What makes us different?

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Okay, we know what makes us different.

You know what else makes us different?

We Care.

I mean, we care in a very big way. Would you like an example?


I was cleaning up some old photo files the other day when I came across this one from last year’s MasterLab in Orlando, Florida. It really made me notice something I hadn’t seen before. This was during the joint presentation given by Kelly Close and Adam Brown of diaTribe. First, let me ask you… What do you notice from this photo?

What I notice, other than the marvelous people appearing in it, is how everyone’s attention is either on the slide being presented or on the speaker presenting the slide. This was not in the early hours of the one day advocacy event sponsored by Diabetes Hands Foundation. This was about mid-afternoon, after we had already heard a few inspiring speakers, and after a nice lunch that, under other circumstances, might have made us very sleepy by then.

Yet we were still engaged, still interested in learning how to advocate effectively, how to be better at helping others living with diabetes while pushing the right buttons to amplify our voices.

That photo says to me that the people in that room (50-75 maybe?) were all in.

I’ve seen and heard a lot (including on that day) from people who have said that diabetes doesn’t have a movement yet. How we’ve not been bold enough. How, compared to advocates for better treatment of other diseases, we’re just not doing enough, or we’re not speaking with one voice, or we’re not something.

My opinion: We’re doing just fine. And I care a lot more about the future than I do about the past. Yes, it’s very true that diabetes doesn’t get enough attention from congress, and Big Pharma has us all caught up in that “Can’t live with the price, Can’t live without the medicine” paradigm. I freely admit that we could stand to have a brighter light shown on our disease. More people need to learn more about what we have to live with every day.

But we’re still making progress. We’re able to speak on bigger platforms and with bigger voices now, including crashing an FDA web conference, and being written up in the New York Daily News. Bigger audiences and more influential people are hearing our message.

And let’s not forget that all of us living with diabetes is living with an extremely unique condition. We have a disease that, if everything goes right, allows us to live an otherwise normal-looking life. For many of us, the complications that come with our condition like fries come with a Big Mac don’t show themselves until much later. In some cases, that means additional misguided judging by people who just can’t comprehend how doing a great job managing diabetes doesn’t always keep us safe from problems later. Or now.

When someone is diagnosed with cancer, or ALS, for example, the symptoms show themselves in a very visible way. When someone goes through chemotherapy, or starts to lose their muscle tone due to ALS, it’s very natural to want to help them as much as possible. We see the outward evidence of need. It is right that we do this.

When someone with diabetes goes through a difficult hypoglycemic episode, you know what we do? We treat and then we keep on going. Maybe it’s the idea of the word “normal”. We always want to be normal… when we’re high we want to be normal, when we’re low we want to be normal. When we’re normal? Not one living soul notices us.

So to get back to the photo, here’s the point: The people in that picture understand how absolutely sinister this condition can be. Whether we see the outward signs or not. Whether we see the outward signs now or later. They get it. What’s more, they care. And they are all doing something about it. Do you hear me? We are all doing what we can to make our voices heard.

We are all doing what we can. We have all made improvements and strengthened our advocacy, especially over the last few years. Our advocacy efforts and our fundraising efforts are sometimes dwarfed by those linked with other diseases. But we are not dormant. We are building. Things are happening. We are challenging decision-makers and we are saving lives. And it’s my opinion that most, if not all, of what we have achieved to this point has been due to the tireless efforts of people who, in addition to having diabetes in their lives every day, find time to raise children and work a regular job too.

After 24 years, I know where we’ve been. I know where we are now. What makes us different? Diabetes is as old as the ages. Large scale diabetes advocacy is just getting started. We have a lot to learn.

We have a lot to be proud of too.

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  • Mike Hoskins (@MHoskins2179)  On February 9, 2015 at 11:22 am

    Well said, Stephen. I completely agree — we’re doing just fine, and I’m encouraged about what we will continue accomplishing. Just as important as the messages we send out together, are the ones we send out individually by raising our own unique voices.

    Liked by 1 person

    • StephenS  On February 9, 2015 at 1:24 pm

      Thanks Mike… I’m (sort of) okay with people challenging us to do more, be bigger. But they need to give us a road map. Just throwing a blanket on our cause and saying “You’re not doing enough” doesn’t work for me anymore.


  • Karen  On February 9, 2015 at 12:20 pm

    Oh my gosh, I can not tell you how much I love this post. You are right, we have done so much. At times I may do less than I feel I should, but it’s because there are times I just don’t have much in me to give. And I think that’s okay. I think together we are all a team and we’ve got each other’s backs. 🙂

    Liked by 1 person

  • Melissa  On February 17, 2015 at 2:14 pm

    Thanks for this, Stephen.


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