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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 four 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: May is Mental Health Month (in the US) so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?

One of the things I’ve found about living with diabetes is that the way I respond to certain situations is inconsistent. Some days, I’ll look at a rollercoaster CGM trace, shrug my shoulders and think ‘That’s diabetes!’ and move on. Other times, I’ll look at a similar rollercoaster CGM trace and burst into tears, wanting to curl up in the corner under a quilt, asking ‘Why? Why? WHY?’ while someone brings me a cup of tea and Lindt orange chocolate.

There are periods when my resilience stores are high and I can manage anything thrown at me, and other days where the smallest diabetes issue sends me into a spiral of despair. The unpredictability of diabetes is matched only by my own haphazard responses.

There do seem to be some things that do get me down pretty much any time they happen. When diabetes starts to affect my family, making my health issue theirs, I get very emotional and upset. I think it is probably a combination of sadness, guilt, anger and frustration that guarantees an emotional response.

The unknown of diabetes worries and scares me. I don’t think about it most of the time – I guess that is how I cope. The fears and anxiety are neatly packaged up and hidden away, brought out only in moments of weakness – or perhaps when my resilience is low.

Earlier this month, when I was an invited speaker at the Primary Care Diabetes Society of Australia (#PCDSAus) conference, and in the same session as me was Dr Christel Hendrieckx from the Australian Centre for Behavioural Research in Diabetes. Christel was very clear that clinicians need to consider diabetes and emotional health side by side as the two are undeniably connected.

I truly think that when we break it down, we can’t separate the two. When we live with a condition that is so ever-present; that we invest so much of our time and energy into managing; that we can’t put in a box when we are feeling over it and come back to it when we feel more equipped, it’s impossible for it to not impact emotionally.

We, all too often, draw a line with the physical on one side and the emotional on the other side. That line is terribly blurred – if it’s even there at all – when it comes to diabetes.

It’s day two 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.  Make sure you check out the list for today’s posts here.

Today’s prompt: Insulin and other diabetes medications and supplies can be costly.  In the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?  For those outside the US, is cost a concern?  Are there other factors such as accessibility or education that cause barriers to your diabetes care?  

Diabetes is an expensive condition with which to coexist. Every now and then, I tally my annual diabetes expenses, at which point, the reason for my frequent flyer status at the pharmacy becomes more than apparent. Between insulin, insulin pump consumables and blood glucose strips, it doesn’t take long for the costs to add up.

Then I add the fees to see diabetes-related HCPs. I choose to see all my HCPs privately, so there is a gap (out of pocket) cost for all these appointments. Fortunately, pathology is bulk-billed, so I don’t pay to have my A1c checked or for any other blood work.

Private health insurance (PHI) is a significant cost each year. We pay about $450 per month to cover the whole family for top hospital and extras cover. PHI means that every four years, the full cost of my insulin pump replacement is covered, and it also means a choice of doctors if we’re in hospital, subsidised stays at a private hospital, and we claim optical, dental and orthodontic each year, plus other things as well.

I wear CGM every day of the year, which adds about $4,000 per year to the tally.

It’s a lot of money. Without factoring in incidentals such as hypo treatments and other things that just seem to come up, my out-of-pocket expenses for diabetes (excluding health insurance) would be about $6,500 per year.

And yet, I feel oddly fortunate, because there are few surprises – or changes – each year when it comes to my medical expenses. I know how it will all play out in the family budget each year.

I know the prices that I pay for all my diabetes expenses are pretty much set, and that means I can plan for them.

I know that every time I walk into the pharmacy to fill an insulin prescription, I will hand over $38.80 for five 10ml vials of insulin. We are never at the mercy of Big Pharma’s arbitrary price hikes. (Last week’s announcement from Lilly of a 7.8 per cent increase on the cost of Humalog – after years of substantial increases – has left me reeling and astonished at how my American friends can afford to just survive with diabetes, let alone live or thrive…)

I know that my diabetes consumables will be the same price every time I order them thanks to the NDSS. The National Diabetes Services Scheme (NDSS) is celebrating 30 years this year – that’s 30 years of subsidised diabetes supplies for all people living with diabetes.

