I had one of those conversations last week. I was talking about my recently completed clinical trial, and I was going into too much detail. It’s pretty clear to me that the person I was speaking to thought participating in the trial was nice. But what was being studied (artificial pancreas) didn’t interest them in the least.

I blame that on me. If you’ve participated in the Diabetes Online Community for any length of time, you probably know how keeping up with every last thing can take up a lot of your time. But have you thought about how it changes your perspective?

This writer thinks about it from time to time. I’m not so worried about the DOC taking up all of my time. I manage that as well as I can, sometimes great, sometimes not so great. That’s okay… that’s life.

What this writer is more personally concerned about is in translating my story for the masses. Not so I can get a T.V. movie about my life produced, or anything like that. More in the sense that, as an advocate for people living with and affected by diabetes, I need to find a way to connect the Average Joe with my story and your story.

Diabetes cost the American economy 245 billion dollars in 2012. That impacts the lives of people not living with diabetes in many ways. Insurance costs that increase because of more hospital stays that happen due to test strips being inaccurate, or because we don’t have a device that will safely help keep us from going low overnight. Additional costs to the patient for drugs that are amazingly expensive but absolutely necessary. Increased absences from work or reduced productivity due to any number of ways that diabetes tries to kick us every day.

Average Joe doesn’t need to know how an insulin pump or continuous glucose monitor or artificial pancreas works, but they need to understand why pumps and CGMs and artificial pancreas development is so important. I need to communicate the story of how improving the lives of people living with diabetes matters to everyone. Because it does. Part of my job as an advocate is to connect the dots, regardless of the level at which your pancreas functions (if it does at all).

So I’ve reached one of those points where I need to pull back a bit and think big picture. It’s not always about how the person with diabetes identifies with my story. Sometimes it’s about how diabetes affects someone else’s story, whether they realize it or not. Because it does.

I’m definitely a work in progress.

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  • Karen  On June 16, 2014 at 2:36 pm

    Wow, way to get me thinking on a Monday!!! You are right, I too need to spend a good bit of time mulling over how to break out of the DOC bubble and get out there advocating more to the masses. Thanks for getting the wheels turning.


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