Wednesday’s #DSMA Twitter chat was about how we, as patients living with a chronic condition, can Chat, Act and make Change. Seeing as Wednesday nights always translate to Thursday mornings here in Australia while I’m at work, I thought I’d share my thoughts from the chat here today.
One year ago, I was a shadow of my current self.
I felt very much alone with my diabetes. I didn’t know anyone else with diabetes in real life. Most of the people around me didn’t know anything about the type of diabetes that I had. Nobody saw what I had to do to manage my diabetes. The insulin injections, the blood glucose tests, and all of the frustrations and emotions that I went through at night while the door to my room was closed shut.
It was very easy for me to shy away from diabetes. The more time that lapsed since my diagnosis, the more I would keep things to myself. I didn’t want to talk about diabetes with my family at the dinner table. I didn’t want to add my voice to the conversation if it meant that I had to talk about diabetes. I didn’t want to appear weak in front of others, because of my diabetes.
I struggled to embrace the support system that I did have in my healthcare professionals. I struggled to be open and honest in front of a revolving door of endocrinologists, being in a busy young adult diabetes clinic. I would smile and nod my head as she congratulated me on my excellent hba1c level, when in my head I knew that I had woken up hypo every night in that past week. Deep down I knew that things needed to improve, but I kept telling myself that things would change next week. And then the week after that. And then in the new year.
It’s very hard to feel empowered, let alone advocate, when you live with a condition that makes your life so much different from those around you at times. One year ago, I was far from an empowered patient.
Blogging and joining in the Diabetes Online Community on Twitter has changed my life, for the better. Having those connections from others who “get it” has filled a huge gap that was missing in my diabetes management. Having a blog which I was able to pour all of my thoughts into was extremely therapeutic. Receiving words of support from others in return was an added bonus.
I would like to think that my diabetes management is a million miles better than it was a year ago. I have a genuine interest in the disease that I live with, thanks to the Diabetes Online Community. I get information and inspiration from this community every day, that I can apply towards making my own diabetes management better. I have my own thoughts, and opinions that I want to talk about, on my blog and at home. If there’s a story on the news about diabetes, we’ll talk about it at the dinner table. If something interesting happens during the day, the first thing I want to do is get home and share it on my blog.
Being an empowered patient has helped me loads with my healthcare professionals. For one, I have taken my diabetes way more seriously in this past year than I ever have previously. In recent months I addressed minor concerns with my eyes and my feet straight away. I actively pursued a cancellation when I needed to see my endocrinologist in August, rather than wait until January. I packed my supplies like a crazy person when I went on holidays in July, rather than just taking the bare essentials. And I am now seriously considering an insulin pump, because I would like to achieve better than “okay” results with my diabetes managment.
Being a part of this community empowered me to advocate for something I strongly believed in – greater access to glucose test strips for Australians through the National Diabetes Services Scheme (NDSS). And that I did, through a column for Insulin Nation in July. That column resulted in a small change to the wording on the NDSS website, something I am extremely proud of. I have blogged, and intend on writing to Minister Ley, calling for government funding towards Continious Glucose Monitoring in Australia. And I like to think that the existence of this blog is a form of advocacy in itself each and every day.
The longer that I am a part of this wonderful community, the greater my passion is for all things diabetes. That passion grows more and more with each passing day. And that’s how I am empowered to #ChatActChange.