incredible job living with diabetes, Renza.’

I thanked him and before I walked out the door said, ‘I don’t really have a choice. I live with diabetes. I don’t really have any other choice than to make the best of it. But having kind healthcare professionals like you around makes it infinitely easier. I really hope you know that you make it easy for me to show up.’

Instagram stories keeping me occupied in the second waiting room.

Revisited: Wearing an insulin pump does not make you a person with diabetes

May 29, 2019 in Awareness, Diabetes, Healthcare team | 3 comments

I was reminded of this post from a couple of years ago when I was recently speaking about hypo simulators. I understand that there is some merit in trying to help people not living with diabetes understand some of the day to day issues and challenges we face. The idea is that this can create empathy, and a greater insight into how we feel about living with diabetes.

I also am very critical of these ideas when they are given more weight than they should. When we simulate something to do with diabetes, the focus is in the physical and practical. Wearing a pump (as described in this piece) or CGM will provide experience of feeling the device on one’s body, and learning how to drive it. It gives little more.

When I first published this piece, a GP friend who lives with type 1, said that he likened this experiment to him shoving a pillow up his jumper and walking around for a few days and then claiming to know what it is like to be a pregnant woman. Another friend said that sitting in a wheelchair for a few days may give her an idea about how hard it can be to manouever a wheelchair around, she would have no understanding of what her friend who lives with quadriplegia deal with day in, day out, our how she truly feels.

I am interested to know how others feel. I did receive some criticism when I first wrote this. When I shared in on Facebook, a friend said that I should at least credit the doctor for trying. Perhaps I was too critical – it wouldn’t have been the first time.

When we reduce diabetes to being about nothing more than the daily tasks and devices, we seriously undermine the effort it takes to live with diabetes each and every day.

I would love to know what others think….

I was recently sent an article from Medscape that was written by Svetlana Katsnelson MD, endocrinology fellow at Stony Brook University Medical Center in New York.

The gist of the piece is that for a week as part of her endocrine fellowship training, Dr Katsnelson wore an insulin pump and checked her BGLs, and now believes she knows about living with diabetes. She also considers herself non-compliant because she didn’t bolus for an apple.

This may be oversimplifying the article a little and I honestly do believe that the intention here is good. But a little perspective is needed, I think. It was this comment that really upset me:

‘The experience provided me with a better understanding of how to use the devices that many of our patients use every day, but it gave me much more than that. I truly began to understand how difficult it is to live with diabetes.’

No, Dr Katsnelson, no. You do not truly understand how difficult it is to live with diabetes.

What you have is an idea of what it is like to walk around with a device delivering non-life saving saline into your system. You also have an idea of how it sometimes hurts when a sharp object pierces the skin on your finger. You probably could have deduced that anyway because, you know, sharp object, skin, nerve endings etc. You know how the buttons of these devices feel under your fingers and the weight of the devices in your hands.

You may have an idea of how tricky it can be to accommodate a pager-like device if you are wearing a pretty, flowing dress to work (if that is your want). You may now understand how annoying it is to have to stop what you are doing because it’s time to do a BGL check.

But what you don’t understand is that diabetes is about so very much more than that.

Here is what you don’t have any idea about.

You don’t understand the feeling of ‘this is forever’ or ‘I never get a holiday from this crap’. I know that this was acknowledged in the article, but really, you don’t know how it feels to never be able to escape diabetes.

You have no concept of the boredom of living with a chronic health condition, or the monotony of doing the same tasks each and every day over and over and over again!

You don’t understand the fear that overtakes your whole being as you imagine all the terrible complications that have been threatened and promised as result of diabetes.

You have no notion of the frustration of living with a condition that doesn’t have a rule book – and in fact changes the rules all the time!

You haven’t any perception of the fear I sometimes feel that I’ve passed my faulty genetic matter onto my beautiful daughter; or that I am a burden to my family and friends.

You will never feel the judgement from healthcare professionals because numbers are too high or too low – or that there are not enough of them.

You will never be called non-compliant by a doctor or made to feel guilty because you are eating a cupcake – all because your beta cells decided to go AWOL.

While I really do commend the notion of HCPs trying the ‘day in the life’ (or ‘week in the life’) idea, I think that being realistic about what this experience provides is important. It does not give any insight into the emotional aspects of living with a chronic health condition. It doesn’t explain the dark place we sometimes go when we are feeling particularly vulnerable or ‘over it’.

I have to say that all in all, this article left a sour taste in my mouth and I don’t like to feel that way because it sounds like I am being Grouchy McGrouch. I’m not. And as I said, I think that the intention here is good.

