My invisible chronic illness isn’t a trend – it’s life or death
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I have type one diabetes and I’m only saying this once: continuous blood glucose monitors aren’t trendy.
They’re not a toy. They’re not a way for you to hold yourself accountable to your health goals. They are life-saving devices.
But let’s rewind a little – they say that all press is good press, but a few weeks ago I read a headline that made my heart stop and my blood begin to boil.
“The Great Blood Sugar Boom: Is Everyone Regulating Glucose Without Me?”. It sounds like an innocent enough headline – an article exploring the latest wellness trend of monitoring blood sugar levels to unlock new insights about the body and the mind.
But as a type one diabetic, the moment I saw it, I saw red.
I saw 20 years of struggling to explain why I needed to prick my finger with a needle, of having to monitor my glucose levels, of being judged and misunderstood.
Before I go any further, I want to make one thing clear: I truly believe that if people need these devices or medication for health reasons not related to diabetes (like people who have prediabetes), they should have full access. But for those who want to ‘optimise’ their health by using unneeded (and very expensive) medical technology, I have one question – are you okay?
Because living with diabetes isn’t cool. It’s not trendy. It’s the complete and utter opposite.
Let me break it down.
On average, I test my blood glucose eight times a day.
That’s when I wake up, before I eat, after I eat, before and after I exercise, before I drive, before I sleep, and sometimes just because I can’t tell if I’m dizzy because the only liquid I’ve had is coffee or because my blood sugar is dropping below a safe level.
That’s just on a good day. On a bad day, double it.
Add in the fact that – as you would expect – self-mutilating yourself by driving a needle into your skin hurts, and you would begin to wonder why someone would do this. But, as someone who needs to monitor her blood sugar levels for health reasons, I don’t have a choice.
Naturally, the human body can manage blood sugars on its own thanks to the pancreas – a large gland in the stomach that makes insulin. But at the age of five, my immune system attacked my pancreas and destroyed it, leaving me without the magical hormone. The result is glucose (a type of sugar) can’t enter my body’s cells, where it’s transformed into energy. Instead, the glucose builds up in my body and – if left untreated – can be deadly.
Me, just a year before my diagnosis.
It’s why I’m insulin dependent and why I need to monitor my glucose levels throughout the day to ensure they stay in the recommended range – which in turn ensures that I have a reasonable quality of life (I can hear other diabetics chuckling at this sentence).
Now, I choose not to use a CGM, but that doesn’t mean that seeing people using the devices for non-diabetes-related purposes doesn’t grind my gears. Usually ‘worn’ (see: inserted with a needle) on the upper arm, the small device tracks blood sugars around the clock and shares the data with insulin pumps and phones every few minutes. For many, this incredible technology has improved their health tremendously, but it’s also incredibly expensive to use.
While it is subsidised, if the user isn’t covered by the National Diabetes Service Scheme (NDSS), it works out to be about $5000 per year to use a CGM. And with the need to replace the sensor every six to 14 days, not only is it a lot of hassle, but it’s also a lot of money.
But as a hot new gadget among fitness enthusiasts, the concern among the diabetes community is that the CGM and bloody glucose monitors will be harder to find in chemists or order from the NDSS – and if someone with a functioning pancreas can afford to buy them and is choosing to buy them, it means someone genuinely in need is missing out.
Add in the fact that attempting to manipulate your blood sugar superficially and without a doctor’s guidance is dangerous, and you can see why there are endless health concerns for everyone involved.
There are many mental health downsides (and trust me, I know about this one).
I mentioned earlier that I don’t use a CGM. I tried it for a month in 2023, and I experienced both the upsides (my blood sugar was in range – mostly!) and downsides (I began to fixate on my blood sugars) very quickly.
I would watch as my glucose levels went up and down throughout the day, and anxiety quickly took over every thought surrounding my diabetes. Would I need more carbohydrates to make it through the day? I want to go for a walk, do I need to eat? Will this be enough to keep me stable through my next meeting?
Choosing to eat something with sugar like a bar of chocolate (which is something I can do in moderation), would send me into a tailspin. I wanted the food, but watching the fluctuations was like watching an out-of-control rollercoaster go at full speed. Logically I knew if I gave myself the correct amount of insulin (as I had done for years) I would be fine. But the joy was taken out of eating. I wasn’t listening to my body and its needs like I used to.
And as someone who does struggle with food at times, it was way too much. Between the sudden urge to be more rigid with my food, my exercise routine changing and the ability to track everything in even more detail than I already do (counting carbohydrates and sugar in everything I eat is now second nature), my mental health was at one of the lowest points it’s been.
And this doesn’t just apply to diabetics. As the health and wellness fields expand more to integrate medical technology like CGMs – things that track habits and foods – what about those living with diagnosed and un-diagnosed disordered eating? The promotion of using blood glucose monitors as a tool to see how eating a banana affects you (spoiler alert: it’s a fruit with sugar and carbs so your blood sugar will likely spike) is adding another layer for them to navigate.
Again, for some people, devices like CGMs are amazing. But if you need to think about it, why would you choose to use something that tracks everything you eat and how it impacts your body?
I would love to not have to think about everything I put into my mouth. I would love to have a meal without thinking about it. But this is something I will have to think about for the rest of my life.
This technology is literally life and death – and many diabetics have been made to feel ‘othered’ for using it.
Diabetes is an invisible illness but for many years, my mum and I had to battle stigma surrounding my blood glucose monitor and insulin pump. Many times, during my childhood, one of us would receive a snarky “Do you have to do that here?” while testing my blood sugar, a confused “Is that an iPod?” when it came to my insulin pump, or my personal favourite: “I could never do that”.
Now we just tell people “Yes”, “No, it’s a medical device” and “If you wanted to live you would.” But it’s hard to put into words how life-altering these devices are and after years of having to explain the scars and the machine attached to my body, suddenly seeing them become trendy…hurts.
It hurts when I see perfectly (and extremely) fit, healthy young people choosing to test their blood glucose because a ‘doctor’ told them that they should track their glucose when I think of my friends blindly shoving lollies in their mouths at 3 am because their CGM altered them to a major glucose drop. It hurts because I know that if they didn’t have access to that device, they might not have woken up that morning.
It hurts when I know – if it’s something you feel you need to do – that reducing blood sugar spikes is as easy as (shocking) eating less processed sugar, eating a more balanced diet (with more protein), and being physically active. It’s that easy because you have. A. Working. Pancreas.
Me, in primary school advocating for JDRF Australia.
Using blood glucose monitoring tools isn’t like cutting your hair into a bob or getting glazed donut nails because you saw it on TikTok. It’s so much more to so many people.
The one silver lining in all this? At least it’s sparking conversations and bringing awareness to the technology and what it does. I hope it means that there’s one less child out there having to explain to a teacher that their pump isn’t a mobile phone, or a teenager worried about hiding the CGM on their arm. At least they might not feel ‘othered’ like I did growing up.
Who knows – research into the use of CGMs might prove me wrong. There might be some incredible health benefits for people tracking their blood glucose. But for now, why live like you have an illness, and make it harder for those that do? For us, it’s a complex condition, not a game.
