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.