I just don’t want Dr Katsnelson to think that she now knows what is going on in my head when I wake up at 4am and every terrible scenario plays out leaves me feeling a pressure on my chest and a blackness in my mind that threatens to overtake me.

But I also want Dr Katsnelson to know that I really don’t expect healthcare professionals to know and understand all of these things. I expect them to treat me with respect and dignity. If this exercise has helped that, then great, but please, call it for what it is.

The article discussed in this post (Svetlana Katsnelson. Becoming the Patient: Not as Easy as It Looks. Medscape. May 12, 2014.) can be accessed here by first creating a free login.

The DOC in Manila

May 27, 2019 in Advocacy, Awareness, Community, Diabetes, DOC, Engagement, Peer support, Social media, Travel | 1 comment

Last Thursday morning, still wracked (and wrecked) with jet lag from having just returned from ten days in Europe, I boarded a flight to Manila. I would be co-facilitating a workshop for people with diabetes from across the Philippines about how advocacy, community and engagement. If I’m completely honest, I had no idea what was in store for me.

I knew that the PWD who would be attending had all been through a diabetes camps program in the Philippines. They were all young and very eager to step up as advocates. They were the reason the workshop was happening – they realised it was time to elevate the PWD voice in advocacy efforts in their country and they wanted some help in doing just that.

And so, the idea of a workshop was conceived, and the two facilitators were flown in from opposite sides of the planet to pull it all together. Enter me and the Grumpy Pumper (who for once had to travel further than me and was more jet lagged than me).

As the facilitators, we were there to talk about some examples of effective grass roots advocacy, talk about how engagement with other stakeholders is important, and highlight just why the voice of those living with diabetes is critical when it comes to lobbying. We had an vague outline of just how we thought the workshop would run, but we really wanted to ensure that the attendees could shape it the way they wanted, asking relevant questions and walking away with information that would help them.

Once the workshop started, it was very, very quickly apparent that we already had a thriving, dynamic and enthusiastic community in the room. They just weren’t seeing themselves that way. Over the course of the workshop, we saw the ten PWD realise that their own stories and voices are important and have real currency, and they are an unstoppable force when they came together. If ever I needed a reminder of the power of community, I’d have found it there in that room in Manila!

There will be a lot more about the weekend workshop in coming days. I’m still getting my head around it all and am not really sure what to write just yet. It may take me some time. What I do know is that the DOC now has some new voices. Their perspectives will be different to those we often hear about, and that diversity is always good in a community.

So, while I’m getting my words together, get to know these amazing young advocates. They’re on Facebook here; Twitter here; and Instagram here.

DISCLOSURES

Novo Nordisk covered costs for the advocacy workshop. Grumps and I were invited to facilitate the workshop as part of our involvement in the Novo Nordisk DEEP Program. Novo covered by flights, accommodation and ground transfers.

The spectrum of DIY diabetes

May 21, 2019 in Uncategorized | 2 comments

Some people seem to think that if you are interested in DIY Diabetes you must be looping.

This is not the truth. At all. In fact, a lot of people who are really interested in the whole movement have made a very conscious and well-informed decision to not DIY themselves. There are a multitude of reasons for this, but they can all be filed under the banner of ‘My Diabetes; My Rules’.

(Let’s get out of the way the critically important point that for most people, the concept of DIYAPS is not even an option. When struggling to access the most basic of diabetes technology and drugs, the very idea of building a DIY system to automate insulin delivery does not even figure into one’s diabetes management plans. However, I am talking about people who are fortunate to have the choice to loop or not to loop, and choose not to.)

Last week, I was invited by the Danish Diabetes Academy to speak at an event they were running about the Diabetes Do It Yourself movement. I’d been asked to speak about how and why Diabetes Australia had become the first consumer/patient organisation to develop and launch a position statement on DIY technology solutions. More on that another time.

The day opened with a presentation from Bastian Hauck, and he could not have set the scene better. To start with, he challenged everyone’s idea of just what technology is. He showed his brand of tech: a reusable insulin pen, a glucose meter, and an explanation that he usually uses CGM with it. No pump. No automation. No integrated system. No DIYAPS.

Does this make him a luddite or anti-tech? Does this mean that he has no interest in or idea of DIYAPS, or that he is suspicious and opposes it? Of course not. It simply means that at this point in time, he has worked out what works best for him and his diabetes, and that’s what he is using. Sounds pretty sensible to me.

Bastian also drew everyone’s attention to the point I made in the first paragraph of this post: pens (or syringes) and a BGL meter are what the vast, vast majority of people are using to manage their diabetes. The people in the room and those involved in DIY tech are a minority. A very privileged minority. And we must never forget that.

