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.

15 thoughts on “A Closer Look at My Chronic Disease Secret

  1. It is intriguing to think of the “whys” something may or may not become popular. I wish I remember more from my Psychology class days, or could take a more current class that delves into the realms of social media psychology – you KNOW there has to be a class on that! As an aside, it’s great being connected to you!!! #dblogcheck


  2. That’s really awesome that you’ve created that website for all chronic diseases to be able to share and connect. I think it’s early in the game and probably would take some time for people to even be aware of it and for it to catch on, but in my opinion it seems like you’re definitely filling a gap. I hope it catches on, I’m an advocate of it.


  3. I’ve often wondered how connected other communities are compared to the DOC. Granted, I’m not as involved as I’d like to be (3 small kids will do that to you), but it’s nice you know everyone is here when I need them.


  4. Strange as it may seem, the diabetes online community is really a community, with its own distinct culture — just as the Deaf (note the capital “D”) community has its own distinct culture. Cancer’s many types lead to the type of fragmentation our thought leaders have been actively working to avoid in the Diabetes community (though truth be told, Diabetes community fragmentation is more along the lines of “real diabetes”, “worse diabetes”, “(not) your own fault” diabetes rather than the different-organ, different-growth types of cancers. Where I see chronic disease communities growing are where there is a lot of information and a lot of opinion available, and people willing to share resources. I see growing digestive-disorder communities (Crohn’s/IBD, celiac, etc.), autoimmune-disorder communities (celiac, RA, food-allergies), genetic disorder communities (sickle cell disease, etc.), and concerned-parent communities (food allergies and food-based behavioral disorders are probably the most common).
    At the moment, most chronic communities are relatively insular because — except for the leaders who start them — many are “in the closet” to those without similar health, parenting, or caregiving concerns. They’re smaller because they affect smaller percentages of the general population, or because the people living with them don’t have the time or energy to participate online, or the faculties to do so.
    That’s not to say that there aren’t players in the communities-integration sphere — players such as WEGO Health…


  5. I always think back to what Cherise has said to me about #dsma – that even if it only helps one person, it’s still a success and was needed. I hold that up as a benchmark for us all!!



  6. I totally agree with Karen. It is all worth it if it helps just one person – in whatever form it takes. Thanks, Chris, for all these initiatives you have started to help us share as a community.


  7. Maybe it’s like all new things….it takes time? Either way I am certain you have something of value to offer . You have added so much to the DOC….the MCDS just doesn’t know what they’re missing yet!!


  8. I’m a big fan of what you’ve done expanding it to more Chronic Disease; there’s definitely a need, even if the broader chronic disease spectrum doesn’t see it or realize it at the moment. Maybe they aren’t as connected as we are online, and that’s fine. And so maybe they just haven’t heard about it. But one thing I think carries over from our D-Community: When someone needs it, and searches for it, they’ll be able to find it. The fact that this exists, is everything. It’s kind of like choice — even when you have not-so-good tech and tools out there, the fact that you have them as a choice in your life is everything. So, thank you for what you’ve done. I’m going to spread word about this on my end, though that may not mean anything. But it’s good, no matter what the data may say as of now. #dblogcheck



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