Diabetes Advocacy

The Invisibility of Type 1 Diabetes

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Yesterday I shared Catherine’s story. One of the many type 1 diabetes parents dealing with, well, everything that you would expect (and more) from a young child with type 1 diabetes. A Continuous Glucose Monitor would be a massive relief for Catherine and her daughter, and would change their lives.

Seeing Catherine’s story on television, and the discussions that followed at home simply reminded me of just how invisible diabetes is. Not enough people are aware of what people with type 1 diabetes go through in order to manage their condition. People simply don’t see a lot of the aspects that we deal with in order to manage this disease. And our media certainly don’t give it a lot of attention, either.

Our media here in Australia spend a lot of time focussing on those “lifestyle” factors that may cause type 2 diabetes, in some cases. Which is fine. These are all serious issues, which can be prevented. I’m all for that. However, it just seems that I always hear about how we need to lose weight, how we need to eat less sugar, how we need to eat more fruit and veg, and how we need to exercise more. How this is an epidemic that will destroy the world by the year 2030. Okay, maybe I’m exaggerating there. But Mum could even recall being asked if I was overweight after telling an aquaintance about my diabetes a few years ago. It just goes to show how little awareness there is of type 1 diabetes out there.

I’m not blaming anyone for this. I’m simply stating a fact. There’s little awareness of type 1 diabetes out there because it’s simply an invisible disease. It’s easy to spot things like excess weight, unhealthy food choices and lifestyles that are lacking physical activity in the world. It’s not easy, however, to spot things like glucose monitoring, carb counting and insulin injections. It’s not easy to spot sleep deprivation, frustration and stress from dealing with, and worrying about type 1 diabetes. It’s not easy to spot parents who have had to take time away from work in order to properly deal with a type 1 diabetes diagnosis. It’s not easy to spot parents concerned about how their child, and school, will cope with type 1 diabetes.

I say that we do a pretty good job of keeping it together when we’re out there among the rest of the world. We’re pretty strong people, you know.

And that’s where Catherine’s story comes in. She did a fantastic job of advocating for all of us type 1s, and helping to shed some light on the issues that we have to deal with behind closed doors.

I can only hope that this media attention will help deliver technology that will change the lives of many young families in Australia dealing with type 1 diabetes, and help make this disease a little less invisible.

I almost forgot my #DOCtober photo yesterday, so my last minute photo idea at 9pm was to change my Lancet!

https://instagram.com/p/8xzm_Mg_en/

 

Diabetes Pressures Without CGM Subsidies

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I was rather touched by an awesome type 1 Mum who spoke out about Continuous Glucose Monitors here in Australia on last night’s episode of Q and A.

Aussie Type 1 Mum Catherine asked Ken Wyatt, our Minister for Health, when Continuous Glucose Monitors would be subsidised by the Australian Government and hence bringing us into line with other countries.

She noted that the cost of a Continuous Glucose Monitor here in Australia was $5,000 per year, which was considerably less than the costs of looking after people with diabetes who are hospitalised. During a one week trial last year, a Continuous Glucose Monitor saved Catherine’s daughter in three instances where her blood glucose levels were dangerously low and could have resulted in hospitalisation.

Catherine told us that she checked her daughter’s blood glucose levels every two hours. She was often sleep deprived from managing her daughter’s type 1 diabetes throughout the night. Diabetes kept her awake for eight hours last week, in an instance where she was unable to get her daughter’s blood glucose to rise above 4mmol/L.

As a single parent, Catherine feels the financial pressures of type 1 diabetes. She cannot afford to work part time, or to stay at home with her daughter. A Continuous Glucose Monitor would allow Catherine to keep an eye on her daughter’s blood sugar levels remotely, and reduce a lot of the stress in her life.

As for the reponse given by the politician on the program, it was the typical response given by a politician. Wishy washy xtatements implying concern and high regard for the issue, but nothing committal.

