Welcome to the new chapter of my diabetes journey and hopefully, ours together. This is the first blog post on the new version of my diabetes blog – Diabetes Can’t Stop Me. I have lived with type 1 diabetes since 1979, when the extreme weight loss I had been experiencing, shifted from delight at being able to sport a blue string bikini on our Gold Coast family road trip holiday, to a spiral into ill health, leg cramps, thrush, exhaustion and multiple trips to the loo. The culmination was peeing on a stick at the country doctor’s surgery where we lived, and being told I had type 1 diabetes. A trip to the city for a 2 week hospital stay, right at the start of year 8 high school, was the final destination.
My journey in the online diabetes community started way back in 2001, when I had been working in child protection as a social worker for 15 years and experienced post traumatic stress. If you have ever seen or even heard about (or experienced, and if so I really hope you got out) these situations, you will understand that this left me broken. It was on top of depression and teenage angst from life with type 1 diabetes, and later, postnatal depression. Basically my mental health was not in a great place.
Also, since hitting my 30’s I had been searching for the right support, someone to connect with, talk, get understanding, and had come up blank. It seemed there was support for children, but not for adults. And when I was a kid, I had no desire to go to diabetes camps. Why the hell would I want to spend a weekend with a bunch of other diabetics, focused on this disease I hated so much? I know some people loved them, but it was not for me. Yet as I grew, the desire in me to connect magnified, and after chatting with a couple of people at work, who also had type 1 diabetes (my first ever experience of this), I realised I was not the only one who had suffered mental as well as physical impacts, from my diabetes.
Enter the internet.
Yep computers arrived at work and I was smitten. I ended up teaching other people how to use our client information systems. But then, the Internet! I was fascinated by this internet, this thing full or information and possibilities. I discovered forums and in particular, a little group called Reality Check, started by the fabulous Kate Gilbert, a young woman full of heart and brains, who had just started an online forum for young people with type 1 diabetes. I had the idea to start an online counselling service. I chatted with Kate, who agreed it was a brilliant idea.
I looked for guidelines, others who were doing this and came up blank…there were no guidelines, nobody in Australia really considering this, nothing to really assist me. I did find an international mental health organisation, and was able to work from their concepts, to make sure I had covered ethics, processes and so on, for getting started. My website was only the 3rd in Australia to offer online counselling.
There was no wordpress back then and no social media. My brother in law is a web designer and was able to make my first little website for me. I quit my job, took a package and went off into the night to begin Diabetes Counselling Online.
For the first couple of years I worked alone in my little home office, creating all my own marketing materials, reaching out to people in the diabetes field, trying to get noticed enough to score some funding,and supporting people via email counselling and forums – I knew from the start that this must be a free service. It was not easy, and I had some mixed reactions from diabetes health care professionals, to say the least. I remember one particularly bad moment, when a diabetes educator told me that “people with diabetes shouldn’t work in diabetes – they have too much baggage”…yep, true story. Suffice to say I was in tears that day. However, I did not give up.
I was able to connect with another remarkable young woman with type 1 diabetes, Fiona James, who was working in Diabetes Australia National Office at the time. She was very keen to get me funded and from there, things began to change. After 2 years, I was able to get a small grant, under the young people’s programmes (because you know, only young people were using the interwebs back then…not!) and never looked back, with a period of about 6 years where we had ongoing grants. There were some interesting times, including a love triangle on our forums, and a troll, even way back then, but overall, it was an exciting time, full of possibilities.
I went on to study diabetes education and management at university and become a diabetes educator; obtained charitable status for the organisation which allowed us to fundraise and go for grants; grew a team of counsellors and volunteers; studied at PhD level; ran diabetes wellbeing retreats with my dear friend; spoke all over the world about diabetes and mental health; wrote and published books; counselled and supported thousands and thousands of people across the world; was a state finalist in the Australian of the Year Awards and the Telstra Business Women’s Awards; and became a leader in diabetes and mental health.
Throughout this time, the most important and best part of all of it, was the community. I created forums, chat rooms, ran chat group counselling programmes, had email buddies set up, and eventually took on social media when that emerged, to create a range of support groups on Facebook. The people I connected with and to, were the reason for all of it – the long stretches with no funds, the going backwards financially, the hours and hours of voluntary work – was all worth it for the moments when I was with my people, sharing our voices – and feeling like we were no longer alone.
Our final grant ended in July 2015 and things got tough. It became harder and harder to survive without ongoing funding, and I now had a team of people who needed to be paid. It became harder and harder also, for me personally to counsel people, after 38 years of doing this. And then, following a nasty troll experience, it just got too hard…..
We closed our doors in June 2016 and I focused fully on another business I had started as a place away from diabetes – my sustainable homewares blog and store Recycled Interiors – and walked away from diabetes.
At first I felt free, secure in my decision, although it was a big battle to do it, to walk away from 15 years of my life. And I totally adore my work in sustainability and interiors, yet after awhile, I started to feel like a part of me, an actual part of ME, was missing…..it was my community. I felt disconnected again, a little bit lost, and lonely. I struggled with my own diabetes, but felt I had nowhere to share this, a sense of the all or nothing had crept in. I had lost my voice through exhaustion, burn out, fear, bullying and anxiety….and having been the victim of bullying for many years as a child and teen, followed by a victim of domestic violence from 16 – 19 years old; and having worked in violence for so long, resulting in it being directed at me – that old sense of fear had taken my voice and placed me far away from the people I needed in my life.
I worked on this, a lot. And recognised that the best way forward was to start to share my voice once again in the diabetes online community. I also have an online store and blog to run, and a part time job in nature conservation now. But to be able to blog, and advocate, to be able to share and converse, and connect in the diabetes community – that is a pleasure and an honour.
So here I sit. Hands on the keyboard once again…writing words about diabetes. I have so many words in my head and heart, and I am sure that they will tumble out of me. I hope that by doing so, I will connect with you and that my words may make a difference to your journey with diabetes. And that if you also write these words, that I can read yours, and together we can find a communal voice that brings to life the daily experiences of life with diabetes.
Oh and one final word – screw the trolls and bullies. Because together, our voices are far louder than theirs, and I will never again let anyone tell me that I can not speak.