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Not this:

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Or this:

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Also, not this:

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And not this either:

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At #DX2Melbourne last week, we had a live webcast in an attempt to include people not invited to be part of the event to hear from some of the bloggers and contribute to the discussion. The hour-long webcast was about diabetes and mental health.

With delusions of Jenny Brockie and Tony Jones, I facilitated the discussion – which was actually quite difficult as there were thirteen of us sitting in a row meaning we couldn’t all see anyone other than who was sitting directly next to us without leaning dangerously forward. Also, I kept nearly falling off my stool, which suggests that I am the most ungraceful creature to have ever been positioned in front of a camera.

I’d put together some questions and discussion points to guide the discussion, but was very open to any tangent the group wanted to take to really navigate and explore the topic of diabetes and emotional wellbeing.

As the discussion flowed, I couldn’t help but feel a sense of déjà vu. Another talk about how diabetes affects us emotionally; another talk about not getting the support from psychologists and counsellors that we need; another talk about how usually it’s not even recommended that we may need to speak with someone about the mental health aspect of living with a chronic health condition; another talk from well-connected diabetes advocates saying that there is more to diabetes than simply being told our A1c, or any other number for that matter.

Amongst all the chatter, I asked myself how many times I’d participated in talks, how many talks I’d given, how many tweet chats I’d tweeted in, how many blog posts I’d written that were about the emotional side of diabetes. And then today, on my TimeHop app came this tweet, from an OzDOC tweet chat about mental health, held exactly 12 months ago today:

I’m not saying this because I think we’ve ‘done’ this topic and should leave it alone now. Not at all. I’m just suggesting that we’ve been having the same discussions about this really important topic for a long time, and yet diabetes care still seems to have this imaginary, yet somehow real, line down the middle, with the physical aspects of diabetes to one side, and the emotional aspects on the other as if the two are not fundamentally connected.

I knew that there would be some people listening in who would be hearing all of this for the first time. It would be the first time that although they had probably worked out that there was something missing from their diabetes care, they weren’t sure what it was. Or, they may have known they needed to speak to a psychologist or a counsellor, but didn’t know who to ask about it…and anyway, they may have thought, surely if this was something that lots of people with diabetes feel, someone would have mentioned it by now, right? Right???

Nineteen years I’ve had diabetes. And for at least seventeen of them, I’ve understood and known the importance of checking in on how the emotional impact of diabetes is contributing to how I am managing my diabetes. Or how I am not managing my diabetes (see above tweet….).

The idea that we can separate our mental health and emotional wellbeing from our diabetes is ridiculous. A condition that permeates every aspect of our life, moves in, makes itself a home and lords over us with terrifying threats of what lies ahead, impacts on our abilities to manage the day-to-day physical things we need to do.

Those watching the webcast at home could submit questions for the panel. A couple of diabetes healthcare professionals were watching and one asked a question that, as I read it, made my heart sink. He said that he sees people with diabetes who he believes would benefit from seeing a psychologist, but he is concerned that they will be offended if he suggests it. He asked the panel for ideas on how to broach the subject without causing offense.

Why did my heart sink? Because the question showed that there is still so much stigma associated with seeing a mental health professional, that other HCPs – on the ball, sensitive ones who know and understand the intersection between diabetes and mental health – feel worried that they might upset someone with diabetes if they suggest referring to a psychologist.

Until we normalise psychological support – until at diagnosis when we’re introduced to our new diabetes HCP best friends and psych support is part of that team – the stigma will continue. I’m not suggesting that everyone will need or want to see a psychologist. But putting it on the list, alongside a dietitian and a diabetes educator and an eye specialist will at least people understand that, if needed, there will be someone there to help with that particular piece of diabetes. (And to be perfectly honest, I really do wish I’d seen a psychologist at diagnosis rather than the dietitian who has scarred me for life with her ridiculously large rubber-mould portions of carbohydrate she insisted I eat at every meal!)