I actually think it’s great when we have people actively involved in the #WeAreNotWaiting world using a variety of management solutions because it means we don’t get caught up only hearing the perspectives and opinions of those who are looping. We can be an evangelical lot, and remembering that there are others doing perfectly well (and are perfectly happy) doing what they have been doing is important.

What we don’t need is people who really don’t understand the systems claiming the reasons they steer clear is because DIY systems are unregulated and therefore unsafe, or other motives that are pretty damn inaccurate. No one needs to justify why they have or have not adopted certain diabetes management options, but it would be good if they didn’t point to reasons that are not especially truthful, perpetuating claims that only serve to scare people. (And anyone who is using this last weekend’s FDA warning about DIY systems to claim that their concerns are warranted should read this post from Katie DiSimone for some context.)

For every Dana Lewis (who gave an overview of her own story, and a typically brilliant explanation of just what OpenAPS is and how it came about) there are others who simply are not interested. And that is perfectly fine!

One thing that both Bastian and Dana reminded everyone is this: ALL diabetes is DIY. It is 24/7 and we do it ourselves for day to day. Call it what you want – DIY or off-label diabetes – it’s just diabetes. And we have no choice other than doing it ourselves.

Bastian and Dana

DISCLOSURE

The Danish Diabetes Academy invited me to speak at the Diabetes – Do It Yourself conference in Copenhagen. They covered by (premium economy) flight home from Copenhagen and three nights’ accommodation and expenses.

That peer support feeling

May 20, 2019 in Conferences, Devices, Diabetes, DIYAPS, DOC, Engagement, Loop, Peer support, Real life, technology, Travel | 1 comment

I’m back on deck at work today after a whirlwind ten days in Europe for meetings and a conference. I started in Amsterdam, then flew to Florence and finally flew to Copenhagen (via Pisa). Those ten days were busy, long and interesting. And, perhaps best of all, packed full of others from the diabetes community.

Spending time with others living with or around diabetes is restorative. I know I get jaded at times, and burnout – in all its forms – takes its toll. I’ve been feeling a little advocacy burnout lately, and that has the tendency to make me feel that I need to step away from diabetes for a bit. Plus, I wasn’t sure if I could be bothered with the inevitable onslaught that comes when these sorts of activities happen.

Instead of hiding away (which is what I half wanted to do), I got on a crowded plane to Europe to spend almost two weeks ‘doing’ diabetes advocacy in different forms. By the time I got to Nijmegen – an hour and a half out of Amsterdam – for HypoRESOLVE I was already feeling better. I felt the darkness of burnout slip away as I sat in meetings, speaking up and providing PWD input into the project. And there, alongside me, were others living with diabetes. We leaned into each other, stepped back so another could take their turn, and supported each other to feel comfortable and relaxed. We reminded each other that there was a reason we were there – because people with diabetes must have a seat at the table and that we must be heard. We lived, breathed and ate ‘Nothing about us without us’ throughout that meeting and by the time I boarded a hideously early flight to Florence for the next meeting, I was raring to go – further boosted by a diabetes in the wild encounter.

Two days of meeting in Florence with friends and peers from the diabetes community talking about our experiences in the diabetes community continued to see my mojo return. We spoke about difficult topics, how the community works best and the place everyone has in there. I was reminded that the community ebbs and flows, and that it is not static. Sometimes, that rut that I find myself in means I forget that all communities change and grow and develop. This is actually a positive, because as it shifts, more people come in, some people step away (for good or just a bit), we reconfigure how it fits us, and diabetes makes sense in new ways.

Some much needed downtime meant that I could reconnect with peers and feel myself being completely and utterly filled up in a way that only comes when surrounded by people who get diabetes and this weird diabetes space. We don’t all have diabetes – we represent different corners of the community, but we know diabetes in a way that is particular to those who live close to or with it. Our dinner after the second day of the meeting saw us finally able to breathe and take some time out of diabetes speak, and instead revert to a steady flow of laughs (shrieks, actually).

The next day, a friend from Italy just happened to be in Florence. We met up and I met her family, including her son who has diabetes. As we drank coffee just over the Ponte Vecchio, diabetes was spoken about a bit, but mostly, I got to learn about this young man who is clearly going to take on the world. He is smart, funny, delightful and inquisitive. His questions about Loop were intelligent – far more so than anything I would have thought to ask before I started using the tech! I hugged his mum as we said good bye, noting that she had just introduced someone else to our tribe.