I know how much my doctor will charge me and I know the Medicare rebate. And I know that if I was unable to afford to see my doctors at their private offices, I’d have access to the free diabetes clinic at the tertiary hospital less than 10 minutes from my home, and a bulk billing GP of my choice.

I know that if I couldn’t afford private health insurance, my ability to buy insulin, diabetes supplies or see healthcare professionals would not be affected.

I know that there is no time that I will need to ration insulin doses. I know there will be no time that I cannot afford to see a doctor. I know my pharmacy will always be able to provide me with the supplies I need to live with diabetes and drive the devices I use to manage as best I can. I know I am not really limited by maximum rebate amounts or that if I need more BGL strips, I can get them.

And I also know – and acknowledge – the privilege that allows me to afford health insurance that pays for my insulin pump, and to self-fund CGM, and to see the endocrinologist of my choice privately.

I know there are many other Australians with diabetes who are not as fortunate.

The outcomes for Indigenous Australians are worse – far worse. Poorer Australians have poorer health outcomes. People living in remote areas often struggle to access decent, timely and appropriate healthcare. Australians from CALD backgrounds may not understand a new diagnosis or the treatment being prescribed which affects how they manage their health.

Our system here in Australia is not perfect and we should be continually striving to do better. But it is certainly better than in a lot of other places. The thing about diabetes is that, as many of us wrote yesterday, we are wrangling a health condition that likes surprising us. We often feel we are fighting our own bodies. We shouldn’t need to fight to afford our care – and our health – as well.

The cards that cover my diabetes – and other health – needs. (Oh – and a credit card for all the out-of-pocket expenses…)

The term ‘mansplaining’ has made its way into modern language – and with good reason.

But I’d like to get ‘diabsplaining’ in there, too. Recently, I’ve had a few diabplaining episodes that have left me shaking my head (and making up words…).

In all of these cases, the person doing the diabsplaining didn’t have diabetes. And yet, they felt that I needed their advice on how to live with, and how to feel about, the health condition that I’ve been managing for the last nineteen years.

I am always happy to speak about diabetes and answer any questions people have. (Provided, of course that people are polite and respectful.) But I don’t appreciate unsolicited advice and explanations, or someone thinking they know more about my diabetes than I know. (Spoiler alert: no one does.)

These are just some of the gems that have been fired in my direction recently:

‘You know, someone at my work has diabetes and they don’t seem to have all the things you have to manage it. Maybe you should try to simplify what you are doing. You don’t need all of those things.’

‘Diabetes is a really easy to manage condition if you just eat the right foods. Do you eat the right foods? Let me tell you the foods that are good for diabetes.’ 

‘You shouldn’t worry about diabetes. You look really healthy. There is no need for you to worry.’

‘Your preoccupation with how people speak about diabetes is ridiculous. There is no need to stress out about that. Do you think you really need to be so concerned about it? Instead, you should channel that energy into something else…’ (There was no suggestions as to what else I could channel all that wasted energy into…)

With diabetes being a health issue with considerable attention, it makes sense that people want to have a say. I am actually all for that! I think that we need to have people speaking about diabetes and hearing about it too.

But the best people to drive the conversation has to be people actually affected by diabetes – not those who only think they know about it, or have become armchair experts because they saw a Michael Mosley doco on the issue!

Plus, those of us who are living with diabetes who have concerns or fears or a focus on any particular issue, or are managing our diabetes in a certain way don’t need to be told that we are unnecessarily ‘overdoing it’ or could be doing it better.

So, how did I respond to these comments? Not as ferociously as I would like, to be honest. But equally, not in the manner in which I really would like. It’s bloody hard to keep myself nice when I feel that someone is trying to enlighten to me when I really just want them to shush. Because as arrogant as this makes me sound, the chance that someone has something new to tell me about how I could better think or deal with my diabetes is slim to none.

