I recently submitted this piece of writing to a diabetes publication in the hope that they might consider featuring it at some point. While I was sad (and surprised) that they weren’t able to accommodate it, I’m incredibly proud of it. You’ve probably seen bits and pieces of my story scattered through this blog, so today I invite you to take the journey with me in the comfort of one blog post. From the moment I first began developing symptoms of diabetes right through to today where I feel supported, loved and owing a whole heap of debt to my diabetes tribe all over the world!
I’m one of the privileged few who was diagnosed with type 1 diabetes a few weeks shy of my 18th birthday.
My first noticeable symptom was weight loss, both on the scales and in front of the mirror. I thought nothing of it. A few weeks later I found myself unable to concentrate on my uni assignments for three straight days, distracted by feelings of extreme lethargy and thirst.
Within an hour of going to work the following morning, I lacked the energy to stand on my own two feet and had to call it a day. I visited a GP, who told me I had a virus and sent me home on hot fluids and bed rest.
I spent the next three days in bed, something that I rarely ever do when I’m sick. My thirst was insatiable. My mouth was devoid of all it’s saliva, making solid foods very unappealing. When I woke up on the fourth day feeling nauseated and short of breath, my Dad drove me to hospital where I later learned I was in a state of Diabetic Ketoacidosis (DKA).
Initially, I did feel a brief sense of dread at the prospect of having diabetes forever. However after feeling so poorly for several weeks, I was simply relieved to have my energy back! I don’t remember actually processing my type 1 diagnosis all that much right away. I really just had to dive back into uni, work and turning 18!
I left hospital knowing how to inject insulin and check my blood sugar. My parents were a great support to me at home, and I had a wonderful diabetes educator who I saw at the hospital diabetes clinic.
While I count myself lucky that I went through adolescence without diabetes, being diagnosed as a young adult presented a unique set of challenges. Nobody knew that I had diabetes. I didn’t grow up with it, I didn’t go through school with it, and it wasn’t simply there for the world to see. I didn’t know life any other way.
I wasn’t able to experience diabetes camps or other youth-oriented activities that would have automatically connected me to other people with diabetes. Being diagnosed at an age where I was fairly independent in my management, I didn’t have a parent or caregiver to share this experience with me first hand.
Diabetes quickly became a very isolating thing to deal with. Diabetes didn’t feel normal. I felt awkward. Different. Moreso at a time while others my age were venturing out into the night partying and drinking like there was no tomorrow, while I was sitting at home after my 18th birthday party eating my way out of a low.
I was really conscious of my diabetes. I checked my blood sugar and injected insulin in private. There were times where I didn’t leave home prepared. I didn’t know how to talk about something that felt so unexplainable. It became easy to keep diabetes to myself, and assume that nobody else would understand.
Diabetes was extremely tough to manage, and in hindsight I was probably weaned away from diabetes education too early. I wasn’t very motivated or engaged in my management, and diabetes definitely produced a lot of emotion.
In 2015 I began writing my blog. Writing has always been my passion, and I knew that I had wanted to start a blog for quite some time. I didn’t think that there was much out there on the interwebs from people actualy living with diabetes, however I was quickly proven wrong!
I began using Twitter, where I found a lot of other people with diabetes openly sharing their experiences. I discovered a group called the Oz Diabetes Online Community (#OzDOC), where weekly diabetes themed chats took place on Tuesday nights. I’m also in a few closed groups on Facebook, and I can see how powerful they are in providing a safe space for other people with diabetes to seek peer support.
Online peer support eventually extended into the offline world. I’ve been lucky enough to receive invites to a few diabetes conferences and events, where I’ve been able to put faces to some of the folks I’ve met online. The feeling is so surreal!
Here in Perth, I’ve also been working with an amazing Young Adult Diabetes Committee. We meet monthly and put together events to fulfil some of the unmet needs of young adults living with diabetes. It’s really exciting to finally have somewhat of a diabetes community closer to home.
Diabetes can be an incredibly isolating condition to live with, and there really is something to be said about sharing our experiences with people like us and hearing the words ‘me too.’
The Diabetes Online Community, or DOC as the cool kids called it, was my very first form of connection to other people with diabetes. It helped me to gain a great deal of confidence in my own condition. Day or night, there’s a good chance that others will be around for support in this global community.
Immersing myself in diabetes blogs, books and websites, I also found a wealth of useful information that helped me to become more engaged in my management. I got back in touch with my diabetes educator, and eventually made the leap from multiple daily injections to insulin pumping in 2016.
Blogging, and wider diabetes advocacy, has since become my passion. I’m incredibly proud of my little corner of the internet, where I’ve documented so much of my journey over the past three years. It has made my world a lot smaller today, and for that I am extremely grateful.
In 2015, I never imagined a life where connection to other people with diabetes would contribute to my physical and mental wellbeing. Peer support has been one of the biggest game changers in my eight years of living with type 1 diabetes, and it’s the one thing that I hope to change for others walking in my shoes.
Great article Frank. For what it’s worth more people might read diabetes publications if they contained stories of real life like yours. Also GPs yet another story of failure to diagnose until very ill, you need to do better!
Good account. Same for me at diagnosis- doctor said I had a cough/virus, but school house matron insisted I must have diabetes mellitus (“I have seen this before”.)
It’s terrible, isn’t it? At least your matron was able to pick it up.
What a wonderful article Frank. I do not know the magazine of course, but know that more of my items have been rejected than accepted by others. This is the perfect platform for the story, but The other platform woudl have been wonderful as well.
Your a great writer Frank, keep trying.