By the time I arrived in Copenhagen (at 2.30am thanks to high winds in Florence, a bus ride to Pisa to take a diverted flight and some first-rate Italian disorganisation), I was exhausted, but at the same time felt more enthusiastic about the diabetes space than I had in some time. The next morning when I arrived at the conference venue, I was ready for a packed day of speakers, and to do my own presentation in the afternoon. I looked around and saw that there were a number of people living with and around diabetes that I knew, as well as a whole lot of new faces in there. The event was for HCPs, but as always, those of us with a truly personal connection to diabetes searched each other out. I met members of a support group known as ‘Diabetes Dads’ who meet regularly to speak about their kids with diabetes. They were there to support their friend who was speaking about his Looping son.

At lunch, I sat at a table with two PWD I knew. Two other people joined us and we quickly found out they too have type 1 diabetes. The conversation flowed – we understood each other, and our shorthand of diabetes speak easily fitted into our stories. We nodded as we heard stories that sounded familiar, even though they were being told by someone from another country who, until we sat down with our overflowing lunch plates, we had never met before. One of the women at the table had asked during an earlier session about how to wear the devices required for Loop, and I pulled out my RileyLink and showed it to her. She held it and weighed it in her hands. She’d wanted to know how to wear it with a fitted dress and I was able to show just how easily I could tuck away everything, even with the straight dress I was wearing for the day.

We may have all been there because of an interest or curiosity in DIY diabetes, but there is far more than that to draw us together. Just like as at the earlier meetings. As always, diabetes brings us together, but it’s far more that keeps us that way.

By the time I boarded the Dreamliner at Heathrow, all traces of burnout, and questions about how to manage in the sometimes tricky maze of diabetes community had completely subsided and were replaced with the reminder that when we find out tribe and surround ourselves with them, the burnout is replaced by feeling supported. And that’s how and why we show up. We do what we do, we show up, we speak up and we try to get stuff done. Ten days of that and I feel so much better. Which is good. Because as it turns out, those ten days are just the start …

DISCLOSURES

My flights to Amsterdam and accommodation while in the Netherlands was covered by HypoRESOLVE. I am on the Patient Advisory Committee for this project. My flight to Florence and two nights’ accommodation were covered by Lilly. I was in Florence for a DOCLab Advisory Meeting. My accommodation in, and flight home from Copenhagen was covered by the Danish Diabetes Academy. The Academy invited me to speak at their Diabetes DIY Movement conference.

Revisited – Thanks for the chicken soup, Mum

May 13, 2019 in Family, Real life, Reblog | 3 comments

This is the second year running that I have missed Mother’s Day. Last year, I was in London en route to the HypoRESOLVE kickoff meeting, and this year, I’m in Florence for a DOCLab Advisory Group (DISCLOSURE: flight to Florence from Amsterdam covered by Lilly) meeting following on from the HypoRESOLVE AGM (DISCLOSURE: flight to Amsterdam from Melbourne covered by HypoRESOLVE). Both years, we’ve celebrated a week early to make sure that we mark the day. Because it is an important day. Our kid wants to spend the day spoiling me (which is just so gorgeous!), and I want to acknowledge just how essential my own mother has been throughout my forty-five years.

So, here is something I wrote about my own Mum and just how she has shaped so much of how I live with diabetes.

It’s Mother’s Day. In recent years, as I have found aspects of the day challenging, I’ve really channelled my energy on Mother’s Day into what my own mother has given me.

I am willing to admit my bias, but I think my mother is the best Mum in the world. She’s very cool, and when I was growing up all my friends thought she was awesome. She was in her early 20s when she had me, and has always been a young Mum. That’s not to say that she always knows what the cool kids are talking about. We have many stories of absolutely hysterical things she has said and done in the belief that she was being oh-so-hip. My sister and I never stop making fun of her, which she mostly takes with good grace. Mostly…

When I was growing up, there was nothing that I felt I couldn’t talk to Mum about. She was very open and no subject was taboo. I felt comfortable speaking with her about pretty much everything, and when I had my own daughter, I knew that I wanted to have the same sort of relationship with her.

Mum instilled in me a love of food and cooking – something for which I am so grateful. Yet as great as the cakes are that I pull out of the oven, or the plates I serve up for dinner, nothing is as good as her food.

She showed me that chicken soup is truly all it takes some days to lift my spirits and fortify me for what comes next. I’ve not managed to always have a stash in the freezer for quick thawing, but I am always welcome to let myself into my parents’ house and help myself to whatever is in my freezer. And when I am under the weather – physically or emotionally – a text message of ‘I’m sending dad over with some chicken soup for you’ is an inevitability.

When I was diagnosed with diabetes, she was there, alongside me: a pillar of strength on the outside when, I knew, she would have been falling apart inside.

