I am 11 years old and live on the Gold Coast. I was diagnosed with type 1 diabetes after a normal weekend. On the Sunday I had a really good thickshake with ice cream and all the toppings, but then sort of passed out on the couch, like I was super tired.

That night Mum and Dad noticed I’d lost some weight and on reflection thought about how much water I’d been drinking lately. The next day we saw a GP who tried two finger testers but got no number, so we were sent to the Emergency Department at Tweed Hospital and I was diagnosed there. My blood glucose was 44 and my ketones were high. I was in DKA. It was really difficult to get a line into my veins because I was really weak and so skinny. 

Since diagnosis, after a great week in hospital with heaps of training, I haven’t really looked back! I play Rugby League for Tugun Seahawks, I play kit drums in three bands at school and I have a very active social life!  

I have been using a pump for nearly three years. Using a pump means I don’t have to give myself a needle every time I want to eat. It also means I can be more independent from my parents. Now I know a bit more about how to use my pump I can spend time at friends’ houses and go on school camps, all without having to worry about the needles, safety of needles, and the injections.

At the moment I can have a pump because of Mum and Dad’s health insurance (which is in excess of $600 per month). Sometimes I worry about what kind of job I will get because if I don’t get a good job I won’t be able to afford the insurance I need for a pump.

If the government make accessing a pump more affordable I can grow up confident that I will have the option to choose the best care for myself, the care I want, whether it be needles or pump therapy. I also know lots of DiaBuddies who can’t afford insurance and don’t have a pump. It would be nice if they got access to one too.

Two weeks before my 30^th birthday I was diagnosed with type 1 diabetes.

I had been losing weight, felt very tired and could not seem to quench my thirst. I thought perhaps I had developed type 2 diabetes as it was during the COVID-19 lockdowns and I had been eating a lot of high carb food. But my blood test showed type 1 diabetes.

It has been a big learning curve. I have had to learn how to count carbs, know what is in the food I eat, and adjust my lifestyle to include giving upwards of four needles a day. 

Since July 2022 when the government began to subsidise the sensors, I have used a CGM to track my glucose. But I have never used a pump due to the price.

I know there is technology available that would be greatly beneficial to my daily life, but the cost of type 1 diabetes is high enough already without having to try and find money for devices. 

Not having affordable access to technology has placed a huge burden on my mental health as I am always thinking about how to manage my diabetes. This includes having to inject myself with insulin multiple times a day, even when out in public, and going to the restrooms to inject so I don’t offend anyone. 

If the government made access more affordable, I would feel so much more supported. It would help prevent long term effects of hyperglycaemia, which in turn would mean less trips to the hospital or my GP. It would also reduce the mental load and really help me avoid burnout and the need for psychological appointments.

I was diagnosed with type 1 diabetes in August 2023. It came as quite a surprise as I had no idea that adults could get diabetes.

It was very challenging at first because they couldn’t confirm immediately if I was type 1 or type 2, and that period of uncertainly felt like I was in limbo. Once they confirmed type 1, it was like being transported into a completely different world where everything had changed. I just had to accept it and move forward.

I was initially doing fingerpricks after I went home from the hospital but as I am very interested in technology I did a lot of research after my diagnosis and decided to try the Dexcom G6 continuous glucose monitoring (CGM) device. I received a trial directly from the Dexcom website and, for a couple of weeks, I wore both Dexcom and another CGM. Not having to scan with the Dexcom G6 made it an easy choice for me.

Being able to monitor my glucose levels is very helpful for managing my condition and the tech enthusiast in me loves having access to all the data a CGM provides. It’s amazing to be able to see what my body is doing in real-time, something that most people never ever think about. It allows me to learn so much more about my body than I ever would have otherwise. For example, seeing how simple activities like hanging the washing can affect my glucose is fascinating.

