Thursday, November 10, 2011

The Future, Some Math, and the Reality

Today’s Prompt: The future of online activism. Our favorite social media sites are constantly undergoing renovations to become quicker to navigate, easier to interact with, all encompassing, mobile, and everywhere. Imagine the same thing about your community – how will they evolve, improve, and grow?

I didn't get involved in the Diabetes Online Community in order to spread awareness. I NEVER imagined I'd become the advocate that I am. I just wanted to share my story - tips, tricks, funny anecdotes, annoyances.

The first time I tried to start a "diabetes blog" (in 2008), I didn't have anything to say and nobody stopped by to read me not saying it. Then I started Sweetly Voiced in September of 2010 and found that I suddenly had my angle. I knew what I wanted to say.

But I still don't blog that much.

Which is why these month-long challenges intrigue me so. I wonder what I'd have the impulse or the courage to say about my life if I just sat down to write more often. Then, when the month is over, I feel a mixture of both loss and relief.

The focus of my post today is on the future of this online advocacy I've been unwittingly absorbed into.

Last night, during our hour-long weekly Twitter chat called DSMA (Diabetes Social Media Advocacy), the topic was Diabetes Awareness. We talked about what we're doing that works, what isn't effective, if the message is loud enough, clear enough, unified enough.

Two things struck me.

1. Whether or not we risk saturating our communities, our friends, and our families with this non-stop talk of diabetes - whether just in November or year-round.

2. And the fact that we were celebrating that we had over 100 people participating in the discussion.

We in the D-community often compare our message, funding, unity, etc to that of the cancer survivors community. When you think breast cancer, you think pink. You think ribbons. You think walks through the city centers. You also sometimes think about too much marketing and message saturation.

I don't give money to the Susan G. Komen walk for the same reasons I don't give money to the ADA walk. If most of the money (70% or more) goes to the overhead of organizing and marketing a walk, then the money isn't going anywhere constructive. If an organization gives most of its money to research or to making life better for patients, they are far more likely to get my dollar.

If you know or love someone who is a breast cancer survivor though, you just want that message out there. You want people thinking pink, getting regular mammograms, understanding the heartache and trial that living through it entails.

Diabetes is like that. I KNOW I have saturated my friends and family and colleagues and students with dtalk, dtalk, dtalk. They think we must live and breathe this stuff.

Well, newsflash. WE DO. One of my D-friends brought up last night that we deal with this every minute of every day 365 days a year and that it's not asking too much to have others listen. It's not that we want any of YOU to suffer what we endure. But it's nice to think we've educated you about what our days are like. How, in people who are really living healthily with diabetes, it can potentially affect every decision we make throughout the day.

But that's the weird thing. People often think that if you're talking about it a lot, you must be one of the "bad" ones. One of my best friends is a PPD survivor and laments this same conundrum. If you're talking about what you go through, it must be because you have it worse than others. It couldn't possibly be because you're empowered by the knowledge you've gained and want to make it better for the people who aren't talking about it.

Which brings me to point #2. Over 100 people participated in DSMA last night. 100 of us chatting back and forth (which is incredibly fast-paced and hard to follow). And new people join us every week!

TuDiabetes.org has 21,688 members (as I type this post) and we'll approve at least 10 new members in the next 24 hours (and sadly decline 3 times that number in spammers and marketers!).

But over 26 MILLION Americans have diabetes. 7 MILLION of them are undiagnosed or misdiagnosed. Over 8 PERCENT of the population in the US lives with this condition everyday. You or your loved ones will face this.

And unless you're on our side of the fence, and sometimes even when you are, there's a lot you don't know about living with it. There's so much misinformation and snake oil and so much your doctors and nurses will tell you that is inaccurate.

One of my relative's general practitioners told her that it's normal for non-diabetic's blood sugars to go up over 200 after a meal. (Oh My God). There are doctors threatening diet/med-controlled type 2s with "going on insulin" as if it's their fault.

We ALL are on insulin. You and I both need it. We just get it in different ways. You cannot (and I repeat CANNOT) live without insulin. Either your body produces it or you inject it. And if you're a type 2, it's highly likely that at some future point, your body may no longer be able to produce the amount you need due to insulin resistance.

And your blood sugar shouldn't ever go over 140 (where cell damage begins to occur). It should rest around a comfortable 90 most of the time. You and me both, actually. It's just not possible for me 24 hours a day. I'm lucky to be in range 50% of any given day. Never in my life have I had 24 hours of in-range numbers. Not a single day. And yet, my A1c (which is like an average) is a full percentage point lower than the ADA recommended level for healthy people with diabetes. I'm one of the ones doing it particularly WELL.

So, anyway, back to my point. If less than 1 per 1,000 of Americans with diabetes are part of the social network where I volunteer and less than 1 per 200,000 of Americans with diabetes are chatting with me on DSMA, are we reaching enough people through social media? Do people have enough information? Enough support?

I feel a little less bad about saturating you with this message now.

Until every health care professional in this country is better educated about a condition that will affect 8% of their patient base...

Until every insurance company has stopped placing restrictive limits on how often a person may test their blood sugar or on whether they may purchase a device/meter/pump/continuous monitor their doctor feels they need...

Until people with misconceptions about their own diabetes stop saying things to me like "Oh, 300s won't hurt you. I stay up over 300 and I feel fine." (said to me by the man who installed my wood flooring 2 years ago)...

Until people stop believing that insulin is a cure for Type 1, that you can outgrow it because it's referred to as "juvenile," that "all you have to do" is test your blood sugar and take your medications, that it goes away if you change your lifestyle, that Type 2 can be cured or reversed, that Type 2 happens because you're obese...

I will continue to raise my sweet voice along with the 1 in 200,000 committed enough to tell it like it is.


In the meantime, if you feel you just can't take any more dtalk, ask me about something else over a cup of coffee and I'll enjoy the breather, too.

But know that in the back of my mind, I still have to be thinking about my blood sugar and how much insulin to take for that coffee and how many tablespoons of creamer I had to eyeball as I poured it and whether I feel shaky because of the caffeine or if I feel a low coming on and whether the tape around my insulin pump is starting to peel and whether or not this is going to push me higher by dinnertime and...and...and...


This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J.

3 comments:

  1. Great post, Melissa! Keep up the awareness.

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  2. Jess and I were talking a few nights ago about how much we are enjoying reading your posts this month and how you NEED to blog more!!

    I hope this November will inspire you to keep posting! You've got a great voice - and I don't just mean singing ;)

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