People with Diabetes are Dying for Some Attention
30 Jan
Do you think diabetes will be cured in my lifetime? That’s the question I asked my son a few days ago as I pondered the subject of this month’s DSMA Blog Carnival: What is the one thing you are looking forward to in 2012? (If you’re new to diabetes acronyms, DSMA stands for Diabetes Social Media Advocacy—an online diabetes community designed for sharing and support.) Jonathan, who always impresses me with his vast depth of knowledge on any obscure topic, proceeded to give me a full explanation about how diseases aren’t going to be cured, per se. It’s more a matter of changing our environment so that they can no longer exist; that, and something about active versus passive nanotechnology. (That’s where he started losing me.)
Compliant patients keep diabetes out of the limelight
Every now and then I let my mind wander into the fantasy world where my diabetes no longer exists. That’s right…gone forever is my trusty insulin pump (and the accompanying Medtronic Minimed supply orders), blood sugar testing stuff, insulin, endocrinologist appointments (I would miss seeing Dr. Cohen) and everything else that goes into being a compliant person with Type 1 diabetes. It’s actually a nice little world…but most of the time the dream doesn’t last long because reality hits as hard as a sudden drop in blood sugar…My diabetes isn’t going anywhere anytime soon. It’s not that research isn’t being done, or funds being raised to help find the cure…Diabetes just doesn’t get that much attention from the general public.
Insulin is not a cure
Ironically, the thing that keeps me alive—insulin—is the thing that keeps diabetes from being the disease de jour. By successfully living with diabetes, most people (talking general public that still believes insulin is a cure) thinks diabetes is not that terrible of a disease. Those of us who work hard to maintain normal blood sugars and live a healthy lifestyle actually make the seriousness of this disease take a backseat to other deadly diseases like cancer and HIV/AIDS. In some ways, good A1C scores result in less urgency to find a cure…and less interest from those around us.
Diabetes is like a world class violinist that nobody stops to listen to
Imagine if you were one of the most renowned violinists of the 21st century, your instrument of choice happened to be a 1713 Stradivarius worth almost $4 million dollars, you decided to give a free concert to the public…and no one stopped to listen. Joshua Bell could tell you how that feels. It’s exactly what happened to him 5 years ago when he participated in an experiment dreamed up by Washington Post columnist, Gene Weingarten. Watch what happens when an award-winning violinist—dressed in a baseball cap and jeans instead of a tux–plays world class music at a subway station in Washington, D.C.
Of the more than 1,000 people who walked by him that day, only seven stopped to listen, and only one recognized him. (By the way, Weingarten won the 2008 Pulitzer Prize for feature writing for his article on the experiment.)
If I stood in the middle of the subway station to check my blood sugar and bolus a few units of insulin, I am pretty sure no one would stop for me either.
Inspire more Diabetes Advocacy in 2012
What I am looking forward to in 2012 is a chance to invite more people who have almost no connection to diabetes into the circle of advocacy. How to accomplish that? Maybe it’s a simple as always remembering that not everyone understands this complex disease. It’s up to me to help educate…to inspire others currently living with the disease…and remain positive that someday a cure will be found. Yes, I want a cure for diabetes in my lifetime! (Note to researchers…that clock is clicking away as I turn 50 in June.) So let’s have more of the active nanotechnology curing Type 1 diabetes in mice experiments in 2012! (I know my son would approve. He wants me to be around as long as possible. And he likes the idea of nanotechnology keeping him alive for a really long time, too.)
I realize the day where diabetes no longer exists is possible, but is still a long way off. So from now until that magical day arrives, I just want me…and my diabetes…to get a little notice.
This post is my January entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2012/january-dsma-blog-carnival/.
Terrific observations. It’s easy to get so involved in our “DOC bubble” and forget how much effort is still needed to reach beyond and get diabetes issues out there!
Thanks for being a leader in the DOC. I can tell you do a lot of work to build the community!
I agree wholeheartedly about getting people to stop and pay attention. Thanks for writing this!
Hi Maria – Yes, we can never let up on educating others about diabetes. Thank you for stopping by! Janet
Janet-
Thank you for participating in the blog carnival. A little bird told me it’s your first! I love your post for a lot of reason. Your last point rings near and dear to my heart. I agree with Karen, sometimes we get caught up in the online community-we forget about the rest of the world. I hope to make a change and start raising my voice off line:)
Cherise ~ Thank you for stopping by! Yes, this was my first time to participate in the blog carnival. I look forward to checking out the topic for February. Janet
I came to your blog on a search for a book you’d reviewed and then saw this post–I, too, have diabetes. It was a shock to be diagnosed as type 1 in my early 50s–I’ve now lived over a year with the 4-5 shots a day and it seems to be well under control, but it is a life changing experience. I’ll have to look around your blog some more.
So glad you found my blog. (I wondered if the SEO was working!) Great job on managing so well with multiple injections! (I use a pump). Lots of good blogs for people with diabetes! Thanks for reading mine today.