Living with Type 1 Diabetes
With one in ten people living with diabetes worldwide and fifty per cent of those people being undiagnosed, one of the key things we can do to raise awareness is simply by talking about it more. We spoke to a friend of Youswim's, Carmen Azzopardi, aka @zigs_mom, who has been living with type-1 diabetes for three years after being diagnosed in the middle of 2020. Carmen talks to us about her diagnosis, the reality of living with a chronic illness and the importance of raising awareness.
By Chelsea Covington, Carmen Azzopardi
In 2020, at 25, you were diagnosed with Type 1 diabetes. What did the diagnosis process look like, and how has it changed how you live day-to-day?
So, my diagnosis story actually started around September 2019 – when I started losing weight rapidly and became excessively thirsty. Unfortunately, I didn't recognise that this was anything to be worried about at the time as I'd recently stopped drinking alcohol and started working out at the gym regularly, so I put the changes I was experiencing down to those things. A few months on, I started urinating very frequently (like seven times a night) and on top of the weight loss and thirst (I was drinking at least 5L of water every day – no joke!) I also started to experience crazy hunger, get heavy periods frequently and feel constant pins and needles and numbness in my fingertips. In March 2020, we all went into our first Sydney lockdown, so it wasn't until then that I was really alone with my symptoms. By this point, I had lost around 15kgs and things were rapidly declining. Fast forward to May 2020, I ended up heading to the GP a week after my 25th birthday to get my hormones checked. At this point, I was bleeding for five weeks straight, so I assumed I had some sort of hormonal imbalance. While I was at the doctor, I mentioned my other symptoms. She checked my blood glucose levels on a glucometer (the first time I'd ever seen one!) and then sent me to the ER, where I spent the whole night undergoing tests. The next day, I was diagnosed with Type 1 Diabetes, and I think it took me a couple of months to even believe that the diagnosis was true.
My disease has changed everything about my day-to-day life; it's changed my relationship with food and sleep drastically. It's changed my understanding of my mortality on a macro scale and a micro scale, and it heavily impacts every daily decision I make.
There are a few ways to manage diabetes, and you talk about your experience with a continuous glucose monitor (CGM) and insulin pen on your TikTok, as well as sharing videos of you using these devices.
Why do you think it's important to be open with your followers about your illness and the ways you have found to manage it?
When I was first diagnosed, I didn't know anyone in my life living with T1D. No one is diabetic in my family, and I felt really alone and isolated. I turned to social media to learn more about it and ended up finding some really helpful T1D creators (some of whom I'm great friends with now!) who taught me a lot about what it looks like living with T1D as an adult. I've always been an over-sharer, and I find it's easier for me to make sense of what's going on in my life when I write about it and share it with those around me, so I just started posting about my experience as a diabetic.
Initially, it was to share with friends about what was going on in my life, and then quickly, it became a place for me to build community and make connections with others going through the same thing. Eventually, I realised that through sharing my diagnosis and my medical tech, I became both validated in my experience and more educated.
I think being open about my illness and proudly wearing my tech creates the same sort of validation for others online who are dealing with something similar, and it also helps spread awareness about T1D and educate people who might not know much about it otherwise.
You speak openly and honestly about how your chronic illness has changed your relationship with your body and food, which can sometimes be challenging.
How do you take care of yourself when you feel this way?
This is a super hard one because my relationship with my illness changes every day, especially because I'm still only recently diagnosed. As someone living with a chronic illness, it can become really easy to fall into depressive "burnout" mindsets, which I feel like I experience at least four to five times a year.
The best thing that has helped me navigate this is seeing a diabetes psychologist regularly (she has absolutely changed my life!), seeing my diabetes educator regularly and learning to lean on the people around me. It can feel isolating to live with a disease that impacts every facet of your life, so learning to be open with people around me about how this affects me has really helped me solidify a supportive network of people I can lean on.
My partner has been an absolute godsend throughout this process and is constantly helping me navigate my disease in such a caring and generous way.
When I'm not doing well or feeling burned out, little things like the below also really help:
- Ask someone around you to carry your diabetes supplies for you for a day.
- Ask someone you're with to do your injections for you (if they know how) if you're experiencing needle fatigue.
- Take a day off work when you're feeling burnt out and do something just for you (sleeping, going for a swim, reading, seeing friends, etc).
- Vent to a close friend or partner (sometimes, I just vent out everything I'm feeling about being diabetic without wanting a response or solution).
- Make an appointment with your diabetes team/educator/psychologist to reassess your management.