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Spending time surrounded by diabetes can be overwhelming and that is never more so than at a conference like ADA. It is huge – there are thousands and thousands of people, an exhibition hall with stands from device and pharma companies that messages about diabetes that are all tied up in statistics and words (and not really about people), and for every talk that shares hope and promise, others that focus on despair.

But it’s easy to step away from that – even if just for a moment – and turn to a member of your tribe. Because then…

…not once did I feel despair.

…not once did anyone pass judgement about another’s diabetes.

…not once did anyone make me feel afraid.

…not once did anyone attribute blame or shame.

…not once was anyone expected to explain themselves.

…not once did I feel stigma.

…not once were the words spoken anything other than real and authentic.

…not once did someone ask another person about their glucose level or A1c.

…not once did someone suggest that anything to do with diabetes was someone’s fault.

…not once did I feel overwhelmed or overcome.

…not once did someone make me feel that I was not enough.

…not once did someone look at another PWD to suggest that they were failing.

…not once was fear used as a motivator.

…not once were we made to feel sorry for ourselves.

…not once did my life feel like it should be measured in nothing more than numbers.

…not once did we call each other inspirational for just living with diabetes.

…not once did anyone do anything other than cheer another’s efforts.

…not once did anyone overreact if they noticed another PWD was low.

…not one did I feel that I was a burden.

…not once did I feel that I had to be a superhero.

…not once did I feel alone.

…not once did anyone demand that their way of doing diabetes was the better way.

…not once was diabetes the overall focus.

There are times that diabetes does its best to make me feel a burden, or that I am simply not enough. But not once – not ever – when I am around people like this do I feel anything other than whole.

Find your tribe

Find your tribe…

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More musings from ADA, this time following yesterday’s diabetes-related complications session.

DISCLOSURES

I am attending ADA as part of my role at Diabetes Australia. My economy flights and accommodation have been covered by the organisation.

As a parent, I learnt there is this magical thing that happens when you are in a really crowded and noisy place with your kid/s. Somehow, over the roar of the crowd, you can always hear your kid if they are calling out to you. It’s some sort of sorcery that blocks out the din, and allows your kid’s annoying angelic voice to still be heard.

That kind of happened to me the other day when I was sitting in a café minding my own business, working away and savouring the always excellent coffee at my favourite local. There was a table nearby that seemed to be made up of a mum, twin two or three-year-olds and grandparents. They were talking loudly, the kids were playing and talking over each other. They were a little rowdy, but it made no difference to me. If you want to work in a café, you have to be prepared for the noise! I wasn’t listening to their conversation – I was focussed on what I was writing. I couldn’t tell you what was being said.

Until I heard the word ‘diabetes’ through the racket, clear as a bell. I looked up, to hear the rest of what the mum was saying ‘…and it’s like a sensor you wear – I think on the back of your hand – and you just run something over it and you get your result. I want to try it so I can stop having to prick my fingers.’

I have had a statistically significant number of diabetes in the wild encounters recently. It looked like I was about to add another one to the tally.

‘Hi,’ I said. ‘I have diabetes. I also am a diabetes advocate. I think you’re talking about the Freestyle Libre. It’s a small sensor that you wear on your upper arm, and you scan your smart phone or other reader device over it to see what your glucose level is. I wear a continuous glucose monitor. That transmits my glucose readings to an app on my phone. It’s different, but kind of the same in that it limits having to prick your fingers.’

We chatted for a bit and then a friend joined me. She was actually wearing a Libre sensor, so (after ordering her coffee) she did a quick show and tell to so the woman could see how it worked. (For the record, not all my friends have diabetes. This was a fluke!)

I passed on my contact details to the woman and encouraged her to reach out and get in touch for a chat. Because that’s what we do. That’s how this community works.

I’ve been thinking about our diabetes community a lot recently. After being in Manila (please read my disclosures on this post), I have felt that strong pull towards people who gather strength from each other because of our shared experience.

One of the sessions in Manila addressed some community initiatives that have really relied on that community spirit, and we talked about why they work. Grumps and I led the sessions and discussed Spare a Rose, #TheLowdown2019, and #TalkAboutComplications. These were examples of different ‘campaigns’ that all had similar results.

Spare a Rose is owned by the diabetes community and it is for the diabetes community. It works because no individuals own it – that’s not how it works. You want to support it, great! Do your thing and get the word out. No one directs what it looks like apart from encouraging others to reach into their pocket to support Life for a Child and save the lives of children living with diabetes.

