Category: Blog

The theme for this year’s National Diabetes Week is “Heads Up on Diabetes”, a focus on the mental and emotional health impact on living with diabetes. People often think of diabetes management as finger pricks, following a strict diet, insulin injections and losing weight. No one talks about the mental impact of being diagnosed and living with a chronic condition and the emotional burden it places on you. For me, this has been the case during my diagnosis and throughout most of my diabetes care.

Being told at 19 years old that I had diabetes felt soul-crushing. I felt like I was going to be this “sick person” taking medication for the rest of my life when my friends were out living their lives and partying. Instead, I needed to grow up and take responsibility of my health. Not one healthcare professional asked how I was dealing with it. I remember crying a lot about it and feeling angry and upset. At the same time, I was expected to “get on with it” and learn everything about diabetes. It was overwhelming.

Over the years, I have learned to live with diabetes. There were many learning curves and realisations along the way. One of which was my ability to take charge of my life and make diabetes fit around my life and not the other way around. Doing so involved a lot of self-advocacy and confidence, particularly when it comes to communicating with healthcare professionals, that the diabetes online community helped me to build and develop in myself.

Eleven years on and although most of my thought processes related to diabetes management have become mostly second nature, there are still overwhelming times and moments where I just have no idea what to do. There are still many moments where the burden of living with diabetes gets exhausting, which is when I appreciate having friends I can talk to who just get it. Chatting with them validates what I’m going through and makes me feel normal and reassures me that I will be okay – something I wished I had when I was first diagnosed.

I wonder what difference my diabetes journey would have been with additional psychological support along the way. Knowing that there are services available at my disposal is to assist me when I’m struggling is reassuring. However I still don’t think this is emphasised enough or normalised in diabetes care just yet. Luckily I have built up my own support networks along the way, which took a long time and emotional effort to do so.

Diabetes sucks. There’s no doubt about it. Mental health within diabetes care is still an area that is severely under-rated and not well integrated into our routine check ups. Managing diabetes is more than just blood glucose testing, taking your medications and healthy habits. It’s also about having resilience to rise up again after each hurdle, the confidence to voice your needs to your diabetes care team and those around you and feeling heard and being reassurance that what you’re going through and feeling is normal.

I hope that this year’s National Diabetes Week campaign has helped others understand a little bit more about the emotional challenges that people with diabetes face in their day to day lives. Most importantly, I hope that healthcare professionals will start to consider how their language and actions impacts on our mental health during consultations and to start the conversation on how we are doing as a whole person rather than just how our diabetes is going.

Throughout National Diabetes Week, I shared some thoughts and perspectives on emotional challenges with diabetes, check out my #NDW2020 highlights on Instagram here.

Just as we thought we had gotten over the worst of COVID19 here in Melbourne, we’re right back at square one. In fact I feel that this current lockdown is tougher than the first time we did it. Perhaps it was the tease of freedom we had or the frustration of people not doing the right thing. Or even just the combination of everything plus the added desolation and stress that work has thrown around. Either way it sucks.

Changing routines has had a massive impact on my diabetes management and my mental health. Working from home has meant being more sedentary during the day, meaning higher insulin resistance. My exercise and eating habits have also changed, which meant trying to figure how to manage my insulin doses around that. Stress, uncertainty and general moodiness equated to less motivation to do things, even diabetes management. Everything felt like a chore and forced.

Coming out of lockdown was something I approached with much trepidation. We started by dining out at our local cafes before venturing out to our surrounding suburbs and meeting up with other people. It was so good to be sitting down at a cafe again, catching up with friends and family over meals we didn’t cook. Everywhere we went, everyone made an effort to do the right thing by keeping their distance and sanitising everything.

Second lockdown hit me like a tonne of bricks. I am feeling incredibly worried with the rising number of COVID cases, feeling the panic and urge to sanitise everything I touch and mask up every time I’m out. I started getting a headache on day 1 of lockdown and later that night, dreamt that I had unknowingly contracted COVID and spread it to people I loved and places I often went to. By day 3, I knew I needed to take time out, rest and reset.

Today is day 4 and my stress headache has mostly subsided and I’m taking the time to focus on gratitude and kindness. I need to stop comparing myself to others, saying that I have nothing to be upset about or struggle with. Let’s start by being kind to ourselves. Each of our experiences are valid, albeit different, and we must acknowledge this. We’ve been through lockdown once, we can do it again for another six weeks. Support your local community. Do what you need to do to look after yourself.

My aim now is to prioritise my mental and physical health during this time and trust that everything else will fall into place. And thankfully, I have a cheeky kitten to keep me sane during lockdown at home.

Recently, I transitioned to a different diabetes clinic as I needed a team that was in one location and within the public system. The move to a new clinic felt like starting a new school. I was excited and nervous to meet my new team, while getting hopelessly lost in the hospital maze and appointment booking systems.

From the moment I stepped in the clinic the receptionists gave me a weird vibe. I was used to having a nice chat with people at the front desk who keep the clinic running smooth. However, these guys would barely break from their own conversations to say hi while checking me in. It felt weird to be almost invisible.

I recognised a few familiar faces from conferences and diabetes camps, so there was some friendly catch up on life and research. The thing I struggled with were the comments from clinicians I had never met who said “I won’t go through this with you since you should already know it” and “You probably don’t need to see the dietitian, seeing as you’re one”. Then I remembered that my referral included this little detail as part of my background. I did ask my referring doctor not to include this information in but perhaps it slipped through.

Those comments were exactly why I wanted to remain somewhat anonymous. I may know a lot about diabetes management and am good at helpful others troubleshoot things. But I usually spend so much brain space thinking about other diabetes research things for work that I sometimes just need that extra perspective. I overthink everything and am either over cautious or too blasé about my diabetes care. So having that extra guidance is extremely helpful.

Luckily I had the confidence to politely and firmly request that I did want a dietitian appointment and I did want to go through the basic knowledge even if it’s just to ensure that my knowledge is all up to date. I may have even asked a few questions that broke the system and sent clinicians trying to find appropriate print-outs and then printers. Apparently the hospital has a confusing printer system. So somewhere out there, a poor printer probably has a heap of random print outs that will never be claimed.

This experience reminded me of three things. One: that everyone in the clinic plays an important role in making the client feel comfortable. Two: that as a clinician, you need to meet a person at their own level and never make assumptions. I don’t want to be spoken down to like a child. At the same time I don’t want my clinician to skip everything, making me feel stupid if I asked a basic question with statements like “you should know this”. And three: it doesn’t matter who you are, advocating for your own health and needs is a skill you should never underestimate.