Living with an invisible condition
posted by Research Admin 1 on 16 September 2019
Diabetes NZ, 9 September 2019
Teenager Samantha Williams, from Auckland, reflects on her T1D journey and talks about some of the prejudices she has experienced.
Here I am, still staring at my blank piece of paper wondering what to write, struggling to come up with the words I need to say. Usually I can’t stop typing, but for some reason the words just aren’t coming today but as I’ve learned in 12 years of having diabetes, you’ve just gotta keep trying until you get it so here it goes.
Most people don’t fully understand the challenges of living with a lifelong disease that most of the time is invisible to everyone around you. It’s like a part of you that is hidden or misunderstood all of the time. I think it’s hard not to feel alone and isolated when it’s not something that is necessarily visible to the people around you. Sometimes that’s a positive as it can be challenging living with diabetes and it’s often easier to hide the pain and pretend everything’s okay because in the end that’s less complicated than explaining to someone what’s really wrong. But other times you just wish that people understood why you’re in a bad mood, or why you’re absolutely exhausted and it’s only 12pm.
Type 1 diabetes comes with challenges and complications that most people wouldn’t expect or even think of to be honest. It has the capability to severely affect the lives of individuals, as well as the ones closest to them, and change the way they go about their day-to-day business. It’s a disease that although common, is still misunderstood by so many. And many of its victims are subject to harsh judgements and comments because of its similarities in name to type 2 diabetes.
Every day I realise how much I don’t know about this disease, how every day I seem to stumble upon a new surprise. Even after 12 years I still can’t get it right because it’s constantly changing.
I was diagnosed on 27 October 2006 at the age of five and I didn’t understand the implications of having type 1 diabetes. I was a kid who wanted to play with her friends at school and run around like any child does but instead I was in Starship Hospital wondering why I was being pricked and poked with needles and being woken up at 3am in the morning being told I had to eat right then. Even though it’s been 12 years I still remember that day, it’s one I don’t think I will ever forget. I was terrified and had no idea what was actually going on, other than that I was really sick. Little did I know that there were more challenges to be faced in the coming months and then years.
But somehow, I got through it. With the help of an incredibly supportive family who endured many battles with me in those early years (I did not adjust to injections very easily and put my family through hell), we carried on and eventually came through. Now I’m 17 years old, I’ve finished high school and am getting ready to start at Massey University in February. Type 1 diabetes has never stopped me from doing anything that I have wanted to, at times I’ve had to do them differently to some people but I’ve always been able to do them and that’s something that I’m so thankful for.
Sam shared her story in the Autumn 2019 issue of Diabetes Wellness magazine.