As the diabetes online community (DOC), what are we about? I ask this question not because I feel I represent the DOC in any way, shape, or form, but as a self-appointed member of the diabetes online community. In fact, all members of the DOC are self-appointed. I also ask because there has been some buzz recently about what the doc is and is not and the perceptions that some people have about feeling left out or less than equal. I think that in the evolution of a virtual patient community, this type of feedback is valuable, so I wanted to explore some of the frustrations that have been voiced recently.
Before I get too deep into that, however, first things first: The comments that spurred me to think about the doc and what it may look or feel like to others came primarily from My Diabetes Secret, a tumblr feed to which people may anonymously post their thoughts/feelings/frustrations/etc. about diabetes. As in, the things they probably wouldn’t share if their name were attached to it. (Disclosure: Chris runs this. I live with Chris. I also plan to marry him. That said, I have nothing to do with My Diabetes Secret, except when, every now and then, I encourage him to take a break when it gets too heavy to manage.) Recently, a few posts stood out to Chris enough for him to share them on his own channels and ask people for their input and consideration.
Here’s one comment:
“I hate how elitist the diabetes community has become. You have international and national events and conferences and its [sic] always the same bloggers who attend. Its [sic] always the same bloggers who get to trial freebies before they get released. It is completely unfair that these people are handed things on a plate when other[s] trying desperately to make a difference have to self fund everything. The costs of which prevents them from attending the events these other people get to attend where they get free travel, free hotel and free admission.”
I think it’s important that I say a few things here: I am not one of the big dogs when I comes to diabetes, the DOC or diabetes blogging. Far from it. I know many of the big dogs, and yes, part of that is due to the fact that I interacted with them when I worked for ol’ Big Red. But I left that organization more than three years ago and these people have become my friends. But I know I’m not one of them. This blog is relatively new and while I appreciate that you’re reading this, I fully expect that there will be days when you stop reading because “Man, that Dayle girl at Imperfect Pancreas really couldn’t think of something interesting to write today, could she?” (probably true). Some may even argue that my sweetheart is one of the more common diabetes names out there. So I have some associations.
That said, I think I can see where the anonymous poster who wrote the comment above is coming from to a degree – if you’re trying to make a difference in your own way, that’s huge. It’s a huge amount of work and it can be a huge cost. And I applaud you for making that effort! That said, however, attending a conference for free so you can sit in a freezing room and munch on the unripe melon that every convention center serves shouldn’t be the validation you seek to feel that you’re making a difference. Similarly, getting a freebie before it’s released to everyone else doesn’t mean you’ve made it. It just means you now have another thing to shove in your closet or, in some cases, feel obligated to review. I don’t know about you, but I would hate that. Also, I don’t have the closet space.
And why is it the same bloggers conference after conference? Well, for one, most of them have been at this a long time. For better or for worse, time does establish some credibility. It also can be an indication of audience size, so from a corporate perspective, you want people to be talking about your thing to as many people as possible. And you want them to carry weight in what they say. Working with established bloggers provides a better chance to do this. Bloggers who have been blogging consistently for a while also demonstrate a clear dedication to the cause, even an ability to, perhaps, manage their diabetes burnout.
Finally, I would urge anyone blogging for recognition to consider if a blog is really the right outlet for their goals/needs. Blogging is a form of sharing what it is you want to say. It’s not necessarily a platform for making people pay attention. That’s their choice. If your words or your way of changing the world resonates with other people and is valuable to them, they will listen. And that’s what it should be about – not conferences or freebies.
In general, I believe the folks who post on My Diabetes Secret are brave. I understand frustrations and envy occur that can make us feel as though we’ve time traveled back to high school and its antics. But this is intrinsic in most social interactions – I just think it just hurts more when it’s around something we take as personally as the chronic diseases with which we live. But we’re still human.
I love the diabetes online community. Maybe not every single person who is a part of it. Some folks I just don’t get. But even so, I will admit to my bias. I’m sorry if this post comes off as defensive. I hope instead that it’s a reminder for all of us to examine why we do the things we do – be it attend a conference for free or blog to try to get into a conference for free (or, in my case, wonder if I have enough layers of clothing to get through any sort of conference). The doc is united for a reason (i.e. diabetes sucks), but that doesn’t make it free of mistakes and troubles. I’m thankful that someone posted about their frustration with bloggers and chronic conference goers, but I still stand by the doc, the bloggers I love and the conferences I don’t feel I need to attend. When I think of the doc, I don’t associate it with who gets what or goes where. I’m just thankful for what the doc means to me.