With CGM, I’ve been able to integrate all the data into a live display at home. We have three devices around the house showing my glucose levels. This setup allows my partner and I to monitor my levels without constantly looking at my phone which helps me avoid unnecessary distractions.

The data technology provides is very empowering. I’m fortunate to have been diagnosed with diabetes when access to modern technology was available. I’m very grateful to have the subsidies we have in Australia, but pump technology is expensive and still out of reach for many people.

As someone who is passionate about technology – I host a podcast interviewing people about science, technology, engineering and maths, and all the amazing and inspiring things that they do – I find it frustrating seeing new innovations being available overseas while they have yet to be approved in Australia.

It has been a very long journey.

I was initially diagnosed with gestational diabetes, but I mostly ignored it as my (infrequently tested) blood parameters did not show anything alarming.

I later moved to New Zealand but was carrying a lot of weight and regularly indulging in secret eating. It was at this point I needed to go on to tablets and they helped for a while. It wasn’t until 2009 when retinopathy started to rear its ugly head and the HbA1c climbed to an alarming 9 that I paid heed to what my symptoms were telling me.

I was under considerable personal and professional pressure at the time but more cognisant of where things were going wrong. I took the decision to go on to insulin injections and quite soon thereafter went on to receive intraocular injections in my eyes as well.

On my return to Australia I decided to travel my own path rather than follow all the well-meaning, but often stigmatising, advice thrown at me.

I clearly remember the day when I was watching television and my husband, a medical specialist, asked me why I was breathing so heavily. He wondered aloud as to whether it could be attributed to my excess weight.

I broke apart and yelled at him: “What would you know? All your medical know-how and patients with comorbidities should give you the kind of insight you need to be a husband to me and understand what goes on with me.”

He quietly came and sat in front of me, took my hands in his and simply said: “How can I help?”

Strange but these words changed my life… I told him I wanted to make my own decisions, design my own diet, and have my own exercise regime. His role would be to provide a shoulder to cry on, an ear to listen with, and to give advice, when asked.

My journey took a dramatic turn that day. Over the next few months I lost 15 kgs through walking and eating half portions (I would literally serve myself and then remove half of what I took). I had stomach pains but I kept myself too busy to care. Every kilo lost equated to a unit less of insulin. My HBA1c came down dramatically to 6.2. I then had an operation to remove the excess skin around my abdomen and lost another 6-7 kgs. The following year I lost another 10 kgs. Wow, 35 kgs lighter! I went from walking 1.6 kilometers in 30 minutes to 5.8 kilometers in an hour.

I have managed to keep most of the weight off but inevitably about five kilos has made it back.

Through my journey I discovered that my body reacts differently to different foods and my glucose levels vary not just with food intake, but the lack of it too. A reliable CGM would be invaluable as an aid to motivate and keep those glucose levels steady but the lack of funding makes it prohibitive.

CGM is something that is potentially lifesaving for people who want to manage their blood glucose to as near normal without risking hypoglycaemic episodes. The costs are currently prohibitive and there is no help for people with type 2 diabetes or people who deal with hypoglycaemia to gain access to these.

I can no longer closely monitor my glucose as my fingers are sore and the will to constantly check wanes. I often wake up with lows and have to take glucose which inevitably leads to me feeling unwell for the whole day.

Being able to access CGM would be huge. It would mean I could more closely monitor my glucose levels and titrate the insulin dose without needing to bother my GP, and function better overall.

I was diagnosed with brittle diabetes* shortly after my 8th birthday in 1981. I was bullied terribly all through school because I was the only child in the region with diabetes. I had to miss many days because of the condition and had an average of 60-70% attendance rate on all my report cards. 

At 21, I lost my job due to diabetes and a few other minor health issues, and was placed on the disability pension.  

At 25 I was told I needed an insulin pump otherwise I’d be lucky to see my 30s let alone 40; back then I was convinced there’d be a cure by the time I was 40. I had no way of affording a pump but was told I might find a health insurer that would cover it. I had to explain to the insurers the difference between an insulin pump and a blood glucose monitor! Needless to say, I only found a couple that were willing to help but the premiums were almost half of my pension, so I gave up and didn’t give it another thought. 

