A Brief Journey in Diabetes Advocacy

Last night I gave a presentation to some of Stanford’s Medical students as part of a Design for Health class taught by Medicine X Executive Director Dr. Larry Chu and Dr. Kyra Bobinet. The theme of last night’s class was Design for Wearables, featuring Dr. Matthew Diamond from Misfit Wearables.

The class opened with my 5 minutes of fame, followed by Dr. Diamond’s talk, and ending with a questions and answers session that I moderated.

I think it went well.

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I Wrote About #dayofdiabetes for Symplur

While I continue to update http://dayofdiabetes.tumblr.com with new entries from last week, I invite you to hop on over to Symplur to read a guest post I wrote about the social metrics to come out of last Thursday. They provided me with some very cool graphics, like the one below, and some insightful numbers that helped prop up some of my analysis of what happened.

Image links to guest post on Symplur

Here’s a snippet:

My hope is that of those 2.5 million impressions, at least one of them helped someone new find the motivation to improve their own diabetes management. I hope that at least one of those impressions turned a Twitter lurker, to a thought-leader within the diabetes community. I hope that at least one of those impressions helped someone with a loved one living with diabetes understand what we go through on a daily basis a little bit better.

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More Thoughts on #dayofdiabetes

As I begin to curate and publish Day of Diabetes stories from yesterday, I’m starting to think about larger takeaways beyond the mere presence of tweets over the past 24 hours. I’m trying to keep track of the questions I’m asking, not with the hopes of finding immediate answers, but because I think there’s an extended conversation we can have as a result of your collective participation.

What can be gained by people with diabetes who observed #dayofdiabetes, but did not participate?

What can be said about the people who started sharing their #dayofdiabetes, but could not finish?

Why is sharing this level of detail important?

How can these stories become the foundation of something bigger? What does bigger look like?

Are there other patient communities that could engaged in a similar live-tweeting?

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Revisiting #dayofdiabetes

And with that, we’ve settled on Thursday, April 10 as a new #dayofdiabetes.

I’m calling this a revisit because I shared my first #dayofdiabetes last May and a bunch of people gave it a go after that. Engaging with this project is not something that I recommend on a daily basis. Looking this hard at my diabetes management, recognizing every action that I take that has a diabetes influence, and remembering to share that thought with Twitter…it’s exhausting (more so than simply living with diabetes.) That said, the advocacy and awareness impact of doing this is immeasurable.

For all the blog posts and independent tweets we share with the world, putting them back to back for a full day provides real insight into what it’s like to live with this disease. That’s the power of sharing a #dayofdiabetes. It’s just one way we as a community can spread diabetes fact rather than let diabetes myths pollute the conversation. It’s one of the most personal ways we can educate each other, and the general public, about the similarities, differences, struggles, and successes that come with living with diabetes.

So this Thursday, I invite you to share your Day of Diabetes. If you’re interested in participating, let me know in the comments or send me a message on Twitter @iam_spartacus. If you want to Storify your own tweets after you’re done, feel free. I’ll do my best to capture each of your days and post them up on the Day of Diabetes blog.

If you want to see what past entries look like, you can visit dayofdiabetes.tumblr.com.

And if you are afraid you’ll be alone in your tweets, fear not…

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The Great Divide

For those of you that are catching up, I moderate a blog called My Diabetes Secret that hosts anonymous submissions, or secrets, from the diabetes community. These submissions are typically confessions about life with diabetes. Fears. Anger. It’s really heavy stuff. I read every single submission before queueing it up to go live on the site. I get a notification every time someone likes or reblogs a post. It all goes through me.

Lately the frequency of submissions addressing the great divide among the diabetes community have been increasing. Normally I wouldn’t write about this, as it’s sadly something I see far too often among comment threads and miscellaneous tweets and blog posts and it’s something I don’t feel properly equipped to tackle. But because this is a home that I’ve built, I can only endure so many attempts to dismantle something that I’m quite proud of despite its relative digital infancy.

I’m of multiple minds when it comes to these posts. Part of me wants to delete them. Pretend they never happened. Something along the lines of “don’t feed the trolls”.

Another mind says that this is the reality of the diabetes community; well, this is the reality of a subset of the diabetes community. I realize that the Tumblr audience is a bit younger than most of the people with diabetes I interact with on a more regular basis. Maybe, and I’m being incredibly reductive with this one, they just need time to grow up?

While I’m not going to all-out deny submissions on the blog, I’ve found a middle ground that, for now, I’m comfortable with. Rather than cross-post to Facebook and Twitter, submissions adding fuel to a fire that I want no part of will be queued for publishing, but not shared on Twitter and Facebook. Until I can wrap my head around a better way to proceed, this is how I am handling those posts.

But there’s still something deeper at play with all of this. I’m not smart enough to know the answers, but I’m naive enough to ask some questions. So here we go.

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DiaBuzzfeed

This morning, Kim posted this:

The response was quite enthusiastic.

Later that day, this appeared:

And now DiaBuzzfeed is a thing. And it’s great.

And since there’s an option to submit posts yourself, I will be looking for my favorite animated gifs and a way to tie them all together with a diabetes-twist.

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Lucky Me

I’ve been quite lucky in my podcasting adventures over the past few years. I do my best to present my show as a professional, something to be proud of each and every week I publish a new episode. I try to let my content speak for itself rather than worry about an overly wordy pitch or request for an interview. No matter how convincing I may be, I still rely on people actually saying “yes” to my invites.

These past two conversations are just another instance of kind folks taking a leap of faith and having an hour-long conversation with a total stranger. All of this based on an email with 5 sentences and a link to a podcast, inviting prospective guests to “sample my podcast if they would like to see how I conduct my business.”

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