I can relate to wanting to keep a close eye on blood glucose levels. I will test up to 10 times on most days, just to make sure I’m not having too many nasty hypos or being too high. There are nights where I so badly want to test in the middle of the night to make sure I don’t end up too high. And I often hate myself the next morning for succumbing to my exhaustion and not doing so when I see a high blood glucose level. And I don’t earn a lot of money, either. At the moment, a Continuous Glucose Monitor is a luxury that I simply cannot afford. When I’m paying the bill at the Chemist, I often think of all the other things that I would rather have spent that money on.

Catherine, you’re not alone. Thankyou for sharing your story, and for bringing this issue in front of our leaders, and the Australian public. Well done, type 1 Mum.

Why Are Our Obesity Campaigns So “Nanny” Like?

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Yesterday, October 11, was World Obesity Day (and if you’re in the US or the UK, then technically it’s still World Obesity Day).

Obesity is an epidemic. The World Health Organisation estimated that the prevalance of obesity worldwide increased from 11.5% of adults in 2010 to 13% of adults in 2014.

Obesity can lead to type 2 diabetes in some, but not all cases. Essentially, people could have to deal with some of the things that I write about in this blog as a consequence of being obese.

And on World Obesity Day, we are being asked to call on governments to act in order to meet our target of halting obesity to 2010 levels by the year 2025.

Here in Australia, we have had many campaigns over the years to tackle obesity. Most recently, we’ve had the Live Lighter campaign. You know, the one with that lovely visual of “the toxic fat inside your body that grows around your vital organs.”

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Behind that confronting visual that you see on the TV, there’s also a bright and well meaning website full of advice to encourage us to live healthier lifestyles.

We’ve also had the Rethink Sugary Drink campaign, which literally presents to us the amount of sugar in soft drinks, juices, energy drinks and so on. Which isn’t a bad idea either.

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One honest flaw that I find in our campaigns here in Australia is the fact that they come across too “nanny” like. In all honesty, watching those ads seemingly telling me “not to have a single sip of soft drink” makes me more inclined to do it for the sake of rebellion. Try telling your kid that he can’t have that toy he picked up off of the shelf. He’ll probably be more likely to chuck a tentrum in the checkout queue than if you hadn’t said anything.

Then there’s the scare tactics and horror stories, like the image of the toxic fat. Scaring people is not okay in my book. Blaming and shaming people is not okay in my book. And employing these tactics does nothing to motivate the people who need it the most.

At the end of the day, the decisions on what we eat and drink are ours. It’s good to have the facts, and the statistics there. But it’s up to us, the consumers, to figure out for ourselves that an excess of unhealthy lifestyle choices can harm us. And that’s what our campaigns are missing. Believeability. Patient voices. Real, first hand experiences and stories that will appeal to me, the average Australian. That will help me to come to these conclusions on my own. To seek out those helpful websites on my own. So today, I will get the ball rolling.

I’m Frank, and I am a person with diabetes. I am essentially living with a disease that in some cases is a consequence of being overweight. It’s my job to keep my blood sugar levels between 4 and 8 every day. This means pricking my finger as much as 10 times a day. This means sometimes waking up in the middle of the night to make sure that I’m not too high or too low. I need to think about every piece of food that I put into my mouth. I need to think about every activity that I plan on doing. It plays a rollercoaster on my emotions. And if not managed properly, it could impact on the quality of my life.

I wouldn’t wish diabetes on anyone. I couldn’t do anything to prevent my diabetes, but perhaps you can.

You can also read the International Diabetes Federation’s statement on World Obesity Day here.

How Can We Change Attitudes to Glucose Monitoring With Limited Subsidies?

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I recently completed the yourSAY (Self-management And You) study, where I was invited to give my insights into diabetes self management and glucose monitoring behaviour here in Australia. As I was answering the questions, it became evident to me that the survey was trying to hone in on people’s attitudes and behaviour towards blood glucose monitoring.