In 2005, when I was 32, I got a phone call from my Endocrinologist Dr Thornley telling me that Diabetes Australia NSW were donating a limited number of Dana insulin pumps. He applied on my behalf and got one for me.

Fast forward to 2011 and I was sitting in Dr Thornley’s office with my partner Chris (we’d only been together a few months) discussing options for getting a new pump as the five-year warranty was running out that year. I still couldn’t afford to buy one outright and assumed health insurance was still going to be difficult and too expensive.  

Dr Thornley turned to my partner and said: 

“Do you know how often that pump has saved Kylie’s life?”  

Chris looked at me and said: “We’re getting you health insurance.”  

For the first time in a very long time someone had put me and my health first. 

Dr Thornley recommended HCF and even though it was still almost a third of my pension (because they insisted on their highest-level hospital cover) we signed up and I spent the next 12 months hoping my old Dana pump would make it. 

I have been on an insulin pump and CGM ever since.  

For 30 years medical professionals often dismissed my case as too difficult or implied that I was merely lazy. Finally, last year, an independent medical review confirmed that the decision to put me on the disability pension because of diabetes all those years ago was justified. A great burden was lifted from my shoulders. 

With a combination of finally finding a good medical team who didn’t put me in the too hard basket, plus a few other major health improvements, I am sitting here at 51 looking forward to a very bright future. I now volunteer for WIRES, I am learning to play piano, and I have just been accepted into university to study Visual Arts. These were the things I wanted to do most when growing up. 

With National Diabetes Week coming up I suddenly remembered something that was long overdue, thanking my Endocrinologist Dr Thornley, and my excellent medical team which includes my GP, Heart Specialist, Respiratory and Sleep Specialist, Psychiatrist, Psychologist and Physiotherapist. As well Diabetes Australia NSW for donating a pump initially, and my partner Chris who has saved my life multiple times. 

Kylie Taylor 

*A term used to describe type 1 diabetes that is characterised by wide swings in blood glucose levels 

I was 11-years-old when I was diagnosed with type 1 diabetes. I remember feeling extremely tired and dehydrated. My vision was blurry, my head was in constant pain, and I had lost an immense amount of weight which I was ignorantly praised for.

My diagnosis came as a shock to the whole family as, to our knowledge, there was no history of type 1 diabetes in our bloodline. Yet, as I lay in the hospital emergency room with Blood Glucose Levels (BGLs) sitting upward of 20mmol/L, it was hard to refute. It was also very hard to accept.

Beyond being a prepubescent young girl facing the standard societal struggles each young person faces, I was dealing with a chronic illness and that meant I was different.

I felt like I stood out and I hated it. I tried to hide having type 1 diabetes. I just wanted to fit in and destroyed myself trying to do so.

The younger me wanted to cater to this unrealistic beauty standard I’d been told would solve all my problems. A standard I now know I cannot reach without destroying myself.

A beauty standard no one can reach – failed pancreas or not.

After years of self-neglect and misplaced shame, I’ve decided to start loving and accepting my body.

I wish someone could have told me as an 11-year-old or even as a 21-year-old: “You are unique, but you are not alone.”

In all my vulnerability and grown self-confidence, these images are me at my rawest living life unapologetically.

I hope this series of photos helps someone else out there. I hope you hear my voice. I hope you know how amazing you are.

Isabella Magee (@isabellagmagee), lives with type 1 diabetes

By Jenna Cantamessa

Mum was in the doctor’s room with me when I was diagnosed with diabetes and the support I had, and continue to have, from her is what helped me get through those first critical months. She collected all my supplies that day (and still does now). She sat down with me to carb count meals and was there to wipe away my tears of frustration at the condition. She did a lot of the research, and a lot of the worrying, while keeping a brave face. In the following years, after talking to many other parents of children living with type 1 diabetes, I have learnt that a brave face is so incredibly hard to keep. I remember her saying the night of my diagnosis when I was locked in the bathroom crying: “darling, I wish I could take this off you and have it myself”.