It’s actually very tiring being on the receiving end of these sorts of comments. I don’t always want to be in ‘diabetes education mode’. I don’t feel equipped sometime to have to defend the way I feel, or explain why I do something to keep myself as healthy as I can. Diabetes is hard enough without having to justify myself. And I don’t need anyone to explain the finer details of diabetes, especially when there are far more interesting things we could be talking about. Such as these awesome ninjabread cookie cutters.

 

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.

There’s a war going on and it’s getting very, very messy.

Fat or carbs? These are the two big hitters in our diets, and when it comes to diabetes, are demonised by some, celebrated by others. And it’s confusing to say the least.

It’s also incredibly polarising and some of the most brutal arguments I’ve seen online within the diabetes community are about the foods we choose to eat or the eating plans we choose to follow.

My own personal decision to eat a lower carb diet was met with almost comical responses. Both sides of the fence told me I was being an idiot, all of which I happily ignored and continued doing what I was doing. Because it was working for me and is none of anyone else’s business.

When we look at the science of food, it’s confusing. I don’t for a minute pretend to understand how things work, I really don’t. I know how different foods impact my glucose levels, I know foods that make me feel better and I know that I like to eat.

But having made all of those disclaimers, I am health (and food) literate and I do understand some aspects of the science. I understand the basics of the carbs versus fat argument. But mostly, I understand that choice needs to be the driving force, along with acknowledging no one way of eating will ever work for every person. (Because if that were true, we’d all just eat Nutella ALL the time, because it tastes so bloody good and if you believe their spin, it’s a health food! Don’t believe their spin.)

What I really don’t like about the debate though is the acrimony. It makes me uncomfortable when either side take to cheap shots or aggression. Exhibit A is in the form of a tweet which I’m not sharing, because its writer is selling diet books and I’ve no intention of giving her any publicity here. But the gist of her tweet was condemning dietary guidelines and slamming carbs because she doesn’t (and this is a direct quote) ‘want to be fat and diabetic’.

The tweeter managed to food shame, fat shame, stigmatise and judge – all in 140 characters. As well as get things wrong. There are plenty of people who do follow dietary guidelines and eat carbs, yet do not have diabetes and nor are they overweight.

I get that there is some real anger, particularly within the LCHF community because there is so little recognition of how eating in this way can, for some people, help manage weight, diabetes and overall health. And some feel cheated that LCHF is frequently not even presented or recommended as an option, instead ignored or claimed to be dangerous. I get that this is frustrating for people who have seen great results after adopting this sort of diet.

I’m actually one of those people. But I refuse to think for one minute that just because this is working for me that everyone else should do it, too. I’ve never subscribed to thinking that any aspect of diabetes management is one size fits all.

So, what’s the answer? Well, I’ve no idea really. Ever since taking an interest in different eating habits, I’ve been astounded at just how many new diets are released. Obviously some of them are more sound than others, but regardless, there are always new ideas out there.

Perhaps the answer is to be patient. The ‘in’ and guideline-approved way of eating changes every decade or so. Perhaps those who are cross that their chosen eating plan isn’t the plan de jour just need to wait a few years before it is. And then they can say ‘told you so’. At least, until it’s old hat and replaced by some other new trend.

This is the first of a couple of food/diet-related posts I have ready to go over the next few days. I’m really interested to hear what others have to say about what works/doesn’t and why. And also how people deal with the judgement and commentary that inevitable comes when we are talking about what we eat.

Brutal. That’s the way I’ve been describing my week. It’s been super busy and there is no hint that will change any time soon.

But there is so much stuff out there to read. Here’s just some of it…

CGM

Oh, did you hear? CGM is now funded for children and young people under the age of 21 who meet eligibility criteria. It’s been ALL OVER the interwebs, but for the most up-to-date info, go here!

(And yes, I know, people 21 and over need CGM and need support. This isn’t over yet…!)

A psychologist who knows diabetes? Yep!

A good psychologist is worth their weight in gold. A good psychologist who understands the impact of living with diabetes on our overall wellbeing is like a unicorn – rare and magical.