One of the survey questions asked me to identify when I would check my blood glucose levels. Would I check when I wake up? Before meals? 2 hours after meals? Before bed? When I feel unwell? When I feel my blood glucose might be high or low? Before I drive a motor vehicle? Before I exercise? During the night? Or “just to check?” Naturally, I ticked all of the boxes.

If you’re a long time reader of this blog, you’ll know how strongly I feel about blood glucose monitoring. How it helps me to feel grounded and in control over my diabetes. How it gives me a sense of certainty, and peace of mind over this rollercoaster of a disease. And how lost I would feel about it. I have never, ever needed any motivation to check my blood glucose levels in the years that I have been living with diabetes. But as I was completing this survey, it became apparent to me that many people might not be as motivated to do so (no judgement either way).

I might be wrong, but it seemed to me that this survey might have an end view of encouraging people with diabetes to check their blood glucose levels more often. And when I think of this issue, one thing comes to mind. 

How am I supposed to check my blood sugar levels that often when our test strip subsidies here in Australia are so limited? How am I supposed to check my blood sugar levels when I get behind the wheel, when I exercise, when I feel unwell, before a meal, after a meal, when I feel low, when I feel high, when I’m unsure and during the night – when our National Diabetes Services Scheme only subsidises 5 blood glucose tests a day? How am I supposed to check my blood sugar levels when I am being told that I consume too many diabetes supplies? (You can read more about this in the column I wrote for Insulin Nation in July).

If this is indeed the end game that our diabetes regulatory bodies are seeking, then surely the sensible approach would be to re-evaluate our healthcare policies.

I must say that completing the yourSAY survey was rather stimulating. It certainly made me reflect on my diabetes management strategies here in Australia, and I’ll be sharing some more of my thoughts here in the days to come.

If you are a person with diabetes living in Australia, you can complete the yourSAY survey by visiting yoursay.org.au.

Diabetes Horror Stories in the Media

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Last night’s episode of 7.30 was rather confronting with some of the harsh realities of diabetes in Australia. We were introduced to one of Australia’s many diabetes “hotspots,” Blacktown in New South Wales. We were told that 40% of patient blood tests in the Blacktown Hospital emergency room showed diabetes. One third of those patients were unaware that they had diabetes, and another third were pre-diabetic.

We were introduced to a woman who ate her way to type 2 diabetes with junk food. We were told by the CEO of Diabetes Australia that one quarter to one third of hospital beds in Australia were filled with people suffering from diabetes complications. And we were introduced to an elderly woman who thought she had reasonable control of her blood sugar levels, only to be told by doctors that she needed to have her foot amputated.

Honestly, I just feel torn when I see these diabetes horror stories in the media.

Yesterday I wrote about how strongly I feel about not seeing the people around me develop diabetes. And how I am all for doing my bit to help prevent new cases of diabetes.

And then I see stories in the media like the one I saw last night. Stories that leave me stunned. Stories that leave me fearful. Stories that make me want to find a corner and curl up into a ball.

It doesn’t matter how average, how decent or how good of a job I feel like I’m doing. I see stories like these and all of that work is reduced to shreds. I’m beating myself up again. I’m thinking about all of the bad decisions I’ve made. I’m thinking about all of the potential damage I’ve done to my body. I wonder if I will be one of those diabetes horror stories, one day. And I wonder if there’s any point in trying.

But these stories are true. They do happen. Is it fair for me to attack them, or to pretend that they don’t happen in real life? I don’t know.

I guess all I’m trying to say is that there are people watching these stories who are already living with diabetes. Some of the people seeing these stories are trying their very hardest to manage, and stay on top of this rollercoaster of a disease. And horror stories like these don’t give them much of an outlook, or motivation to keep going.

Prevention is important. But support and encouragement for those already living with this disease is equally important, too.

The transcript from last night’s report on the 7.30 program is here. You might be able to watch the report too, depending on geography restrictions.