For National Diabetes Week 2022, we caught up with Erin, who was diagnosed with Type One Diabetes when she was 5 years old. This year the week is focusing on challenging diabetes related stigma.
Content note: this content may cause distress for readers. If you feel distressed after reading, please refer to the information about support options at the bottom of the page.
Can you tell me a bit about your experience with Type One Diabetes?
I was diagnosed with Type One Diabetes when I was 5 years old. I barely remember a time when I didn’t have diabetes—constant finger picks, needles, and hospital visits have been such a significant part of my life for the last 18 years it feels odd to think of a time when I didn’t have to do it.
My diagnosis story isn’t unique—I was sick for weeks, and if it wasn’t for my mum realising that the dehydration, weight loss, and nightmares weren’t normal, I wouldn’t be here today.
When you’re first diagnosed with Type One Diabetes, the doctors use the analogy of a rollercoaster—and I honestly can’t think of a better description.
From the moment I received my diagnosis my life has been constantly up and down. Some days are good and I feel like everyone else—just with the bonus of a life-saving insulin pump attached to my stomach—while other days are spent in hospital, feeling like death warmed up.
While I’ve been lucky enough to be surrounded by people who have always helped me put my health first, the constant stress of wondering simple questions like “Will I wake up in the morning? Am I going to make it 50? Can I have children? Should I have children?” can be totally consuming. It’s a battle to get through life as it is, then you add the pressure of living a chronic and deadly illness and you can understand why Type One Diabetics get frustrated with not only the illness itself but those who just don’t get it. But unless you live with it, you won’t get it.
What stigma have you seen around Type One and have you experienced any yourself?
I think every Type One Diabetic has experienced some form of stigma. Personally, in the last 18 years, I’ve experienced blame and shame for having diabetes, I’ve received passing derogatory comments when I’ve done finger-pricks at work or in public and I’ve been judged for taking the basic steps to care for my illness and stay alive.
I’ve been told “but you don’t look fat”, I’ve been told to suck it up and get over it when having a hypo, I’ve been made fun of for not being able to eat birthday cake, I’ve been blamed for eating too much sugar when I was younger…the list goes on.
But my first vivid memory of stigma is from not long after I was diagnosed. I was playing netball and I remember trying to partner up with a girl the same age as me but she kept running away and yelling at me not to touch her, that I was gross and I would make her sick. Her grandmother had told her Type One Diabetes was contagious. It wasn’t their fault they didn’t know that this is absolutely not the case, but it still hurt.
If it wasn’t for my amazing support network I probably would have hidden my illness a lot more, which can cause health complications later in life—especially if you stop injecting insulin due to shame or fear of judgment. I’m so thankful for my family and friends—and while they might not ever 100% understand what I’m going through, at least they’re always willing to listen.
Why is it important to raise awareness about the condition?
Anyone who lives with an invisible chronic illness just wants people to understand that while they may look fine and they may be functioning on a normal level, there is a battle happening underneath their skin. We get tired quicker, we have a weaker immune system and we’re more likely to develop health complications with eyes, kidneys, nerves, and to top it all off, chronic depression.
Some days are good and some days are really, really bad, but because people don’t see it, they don’t recongise the implications of living with Type One Diabetes and that’s where stigma and shame come from.
It’s just like mental illness—and while it’s the fantastic conversation around depression and anxiety is changing after years of advocacy, the same understanding and empathy need to be applied to those living with diabetes. Because to be blunt—it’s bloody hard.
Do you have any advice you would like to give other women who are going through the same experience?
Take each day as it comes. You never know what curve ball you’re going to get tomorrow, whether it’s diabetes or life in general, so don’t be hard on yourself. You’re only human and you need to remember that.
Beyond Blue — 1300 22 4636
Lifeline — 13 11 14