On Constructive Criticism and Showing Respect

Earlier this week I spoke at a meetup for the Bay Area Chapter of Medicine X about My Diabetes Secret and My Chronic Disease Secret. You can view the slides from my presentation here. I talked about the original inspiration for My Diabetes Secret, shared some of the submissions I’ve read over the past couple of years, and covered the evolution of the design for the platform – notably making a better effort to put the resources page more visible.

As my presentation moved into the challenges of My Chronic Disease Secret, I asked a number of questions of the audience to try and start a conversation about what about this anonymous sharing platform works and what needed to be rethought. Does an anonymous sharing platform like this only benefit the diabetes community? If not, how might we better engage other disease communities? How might we improve upon the task of providing a platform free of judgement, shame, stigma, and identity to the larger chronic disease community?

The resulting feedback I received was exactly what I needed to hear.

Some don’t see what they are living with as a chronic disease, and may not identify with a site named “My Chronic Disease Secret.” Some haven’t accepted their diagnosis. Some don’t want to, or can’t relate to other disease communities. While there’s much we can learn from each other across diseases, these’s still something to being among your peers. “Me too” can only go so far – I think I stretched that philosophy too far with the initial approach I took to My Chronic Disease Secret. In applying the My Diabetes Secret formula so broadly, I didn’t respect the individual nuances of each patient community. It was wrong for me to think that I could reach everyone at once. This is a process, and it takes time.

The funny thing is, I’ve been having these doubts and criticisms circling in my head for weeks, if not months, but hearing these points from people who were brand new to this idea made all the difference. The people at this meetup only knew of My Diabetes Secret what I was able to convey in 20 minutes, their perspective was fresh. And ultimately, their feedback is part of the reason I’m writing this today.

Part of the reason My Diabetes Secret works is that it’s focused. Instead of trying to speak to everyone, it just reaches one community – people impacted by diabetes. And while my initial ideas about expanding the platform were similarly focused, I got distracted by the prospect of trying to help everyone at once and ended up satisfying none of my initial goals. With all of this in mind, I’m going back to my initial question that started this whole adventure:

I created My Chronic Disease Secret because I felt other online disease communities could benefit from a platform to share their feelings anonymously, free of judgement, shame, or stigma with each other. But I didn’t give these communities the respect they deserve in providing them with their own respective platforms as I had for the diabetes community. If diabetes has its own space, why not cancer? Why not arthritis? Why not mental health conditions? So…I’m going to do that.

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Looking Ahead

The last time I wrote something on this blog I admitted that my desire, or more accurately my drive to write had diminished. Obviously, based on the timestamps, that problem still persists. Over the weekend I realized that my lack of initiative here has negatively impacted my productivity where it matters most – my professional career. I never would have guessed that this silly little (sometimes about) diabetes blog would be responsible for generating and maintaining the creative juices that flow through most of my online persona. And that those creative juices are the fuel that power the rest of my professional work throughout the day. But here we are.

As my time, energy, and focus are required elsewhere, the urge to find something to post on this space has declined. For the longest time I felt obligated to maintain some kind of illusion that I was a reliable beacon for the diabetes community evidenced by a new post every weekday. Even if that meant sharing a cat picture and writing 12 words underneath it, you could count on me.

To an extent, this can no longer be the case.

I’m not leaving. But I can’t pretend to be the diabetes advocate I was last week, last month, or last year. I just can’t. This means that I have to be more judicious with my time, and that ultimately means this blog cannot function as it has in the past.

So, when I have something to say, I’ll say it – here. And when I say it, I’ll do my best to make it worth your time to read. But I won’t be here every day. And I’m going to be okay with that.

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I’ve Got Nothing

Yesterday was the first time I shared something on this blog in almost three weeks.

Ordinarily I’d quickly put up a bunch of back-dated content to fill out the illusion that I’m publishing something here every day. But that’s not the truth. That’s not me. At least right now it’s not.

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About the Quantified Self Conference and Expo

Let's do this. #qs15

A photo posted by Christopher Snider (@iam_spartacus) on

Last week I attended QS15, Quantified Self’s annual conference and Expo as a part of my role as the new Associate Editor for Quantified Self Labs. My mandate was simple: attend breakout sessions and show-and-tell talks from the Quantified Self community with the goal of finding some interesting people to interview, and some interesting stories to tell. Having never attended a local Quantified Self meetup before, I didn’t really know what to expect of these three days. I figured there would be a lot of numbers and graphs and wearables – lots of wearables. And while some of what I encountered wasn’t far off from those preconceptions, I came away with a much different feeling about the entire Quantified Self movement than when the conference began.

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Whatever It Takes

Have you ever had one of those nights when you’ll do whatever it takes to get your blood glucose above 60 to the point that sleeping through most of the night at 250 mg/dL is more desireable than what you’re feeling in the moment?

I had one of those last night. 2 juice boxes and 9 glucose tabs later, I didn’t care what I woke up at, so long as I woke up.

For the most part, I feel like I have this diabetes thing under control. I know what needs to be done to get by, and do well. I have a generally positive attitude about this stuff most of the time. But every now and then base instincts take over and the need to simply get by is satisfactory.

In moments like that, diabetes sucks. Big time.

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Photos From Our Wedding

Our photographer just published the online gallery for our wedding. You can see the pictures by going to this link – http://margaretaustin.shootproof.com/Chris+Dayle – entering your email address (which will only be used to keep track of how many people are visiting the page), and the password 051615.

I couldn’t be happier with how these shots came out. And knowing we’ll be getting even more than this in our final delivery just builds the anticipation.

Because there was an inherent social media-y component to our relationship, and the lead up to our wedding, I feel fine sharing this link with all of you, my eager readers. Dayle and I met because of this blog, it’s only natural that I share as much as I can with this blog.

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