So, I was delighted when someone from my office who has been a Research Fellow with the ACBRD for a number of years came to tell me that she is starting a private psychology practice. Dr Adriana Ventura’s research has focused on the psychological, social and behavioural aspects of living with type 1 and type 2 diabetes.

Adriana understands that living with diabetes (and other chronic health conditions) can be challenging. And she understands that these challenges can make it tough to take care of our health the way we would like.

Details about Adriana’s practice can be found here. (Adriana works with adults and older adolescents – 16 years and over)

Really? REALLY?

Seems that we’ve all been doing diabetes wrong. That lancet thing that we joke about never changing? This is how you use it according to the pic accompanying a BBC Radio 2 tweet.

Apparently it is really hard to do some decent research. (And if the image wasn’t enough of a deterrent, the article looks shit too, so didn’t bother reading it.)

My maths teacher was right

So, as it turns out, I do use maths every single day. Diabetes has certainly put my algebra skills to good use!

This article from The Conversation is all about how an applied mathematician developed an algortithm to help treat diabetes. As you do.

Words that over-promise

I can’t remember the number of times I’ve heard that a diabetes cure is ‘just around the corner’ or any other version of ‘five years away’.

But how do these promises affect people living with health confitions? This article from Medivisor asks just that.

March for Health

While we were celebrating the CGM announcement on Saturday, I was very mindful that my US friends were getting ready to continue their battle for fair healthcare. March for Health was held across the US on 1 April calling for affordable access to quality health care for all people. I don’t know about you, but that doesn’t sound unreasonable to me.

Check out more at the website here.  

And this, by the way, is possibly one of my favourite promotional posters from the March.

Women’s Health Survey … Quick!!!

And while we’re talking women’s health…There are still a few days left to do the annual Jean Hailes Women’s Health Survey, which identifies gaps in current knowledge when it comes to women’s health.

Click here to do the survey.

College Diabetes Network

There are some really wonderful groups out there supporting people with diabetes, and my friend from the US, Mindy Bartleson emailed me with some really useful information about the College Diabetes Network (CDN). The Network empowers and connects young people with diabetes and their are CDN Chapters on college campuses across the US.

The Network is certainly US based, but some of the information will be relevant to those in Australia (and elsewhere). Their resources provide information about how to prepare for the transition from high school to college or university. Do have a look!

Information for students can be found here.  And information for parents can be found here.

Peanut butter cookies

I made these cookies and jeez were they delicious!

They are gluten free, which I know is important for many people. For me, I need cookies that take no more than 10 mins to mix together and then taste perfect. Honestly, they are possibly the best tasting biscuit/cookie I have ever made… and I bake a lot.

The recipe can be found here. (I used smooth peanut butter as the recipe suggests, but I reckon they would taste awesome with crunchy. Also, do pop the mixture in the freezer before trying to shape the cookies. The dough is mighty-soft and sticky, and this step helps to get the dough from the bowl onto your cookie tray. AND DON’T SKIP THE SALT ON TOP!! This is what ties it all together and makes the magic happen!)

And finally……

… a little New Yorker Cartoons funny, which may not be directed at diabetes, but boy it certainly shows how I feel most days living as a diabetes tech cyborg!

I’m still getting my head around the #HealtheVoicesAU conference – there was so much that happened over the event that it’s taking time to write about it all and really nut out what I took away from each session. (Previous posts here and here.)

When I looked at the program, I was probably most excited to hear from Nick Bowditch. I knew nothing about Nick other than what the program told us: He is the only person in Asia Pacific to have worked at Facebook and Twitter; he’s an entrepreneur who helps small businesses here and across the globe shape their online presence. And his personal health story is that Nick is a mental health advocate as someone who has lived with depression for many years.

I knew Nick’s talk would have lots to offer, and title of his talk that had me excited: ‘The Art of Storytelling’.

I’ve written before about why I love story tellers and story-telling. And telling my own story. It’s reading and hearing the stories of others with diabetes that helps put in context my own experiences. Others’ perspectives shape my own and I learn so much from how others deal with the clusterfuck that diabetes can be.