I don’t feel as though I am a failure because I have needed to consult a mental health professional in the past. I don’t think that it suggests that I can’t cope or that I can’t manage diabetes. I see it as important a part of my diabetes management as anything (and anyone) else. A lot of the time, I don’t feel as though I need to see someone. But other times, I do. And that is fine.

DISCLOSURES

Abbott Diabetes Care covered all my costs to attend #Dx2Melbourne, and provided all attendees with two FreeStyle Libre sensors and, if requested, a scanner. There was no expectation from Abbott that I would write about the event or any of their products, and everything I do write about it is my opinion, in my own words, and in no way reflects those of Abbott – or anyone else, for that matter.

You know that old word play about why we should not assume anything? Because ‘assume’ makes an ‘ass’ out of ‘u’ and ‘me’. Yes, it’s lame and I don’t like using ‘u’ for ‘you’ (because I’m a word nerd and don’t do ‘text speak’), but the sentiment is good.

There are so many assumptions that come with diabetes. And almost all of them are destructive.

‘People with diabetes must have eaten too much <insert food/drink type> as a kid.’

‘People get diabetes because they’re fat.’ 

‘People get diabetes because they don’t exercise.’

‘Diabetes means you are sick.’ 

‘People with diabetes could be managing better if they just tried.’

Many of us will have had these sorts of comments made directly at us. Some of us will have heard people say these things. Most of us will have seen these sorts of comment perpetuated in the media and in popular culture anytime diabetes gets a mention.

And they are all wrong.

It’s time that we removed all negative assumptions and replaced it with just this:

Imagine how different things would be if that was the starting point of diabetes discussions. Instead of the judgement and finger pointing that often is associated with a diabetes diagnosis, the first thing that everyone said was ‘And now let’s talk about living well with it.’ Instead of the threats, the attitude was ‘You can thrive with the right treatment’.

Finding out someone has diabetes does not in any way give you a window into their life or an indication into their behaviour. But it does tell you that they have a health condition that requires regular management and the best possible treatment.

Imagine how much easier life with diabetes would be – and how much kinder the conversation would sound – if the next time we told someone we have diabetes, the only thing we heard was ‘Are you getting the healthcare and treatment you need?’

Wouldn’t that be a great place to start the conversation?

I’m a little cranky this week. At least, that’s how it may seem with some of the ways I’ve been responding to things I’ve seen online.

Yesterday, mice were cured again which was awesome and wonderful if I were a mouse, as suggested in the photo to the right.

Alas, I am not, so I felt the way I usually do when I hear of diabetes disappearing in rodents – ambivalent, as I crabbily pointed out to anyone who would listen. (It was quite timely when this article came across my radar which did a good job explaining how mice and humans are different and therefore what works for a mouse may not work for a Renza…or any other human.)

And then there was Monday’s post about the Twitter discussion about how much power and influence healthcare users have in the healthcare system (spoiler alert: the answer is very, very little…).

But today, I’m writing about an ongoing Twitter discussion that has me shaking my head for different reasons.

I wasn’t around the diabetes world when home blood glucose monitors came onto the market. I was handed a meter the day I was diagnosed in 1998, and I was able to take myself off to an NDSS outlet and pick up strips. Blood glucose monitoring was expected then, and I was easily able to access what I needed to meet the recommended glucose monitoring treatment I was prescribed. I remember being told just how essential it was that I prick my finger and check my glucose levels before meals and before bed – at least. This was the technology that was readily and affordably available to people in Australia and healthcare professionals were very, very in favour of using it.

But it wasn’t always the case.

In the early 1980s, home blood glucose meters started being offered to people with diabetes to take home and use. It was the start of self-monitoring blood glucose (SMBG) – before this, it was all about weeing on a stick and analysing colours. The advent of SMBG is certainly one of those moments on the diabetes timeline that stands out as an important step in diabetes management and improved care.

At the time, there was a lot of criticism of this new-fangled device, with many HCPs believing that it wouldn’t take off, the expense was needless and that there was not enough evidence to support the ongoing subsidisation of such technology. According to a short reflection piece to BMJ in May 1998, the introduction of SMBG had clinicians believing home glucose monitoring ‘a dangerous practice’.