I’ve spoken to many mothers over the years, who are the primary caregivers of their child/children living with type 1 diabetes, and I’m in absolute awe of them. The physical, psychological, emotional, social, and financial toll that can be experienced by families caring for a child living with type 1 diabetes is extremely high.

^{All artwork by Jenna Cantamessa}

@beyondtype1 wrote an article that struck a cord with me, and this quote summed up the difficult truth:

“Mothers work around the clock to keep their children ALIVE. With no medical degrees. With no daily help from a doctor. I decide how much life-saving medicine to give my child all day, every day. And by the way, too much of this said life-saving medicine could kill them. Try to wrap your head around that! But then people look at my child and see this vibrant, healthy-looking child and they think I’m exaggerating, or worse, using my child’s condition to get attention. And so, more often than not, I just keep quiet, but at what cost? Keep quiet when I feel desperate, exhausted and scared about this huge responsibility that I didn’t get enough training for and that I never get a break from.”

I’ve been keeping in touch with a mum whose beautiful little girl was diagnosed at 11 months old, with no previous family history of type 1 diabetes, and her stories have opened my eyes to the challenges that diabetes poses on babies. Things such as diabetes devices on her little body, diaper changes that cause malfunctions with her devices, and the challenge of getting extra supplies subsidised due to meeting the capped amounts of CGMs etc quicker. The mother told me, “I dream of those newborn nights when I thought being awake throughout the night would soon be over, but it’s constant. I don’t know how she feels because she can’t communicate her feelings to me. The condition has changed our lives irrevocably. Not a single aspect of life remains the same.”

Another beautiful mum had both of her daughters, who are three years’ difference in age, diagnosed with type 1 diabetes just five days apart. Again, no family history and she is suddenly having to navigate diabetes with two children. I could go on. There are so many stories that reflect how life-changing type 1 diabetes is on a family, especially a mother.

It’s through speaking to the mums who live as carers of a child with type 1 diabetes that I’m incredibly grateful for my diagnosis at 19 years old. My mum didn’t have to experience this pain and stress every moment of the day because I was able to start managing it myself from the word go. But it is her support and unconditional love that has got me through.

Then there are the mums who live with type 1 diabetes themselves and have to manage motherhood with type 1 diabetes. Does that mean their own diabetes health takes a backseat? It must feel like you are constantly juggling so many balls at once, and more often than not you would put your child’s needs before your own.

In recent months I have been talking to friends who live with type 1 diabetes who are preparing for pregnancy and I’ve been in shock with how rigid and prepared a woman must be with diabetes management before they even consider trying to fall pregnant, let alone throughout pregnancy.

To all the mums reading this – you are incredible, and the absolute definition of a superwoman. 

By Jenna Cantamessa

Diabetes Australia contacted me last year to ask if I’d be the Australian Young Leader in Diabetes (YLD) for the International Diabetes  Federation’s two-year YLD program.

I didn’t have to think twice about the opportunity! I’ve been part of the online diabetes community for more than five years now and it has brought me incredible opportunities to connect with people living with diabetes around Australia and internationally.

Early in December last year,  YLD representatives including me travelled from 50 countries to Lisbon, Portugal, for the World Diabetes Congress and the YLD Training Summit.  The YLD cohort were incredible, and I can’t quite find the words to express how special it was to be in the same room together, communicating our lived experience with type 1 diabetes. We all share a common goal to improve the lives of people with diabetes.

Being in that room, I was overwhelmed with gratitude for the success that Australia had in 2022 within the diabetes space. In July, the Federal Government rolled out the Continuous Glucose Monitoring (CGM) and Flash Glucose Monitoring subsidy. From December 1, the Omnipod Dash subsidy was also available.  All Australians living with type 1 diabetes are eligible for the subsidies.

