Tech’s ability to share has outstripped our social norms

Clearly tech’s ability to share has outstripped our social norms about sharing personal information. Which makes me wonder, when and what would I fell comfortable sharing? Have you thought about what you would be willing to share?

Kerry Sparling wrote in Diatribe this week about her experience sharing her blood glucose readings in an article called “Can I Follow Your CGM? Having a Conversation About Sharing Your Data.

In the article she shares her experience, as a tech savvy and public person, being asked to allow someone access to her streaming BG readings from her continuous glucose monitor (CGM).

Clearly tech’s ability to share has outstripped our social norms about sharing personal information. Which makes me wonder, when and what would I fell comfortable sharing? Have you thought about what you would be willing to share?

#diabetes #quanitifiedself

Photo Credit: CC NYC Media Lab SA 2.0

Reversing Type 2 diabetes

While some people with Type 2 have been able to delay adding medication through lifestyle change, to tell the story in a way that says that will work for everyone is dangerous.

Recently, a journalist contacted me looking for a person who had “reversed their diabetes” through diet and lifestyle changes. The journalist was writing a story for a national magazine.

While I think I understand the premise of this story…

It’s a story of hope…

I find it to be a false hope and a dangerous narrative.

Diabetes is a complex, chronic, degenerative disease.

While some people with Type 2 have been able to delay adding medication through lifestyle change, to tell the story in a way that says that will work for everyone is dangerous.

It leaves people living with Type 2 vulnerable to the blame & shame culture that says “if only you would exercise, stop eating sugar, and/or loose weight your disease will go away.” This is simply not true.

This also leads people living with Type 2 to feel like a failure when they get to the point that they do need to take medication. The idea that you should be able to “reverse” diabetes leads people to delay starting medication when they need it. Ultimately, this can lead to the complications (caused by poorly controlled diabetes) that people hope to avoid by making lifestyle choices.

My own story is that my A1C was over 13 when I was diagnosed. Today it’s substantially lower than that. I’ve made lifestyle changes and I take medication. I use all the tools available to me to manage my blood glucose.

Anything less would be foolhardy.

# # #

It’s taken me a very long time to come back here…

It’s taken me a very long time to come back here…

The last time I posted the whole Type 1 vs. Type 2 thing had blown up in the diabetes online community.

The last time I posted the whole Type 1 vs. Type 2 thing had blown up in the diabetes online community.

At first I was like…

sadness-bg1- no more
Sadness as she appears in Pixar’s Inside Out

Then I was like…

disgust-bg1 - no more
Disgust as she appears in Pixar’s Inside Out

Finally, I was like…

anger bg1
Anger as he appears in Pixar’s Inside Out

And I went away in a huff.
But now I am back.

The diabetes rumble in the parking lot

Why does this keep happening? People with a type of diabetes calling out people with another type of diabetes for a proverbial rumble in the parking lot.

It happened again. And on World Diabetes Day too.

…sigh…

That whole Type vs. Type argument raised its ugly head. Makes me sad. It doesn’t matter who started it. It matters that it keeps happening. This divisive argument usually goes like this: somehow this Type is diabetes and doesn’t want to be associated with that Type. People should know the difference! People should stop saying stupid stuff about diabetes. Names should be changed! Then people can say that stupid stuff about the Type they are referring to (and not my Type of diabetes). If that Type gets attention/research/treatments then my Type won’t. Mom always liked you better!

Jeezus…

Somehow I can’t imagine people with rheumatoid arthritis people calling out people with osteoarthritis for a proverbial rumble in the parking lot. Different things cause each of them. Each has its own pathology and treatments. And still it’s all arthritis.

Every time the Type vs. Type argument starts again I have only one thought: It needs to stop…NOW.

 

“We Are the Stories We Tell Ourselves”

There are many aspects to a story. What we should look for is the harmony between the aspects and not a resolution.

I was intrigued by the title of this TED Talk. “We are the stories we tell ourselves.”

It didn’t turn out to be what I expected. It’s mostly about how the speaker thinks about the stories he tells as a movie director. Two things stayed with me.

First, there are many levels to a story. You can look at the plot. Or you can look the psychological aspect of the story. Or the political aspect. Or the mythological aspect. A story is like a multifaceted gem. Each aspect reveals something different.

The same is true of life with diabetes. Something happens (the plot). It could be a diagnosis, a “good” day or a “bad” day, reaching a goal or failing to. We make sense of these events by the aspect(s) that we focus on at any given moment. Do we focus on our feelings about the event? Or the reasoning behind the action we take in response?

The aspects of a single story can be contradictory. A “good” day with diabetes can leave me feeling sad in the end when I realize that there’s no guarantee any other day will turn out the same. A “bad” day can make me determined and motivated to more consciously manage my health habits.

Second, what we should focus on is the harmony between the various aspects of the story–NOT the resolution of the story. Resolutions are limited. There is no happily ever after in diabetes. There is only tomorrow, and the day after that, and the day after that. By focusing on the bigger, infinite issues we can go on and not be driven to an end point.


Ted Talk “We Are the Stories We Tell Ourselves” – Shekhar Kapur