You may have heard about a new campaign in the Diabetes Online Community called WalkWithD.
This is NOT one of the many initiatives popping up to commemorate National Diabetes Awareness Month in November or supporting the big upcoming World Diabetes Day frenzy. Nope, this one is an ongoing effort to quash diabetes stigma that so many of us face on a regular basis, throughout the year.
It began with a meetup of diabetes advocates, whose minds got churning about diabetes stigma and the thought: What if we could address that ever-present stigma, without actually ever saying the word "stigma"?
What came from that discussion: an online story-sharing effort found under the hashtag #WalkWithD. The aim is to help others see our side of real life with D, and as a result, people may get some insight that helps dispel some of the stigma and negative attitudes that exist around diabetes.
The D-friends behind this are the same group of advocates who created the widely popular and successful Spare a Rose, Save a Child initiative for Valentine's Day. You might recognize their names: Adam Brown and Kelly Close from diaTribe, Bennet Dunlap of YDMV, Manny Hernandez of the Diabetes Hands Foundation, Jeff Hitchcock of Children With Diabetes, Scott Johnson of Scott's Diabetes, and Kerri Sparling of SixUntilMe.
Like Spare a Rose, this new #WalkwithD initiative is also hosted by the Partnering for Diabetes Change (P4DC) coalition, established in early 2013 and backed by JnJ with the goal of creating collaborative, community-building efforts focused on diabetes.
The core idea here: You don't "get" someone else's experiences until you've "walked a mile in their shoes."
Pretty laudable goal, right?
We thought so. Actually, it digs right into the core value of online patient communities. Remember, the whole online universe of diabetes-related blogs, tweets, pictures, and status updates was born of that same purpose -- to share our stories and connect with others, in order to show the "real side" of diabetes. And maybe, just maybe, we'd dissipate some of the existing myths and misconceptions in the process...
Yes, as the #WalkWithD posts will tell you: This is no longer a world in which some disconnected editors use clip-art and stock photos to illustrate life with diabetes. It's about us talking turkey about how all this works in real life.
The WalkWithD page is setup on the P4DC site, which uses Tagboard, a hashtag curation tool, to compile all the posts referencing the campaign hashtag from various social media platforms like Twitter, Facebook, and Instragram. Getting involved is as simple as that: just tweet, update a Facebook status, share a picture, or write a blog post including the hashtag #WalkWithD to be sure it's recognized and counted. Your posts then automatically get scooped up by Tagboard and appear on the campaign site in collage form.
The organizers say there isn't yet a clear plan on how all of the posts and shared stories will eventually be presented or used; so far it's been about spreading the word just to encourage folks to participate.
In the first month or so, there's been a decent response from the DOC (Diabetes Online Community). As of late last week, here's what the stats show:
And here's a snapshot of what some in the DOC have been sharing under the #WalkWithD hashtag on Twitter:
— Julie (@julie_unruly) October 20, 2014
— Hannah Scruggs (@imperfekshun) October 13, 2014
— Stacey Simms (@staceysimms) October 14, 2014
— Jere (@integraljere) October 17, 2014
— Rachel Kerstetter (@ProbablyRachel) October 15, 2014
Without a doubt, there's a lot of D-stigma in the world. It's an issue that is starting to get more attention, and we're happy that the issue is coming to light. That's why we're totally on board (pun!) with this WalkWithD initiative and look forward to sharing our own stories to help take a punch at existing stigmas.
For me, two recent situations come to mind that seem apropos to share:
Stigma 1. Diabetics Can't Do Normal Stuff - My wife Suzi and I were recently on vacation in the Upper Peninsula of Michigan, but of course there's no vacation from diabetes... On a rainy afternoon, we were visiting a shipwreck museum that's lodged in an actual early 20th Century ship, now permanently stationed in the Soo Locks. We were quite intrigued and I was tuned in to the museum displays with laser-sharp focus when suddenly, the Dexcom started frantically vibrating on my waist.
It was like a mermaid, stealing my focus and luring me toward my demise. Low blood sugar! In the 50s with down arrows -- thanks to all the vacation walking. Turning to my backpack, the realization hit that we weren't carrying anything at all to treat this Low. At that point, I started feeling the symptoms and could feel my vision blurring. I needed some juice or candy quickly! Of course, this is also when Suzi decided to ask me if I needed help or wanted to leave, and I quickly and stubbornly shot back "No, I'm fine!" as we tend to when low and irritable.
After a few minutes I was dropping even lower, so we made the decision to leave the museum for a bit and go to the car where I could drink a juicebox and recover. As we did this, my mind was screaming, "See, you're just reinforcing the stereotype that people with diabetes aren't able to do things like normal people can!" i.e. You Can't Do This, because you are limited by D. I felt so crappy at that moment, we almost didn't go back inside. But we eventually did, and enjoyed the museum. After mulling this over, I was able to clear my head and come to the conclusion: Hey, I'm just like everyone else who forgets something and has to change up their routine. But instead of misplacing my car keys or work papers or forgetting a deadline, it was a juicebox that I'd forgotten. It happens...
Ironically, this was me fighting my own sense of reinforcing a stigma. But I think that's an important point: We ourselves have to push these negative notions aside.
Stigma 2. No Way You Can Eat That - A friend recently made a comment that really annoyed me. We were out to dinner and when a particularly large dessert was served, he made a comment that I "couldn't eat that chocolate sundae without going into convulsions." Yes, it was a joke. That line is something we hear often in the general public, from those who don't understand the nuances of type 1. He was more likely thinking about a hypo than a high blood sugar with this "convulsion" comment, which is typically uninformed - ugh!
But what really bothers me is the joke itself, how often people tend to imply that "I can't eat that because I'm diabetic, and if I do the consequence will be some dramatic health issue." Most often I have tried to ignore such comments, and/or laugh them off, while once in a while I'll actually take the effort to spread a little D-education about "as long as I take insulin" or "No, that doesn't happen." Maybe it's time for me to start raising the bar on my responses, and to make it clear that I am bothered by this type of comment.
To me, that's what this whole WalkWithD campaign is about -- being open and honest about the many such situations we experience, so hopefully others can learning something.
We online activists are asking a lot of people these days, with all kinds of advocacy and awareness efforts that seem to be cropping up every day: please tweet this and email that...
But we think this one is different, because it's an ongoing initiative that requires nothing but some good 'ol simple honesty, and hopefully can spark meaningful conversation about what it means to deal with diabetes in real-life situations, all the time and everywhere we eat, sleep, live, work and socialize.
Will you join the D-Community in sharing your #WalkWithD? Click here to learn how to add your two cents.