She taught me how to live with a chronic health condition. I have watched Mum deal with her own health conditions for over thirty years. She has done so with incredible grace, determination and resolve. Every time something new has been thrown at her, she’s rolled up her sleeves and taken it on. A couple of years ago she had a double knee replacement and the speed and intensity of her recovery was a marvel. She pushed and pushed through rehab, recovering far sooner than expected.

There may not be an instruction book for diabetes, but thanks to watching Mum live with lupus, rheumatoid arthritis and Sjögren’s syndrome meant I did sort of have a real-life manual for how to get on with life even with my new health challenge. I looked at her attitude and took it on as my own.

She’s shown me that even through the pain and fatigue and frustrations that seem to go hand-in-hand with life-long health conditions, laughing and carrying on in a silly way is absolutely okay.

But equally, she also taught me that it’s okay to cry and feel overwhelmed.

She helped me understand that even though there are times that the thought of another appointment with another doctor for another thing was just too much to deal with, it is okay to complain about it, but I just had to do it.

She taught me that self-care days that involved sitting on the couch under a quilt watching reruns of British cop shows is absolutely okay. But the next day, you get up and get back into it.

She taught me that even though there were times I didn’t want to, I had to show up – show up to my own care, to doctors’ appointments, to blood draws, to work. She might say ‘Diabetes is shit today,’ (she’s a trade unionist; my potty mouth came from her!), ‘But you have to keep going.’ She tells me all the time that life with chronic health issues is boring. And it is. It really is!

Every day, she’s made me see that even though something may look easy, living with a chronic health condition is simply not. She wears the invisibility of her health condition the way I do mine. We smile through the sadness of what could have been had we not had so many health challenges to manage.

She made me understand that not everyone is as fortunate as we are when it comes to health care accessibility and affordability. And that helping those less fortunate is a responsibility I must never shirk.

The unconditional love, support and pride she has demonstrated in spades is, of course, much appreciated. Having a prototype right there for the type of mother I want to be has been a blessing. But I appreciate so much more than that. Our health issues may be different, but it is my Mum who taught me how to thrive with diabetes. I would not be living the way I am now without her having gone ahead of me. Or without having her stand beside me, and hold me up when I’ve needed.

Happy Mother’s Day, Mum. Thanks for the chicken soup. And everything else.

‘Like a diabetes club’

May 10, 2019 in Uncategorized | 2 comments

Schiphol International Airport is one of the busiest transit hubs in Europe. The train station and airport merge into each other and there are people everywhere.

It’s bright and early and I got off the train from Nijmegen where I’d been for the HypoRESOLVE AGM. A 6.28am train does not make me a happy lass, so I was dreading negotiating an airport that is quite manic before 9am on not enough coffee.

Dropping off my suitcase was easy and I had a boarding pass. Security was the only thing stopping me from sitting down and having more coffee. Standing in line, I started the familiar dance of getting myself ready to pass through the security area. I pulled my laptop from my bag, removed my Apple Watch and medical ID bracelet; my leather jacket came off and I unwound my scarf from my neck.

‘Good morning,‘ I said to the person directing the traffic to the different gates. ‘I can’t go through the full body scanner – I am wearing some diabetes devices that can’t go through. I think I’ll need a pat down.’

‘Not a problem,’ he said. ‘I’ll organise someone. You can have a full massage!’ He smiled cheekily at me.

‘Great,‘ I said. ‘A manicure and pedi would be wonderful too.’

He laughed and directed me through to the woman waiting to do my pat down.

I greeted her, still smiling. ‘I’m wearing medical devices. I have one on my arm,’ I signalled to my Dexcom. ‘And two here.’ I pointed to where my pump and RileyLink were comfortably housed in my bra.

She started to pat down my arm. ‘I can lift my sleeve,’ I said. ‘It’s a glucose monitor.’

‘Oh,’ she said, stopping for a minute. ‘You have diabetes?’

‘Yes, I do,’ I said.

‘So does my son. Type 1. He was seven when he was diagnosed. He’s eighteen now.’

‘I have type 1 too.’

‘Do you need to see my insulin pump?’ I asked as she resumed patting me down.

‘No – it’s fine,’ she said. ‘My son doesn’t use a pump. He’s a teenager. Diabetes isn’t the most important thing to him.’

‘It’s not to me either,’ I smiled at her. ‘It’s not all that much fun.’

I looked over to my travel companions who were making their way through security.

‘My friends over there also have type 1,’ I said. ‘Having friends who understand helps a lot.’

‘Like a diabetes club,’ she said. She had finished now and we were just standing there chatting.