As insulin pumps became more popular, the same attitudes were emerging and in 2001, when I decided I wanted to start on a pump, I had to doctor shop before I could find an endo who would agree to filling out the necessary paperwork. The reasons for refusing my request ranged from ‘You’ve not had diabetes long enough yet,’ (I started on a pump almost three years after diagnosis) to ‘They’re not safe’, and ‘There’s no evidence a pump will improve your A1c’, to which I replied ‘Okay – but will it let me sleep in on a Saturday morning and present more flexible food timings and options? Because my quality of life is seriously impacted on having to freedom to live my life because of the restrictions my current diabetes treatment regimen demands and I am becoming burnout and resentful of it right now.’

I wish I could say that these ideas ceased when I started on a pump, but we still hear today people being refused pump therapy for a litany of reasons that, quite frankly, don’t hold water in most cases.

And then, the arrival of CGM was met with exactly the same reaction. ‘It will make people obsessive,’ and ‘there’s no evidence to suggest that it actually improves clinical outcomes and A1c’ and ‘It’s a gimmick – we have blood glucose monitoring that works just fine,

This, despite a recent talk I attended at ADA where endocrinologist, Steve Edelman from TYOCD declared:

Which brings us to the the Twitter discussion this week which centred around FreeStyle Libre and concerns that there is not enough evidence to warrant subsidy of the product in the UK (following a report on the device from NICE in the UK). Arguments shared in 140 characters or fewer very much centred on the lack of evidence about the Libre.

I understand the arguments: clinicians were calling for randomised control trials (RCTs) to provide the evidence they feel comfortable with before they are willing to recommend a product: they want evidence to support clinical outcomes (i.e. lower A1c).

The problem here is that RCTs are costly, take a lot of time and often don’t measure anything more than clinical outcomes. Plus, they are rarely, if ever, co-designed by the people impacted by whatever is being studied.

It was the same sentiments as when other new tech was released into the market. Often it’s new diabetes tech that provides the user with more information, more data….and more control over how and what they are doing to manage their diabetes.

The pattern repeats itself each time there is something new: clinicians are wary (which, it could be argued is their role), people with diabetes are excited. In the case of Libre, I know of many people who, after years of refusing to measure their blood glucose due to pain and intrusion, have started actively monitoring their glucose and making meaningful treatment decisions due to the ease of Libre. One woman said that it has meant that for the first time in over a decade she feels she actually has some idea of what is going on with her glucose levels which has resulted in her making smarted food choices.

As I read the tweets, I started experiencing very strong feelings of déjà vu. And I also was once again reminded of why so many subscribe to the #WeAreNotWaiting movement. And I ask: Is it any wonder that people are hacking diabetes devices and building their own systems to do what we want them to – what they are capable of doing – now?

P.S. Just a reminder that there is currently a stakeholder engagement underway following a submission to list FreeStyle Libre on the NDSS. You can read all about it here (where you’ll also find the link to take you to the survey).

In my endo appointment the other day, after we’d finishing working through my pathology results, I wanted to speak about the mythical pre-bolus.

I say mythical because, seriously, the day I work out how to get the whole pre-bolus thing right is the day I see a unicorn walking up a rainbow while talking to a phoenix. I have hope this will happen one day.

My endo is one of those rare beings who understands the absolute intricacies of pumps. She knows a lot – from simple button pushing to complex things that make my brain hurt. When I started talking pre-bolusing, she brought out graphs and charts to help us work through my questions.

I mentioned that eating lower carb certainly helps avoiding post-meal spikes, but I was having trouble getting my morning coffee dose right. I know exactly the number of carbs in the milky-latte-with-one I order, but the timing of the bolus is critical to avoid a post-caffeine spike and ensuing plunge.

