Wednesday, June 01, 2011

It Get's Better for People With Diabetes: You Can Do This!

On Weds (5/5), Kim Vlasnik at "Texting My Pancreas" had a POST about a recent Google-sponsored TV commercial for the "It Gets Better" campaign which was started by Dan Savage. Mr. Savage is known for an online (mostly YouTube videos) campaign he started which began as a response to growing numbers of teen suicides for sexual orientation that were taking place across the country, from Billy Lucas' suicide in Indiana, to Justin Aaberg's suicide in Minnesota. Then there was the Tyler Clementi suicide at Rutgers University in New Jersey that coincided just as "It Gets Better" campaign was taking off.

The TV commercial for Google's Chrome browser (which is, incidentally, my browswer of choice these days, and has been for about a year now because of it's speed) features the "It Get's Better" project, and the spots premiered during the show Glee, which Newsweek called "the gayest show in the history of network TV." Whether that's true or not, Glee does focus on the perceived misfits and losers of an Ohio high school and their favored school social activity, the high school Glee Club. I am referring, of course, to the Newsweek interview issue in which the magazine featured Dan Savage and actress Jane Lynch (who stars as the cheerleading coach Sue Sylvester on Glee). To read that interview, please see The mere fact that former Fox News TV talkshow host Glenn Beck feels threatened by "Glee" (see HERE) is even more reason for me to want to watch it ... with glee!

In that interview, Mr. Savage said something I found very interesting: "I think the gay community does a disservice to a lot of gay kids when we beat the drum of 'come out, come out, come out.'" and Jane Lynch echoed his sentiment by adding "It can be really dangerous to come out to families and to school" because, the article noted, quite frequently, those institutions are the biggest part of the problem. Of note is the fact that 40% of all homeless teenagers are actually kids who were thrown out by their parents when they came out or were outed by someone else. Good, Christian parents, ready to discard their kids for being something THEY don't believe in. But this story isn't about the "It Get's Better" project, it's about something kind of like it for the people with diabetes (PWD) community.

You Can Do This

Kim's thought was that perhaps the diabetes community deserves a program like the "It Gets Better" campaign. I very much like that idea, but I would kind of like to echo Dan Savage and Jane Lynch's caveat from their Newsweek interview, I would support a similar initiative in the diabetes community only if we didn't try to "sugar-coat" everything the way doctors and CDEs too often do, depicting life with diabetes as if it was a mere inconvenience -- talk about misleading patients! Dan Savage was truthful when he told Newsweek "There's no promise that it's going to be a birthday party for you thrown by your mother for all of your life. Bad things happen, and we all die eventually. But there's enough space for you to create a life for yourself, to find friends, lovers, and a community."

Diabetes According to the Medical Profession, Featuring a Lack of Honesty

That's also my take on life with diabetes, and I think it echoes what Kim is doing with The "You Can Do This" effort which mirrors the sentiment about honest talking about life with diabetes. Rather than yet another campaign by doctors, CDEs, nutritionists who tend to marginalize the amount of ongoing effort is required to manage this disease for the rest of people's lives, we as PWD's are going to offer something that hasn't been done before: honesty about life with a chronic disease like diabetes. Anyone expecting Sprinkles the Unicorn is going to fart glitter all over the place when you have diabetes is living in Never, Neverland. I agree that we need to speak the truth in a way that the medical profession simply doesn't have the balls to do themselves: by telling things like they ARE. A comment I received on a blog post said it best: "Diabetes is not a death sentence, but it IS a life sentence." (Get used to it!)

While that's funny on the surface, the reality is that no one frankly admits what a CHRONIC disease really means. But, just as Dan Savage said, bad things happen (like diabetes) but there's enough space for you to create a life for yourself (with diabetes), find friends and a community (like the Diabetes Online Community). But we get enough misrepresentation of the truth about how livable with diabetes is from doctors and CDEs. Living with a chronic disease is neverending, and $#!tty things happen even when you follow the rules. To succeed with diabetes, this really is a marathon, not a sprint, so beating the drum of who has the lowest HbA1c is actually very destructive in my opinion, and I have NEVER shared that on any social media community (TuDiabetes, DiabetesDaily, etc.) because I think it sends the WRONG kind of message IMHO. Guess what? I have opted NOT to join these efforts!

Your HbA1c is YOURS; Don't Feel Obliged to Share It

Personally, I don't want to share that information, and I choose not to, and I find medical researchers lusting after this data to be kind of deplorable. Incidentally, while I'm on that subject, the TuDiabetes campaign that I avoided like the plague was recently chronicled in the online, open-access scientific journal PLoS ONE, see HERE for details. The authors refer to us as an "an early adopter community" claiming that success with them "may comprise efficient platforms for bidirectional communication with and data acquisition from disease populations". David Mendosa wrote about it HERE. I have always been a big privacy advocate, and let me go on record as saying, don't share ANYTHING you don't want to. If it's none of anyone's business, don't feel compelled to share it. I don't, and guess what, I still see myself as an active, longtime member of the diabetes online community.

Don't Publish Details Online You Don't Want to Share, You're Not Obliged to Share Everything

Since when did personal privacy disappear just because of the internet? Seriously. For example, my readers may be somewhat shocked to learn that they won't find my personal e-mail address online even though I am what could arguably be called a diabetes blogger veteran (since 2005!), and I'm on most social media including some diabetes-specific outlets like the JDRF's Juvenation, TuDiabetes, DiabetesDaily and a few others. It's true, because I don't publish my e-mail address, and you shouldn't feel compelled to share yours, either! (There are ways around that, as I have recently added a feature that enables me to have people contact me from my blog without publishing my personal e-mail address). This comes down to not wanting to share every intimate detail about yourself just because of online social media. You are entitled to have things you keep for yourself and you don't have to share EVERY single detail. Also, I have been known to decline Facebook friend requests from people I've never met. I would recommend that everyone think about these things, because the way things are online, there are starting to be some permanent footprints that you cannot simply erase because you think you're done with social media!

I have a camera, but haven't recorded my own "You Can Do This" video ... yet, but I'm working on it. In the meantime, have a look at some of the videos posted already on the "You Can Do This" YouTube channel (more details can be found HERE). Hopefully, this will enable a large and growing group of us in the online space to make sure others know that they are not alone in living with this chronic disease!


Bennet said...

It is my honor and pleasure to consider you a friend and my friend once again you write beautifully by expanding the topic into the nuance of real life.

Your calls for honesty and caution in what is shared are both very well made.

Pearlsa said...

Hi Scott,

I really like the fact that you are echoing Dan Savage and Jane Lynch’s advice. I have always had a problem with life with diabetes being depicted as a mere inconvenience.

“It’s easy just like brushing your teeth” I think it is because I bought into it and for the first few years after diagnoses it seemed that way.

The danger was when the honey moon ended and reality started I was not prepared. I felt like a failure and got very depressed about it. I was no longer my doctor’s pet. (imagine that)

All that said I am very happy about this project and know that the honest voices of the DOC will shine through.

Cara said...

Diabetes is tough. But I love this project because I think it will let people living with diabetes know that they have support. And there's nothing in the world like a support system (I'm sure we all know that!).
Rainbows & glitter don't come from diabetes, but they do come from the people I've met in the D-OC. You guys make my life sparkle. :)
I can't wait to get my video up.

Robyn said...

Diabetes is tough,but this project reminds us that it is manageable.