** This originally appeared as a guest post at Diabetes Social Media Advocacy on November 6, 2010 and is re-posted here for archival purposes.
When I was asked (thanks Cherise!!) to write a guest post at Diabetes Social Media Advocacy for National Diabetes Month, I was more than happy to do so. I tossed around a few ideas, but decided that it was probably best to write something about social media since that’s what we’re all talking about here.
I had been using the internet since the early 90′s for information and news , but had never really used it in a social context other than email. I initially saw some online diabetic news articles five or six years ago and started to keep tabs on diabetic news. I think the first “official” blog I started reading on a regular basis was Diabetes Mine, but that was just “news” for me as well.
It’s been about 2 years since I first ventured into the Diabetes Online Community (DOC). My adventure began when I was researching insulin pumps and I found TuDiabetes. Lurking for a couple of weeks before joining in, I was immediately welcomed and accepted by the community, which, it seems, the DOC is famous for.
I was diagnosed in 1970 at the age of 7. My parents grew up during the Great Depression. Dad was a WWII vet and retired as a Command Sergeant Major from the US Army in 1968, mom was an army wife and, at 87, can still kick my butt!
It was a different time. People didn’t talk about their “conditions”. Sometimes life was just hard and you dealt with it the best you could. I’ve been pretty much managing my own condition since I was about 10 years old.
Now where I am going with this was that I was very isolated in this. As the months turned into years and the years into decades; the long term physical, mental, emotional, financial stress was taking it’s toll on me. The fact that these stressors even exist has really only been acknowledged recently.
When I found the DOC I found something that I didn’t even know existed, let alone know that I needed. I found peer support, people who actually understood and didn’t judge. I’ve made some great friends and have had a chance to actually meet a few of them, though too few by far.
I had been blogging on TuDiabetes about things but something happened last year that made me want to take on a bigger advocacy role, a role that I had never ever considered for myself.
I was invited to my first D-meetup, a WDD luncheon here in Kansas City that Cherise was going to speak at. For the first time, I was able to actually “see” that I really was not alone in this. I met some great people that day; most of whom I manage to chat or have dinner with now and again. I saw a room full of people struggling with the same issues as I was. I decided that maybe there was more I could do, that I had something to offer from the last 40 years.
As I began my own blog and started interacting with more members of the DOC, whether it be on twitter or by reading/commenting on their blogs, I realized that there was something that I still needed to resolve with my own attitude toward my diabetes. I’d managed to get a somewhat decent handle on my lifetime of depression, but there was something more that I really had to acknowledge before I could really move on
It was guilt. In particular, it was survivor’s guilt. I had spent entire decades barely taking care of myself and, in all honesty, I should probably have some severe complications by now; if not be dead.
As I was on the web more and more, delving into the very depths of the DOC, I kept seeing stories of people, diagnosed much later than I was, having terrible troubles. Children passing away. Loosing limbs, organ failure. The list goes on.
It wasn’t right. Why should I outlive someone’s child? Why should I have some “special gift” to escape complications and not everyone else?
After I participated in Lee Ann Thill’s Diabetes Art Day (see the art here and my own response to it here) something finally clicked into place, I finally was able to truly understand, in my heart, that the why didn’t matter.
I have never felt more at peace with myself.
Now, you’re probably sitting there thinking one of two things: Either “Will this guy ever shut up?” or “Great story Scott, but whatcha getting at?”
What I am getting at is that every single contact I had with the DOC, every single tweet, reply, email, hate mail, meet-up fed into my understanding that the “why” doesn’t matter. Does God have a plan for me? I don’t know, but what I do know is that this is what the DOC does. That is what Social Media is capable of doing.
And we must protect it so that it may, through all of us and those that will come after, continue to help people. As time goes on, the technology will continue to improve and, as it does, people will use these tools to best support what they, as individuals, need.
As I was watching some of the tweets from recent conferences, there was chatter about moving from Health 2.0 into a Health 3.0 era. What does that mean? Will some people get “stuck” at the 2.0 stage? Does everyone actually need whatever 3.0 has to offer?
It is about you, not some company, health 2.0 or 3.0 or whatever moniker that someone tosses out there.
You make this work.
And for that, I thank you.