Other representatives from many countries who were with me in the room haven’t been so fortunate. Devastatingly, many low to middle income countries don’t have access to diabetes technology, with some lacking access to the bare necessities that keep those of us living with type 1 diabetes alive, such as insulin and basic glucose monitoring supplies. Access to these items should absolutely be a human right, but currently it isn’t.

Living with type 1 diabetes is like having a second full-time job. It requires constant attention, 24/7, with no breaks. “You’re quietly living through this daily grind that few people know about – it can be quite isolating,” said another YLD delegate, Alexander Zverev.  Type 1 diabetes is a complex condition that demands constant human manual input on a daily basis, (blood glucose level testing several times a day, multiple daily injections/pump cannula changes etc).

In Australia at the beginning of February there are 136,810 people living with type 1 diabetes, according to the National Diabetes Services Scheme map, and almost 1.3 million Australians are living with type 2 diabetes. More than 300 Australians develop diabetes every day. That’s one person every five minutes, as quoted by Diabetes Australia.

I was diagnosed with type 1 diabetes at 19 years of age and decided five years in that I wanted to contribute to the ever-growing online diabetes community as I felt strongly about giving this invisible disease a visual and voice.

I felt I could do this through digital art and words. People living with diabetes are tired of the many misconceptions and negative stigma attached to diabetes and hope that with education and awareness these misconceptions will eventually be eliminated.

The YLD Program saw us in sessions from early morning until evening over four days.

We heard from the International Diabetes Federation (IDF) President, discussed global diabetes initiatives, and engaged with pharmaceutical companies such as Novo Nordisk and Dexcom.

We heard directly from the World Health Organization (WHO) about the global diabetes commitments and formed discussions on how they were going to be implemented and evaluated.

We heard from members of the T1D Index and IDF Diabetes Atlas and how to best use these vital tools for data to drive advocacy efforts. It was great to be a part of a group of young advocates from across the globe working together and building networks of support to advance our advocacy and efforts within our countries.

Over the next two years I’ll be working with and supported by Diabetes Australia to deliver a series of projects both online and within Townsville. I can’t thank this instrumental organization enough for the work they do in our country for people living with diabetes.

Philip Wood describes himself as a ‘bicycle mechanic from Melbourne’. But there’s much more to him than that! From humble beginnings in a bike shop to working for some of the industry’s biggest brands, Phil has become one of the driving forces behind some of the bicycle industry leaders.

He shares with us one day in his life on tour with a professional cycling team while living with type 1 diabetes.

“Surely it can’t be time to wake up for work? My phone alarm is going off and it’s still dark outside.

It’s a ‘Low Glucose Warning’.

After a handful of black jellybeans and some milk, I try to get back to sleep. In four hours’ time I need to be up again, but my type 1 diabetes doesn’t have a day off and today it’s doing overtime.

Life with diabetes

I’m at the road cycling National Championships with the team. I used to be the one on the bike, racing, testing and working in the bicycle industry.

Then eight years ago, I felt very unwell, lethargic and had a thirst I couldn’t shake. That was when I was diagnosed with type 1 diabetes.

Back to my day, well it already started at 2am. Now I’m up and about officially.

Feeling a little washed out from the overnight event, it’s time for coffee and breakfast before heading out for a quick ride at some local mountain bike trails. My Freestyle Libre sensor says I’m sitting high after breakfast, but I head out anyway.

I have missed doing this! Although I’m not as slim as I was, not as fast and fit, to be honest this to me is as good as it gets, clearing my mind and connecting with the world…. Hang on, now I’m feeling warm, and sweatier than normal. Is this another low or am I that unfit? I better get back just to be safe.

Arriving at the event village, I grab another coffee and get to work. My day involves getting several bicycles ready before the race begins. I meticulously check over maintenance and ensure the riders won’t have any problems so they can achieve their own goals.

