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Today, I Launched My Chronic Pain Secret

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I’ve seen what My Diabetes Secret has done for the diabetes community. Every time a new secret is published, a resounding “me too” in likes and reblogs follow. Bringing these internal, emotional struggles to the surface has shed a new light on what it’s really like to live with diabetes. Managing that disease is more than just checking your blood sugar and taking your medication, and more and more people are starting to recognize the larger psychosocial challenges that come with living with a chronic disease.

With that in mind, I sought to expand the concept of My Diabetes Secret to other chronic disease communities. First among them is the chronic pain community and mypainsecret.com.

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About Speaking at AADE15

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The bow tie has landed. #AADE15

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And just like that my 24 hours in New Orleans is complete.

If you want to get to the good stuff, here’s the link for my slides, data, and additional resources I provided after my presentation – http://snider.io/aade2015.

Unfortunately, I’m not sure if I can call my presentation a success. I thought I was invited to speak about Twitter data and show off some cool graphics to a crowd that understood the basic mechanics of Twitter, but was looking for more insight into what the diabetes community has done and continues to do on Twitter. I completely underestimated the amount of time I should have spent covering the basics.

“How many of you are actively on Twitter?” For some reason I didn’t interpret the lack of hands in the air as a sign that I needed to slow down and focus on the simple stuff first:

What is Twitter? How do you sign up for Twitter? What the heck is that “#” symbol? What is an impression? How do you use Twitter? Why should I use Twitter? How do you Tweet? How do I follow you? Who should I follow? Why does this thing need my phone number? Help?!

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Stickiness

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For some reason, there’s been a lot of activity on My Diabetes Secret over the past few days. Actually, I should specify, there’s been a lot more activity than normal on My Diabetes Secret.

I keep an eye on the likes and reblogs to make sure I’m doing everything I can to ensure this blog reaches the people who need it most. Yet, for reasons I can’t decipher, the number of new followers has increased at a significant rate. I wish I knew what made this stuff “stick” with the diabetes community on Tumblr. I wish I knew what drives people to share, reblog, engage, and interact. I wish I could figure out why this entire experiment actually, kinda works.

My hope is that every single reblog represents a “me too”, and every single like represents a “I hear ya”. My Diabetes Secret isn’t a place to try and one-up the struggles of others, but the shared emotions are clearly connecting.

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Presentation Deadline

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I feel safe sharing this with you, because the people that need to hear this aren’t reading this blog.

My hope, coming out of my AADE presentation this summer, is that we can get those numbers to change.

To that end, I need your help.

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Reduce Stress and Anxiety

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“Having diabetes can be very stressful, and it can bring out all kinds of emotions. Denial, depression, and anger are feelings many people with diabetes have experienced. When you’re first diagnosed, it’s normal to believe there must be some mistake. it’s also normal to be sad or angry over the lifestyle adjustments it requires. The inability to get beyond these emotions, however, can put your health in danger.”

Of all the things I wish I knew when I was diagnosed, I think this is at the top. I don’t remember ever feeling particularly “down” about my diabetes in the early years. Maybe jumping right back into my classes at Virginia Tech prevented any opportunity to truly contemplate what the future of my life would become as a result of this disease. With so much of my life undetermined, I think I just added this to the list of things I had to consider.

These types of nuggets of advice are always tricky for newly diagnosed. There’s so much information out there, it’s easy to become overwhelmed. If you perform an image search on the word “diabetes”, you’ll get the clichéd injection pictures next to amputations. If you look for non-medical perspectives on diabetes, there’s a whole mess of blogs, and patient communities to discover.

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Here Are Some Links Worth Clicking

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My first piece for Quantified Self was published today. You can read it on Medium.

I started watching Daredevil on Netflix. This show is so good.

Heather Gabel is starting her PhD which will focus on studying the diabetes online community, and is looking for your input on what would be most beneficial for her to study and eventually share with us. Definitely worth checking out.

Tandem Diabetes has decided to not allow current t:slim users to upgrade to their new Dexcom-integrated pump when it hits the market. You can read their justification here. As you can imagine, I wasn’t very enthusiastic.

It’s a bit hyperbolic, but that’s what the Internet is for, right?

And, registration for the 2016 Diabetes UnConference is open. Highly worth considering, especially after hearing what Christel had to say about it on the podcast a few weeks ago.

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Counterproductive

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Good morning. #dexcom #diabetes

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I sometimes wonder if sharing my Dexcom and blood glucose meter readings is counterproductive. Reminding other people with diabetes that they aren’t alone in their struggles or successes with diabetes is great, but what happens when I start to self-censor what I share because it’s not “good enough”?

If I have a few consecutive days out of range, sometimes I prefer to keep that to myself. There’s nothing wrong with a little privacy, but when I become explicitly aware of that need, I think it has a negative effect on my diabetes management. Something to the effect of “I’m not doing my best, I need to focus more on myself, but that focus means I’m not sharing with the community, and sharing helps the community, but I’m not helping the community if I’m not doing my best.”

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