I attended Stanford Medicine X this weekend, a conference billed as the intersection of medicine and emerging technologies. Because the conference took up so much of my time, I didn’t have an opportunity to record a traditional podcast. Instead, I asked ePatient scholars to leave a brief comment on their experience. With a little editing magic, here you go. Enjoy!
On a notecard briefly answer one of these questions: what uses up your energy (spoons) the most; how do you most like to expend your energy (spoons)?
If you’re not familiar with the Spoon Theory, I encourage you to read this post from butyoudontlooksick.com. It’s well worth the read. But for the sake of this post, I’ll briefly summarize this whole spoon business.
Essentially, spoons are an arbitrary measurement of energy. “Healthy” people have unlimited spoons to use during the day, but people dealing with chronic pain have a limited number of spoons. As a result, seemingly ordinary tasks like taking a shower or going to the grocery store are weighed against the amount of energy, or spoons, required. Some days you have more spoons at the ready, and can get more done. Other days, you barely have enough spoons to get out of bed. If you ever see #spoonie included on a tweet, now you know what’s going on.
In the grand scheme of things, the Spoon Theory can apply to anyone, to any patient as a way to convey the struggles that come with getting by day to day. With that understanding comes the collaboration at Medicine X. Attendees decorated spoons in the image of the thing that drains their spoons on a daily basis. What consumes you as a patient advocate? What keeps you up at night as a patient? What worries you the most as a caregiver? If you’re honest with yourself, these are incredibly intense questions that can cost a number of spoons to just contemplate.
I was at a diabetes retreat for young adults, the first time I have really been able to interact with people close to my own age. No one knows it but due to issues in my life I was very close to taking WAY more insulin than I should have and being around those people was the only thing that kept me from doing it.
Don’t ever discount the power of “me too”. It’s a powerful, sometimes life-saving feeling. While it may be a bit hyperbolic to say that all of these diabetes blogs are saving lives every day, we’re certainly helping fight the good fight.
Next Tuesday (July 22) I’m encouraging everyone to comment on every single blog post they read. Even if it’s just a “Check!”, leave a comment on everything. It may seem like a tough task, but it’s worth it.
I still maintain that I don’t need to be the person to direct the mob on this one, but there was enough of a push to gauge interest so here we are.
For those of you new to the fun, I had the idea of a “Check-In Day” last year, and I think it went well. The objective for this was not based in metrics. This isn’t about pageviews, or clicks, or referrals, or anything like that.
I like the idea of a check-in day because it helps remind members of the diabetes community of the size and scope of what all of this is. It’s another way to reaffirm the notion that we aren’t alone. It’s an opportunity to say “Hi. I read this. Thank you.”
So what do you think, eager-readers? Is this something you’d be up for? We can set a date later, but if we drum up enough momentum are you game to comment on every single diabetes blog you read for one day?
Remember, a comment can be as simple as writing “Check!” on our day of fun. Sharing posts with #dblogcheck on Twitter, Facebook, Tumblr, Google+, Pinterest? will help everyone find other blogs, too. Yes, it can be a lot of work, but I think it’s worth the time and energy.
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.
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.