Plus,’ I added. ‘It depends what is going on with my glucose level as I start to drink. If I’m already dropping, which may be happening at that time of morning, and I bolus too early, I’ll end up hypoing, so I usually wait until about five minutes before I order my coffee. But if I’m above target, I need to bolus at least 15, but more like 20 minutes before ordering. If I’m steady and in range, somewhere closer to 10 is more like it. Maybe 12…’

Just drink the damn coffee!

I heard myself going into such detail and suddenly, I realised how bloody boring I sounded. My poor endo had just endured a 10-minute monologue from me on bolus dose timing to cope with my over-priced morning coffee from the hipster coffee shop next to work. I couldn’t help wondering if this really is the best use of the time and expertise of a most excellent endocrinologist? Also, I was embarrassed at presenting this first world problem as such a pressing issue.

She showed me some graphs, and drew a few others for me to think about. We spoke about timing and strategies and things to consider before pressing the bolus button.

But then she stopped and said, ‘You know, you can think about all these things, but you can also not worry too much. Obviously it’s up to what you want to do here, but thinking about things in ‘minutes’ before your dose…you need to decide if that really necessary.’

And then it hit me. The over-analysing and over-stressing and excessive scrutiny. What for? I’d just seen an in-range A1c that suggested I’m managing just fine with what I’m doing. Was the angst of blousing twelve minutes versus 16 minutes prior to my morning caffeine jolt really worth the calculations and the strain?

We are often critical that our HCPs put unreasonable expectations on us with what they demand we do to manage our diabetes. How refreshing to have a diabetes HCP who actually suggests that we breathe and take a step back for a moment to decide if a particular undertaking is absolutely necessary, or if it is just adding unnecessary pressure to our already highly-pressured diabetes selves.

As someone who is rather passionate about the words we use when we are talking about diabetes, I was framing how I would respond in my endo appointment when I finally received my pathology results yesterday. ‘Path results are not a moral compass, Renza. They give you a snapshot of data and that is information to help you inform treatment decisions moving forward. Nothing more. Nothing less. Your value as a person is not based on the numbers on the paper.’ I repeated the words rhythmically over and over and over again.

And maybe, I almost started to believe them.

I walked into the office and sat down anxiously. With a smile, she handed me sheets of paper. ‘You’ll be happy,’ she said to me. She told me my A1c as she knew that was what I would want to know first.

I flipped through the papers, the numbers starting to blur. I heard the A1c number but the rest stopped making any sense. ‘I don’t know what I’m looking at all of a sudden!’ I said to her.

Ah,’ she said. ‘Let’s start with your kidney check because I know that always worries you.’

We went through all the other results too. I was smiling and almost bursting into tears. ‘I’m so pleased,’ I said. ‘I’m so pleased with myself.’ And it’s true. I was feeling good about myself. And then I stopped taking.

Of course I was pleased; the results were all good. The numbers were in my target range. All of the worries I’d had for the last week melted away. But along with the celebration, I was starting to feel uncomfortable.

If the numbers were not where I wanted, my response would have been disappointment and, perhaps a little shame. I would not have been pleased with myself, instead chastising my lack of effort and feeling I was not enough. Yet, the effort would have been the same regardless of the numbers on the page.

Try as I might, I cannot divorce the idea that an in-target number is somehow connected to my value as a ‘good person’, which translates to an out-of-target number means I’m not. I fight this idea all the time. I write about it, I talk about it, I genuinely thought I believed it. Does the entrenched messaging we are told over and over again by some HCPs mean we actually should assess our own value as people based on numbers (a pathology check, BGL check, CGM trace, weight, blood pressure….)? Can we simply not move beyond the judgement?

I pushed away the thoughts and tried to just breathe with the relief I was feeling.

I walked out, paid the bill and walked to my car. I decided that I wanted to share the good news with Aaron, and I sent him a text with my A1c result. He responded perfectly with a gorgeous message…and then brought me Tim Tams for dessert.

And while we were munching on those Tim Tams, I said to Aaron, ‘You know, I’m really pleased with everything here. I’m pleased with my A1c, but the thing that relieved me more than anything are these five words…’ I leaned over and pointed to the paper at the five words I was referring to:


And I breathed out. Possibly for the first time in a very, very long while.