The first slide Nick showed us was of the wonderful Jamaa el-Fna in Marrakech. He told us how he spent an evening captivated in the square. There amongst the snake charmers and the men walking around with monkeys on leads and the little girls selling tissues and the vendors hawking fresh orange juice, were story tellers. And although he couldn’t understand a word they were saying, he was enthralled as they animatedly told their stories.

That’s the beauty and magic of a good story teller – you don’t necessarily need to understand the detail; just getting the gist of the tale is enough.

And then, Nick gave us the snapshot of his story. In a nutshell, he told us this:

Slide from @NickBowditch

It’s easy to make assumptions and think that you know what Nick might be living with if you see that list. But you’d probably be wrong. I know I certainly was. My initial ideas of what life must be like for Nick were turned on their heads as he put into context what each of the above aspects of his life actually means to him:

Slide from @NickBowditch

By turning our assumptions on their head and reframing how he lives with mental health conditions shows us that Nick is not ‘just coping’, he’s living. His words were: ‘These are not my defects. These are my superpowers.’ And it challenges us to reconsider our preconceived ideas. I know that those of us who speak about diabetes often challenge what others think.

The image of T1D being all about kids and needles and blood is not really what it’s about for me. And the far-too-easy idea that T2D is all about older, overweight, inactive people is wrong too.

When we tell our stories – and reframe the narrative – the truth comes out.

Possibly the most powerful thing Nick said was this: ‘Telling the truth is not brave. It’s easy. The hard thing is not being authentic.’ We’d come full circle back to the first speaker of the day who implored us to find authenticity in what we were saying. And it reminded me of why I have always been an advocate of having people with diabetes sharing their stories in any forum where people are talking diabetes: the legitimacy of lived experience cannot be found in any other way than actually having someone tell their story.

I see first-hand the power that having a person with a health condition stand alongside a healthcare professional and put into context the theory and research that they have just presented.

There is an art to storytelling. We do it every day that we tell our story. We do it every time we put words on a page for a blog post, or in a diary or in a letter, ot when we stand up and tell it like it is. Some do it far more elegantly and eloquently, but the things is; it doesn’t matter. As long as we’re authentic.

DISCLOSURE

Thanks to Janssen (the pharma arm of Johnson and Johnson) for covering my travel and accommodation costs to attend the #HealtheVoicesAU conference. There was no expectation by Janssen that I would write about the event and everything expressed here (and on Twitter Facebook and other social feeds) is mine and mine-alone! To read more, check out the conference hashtag, #HealtheVoicesAU, on the socials. 

A few people read this blog. I actually checked the stats just before, and was surprised to see that each day a significant number of people check in and read what I have to say.

So, given that people seem interested in what I have to write, I’ve decided I should take advantage of this. With this profile, I am going to do good for the world.   

Just so you know – because I’m all about disclosure – I’m a classically trained flute player. Also, I like to cook. And I’m quite good at air hockey. Also, I write some mindless crap a few days each week and publish it here, so that OBVIOUSLY qualifies me as MORE than suitable to give advice – any sort of advice I’d like, but specifically medical and nutrition advice. In fact, I’d argue that I am probably more qualified than most people who have gone to medical school, because they have been brainwashed by all the evidence and peer-reviewed journals they’ve been forced to study. I haven’t.

I think that it’s fair for me to advise that insulin is actually really poisonous. It’s dangerous and it’s dodgy. Doctors, of course, won’t tell you this. They want to keep you on insulin because they are in the pocket of Big Pharma, and like their holiday houses on the Peninsula, so they won’t tell you what they know.  

Really, you should all be off insulin and use air and water, and maybe some cinnamon, which is NATURAL and can be found in NATURE and is ORGANIC. Because NATURE’S NATURAL ORGANICS are health care. Medicine (such as insulin) is sick care.

Also – if you are ingesting grains, dairy, fruit, vegetables, sugar, protein, carbs, caffeine, flowers, condiments, oils, sauces and/or food (except organic kale) and drink (except organic kale juice), you should stop. Dietitians know this, but they won’t tell you that because they are in the pocket of Big Food and they want you to be sick so you’ll go to doctors who are in the pocket of Big Pharma.  