As the race begins, I hop in the team support vehicle along with spare wheels and bikes to follow the riders. Race radio lets me know if there are problems or riders have a mechanical issue I need to deal with on the race.

After a relatively incident free event, it’s time to return to our accommodation to prepare for the next day of events. Bikes need to be washed, degreased, checked, serviced and fixed from crashes in today’s race. This will continue into the night and I am running out of light… and oh yeah, I must eat! I didn’t get to lunch, no wonder I’m hungry and feeling faint, almost a tunnel vision is happening.

Being on tour is pretty good. Our team assistants don’t just take care of the riders, they also cook for the other staff. This means I eat like a cyclist on tour, lots of carbs, lots of fuel, which doesn’t help the weight either. I’m a carb counter, and I really like routine, it makes it easier for me to plan and stay on top of my diabetes. I can’t wait to get home to some routine.

Back to work. My headphones are in listening to a podcast and into the night we go. My CGM sensor is going off saying I’m high – time to correct.

A couple hours later, all the race bikes are looking good with new tyres and lubed chains. They’re finally ready for the next day’s road race.

Time for a shower and bed to do this all again tomorrow. I check my blood glucose levels, correct with short acting insulin and get ready for the long lasting. As I exercised today and was a bit low last night, I decide to run less than normal to be safe.

I’m pretty lucky. For me this is a standard day. Although my routine is out the window, I get to work with something I’m passionate about. This sport has defined me, not type 1 diabetes.

I can’t ignore diabetes though, it’s part of my life. Always there like an undertow in the ocean, and my goodness it’s exhausting.

Being diagnosed changed my life, I’m more alert and aware of my body than I ever have been before and I’m grateful for that. On the other hand, life is more complicated – I have a little more to deal with each day, and exercise has become harder to do. I will get back there, just not yet.

I need to figure it out and get a better routine in my days. Some days I’m the hammer and nail my diabetes management, other days I’m the nail getting hammered by my glucose levels. The best part of it is, this is Thursday, and I get a new shot to nail it tomorrow.”

I have been living with Type 1 Diabetes for 53 years and can say that it is a condition that you can NEVER forget about.

I was diagnosed in my final year of university when I was called into the army and then to Vietnam. The medical examination required prior discovered my diabetes. I was very mentally distressed as there had been no diabetes in my family.

I was fortunate that I had always worked in tertiary education and so usually had quite regular daily routines. I was always aware that when I had to give a lecture I made sure that I had enough carbs to deal with the mental and physical aspects of this task.

I did find it mentally challenging when I was required to attend on campus breakfast staff meetings. I had to travel to the campus and inject while sitting around the meeting table with my fellow colleagues. Sometimes disapproving glances were given or comments made if I selected a small piece of a pastry rather than a large piece of ‘French toast’. The assumption being that the toast was better for diabetes than puff pastry.

On a couple of occasions when I had an unexpected hypo at work, I was usually angry at my feeling of failure in controlling the condition. If had severe overnight hypos mostly I still went to work because I felt that a day’s sick leave would be an admission that I was failing to manage my diabetes.

Now that I am retired, I mentally began to unravel from the demands of the condition. All the care with controlling blood sugars over the 50 years never makes you ‘well’.

I am seeing a psychologist now which I has helped me unpack a lot of issues.

Over the decades the support for diabetes management has varied greatly. I had some really good diabetes educators, and some I wasn’t very happy with.
I currently have a great medical team and my wife has always supported me.

In summary, after all these years the technology available to manage the condition has improved enormously but mentally it is still a daily task to make decisions about how much to eat, how much exercise to do, how then this will affect the blood glucose levels. It is a condition which results in you having a mental cage inside. It is very difficult to make spontaneous decisions about what to do each day of my life.

Mentally it NEVER STOPS.

By Geoffery Roberts