‘Not a very cool one, and not really one that I want to be part of. But yes,’ I looked carefully at her. She had that look that I see anytime I connect with someone from our diabetes world. A bit of sadness; interest in talking to others who know, and hope. Always hope. ‘I hope your son is doing well.’

‘He is. He has some friends with diabetes. It does help.’

We said good bye and I was joined by my band of friends. And we went to get more coffee.

DISCLOSURE

My flight to Amsterdam and train travel to and from Nijmegen have been covered by the HypoRESOLVE project.

Revisited – Talking about Lows

May 9, 2019 in Uncategorized | 2 comments

I’m in beautiful Nijmegen in The Netherlands for a couple of days for the AGM of the HypoRESOLVE project. We’re in the midst of a very busy time of meetings, updates, sessions about data and statistics (my jet lagged brain is doing its best to keep up!) and discussions about just how significant hypoglycaemia is to people living with diabetes.

Here’s what I wrote after the kick off meeting twelve months ago. The project has made lots of progress and there will be more about that as it all comes to hand. But in the meantime, here’s what happened back in May last year in Copenhagen when the project was launched. (My disclosures remain as per the end of this post.)

I’m back from a very busy week in London and Copenhagen. I arrived back in the door at home exactly two minutes after Harry and Meghan got hitched, so I missed the whole happy occasion. If only we had some sort of magical way to see photos and videos and relive beautiful experiences like that. Oh well, never mind.

The main reason for my trip was for the kick-off meeting for Hypo-RESOLVE, a new four-year project focusing on better understanding hypoglycaemia. I’m there as part of the Patient Advisory Committee (PAC), which is made up of advocates from across Europe. Obviously, it is now legislated that an Australian also be included in any European diabetes advocate activities. I believe it’s called the Eurovision Law.

The project is made up of eight work packages, each led and staffed by leading European diabetes researchers and clinicians, and after seeing just who was going to be in the room, I suddenly was struck down by the worst case of Imposter Syndrome I have ever experienced. This didn’t get any better when I was told that the presentation I had been asked to give was not only for the PAC. No – it would be in front of all eighty project participants. I looked at the list of who I would be standing up and speaking to, and cursed the meme- and photo-filled presentation I had prepared, wondering if I could pretend to understand statistics and graphs, and add some to my slide deck to at least try to sound smart.

I decided to stick with what I knew (memes, cartoons, photos of weird hypo tales), and left the slide deck as it was, hoping against all hope that I would manage to keep myself nice, and sound as though I understood what I was speaking about.

I was asked to give a talk about the real life experiences of hypoglycaemia. Fortunately I have kept a pretty good record of the literal lows of my diabetes (which, incidentally, was the title of my talk). Thanks to the search function on Diabetogenic, I was able to easily pull together a number of stories about the lows I’ve had. This proved to be more useful than I realised because these days, lows are few and far between. Since I started Looping, I’ve not had the sort of low that has made me want to write about it and try to analyse what it all means in my diabetes life. In fact, I’ve not had any lows that have required anything more than a mouthful of juice or a couple of fruit pastilles to treat.

Reading back through my blog posts was actually really quite confronting, and I found myself getting emotional as I read details of terribly scary lows and how they had impacted on me – in the moment, and in the days following. As I read, I remembered the anxieties I felt about something happening while low that would seriously affect my family.

I’ve not asked them, but I wonder if the fact that I have so few hypos these days makes Aaron and the kidlet feel calmer about my diabetes. They still see me sucking on a juice box every now and then, but it is done without urgency, and without the look in my eyes that betrays the calm I used to try (and fail) to convey.

In my talk, I really tried to express just how significant hypos have been in my life with diabetes. I tried to explain that even once a low is ‘fixed’ there are often residual effects – effects far beyond just trying to work out what my glucose levels would do after playing the how-low-can-you-go-hypo-limbo.

I spoke about how the emotional fallout after a nasty hypo can be crippling, leading me to second guess every diabetes decision I made, wondering what I had done to cause the low in the first place – because that is the ongoing narrative of diabetes….we did something wrong to cause the hypo (or the complication, or the high, or the technology failure). And I really tried to explain how sometimes there are no answers, no matter how hard we look, or how desperate we are to find something to blame.

Of course I spoke about the language of lows and how the words we use impact on the way that hypos are considered. There is no doubt that ‘severe’ hypos are serious and need urgent attention and investigation, but so-called ‘mild’ hypos can be just as burdensome.