#TheLowdown2019 is a campaign out of Diabetes Australia (disclosure: I work there), but it isn’t about us. It is us creating a platform for the community to share their stories and come together. What we heard as people shared their hypo experiences was others connecting to those stories.

And #TalkAboutComplications provided an opening statement and ongoing support and encouragement for the community to talk about a topic that is often seen as taboo, and filled with blame and shame.

As I wrote in this piece, the group in Manila was already a community, even if they hadn’t quite started calling themselves that yet. And since then, they have found their voices – loud, passionate, smart voices – and are showing what community does. They support each other; they build each other up; they share what they know.

We use the word ‘community’ a lot in diabetes. We talk about it in terms of face-to-face groups, we talk about it when it comes to meeting others with diabetes and welcoming them into the fold, and we talk about it in terms of our online connections. Some people struggle to find just where they fit in there, but I genuinely believe that there is a place for everyone. You just need to find the tribe that makes sense to you and your perspectives of diabetes.

I have written and read a billion words about why community matters, and how, when it’s right it can be an absolute saviour. When I try to explain the value, it’s easy to get lost in superlatives, and sickly sycophantic gushing that start to sound empty, so I often show this video and throw the hashtag #Simonpalooza at people, making them promise me to look it up and learn about it. Now, I can add the story to what happened in Manila last month.

I became part of a new community when I was in Manila, and those advocates became part of our bigger one. I feel that their experiences add to the diversity and the experiences of the DOC. Their stories start to meld into the fabric of other stories, and I so love that we now get to hear them too.

When those diabetes in the wild moments come my way, I can’t overlook them. I suppose I could have ignored what the woman in the café was saying and let her work it out on her own. But why would I do that? I have benefited from the no-agenda-other-than-wanting-to-connect attitude of many in our diabetes community – honestly, I benefit from it every single day. There is no way that I could do anything other than say ‘hi’. And connect.

(Video of Day 1 of the Manila workshop made by one of the advocates, Kenneth.)

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.

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.

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.

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.

Twenty-one years of diabetes feels like forever sometimes, and I feel as though nothing surprises me anymore – it’s just same, same, day in, day out. And most days really are like that. But then there are moments that jolt me.

I had a moment this weekend that did just that. It felt familiar, because it happens occasionally. But it passes and I forget. I think that before this weekend, I’ve never really tried to work out just what it was that I was feeling.

But this time…this time I did.

Perhaps it was because I had four glorious days of long weekend and time to think, or maybe it was because diabetes was far more dominant than I’ve come to expect, thanks to thirty-six hours without Loop (which is a story for another time).

This feeling is like being in the ocean and being pushed under by an unexpected wave. I feel overcome and I feel that every single part of me is being caught up and I can’t escape. It hits me out of nowhere and as I’m being pulled under, it takes over.

It lasts no more than a heartbeat or two, and usually I just shake it off and get on with whatever I was doing.

But this weekend, I stopped and along with feeling swept up, I felt an overwhelming and complete sense of sadness descend upon me. I know I have diabetes. I have accepted it. I feel it living in me. But this sadness is matched with a realisation that this is it – I don’t get a chance to be without this ever again.

I’m doing a lousy job trying to explain this, and I don’t want to sound like I am in the midst of some sort of crisis, or about to sink into the depths of a period of burnout. I’m not there – or even staring it down.

This is just that fleeting moment of remembering that diabetes will always be present, and each day, it will rob me of some of my time, my mind, my headspace. It makes me feel sad when I think of this.

I was reminded that we do so much to just settle ourselves around all that diabetes demands of us. Some of that is physical rearrangement as we accommodate the devices and scars and paraphernalia that accompany this condition. But so much of it is how we think and feel. In the past I have not given this feeling a name, or allowed it to be any more than a passing flash – barely a blip on my consciousness. Maybe this time I permitted more because I could handle it and was ready and able to give it a place.

My body and mind are taken up so much by diabetes – I don’t want to give it any more attention. But this weekend, for more than just a minute – although not too much more – I gave name to this sadness that I feel. It passed and on I went. But it lives there now – or rather it always has.

This is honestly what I thought life had in store for me following my diabetes diagnosis twenty-one years (and two days) ago:

(Click for source)

The reality is, of course, very different. The reality is that I am healthy and absolutely not abstaining from things that bring me joy (see: Nutella). I’m still working on the long life part, and have every intention of making that a reality too.

