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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“Only”

I “only” have fibromyalgia. I do not feel like my chronic illness is severe enough (even though it is disabling and my life has been drastically changed from it) compared to other people’s illnesses. My best friend has RA and MS and I feel that even she does not take my illness seriously because it is “just fibro”. If it is “just fibro” than why am I in so much pain? Chronic illness is isolating enough without having an unspoken hierarchy of who has the worst disease.

Shared on My Chronic Disease Secret

I remember, early in my diagnosis, hearing something along the lines of “at least it’s not cancer”.

I’ve seen plenty of back and forth within the diabetes community judging whether it’s “better” to have type 1 or type 2 diabetes. Or if it’s “better” to be diagnosed as a child or later in life.

I’ve seen far too many comparisons in and among various disease communities attempting an informal and quite frankly inappropriate ranking of diseases.

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After the #dblogcheck Dust Settles

I’d like to thank everyone who participated in #dblogcheck on Tuesday. Seeing all the comments on every blog I visited put a huge smile on my face.

I noticed a few comments about “missing” the day or not being able to get as many posts as intended. That’s okay, folks. The idea behind the day is to rekindle the community building fire and remind everyone out there that you are not alone. We’ve never needed a day for commenting, but rallying people behind a cause (even one as silly as this) makes the whole concept a bit easier to understand and execute.

Of course, taking the time to comment on every single diabetes blog post every single day is not a sustainable effort. There’s too many of us. That’s okay. My hope is that coming out of a self-imposed comment on everything day establishes some sort of routine that results in commenting a little more often than you did the day before.

So often we go through our lives focusing on the negative or simply not recognizing the positive. How often do you make a priority of leaving a positive review of something on Amazon or Yelp? How much more likely are you to leave a review if it’s going to be negative? How much more likely are you to tell Twitter or Facebook about a bad experience you had instead of a good one? I believe that commenting on these blog posts makes everyone feel better. Raising the collective spirit of the diabetes community is a goal all of us should have, regardless of how we achieve it. Considering how easily diabetes can break each of us down as individuals, walking away with any amount of positivity is going to take a group effort.

So thank you to all of you who participated. If you didn’t get to everything on Tuesday, that’s okay. Maybe set a goal to get to all of the posts by the end of the week? Maybe set a new goal to comment on at least one diabetes blog each week day? Maybe it only has to be one comment a week? I’m saying this in part to give each of you an idea as to how you might lift the spirit of the diabetes community, and also because I need to be better about commenting in general, too. I’m not immune to any of the observations I’ve made here. If we all do a little better, great things are possible.

Here’s a cat picture to balance you out.

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Puzzling. #catlife

A post shared by Christopher Snider (@iam_spartacus) on

A Closer Look at My Chronic Disease Secret

It’s been a couple of weeks since I published My Chronic Disease Secret and offered a place for anyone impacted by a chronic disease a platform to anonymously share whatever secrets, fears, or thoughts they had. At the time I had questioned the lack of a “My Cancer Secret” equivalent to “My Diabetes Secret”, and eventually embarked upon building something not just for people touched by cancer, but the entire chronic disease community. While it’s too early to call this venture a failure or success, I’ve noticed one immediate trend that sets My Chronic Disease Secret apart from My Diabetes Secret: activity.

The amount of initial interest in MCDS (I need a better abbreviation) simply doesn’t compare to the initial impact My Diabetes Secret made. Maybe I didn’t do a sufficient job explaining the reasons behind its existence. Maybe it takes time for each community to discover a new digital outlet. Maybe a platform for all chronic diseases isn’t needed. Maybe I overestimated the potential for something like this. Maybe people surviving cancer aren’t using Tumblr to connect with their peers. Or, maybe I’m overreacting and two weeks is not indicative of what this effort will yield.

Despite all of those maybe’s, I think there is a bigger takeaway that furthers the assertion that diabetes community is a bit of an online outlier. We’re more connected and more active than most chronic disease communities. I’ve lost count at the number of times I’ve heard that the diabetes online community is the benchmark for patient engagement and interaction. That isn’t to say that strides haven’t been made through breast cancer or rheumatoid arthritis communities, but perhaps there are only a select few that can command the online audience and interactions as diabetes, breast cancer, and arthritis. Maybe?

To be fair, I haven’t spent days on end searching for patient blogs from the entire chronic disease spectrum. Then again, maybe I should. That would give me a better understanding of what is and isn’t out there, right? All of these assumptions, maybes, and perhaps’ are based on anecdotal conversations I’ve had over the past few years.

All this being said, I’d rather have a place for all and see it not get used than a place for some leaving those left behind to think they are alone. I’m sure My Chronic Disease Secret will find its place one day – it’s just a matter of time.

Somewhat related, today has been designated as a Check In Day for the diabetes community. I’m encouraging everyone to leave a comment on every diabetes blog they read today. Even if it’s a simple “Check!”, say something. Use this opportunity to show how connected the diabetes online community truly is.

Let’s Bring Back #dblogcheck

After recent comments about the ever-changing community, and last night’s #dsma chat about communication, the idea of bringing back #dblogcheck popped up.

For those of you just joining us, #dblogcheck was an idea I had a couple of years ago that, for a single day, encouraged everyone to leave a comment on every diabetes blog post you read. The motivation behind this was not for pageviews or notoriety, but community. So often it feels like we’re standing on our little social media platforms shouting into the void, wondering if anyone is paying attention.

Of course the reality is that the Internet is made up of a diverse range of interactions. From the hyper connected curators, to the on-the-nose news sharers, to the social butterflies that say hi to everyone, to the lurkers who are paying attention but choose not to say much. #dblogcheck is an opportunity for all of us to come up, look around, and embrace the diabetes community.

Image (linked) from giphy.com

So, I’m nominating Tuesday, March 10 as our next #dblogcheck.

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Stay the Course

I just want someone I can tell how I really feel too, without fear of judgment or abandonment. I want someone who will check in on me, and will say “I know you aren’t doing okay, please tell me what’s wrong”.

I want a friend.

This was shared on My Chronic Disease Secret last week.

Today, Kerri wrote this:

I miss the old school blogging, quite a bit.  I miss the small community feel that used to be in play, where people wrote in hopes of connecting instead of being “seen.”

As a result, I told Facebook:

I feel guilty saying ‘what happened to the diabetes community?’ to a community of followers who mostly have or know someone living with diabetes.

It’s important for me to remember that the community is, and will always be there, even if I’ve changed.

There’s been quite a discussion thus far.

All of this sort of ties back into something I wrote a few weeks ago about the sense that I’ve become more detached the diabetes community.

What I think I’m getting at is I’m feeling nostalgic for the way things “used to be” even if the way things are right now are a direct result of the growth the diabetes online community has experienced over the past five to seven years depending on your tenure. As we all grow up, have kids, move, get married, find new priorities, it’s difficult to hold onto everything that was a priority in years past. There are times when this blog feel like a mandatory ritual rather than an exciting routine.

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Just Talking with Cherise Shockley

Cherise Shockley joins me this week to talk about the upcoming year for the Diabetes Community Advocacy Foundation, reflect on the past year of #dsma Twitter chats, share her strategies for a work-life balance, and her love of economics (both micro and macro). Enjoy.

Follow Cherise on Twitter @SweeterCherise and diabetescaf.org.

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