Including us. Especially us.

This Tweet really spoke to me the other day:

Renza was at the annual ATTD Conference in Berlin, and she had likely been watching various presentations from companies showing their latest D-tech developments in beautiful, asthetically-superior ways with beautiful, asthetically-superior people. Hence Renza’s tweet.

It should be no secret that the outward message about diabetes, from technology companies, drug companies, and even non-profits, tends to be positive. I don’t think I’ve ever seen a Medtronic, Tandem, Dexcom, Abbott, Eli Lilly, Novo Nordisk, Sanofi, or even JDRF or ADA ad or presentation showing someone dealing unhappily with the day-to-day existence of a chronic condition.

The most obvious reason for that is because it’s not pretty. The second most obvious reason for that is because it’s hard to explain the burden of living with diabetes.

That’s why I sent this tweet in reply:

The thing we need to continue to do is tell our story. No one can explain the feeling I have when late night diabetes attention is required better than I can.

Insulin affordability issues? Listening to people tout their cinnamon okra yogurt cure? Day after day of early morning highs or early morning lows? We’re the ones who experience it. We’re the ones who should talk about it.

No one will know what it’s like unless we show them what it’s like.

There are plenty of things that add to the burden of living with this condition. If they can’t show it in their presentations, I want groups and companies to at least show me how their product or their initiative can help reduce the burden of living with a gusher when performing a set change at work, a failed CGM sensor, and the fear of dying in our sleep.

We, the people living with diabetes, are in the best, perhaps the only, position possible to share this and get non-profits, corporations, and academics to acknowledge and include burden as a factor in their public-facing material.

Yes, of course we can be successful, happy people even after a diabetes diagnosis. But our lives are not the same every day, and there is often a fair amount of bad in addition to the good of living with this disease.

No one should ignore that, or try to put it into a convenient corner for us to talk about when everyone has left the building. Including us. Especially us.

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Comments

  • Rick Phillips  On February 26, 2019 at 8:59 pm

    Oh no kidding, As I try to find a charging cable and special must use USB plug device that I knwo is not special and that I do not have to use, but in order to maintain my warranty I am willing to dig up the house for 2 hours.

    Liked by 1 person

    • StephenS  On February 26, 2019 at 9:25 pm

      Oh, Yes! We all have those crazy moments. We need to keep talking about them.

      Like

  • Kathy  On February 27, 2019 at 9:53 am

    Yes. 100% yes. It’s 36 years into it for me and the burden hasn’t changed, even with all the neato, whiz-bang tech.

    Like

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