For those of you that are catching up, I moderate a blog called My Diabetes Secret that hosts anonymous submissions, or secrets, from the diabetes community. These submissions are typically confessions about life with diabetes. Fears. Anger. It’s really heavy stuff. I read every single submission before queueing it up to go live on the site. I get a notification every time someone likes or reblogs a post. It all goes through me.
Lately the frequency of submissions addressing the great divide among the diabetes community have been increasing. Normally I wouldn’t write about this, as it’s sadly something I see far too often among comment threads and miscellaneous tweets and blog posts and it’s something I don’t feel properly equipped to tackle. But because this is a home that I’ve built, I can only endure so many attempts to dismantle something that I’m quite proud of despite its relative digital infancy.
I’m of multiple minds when it comes to these posts. Part of me wants to delete them. Pretend they never happened. Something along the lines of “don’t feed the trolls”.
Another mind says that this is the reality of the diabetes community; well, this is the reality of a subset of the diabetes community. I realize that the Tumblr audience is a bit younger than most of the people with diabetes I interact with on a more regular basis. Maybe, and I’m being incredibly reductive with this one, they just need time to grow up?
While I’m not going to all-out deny submissions on the blog, I’ve found a middle ground that, for now, I’m comfortable with. Rather than cross-post to Facebook and Twitter, submissions adding fuel to a fire that I want no part of will be queued for publishing, but not shared on Twitter and Facebook. Until I can wrap my head around a better way to proceed, this is how I am handling those posts.
But there’s still something deeper at play with all of this. I’m not smart enough to know the answers, but I’m naive enough to ask some questions. So here we go.
One of the big efforts I try to champion with this blog and my various social (media) efforts is awareness. Awareness of what diabetes is. Awareness of what diabetes isn’t. Awareness of what the broader diabetes community is capable of both online and off. It’s a drop in the pond, but Rome wasn’t built in a…wow, I’m just connecting metaphors. You get the idea, right?
My Diabetes Secret offers a chance for people to share a part of themselves that they don’t necessarily want their name attached to, but they are genuine feelings about their life with diabetes. While I’d rather see posts discussing more fluffy topics like the diabetes police or overcoming fears of testing or bolusing in public, the real world is not that kind. If these are the thoughts of a portion of the diabetes community, of people actually living with diabetes, of people who understand the shame and guilt and frustrations and fears and anger that comes with this disease, why are they so hostile? Why are these fears and frustrations projected on to someone else who is (or was) dealing with the exact same issues? Why are people who know what it’s like mad at others who know what it’s like too?
As I consider the various approaches to diabetes advocacy and general patient empowerment, maybe I need to spend some time helping my fellow people with diabetes instead of trying to recruit outsiders. While it’s a small sample, the content of My Diabetes Secret suggests there’s a lot of education that needs to occur within the diabetes community before the outside can take us seriously.
I know that it’s easy to view type 1 and type 2 diabetes as night and day. But the key word in all of this is diabetes. We’re all in this together.
One phrase I kept mulling over but couldn’t find a way to put it in the text above was “I don’t expect every post on My Diabetes Secret to be positive. But is it too much to ask that everyone not be negative towards each other?” This is a complex topic that can’t be solved overnight, and certainly not on a site called “A Consequence of Hypoglycemia”, but I’m tired of leaving these comments alone. These sentiments are polluting our community. I need to step up.