It’s the circle of life and everyone everywhere is trying to keep you sick. Okay? OKAY?????

And, finally, I’ve seen the way and realise now that vaccines are really dangerous and I wish that I’d never vaccinated my kid and will be cancelling my flu vax appointment for early next month. I’m trying to work out if I can actually somehow withdraw the vaccines I had injected into my kid last week so she doesn’t have those evil pollutants floating around her otherwise perfect self. Vaccines are full of toxins and heavy metals and evil pixies. Plus, vaccines cause frizzy hair, skin tags and bugs to fly into your mouth making you cough. Doctors know this, but won’t tell you because … well, you know why…

Also: kale. Because KALE, KALE, KALE, KALE, KALE!! (Must be organic.) 

I know. I sound like a lunatic, right?

Actually, I sound kinda like Pete Evans. To be honest, I didn’t watch Pete Evans’ interview last night. I’m not interested in seeing him being allowed to spruik his dangerous crap on a television station that employs him (poor form, Channel 7), plus he’s full of shit. Most importantly, we were watching ‘Shut Up and Sing’ in preparation for seeing the Dixie Chicks next Saturday night and needed to bring the kidlet up to speed with her political education. #TeachingMoment

But I did catch up online with some of his rubbish claims and am once again flabbergasted that people actually believe what he has to say and defend his right to say it.

If Pete Evans said ‘You know, it’s always best to eat fresh, healthy, in-season foods and as a chef, I’m going to share some recipes that will show you how to make an easy and healthy dinner’, I’d be ALL over it. I’d love that! I’d make his recipes and then Instagram the shit out of them. Because I care and share.

But that’s not what Pete Evans does. Pete Evans tells you that fluoride is bad and that babies should be fed bone broth and drink camel’s milk and that sunscreen is pointless. He blunders about in a way that is oddly (and frighteningly) similar to fools including Donald Trump and Pauline Hanson who seem to think that just because they have a public profile, they are qualified to give health advice.

And people believe their claims and then blindly follow them.

I (somewhat stupidly) had a look at Pete Evans’ Facebook page today and found this:

I’m not here to debate whether any people are taking medicines they maybe don’t need to take. I’ve no qualifications in health (real or imagined) and it’s not my place.

But this sort of meme is really damaging because it lacks any sophistication at all. It suggests that if a doctor puts you on any drug, they do not have your best interests at heart.

Could our HCPs be more holistic about the way they treat us? Maybe. Do some doctors over- and unnecessarily – prescribe drugs? Possibly. Do ALL doctors do this? Absolutely not. Most doctors – the vast majority, in fact – do not prescribe drugs that people don’t need. (I’ll just let the conspiracy theorists make their ‘ALL DOCTORS ARE IN THE POCKETS OF BIG PHARMA claims for a bit…Done? Okay, let’s move on.)

And, of course, I’m not stupid, and I know that when Evans puts up a meme like this on his Facebook page, he’s not really about people like me who need insulin to stay alive.

But the problem is that not everyone realises that.

Just last week, we heard another case of a child dying after his parents took him off insulin to treat his diabetes using ‘natural methods’. I still have people telling me to try <insert ridiculous and pointless herb> to treat my diabetes. There will always be people who just need a tiny push to stop the drugs they’ve been prescribed, because meds are bad, right? And natural is good, right? No. Not right.

Evans (and his ilk) speak in generalisations and sound bites that make sense to some people. But he fails to in any way address the intricacies of health. And he certainly has no concept of the complexities of living with a chronic health condition and how the drugs we take HELP keep us well (and alive).

This could be because he is a chef and doesn’t need to. And if he stayed being a chef and shut the fuck up about health, I wouldn’t be writing this blog post. Or getting into online arguments with members of his ‘tribe’ who keep offering me unsolicited and wrong medical advice*.

*Also – note to self: You are a fool for voluntarily falling down the rabbit hole and engaging with conspiracy theorists!

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