Last Wednesday, I walked into a local pathology office, rolled up my sleeves, held out my arm and watched as the pathology nurse filled three vials of my blood to be sent away. I then peed into a little yellow-lidded plastic jar, placed the jar in a plastic bag and handed that to the nurse waiting outside the bathroom.

And then I walked out of the office, headed to one of my favourite cafés, sat down and worked for a few hours.

I’d like to say that’s end of a very boring story. But it’s not. It’s Monday today and for the last six days, I’ve not stopped thinking about those drops of blood and pee. (I know; slightly gross.)

This week on Wednesday, I have an appointment with my endo. It’s a follow up from my visit last month. I walked out of that consultation with the path slip in my hands and a promise in my head and heart that I would go and have the blood draw done and face the results.

It’s been a very long time since I last had my A1c checked. Very.Long.Time. As in – no freaking idea the last time. It’s also been a while (the same length of time, I guess) since I had any other diabetes complications screening. I’ve not had my kidney function measured or my coeliac screening done. With only half of my thyroid still in my body, (the right half was removed along with a benign tumour back in 1998), I should be having that checked regularly. But I’ve not.

I don’t know why I am so committed and diligent about getting my eye screening done, but that is truly the only diabetes screening that is always – ALWAYS – up-to-date.

So for the last six days, I’ve had many hours, often in the dark of the night when the rest of the household is sleeping, lying wide awake wondering what those drops of bodily fluids have to say. (Again, yuck.) That’s when the nasty self-talking me comes out.

The nasty self-talking me is destructive. She’s relentless and actually quite nasty. ‘I bet your A1c is high, Renza. Really high. And I bet that your urine test is going to show some problems with your kidneys. And you know what? If there is, it’s all your own fault for not being on top of it.

My nasty self-talking me hasn’t read the Diabetes Australia Language Position Statement and says things like ‘You’re totally non-compliant. You know that, right?’ and ‘You’re a bad diabetic. The results are going to not be good at all.’

Last night I dreamt that it was Thursday and I’d missed my appointment, and try as I might, no one would give me my results. I called my endo’s office and the receptionist told me that as I’d forgotten to show up for my appointment the results had expired and disappeared. And then she called me non-compliant and unreliable. (This is so totally not what would happen because she is delightful and lovely and no one in my endo’s office is nasty and judge-y.)

When it’s not the middle of the night and I am thinking logically, the usual self-talking me – the rational one – says sensible things. ‘Yep, you’re right. It has been a while since you had all your screening things done. But you’ve done it now and that’s awesome. Just sit tight until Wednesday and then you’ll see where things are. And if there are problems, we can address it then. Do you need a new pair of boots?’

And when nasty self-talking me says things like ‘Bad, bad diabetic whose A1c is going to be terrible’, the rational self-talking me says ‘It’s just a number. You know that. And if it is higher than you would like, you can put some strategies in place to bring it back to where you are comfortable.’

I like the rational self-talking me. She’s sensible and uses words I like to hear. But it does seem that when there is even a shadow of doubt, she is very much overwhelmed by the nasty self-talking me. And, boy, does she has some attitude! She makes me feel that I should measure myself by numbers. She makes me feel like a failure for not always staying on top of all my diabetes screening. She makes me feel that if anything goes wrong I am to blame. She’s nasty. Really, really nasty!

So right now, with rational self-talking me typing away, I’m putting this here for the next couple of days (and for future reference) when nasty self-talking me is the louder voice:

  • You are not defined by your A1c or any other number.
  • You are not a bad person because you have let some of your diabetes management slip.
  • If it turns out that the results are not what you hoped for – in any way – you can and will deal with that.
  • And it’s not your fault if that is the case.
  • Diabetes complications do not mean that you have failed.
  • You work bloody hard to manage your diabetes as best as you can at any moment and you should go and eat a cupcake right now to congratulate yourself for that.
  • If you feel that you could be doing better, work out how to make that happen. Your endo appointment on Wednesday might be a good place to start.
  • Tell that nasty self-talking part of you to piss right off.
  • And yes. You do need a new pair of boots.