Obviously, everyone’s hypo stories will be different and I took great pains to clarify that I was speaking of my own experiences only. In the past, hypos have terrified, paralysed and alarmed me. I was afraid to sleep, I was afraid of lows when awake. I was scared I would have a particularly nasty low around my daughter and scare her. I am fortunate that my deliberate non-compliance has resulted in almost no lows, and feeling safer that I have ever felt before. My fear of hypoglycaemia is manageable these days, yet I don’t take for granted that it will always be like this. I still carry hypo food around with me – there is no point tempting the hypo gods by not being prepared!

I’ll be writing more about Hypo-RESOLVE in coming days. I’m so pleased to be involved in such an exciting and interesting project; I’m honoured to have been selected for the PAC. I’m beyond thrilled that PWD are included in the DNA of the project – right from the kick-off, not brought in at the last minute for comment when all the decisions have been made. And mostly, I am grateful that hypoglycaemia is being given the attention it deserves. I honesty hope that one day no one ever needs to feel the panic and fear that so many of us have come to know.

Kicking off the kick-off meeting

You can read all about Hypo-RESOLVE in the Innovative Medicines Initiative media release from last week announcing the launch of the project.

DISCLOSURE

My flights and accommodation to attend the Hypo-RESOLVE kick off meetings were funded from within the project. PAC members are volunteers on this project.

So much more than diabetes

May 3, 2019 in Diabetes, Peer support, Real life | 4 comments

‘I like your phone case.’

I looked up from my laptop and over at the woman sitting next to me in the crowded Qantas Business Lounge.

‘Oh. Thank you!’ I said to her. We were sitting at one of the high desks, both charging different devices before our flights.

‘I could do with one of those,’ she said to me. ‘I don’t like the word non-compliant, but to be deliberately compliant sounds like a lot of fun. Where did you get the case?’

‘A friend designed it for me and started to sell it on his online shop after I spoke at a conference for healthcare professionals. I’m with you on not liking the word. I’m a diabetes advocate and to me, non-compliant is a dirty word.’

I saw the woman sit up a little straighter. ‘You have diabetes?’ she asked.

‘Yep. I’ve had type 1 for twenty-one years.’

‘My daughter was diagnosed three years ago. She’s eighteen now. She just started at Uni this year. She’s doing really well.’

I smiled. ‘That’s great to hear. What is she studying?’

‘Music. She’s a singer.’ There was undeniable pride in her voice. Now it was my turn to sit up a little straighter.

‘Really? I did too. I was a classically trained flute player in a former life, studying at Melbourne Uni. I don’t play anymore, but I certainly loved it at the time. I thought it was going to be my forever ‘thing’. Then I kind of got side-tracked!’

We sat there and chatted more about music and having daughters and watching them grow up. We talked about raising strong and challenging girls, reminding each other that it was good that they were like that, even though we wished they would challenge others more than their own mothers! She told me about her job which takes her all over the world and we compared notes on coping with too much long-haul travel and far too much time away from our families. We complained about coffee in airports and on planes and how ridiculous our first world problems are. She asked me a little about my job and how long I had been doing it. Our conversation was peppered with expletives and laughter.

I heard my flight being called and started gathering all my things, tucking them back into my overstuffed bag.

‘Lovely to chat with you,’ I said as I stood up to leave. ‘Good luck to your daughter with her music studies.’ I began to walk away, but quickly turned back. ‘Oh, and her diabetes, too.’

‘I can’t wait to tell her that I met someone who has diabetes and studied music.’ She paused for a second. ‘I think she’ll be happier when I tell her that we hardly spoke about diabetes though. She hates it when that is all people ask about her.’

‘She is so much more than diabetes. We all are. And there are far more interesting things about those of us with messed up beta cells. She sounds like an absolute gem, ready to take on the world.’

I walked to the gate and as I was boarding my flight, I noticed the woman in front of me had a Libre sensor stuck to her arm. And that she was wearing the most fabulous red, high-heeled boots. I smiled to myself. So much more than diabetes.

Revisited – Tangled and complicated

May 2, 2019 in Advocacy, Awareness, Diabetes, Language | Leave a comment

Language matters. I feel I’ve said it so many times, and yet I still have people asking me why it is so important. So, I’m revisiting this post from just over twelve months ago which explains just how the words we use to talk about diabetes has an incredible flow on effect. Read on…

I had a great conversation the other day with someone who was interested to talk about diabetes and language with me. ‘I’m trying to get a better grasp of why it’s something so important to you, because, quite frankly, I couldn’t care less what people say about diabetes.’

This isn’t the first time people have asked me this. And it’s certainly not the first time I’ve been asked why I spend so much time speaking about diabetes language matters.

