Tuesday, November 20, 2012

On Friends, Real Life Meet-Ups & 80s Music

What do outdated music lyrics, healthcare and Social Media have in common…. 

For so long it seems that I have been trying to figure out the answer. That was until I realized that I didn’t care to discover it. 

So much of living with a chronic illness is a game of hit and miss. We spend hours of our lives in doctors offices and crunching facts and figures. We adjust medical regimens, juggle appointments and split hairs over minute detail, all in the quest to find the “perfect” balance 

The medical world is filled with buzz words that often filter through to our lives as patients. I hear the words “consumer”, “pharma”, “research study” and “best patient outcome” and my eyes start to glaze over. The fact is, I am not at the coal face of medical research and I never will be. I am just an “average Joe” with average needs. The need to be accepted, loved and understood. For me these are issues compounded by living with a chronic illness. 

Backing up a couple of years I must have been a model of a “noncompliant patient”. Ignoring all of the best medical advice and the words of longsuffering friends I found myself getting sicker and sicker. With the passing of time my world became smaller and smaller. From having so much to live for, my goal became getting through to the next week. As weeks passed and little changed I dreamed of making it through to the next day, then the next hour, until eventually all I longed for was a death that would not come
With very little to no eyesight left, my world had well and truly fallen apart. Unable to go out, to drive or to work I soon found my closest friends abandoning me. Coming to terms with a chronic illness and the rapid onset of chronic complications it seemed I was all alone with nowhere to go.  Defeated and detached from all means of emotional support I quickly sank into the mire of  depression 
Here is where I found Social Media. It was not about folk moping around feeling sorry for themselves but real people. Real people living their real lives. Unable to do much else, I drank in their virtual presence. For the first time in a long time people took an interest in me. They understood me not for my medical condition but for all of me, my warped sense of humour, love of all things 80s and the physical toll diabetes had taken on my body. 
Somehow being amongst friends I began to take an interest in my own health. There was no gun to my head, no threatening words of medical professionals just the realization that for the first time in too long, life was worth living. That there were people who cared about all of me, who in turn I cared about.  A friend of mine captured my first real life meeting with many of these folk last year n Kansas City. Thanks to Sara from “Moments of Wonderful”   I have included a link to that here 
Social Media is connecting the dots. It is bringing together people who share a common condition and taking their minds off that condition. It is empowering, eye opening and life transforming. Add to this the input of pharmaceutical companies and health care professionals and the circle is complete.  
This week Australia held its first ever Diabetes Social Media Summit. It was an opportunity for a group of Australians to sit around a table with representatives from pharma and medical professionals and share stories. It was no hollow talk fest filled with buzz words but an opportunity for individuals with an online presence to connect in real life.  
While the many stories to come out of the summit are yet to be told I came away feeling excited and empowered. I’m excited to see so many people singing from the same song sheet. I’m excited to see Social Media bringing more people in from a world of isolation and confusion and empowered to do more to expand its influence. 
So the frivolous tweets of 80s lyrics continue but now they continue with a new passion. I feel the tide turning and folk coming together We’re putting behind the petty differences that so often separate us and uniting to help each other. We’re providing a network of support to fall back upon in times of crisis and a word of encouragement when it’s most needed.  
Diabetes Australia Victoria paid for my travel and accommodation to this Summit. The words here are my own and I was not obligated to write about the event




  1. Listening to 80's music as I read this. (Thought you would want to know that.) Wonderful post! Thank you for writing it.

  2. Well said, Simon. So often those buzz words are just... transactional. They really don't mean anything. Finding those real life connections is priceless and something I personally find exhilarating. Thanks for being a part of that and keeping the 80s tune tweets going.

  3. I'm behind in my blog reading & just now found myself reading your post. And of course watching that video Sara made again. I'm sure no one will be surprised to learn that I still need tissue when I watch it. One day Simon, my friend, we will be in the same room together & I cannot wait. So keep tweeting those awesome song lyrics because whether you know it or not, those tweets have smoothed out some pretty rough days. And they never fail to make me smile. :)

  4. My world is far better because you are in it!!

  5. You need to add blogging to that list of lyrics and social media because I miss hearing more from you!

  6. Stumbled across this blog via T1DN and belatedly I just wanted to say that so much of your experience resonates with mine. The glorious revelation from social media (when I discovered a type diabetes discussion board for young people in 1999 we just called it the internet, the term social media hadn't been coined then) that I was not alone in my failings and resentment of all that t1d entails and later the struggle with complications. There are no easy answers in all of this, I think success consists of just getting up one more time than you're knocked down. That's a cliche but sometimes that's all we have. Good luck and keep being part of the DOC.