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