If you are newly diagnosed (or know someone who is), find people who are doing this for real, not text book tales of a diabetes life. There is a lot of joy still to be had. I promise.

I have some illuminating discussions with healthcare professionals. After I’ve had an in-depth conversation, I find myself going over things they have told me and discover that I have always learnt something new about what it means to work in a system that is, in many ways, broken. I learn how their approach to healthcare changes year by year as they try to do their best for the people they see each day. And I realise that I never, ever could do their job.

Other times, I shake my head a little because I wonder how their understanding of the day-to-day challenges of living with a chronic health condition is so far removed from reality. In these cases it’s almost as though we are speaking different languages.

Recently I spoke to a group of HCPs about those differences. I focused on how we manage to fit diabetes into our busy lives in ways that HCPs never can imagine and how the neat text book description of life with diabetes is very different from the mess that we are trying to tame each day. I spoke about how what they say can be read in a multitude of different ways by those of us on the other side of the consultation, and to think about words carefully. And I spoke about how although some education of HCPs about diabetes suggests that there is a one size that somehow fits us all, the truth is that we require our education to take into consideration every size and shape possible and for it to be delivered accordingly.

A doctor came up to me afterwards and thanked me for my talk. ‘Thanks for making me think differently about some things,’ she said. I loved that she said that, and I told her so. ‘Actually, that’s always one thing that I hope to get when I hear someone speak about diabetes – a new perspective or way of thinking about something that I think I have all worked out.’

We chatted a little about what she’d heard that had surprised her and would she would now be thinking about in other ways. I may have high fived her when she said that she would now be taking a lot more care with the language that she uses. ‘I had no idea that what I was saying had such stigma attached. I honestly thought I was saying the right things. I never meant for people to feel blamed, but I can see now how I could have come across that way.’

That’s been one of the challenges of the #LanguageMatters movement in diabetes. As we’ve tried to bring HCPs along for the ride, we’ve had to do it in a way that doesn’t make it sound like we are berating them. I do and will continue to call out language that impacts on PWD negatively because it does matter. Language has the power to make us feel like we can take on diabetes or be defeated by it; it can make us feel like we are doing all we can and that is enough, or that we are failing and will never do enough. Again, for those down the back – language does matter. But I truly have never believed that HCPs use language with any malice or intent of harm. It’s often just because they repeat the words and phrases that have always been used.

I explained this to the doctor and we spoke about how to get the message across in a way that highlights and promotes collaboration. After we’d been speaking for about 10 minutes, she said ‘I have a question for you,’ I nodded, eager to hear what she wanted to ask. ‘What’s the best kept secret in diabetes?’

I was startled. What an interesting – and frankly brilliant – question. I’d never been asked that before and I wanted to think about it a lot. Poor woman – I’m sure that she just wanted some sort of quippy response and to be done with it so we could go home and eat dinner.

‘Wow!’ I started, excitedly. ‘I love this. Are there any secrets to diabetes?’ I started a checklist, going through some ideas.  ‘Is it peer support? For some reason, a lot of people don’t know just how widely available this is. Or maybe it’s how people can drive their own healthcare by setting the agenda. I frequently have people tell me that they just do what their doctor tells them (or rather, say they will) because they didn’t realise that healthcare could be an open and joint dialogue. In diabetes, maybe it’s all the clandestine DIY stuff that is going on which is so apparent to those of us who play on Facebook and Twitter, but maybe not to those who are not online as much. I know it’s NOT cinnamon. Actually – maybe it’s the whole thing about how when living with diabetes, or other chronic condition, our mental health is rarely taken into account, so perhaps understanding that and being referred to relevant services is the secret. It happens to so few of us…’

I stopped, because I could sense that there was so much I wanted to say, but I truly didn’t have an answer. ‘I don’t really know,’ I sighed. ‘I wish I did. I wish there was one…’

We said our good byes and I started to walk away before the doctor called after me: ‘You know what the best kept secret in diabetes is?’

I spun around. ‘What?’ I asked. I admit that I was hoping for a key that was going to unlock the mysteries of diabetes and suddenly make it a lot easier to live with.

‘You,’ she said. ‘And others like you. If only doctors like me took the time to listen to you all we would know a lot more and probably do a much better job.’

I smiled at her. ‘We’re not really a secret,’ I said. ‘We’re actually quite out there. You’re just not looking in the right places. Or asking the right questions.’

I gave her a little wave and left the room.

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