I know the reasons, but to be perfectly honest, I’m not sure that I have them especially well mapped out when I need to explain them. So, let me try here.

There is a tangled and complicated link between the words used when talking about diabetes, and how we feel about it and how diabetes is perceived by others. That link then goes off on all sorts of LA-freeway-like tangents to include diabetes and stigma, and discrimination.

The effects of how we frame diabetes can be felt by us individually. But they can also be far reaching and affect how others feel about diabetes.

We know that language has the potential to make people with diabetes feel judged and stigmatised. In fact, most PWD I know have at some time or another faced someone speaking to them using Judgey McJudgeface words. Of course, we all respond differently to this. For some people, it’s water off a duck’s back. They couldn’t care less what people say and just ignore it. For others, it’s almost a challenge – they use it as motivation to prove that they ‘won’t be beaten’.

But that’s not the case for everyone. For some people, it can be absolutely paralysing.

Fear of being judged and shamed may lead to some PWD to not wanting to attend HCP appointments and, as a consequence, falling behind on complication screening. Some PWD may not even tell their loved ones they have diabetes for fear of being judged. I have met PWD who made the decision to keep their diabetes a secret and for years, not telling another person. This can add to feelings of terrible isolation.

When diabetes is spoken about in stigmatising and demeaning ways, this leads to the spreading of misinformation. And this can have far reaching consequences.

We know that kids with diabetes may be teased by their schoolmates. Their teachers may not respond appropriately to diabetes because of the way diabetes is framed in the media or by others. We can’t really blame teachers. If diabetes is punchline fodder for every B-grade comedian, or an excuse to point fingers at those living with it by every tabloid news outlet, how can we expect anyone to take it seriously?

(And if right now you are thinking ‘This is why we need to change the name of type 1 diabetes’, stop it! People with type 1 diabetes shouldn’t be teased or mocked or judged, but neither should people with type 2 diabetes. This isn’t about people understanding the differences between type 1 and type 2 – this about understanding diabetes.)

The language we use when talking about prevention in diabetes – whether it be preventing type 2 diabetes or preventing diabetes-related complications – means that there is an underlying idea that developing type 2, or complications must be the fault of the individual. ‘If you can prevent it and haven’t, it’s your fault. You obviously lived an unhealthy lifestyle/are lazy/didn’t listen to your doctor/failed to follow instructions/refused to do what you were told etc.’.Can you imagine hearing that, or feeling that is what people think about you – all the time? This is the language – these are the words – used to talk about diabetes.

A couple of weeks ago in the UK, it was Prevent Diabetes Week. I saw countless tweets from people urging, begging, pleading with others to remember that type 1 diabetes can’t be prevented and the week refers only to type 2 diabetes. I wonder if those tweeting realised that comments such as these actually contribute to the stigma associated with type 2 diabetes? Of course type 1 diabetes can’t be prevented. But in many cases, neither can type 2 diabetes. There are so many non-modifiable factors associated with a type 2 diagnosis – factors beyond the control of the individual.

But let’s look beyond individuals, the health system and the education system for a moment. What else happens in other settings when diabetes is spoken about in stigmatising ways?

Health organisations, including diabetes organisations, frequently seek donations from the public to continue the important work they do. There is only so much money in the donation pie, and yet there are more and more competing organisations representing people with different health conditions wanting a piece of that pie.

Donations are harder to come by from the general community when there is the idea – the wrong idea – that diabetes is a largely preventable lifestyle condition that is the fault of those diagnosed. There is not the idea that people who have developed cancer brought it on themselves, even though we know that some of the risk factors associated with a breast cancer diagnosis are the same as for type 2 diabetes.

Research dollars for diabetes are far less than for other health conditions. We see that every year when successful NHMRC grants are announced. Diabetes is the poor cousin to cancer research and CVD research.

Diabetes is just as serious as any other condition that is worthy of research dollars and fundraising dollars. Yet because of the way we speak about it and the way diabetes as a condition has been framed, there is a perception that perhaps it isn’t.

Words matter. Language matters.

So, what I want to say to people who think that talking about language and words is a first world problem that only occupies the minds of the privileged is this: I acknowledge my privilege. But this isn’t simply about words. It’s about perception.

Until diabetes is considered the same way as other conditions that are taken seriously and thought of as blameless, the trickle-down effect is people with diabetes will continue to feel stigma. Diabetes will continue to be the poor cousin of other health conditions and diseases because there is the misconception it is not as serious. People will not as readily make donations towards fundraising initiatives. Research dollars will continue to fall short, instead going towards ‘more worthy’ conditions.

That’s why I care so much about diabetes language. Because, language matters… so much.