My Diabetes Inklings

Celebrating 10 Years of the ACBRD

Recently the Australian Centre for Behavioural Research in Diabetes (ACBRD) celebrated their 10th anniversary. I was honoured to be invited to share what this significant milestone meant for me as a person living with diabetes at their webinar event. The more I reflected on this, the more I realised the enormous ripple effect that research on the psychosocial, emotional and mental wellbeing of diabetes has on the diabetes community.

The focus on diabetes management has often been focused on the clinical aspect of it. Only in the past few years have we really started being more vocal and inclusive of the psychosocial, emotional and mental aspects of living with diabetes day to day. Diabetes advocacy has played a big role in getting this recognised. At the same time, clinicians are also more likely to now take this more seriously due to the published research in this area. it really shouldn’t take research to get clinicians to listen, acknowledge or validate the experiences of people living with the condition. But we will take all the help we can get.

Most importantly, the growing research in this area provides hope for me; hope that we will keep fighting the stigma associated with diabetes. And that this will ensure we receive the same care, empathy and compassion by clinicians and others as those facing other conditions such as cancer. Even if all of this research leads to a conversation, getting people to start thinking about how they talk about diabetes and to people with diabetes will make a difference. The emerging research also boosts my self-confidence to advocate for my own medical needs when I speak with my healthcare team.

As a researcher, recognition for psychosocial, emotional and mental wellbeing research in diabetes further highlights the importance of my own work and advocacy around peer support for people with diabetes in Australia. In return, the research is translated into the work that Diabetes Victoria, Diabetes Australia and the NDSS does for people with diabetes. Talk about impact!

While there is still a long way to go in this area with lots of topics to explore, it’s important to celebrate the achievements that have been done to date. So a massive thank you to the ACBRD for all the work that you’ve accomplished so far. I can’t wait to see the exciting new research coming out from your centre and be part of that. To find out more about the ACBRD, check out their website here and don’t forget to read their 10 year report for a summary of their work up till this milestone.

My Diabetes Inklings

Finding Your Tribe

Peer support is a tricky and funny thing within the diabetes community. It exists in various forms; in person meetings, casual catch ups, to online forums and organised tweetchats. Peer support holds different meaning for each person. Some people I’ve spoken to think it’s unnecessary, many sing their praises and others see it as this dangerous or obnoxious underground club.

Being an introvert I struggle to talk with others in person, which is why I thrive in an online space. Having space and time to think about my responses without someone staring at you takes a lot of pressure off! I especially loved our OzDOC tweetchats with guided questions and the ability to hear different perspective on a particular topic. It was self-contained and easy to manage.

Discussion forums are my favourite place to lurk and learn. But they’re also a dangerous place for my mental health. Over the years, I’ve found myself being more frustrated than supported in these forums. Partly due to the horror stories people share of being treated so poorly by healthcare professionals, or the self-centred nature of people with their inability to look past their own noses and have empathy towards others. Especially when it comes to the infighting between the different types of diabetes. I had to step away from many of these forums as it put me in such a negative space.

Yet from these various online peer support platforms, I have met some of my closest friends to date. While we share the same connection of living with diabetes, I realised that I needed more than that to build a friendship. The most valuable question I have learned to ask myself is whether I would still hang out with these people even if we didn’t have diabetes. Yes, it’s great to have someone to vent to about a broken pancreas. But it’s easier to do this with someone I trust and value rather than airing it out in public. And I think part of this has evolved over time as my career developed and I prioritised my privacy.

Finding my own support network has been an endless case of trial and error with tears, heartache and self-doubt involved. But peer support is still the most valuable part of my diabetes management. When I talk about peer support, my biggest advice is always to approach it with an open mind and heart (easier said than done!). It’s akin to finding your own diabetes care team. Sometimes it takes a few tries before you find the right fit for you. At the end of the day though, it’s all worth it to find those precious gems of people you just click with.

My Diabetes Inklings

National Diabetes Week 2020 – A focus on mental health

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.