A few years ago, I attended a diabetes presentation where at the end I was shocked to be told that I was not an average person with diabetes because I knew so much about diabetes technology!!!! (For the record, I know squat! I can, just about, work my smart phone).
I was reminded of this experience after reading Frank Sita's post "Privileged”.
As I sat there, listening to the presenter, I was addled by how inaccurate/incomplete the information was that was being shared. Basic stuff like not mixing up two different models of insulin pumps and the correct name of a significant person in diabetes technology. I mean how are you going to find out more if you don’t have the correct name to google? At one point, I did correct the presenter and the person behind me made me feel like I was being rude and implied it didn’t matter.
Once the presentation was over and we were socializing, I asked a friend if it was unusual that I had a good bit of knowledge about the topic of the night and my friend said “Yes”. I’ve always known that everybody with diabetes is different but this was the first time, but not the last, that I ever felt I was completely different to everyone else. And I didn’t like it!
When I read the second half of Frank Sita’s post “Privileged” I was immediately brought back to how I felt that night and how I couldn’t understand how or why I am so “different”.
I think the answer is I’m not. We all start our journey with diabetes at diagnosis.
I reached a point in my diabetes journey where I craved information and I went looking for it. I didn’t wait for it to come to me. I don’t have all my pieces of diabetes technology because they found me: I went looking for them and I made it happen. I decided that I was not going to rely on just one source for all my diabetes health information and thanks to the internet I don’t have to. And I decided to ask lots, LOTS of questions.
I really don’t think I’m privileged or unusual. I am not your average person with diabetes but I’m not far off it.
Franks asks in his post:
“How do we get the level of engagement that was in that room at OzDSMS, outside the room? And “How do we make sure that every person with diabetes knows about all of the options available to them in managing their diabetes?”
I feel the answer is we can’t. Unless they find themselves desperate enough, like me, to go looking for it and let’s face it, quite a few do. Or they just get curious and google. Or unless healthcare providers place more value on peer support and tell their patients how to engage with it, we won’t see the level of engagement outside the room reach beyond the average 10% of people with diabetes.
However, if, by chance, there is someone reading this who has just discovered that there is so much information out there that you never knew was there. Where you felt there has to be better that what you have out there, welcome my friend to the place where you have found someone like you.