After my pathology visit, I went to one of my favourite local cafes which sometimes has puppies to cuddle. How cute is Juno?!

It’s day three of the eighth annual #DBlogWeek, created by Karen from Bittersweet Diabetes. This is the sixth year I’ve taken part and it’s a great opportunity to not only write about some truly interesting topics, but also a chance to read some blogs you may not otherwise. Here are the links to today’s posts.

 

Today’s prompt: Having diabetes often makes a visit to the doctor a dreaded experience, as there is invariably bad news of one kind or another.  And sometimes the way the doctor talks to you can leave you feeling like you’re at fault.  Or maybe you have a fantastic healthcare team, but have experienced blame and judgement from someone else in your life – friend, loved one, complete stranger.  Think about a particularly bad instance, how that person talked to you, the words they used and the conversation you had.  Now, the game part.  Let’s turn this around.  If you could turn that person into a puppet, what would you have them say that would leave you feeling empowered and good about yourself?   Let’s help teach people how to support us, rather than blame us!  

I’ve written before about difficult encounters with HCPs. There was this time and this time. And this time where it wasn’t even me who the HCPs were speaking poorly about! 

So, instead of doing that today, I’m going to talk (as in actually speak) about the the overall issue of blame and diabetes, and what can be said to address the blame game. (Apologies for the speed talking and hand waving.)

I had an appointment with my endocrinologist the other day.

My appointments with my endo don’t really take a particular form, because she absolutely lets me drive the agenda.

Having said that, they do start the same way. She asks me how I am, and then sits, looking at me until I finish answering. My response may be ‘good thanks…’ and the off we go. Or it may be a much longer response. Or, it may involve me bursting into tears two and a half minutes after sitting down. But she never interrupts or looks away, instead, focusing on me and what I am saying. Occasionally she may make a note on the notepad in front of her (she doesn’t take notes on the computer during the consultation). I feel I have her full attention the whole time.

This week, as I was making my way to the appointment, I thought about what my attitude towards my diabetes has been recently, and the word that came to mind was ‘meandering’.

I’m not really in a diabetes rut, but equally, I don’t particularly feel like I have any goals that I am working towards. I’m just wandering around, doing what I need to, stopping every now and then to have a look around, maybe sitting down sometimes and admiring the view, and then getting back on my feet and heading back off in a different, or maybe the same direction. Drifting is probably the right word.

I don’t really feel bad about it – my CGM numbers don’t scare me too much. Hypos are manageable and not too frequent. I calibrate my CGM, I bolus insulin before or as I sit down to eat. Last week I started to think about basal testing in a burst of focus and dedication. Basically, I am just going along, albeit aimlessly.

While that’s okay, it kinda makes endo appointments difficult. I did have a few things I needed to get done: VicRoads were asking for my first born child medical review (again), and I needed my usual diabetes-related screenings done. It had been a rather long time since my last A1c. I wanted to know what my bloody pressure was. But that was really all the ‘tasks’ I had planned.

And I also wanted to have a chat about my new eating attitude. It’s been quite a while since I’ve been eating lower carb. Sometimes I am more commuted to it than other times. But generally, I know that I am eating between 50 and 80 grams of carbs a day.

While I wasn’t looking for approval, I certainly did want to hear what she had to say about my new approach to food and my diet. She listened to me explain the changes I’d made and the reasons behind them. And the results I was seeing. I explained that I felt better overall and was really pleased with what I was seeing in my CGM trace as a result of my decisions.

Our discussion was brilliant. She nodded at what I was saying and answered some questions I had about the science of low(er) carb eating. She drew me some graphs that really put into perspective some of the things I’d been wanting answers to. We spoke about where there was evidence, but also where the evidence was lacking. The thing I loved was that at no point was I made to feel that a lack of evidence means that I shouldn’t be doing what I’m doing, or that I am silly for even trying it.

There is a reason that I choose health professionals like my endo to be work with. I have heard many other HCPs absolutely reject someone’s treatment choices. Low carb eating is one of those choices that does seem to cause such dismissals! But our discussion was open, without any judgement at all.

I walked away from the appointment feeling that I was better informed about what I was doing and energised to keep going. I felt engaged and focused, armed with information to make smarter choices.

And I felt grateful (yet again) to have this particular health professional alongside me on this diabetes road, even if I am just meandering sometimes.

Back in 2012 when we were thinking of starting the #OzDOC weekly Twitter chat, Kim, Simon and I were committed to making sure that it was a safe place, welcoming to all who wanted to use it. We encouraged people to actively participate, lurk in the background, jump in and out as they needed.

I had always been so impressed with the non-toxic and inviting place the #DSMA chat was, welcoming people with all types of diabetes as well as a few health care professionals, and I hoped that we could replicate this environment, albeit on a smaller scale, with #OzDOC.

Pleasingly, that’s the way it started and now, it continues to be that way. While I’m no longer involved in the running of OzDOC, or moderating its weekly chats, whenever I do drop by to participate, it is clear that the safe and inclusive model that formed its foundation continues.

It has been great to see that the encouragement of healthcare professionals to join in – lurk at first to get the idea and then respectfully participate – has continued, and frequently, a DNE or dietitian or endo will pop in and contribute.

But last night, during the chat, there was an intrusion that was not respectful. In fact, I likened it to someone bursting, uninvited, into my house and yelling that they didn’t like the way we’d decorated it and then offering to fix it as long as I paid them. I bristled immediately. And felt protective of the people in the #OzDOC room who had been so candidly and honestly sharing their thoughts.

This was a particularly delicate chat. Ashley had more than expertly navigated the sometimes tricky waters of a discussion about the place diabetes fits in our lives, and ended the chat with a question about burn out. It is a testament to the space that is #OzDOC to just how candid and honest people were in their responses.

So, the idea that someone tweeted something about how so many participants were clearly living with ‘out of control’ diabetes and then linked to her fee-for-service website, was not only inappropriate, but also insensitive, thoughtless and showed a true lack of understanding of what people with diabetes are dealing with.

My mother hen instinct kicked in. I had just laid myself bare as I used words that describe burn out to me, and others had as well. This was absolutely not the moment to promote a business and, at the same time, tell people they were doing a crappy job at managing their diabetes. And there is no place for judgement in this chat, especially from someone so clearly out-of-touch.

While my response was somewhat reflexive and probably could have done with a moment away from the keyboard before hitting the ‘tweet’ button, I don’t regret that I did it. And the responses from others in the chat suggested they too were feeling uncomfortable about the intrusion to the discussion.

I was furious that someone had so aggressively and judgementally invaded the safe space that has been so carefully cultivated. ‘Out of control’ diabetes? Really? Fuck off. (Actually, that was the response I wanted to type, but kept myself nice, so maybe I wasn’t as harsh as I thought.)

My concern about this intrusion was twofold. Primarily, I would hate for any person with diabetes to feel afraid of participating in any sort of peer-based activity for fear of being judged. We get enough of that outside of the spaces we create for ourselves and certainly shouldn’t have it forced upon us in our own groups.

But also, I would hate for any HCPs to think that they are not welcome to participate. They most certainly are, however the respect, lack of judgement and kindness expected by participants is expected of everyone. If they are unable to demonstrate that, stay away.

I’m not naming and shaming the person who tweeted last night. The tweet has been removed anyway. But, I would absolutely encourage them to come back next week and the week after and the week after that to learn. Watch what goes on in these chats, listen to what people are saying, understand the real-life sensitivities of diabetes.

And then, feel free to softly, softly join in. Respectfully ask questions (after asking if it is okay to ask questions) if there is something that needs clarifying. Gently share ideas that may be of benefit. But absolutely do not try to sell something. And check your judgement at the door.

no-judgement

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