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Discovering Health.

Last night, I had a chance to attend the premier of Discovery Health's documentary, Diabetes:  A Global Epidemic, held at the Museum of Natural History in NYC.  The documentary follows former American Diabetes Association president and head of the Center for Endocrinology, Diabetes and Metabolism at Children's Hospital Los Angeles, Fran Kaufman, around the globe as she visits different countries and explores their ways of managing diabetes.

The documentary itself was very interesting, focusing heavily on the education aspects of diabetes management.  I agree whole-heartedly that education is completely necessary in dealing with diabetes - I can't count how many times people have said to me, "You have diabetes?  Aren't you a little young / old / thin /  for your disease?"  Although it wasn't the focus of the film, the fact that people aren't educated about the different types of diabetes continues to amaze me, considering how diabetes doesn't discriminate and affects so many.

It also frustrates the hell out of me.  I've written before about how being perceived as "healthy" makes me fear that my disease isn't worth the effort to cure.  "You look healthy," they say.  And they're right.  I feel healthy, too.  What they're not seeing is the effort that it takes to remain healthy.  These well-meaning strangers don't see my midnight blood sugar checks.   They don't see the furrow of worry on my mother's face when she talks to me about my future children.  They didn't watch me slip on my little black dress last night, only to have the pump impossible to negotiate in the folds of my dress.  The public responds fiscally to a six year old with tears in her eyes, but a seemingly-healthy twenty something doesn't garner much fundraising.

It all sounds insignificant sometimes, whining "Where, oh where, will I stash my insulin pump that I am so lucky to have access to in the first place?" but I find myself feeling angry and frustrated at the lack of progress being made at times.  I've been very fortunate to have access to a glucose meter in my home for almost my entire diabetic life.  I've had access to the pumping technology for almost four One light.years.  For all intents and purposes, I am a very lucky woman.  I have a good life.

But there are days when the frustrations rise up and I can't swallow them down.  Watching all these media events leading up to World Diabetes Day and seeing how much people are trying to raise awareness of what life is like with diabetes ... this effect could be staggering.  And empowering.  The effects of these events could reach into the consciousness of our whole society and change perceptions, change intentions .. change the very tides. 

For those of us living with diabetes, we know what it's like.  Our awareness is already raised. 

Now give us our research.  Give us our technology.  Give us our cure.

Comments

Kerri

Try being a relatively healthy 50-year old.

I think is the reason why so many people are getting involved in the Diabetes365 Project. We're trying to give people a view into what living with diabetes is like and how it demands your attention 24 hours a day.

I agree, Bernard. I can imagine being a healthy almost-50 year old (thanks to your example!). Diabetes365 is a project definitely to be noticed. I hope people are seeing how much it takes to manage this disease every day.

I am not exactly sure why this made me cry. I think it was the ending. Thanks for the review and for speaking out about your frustrations. I feel exactly the same way, and I am sure many members of the diabetes community do as well.

I can't even imagine what it used to be like to deal with this disease. I am one of the lucky ones that was diagnosed this year (at age 52)when technology is light-years better than people who have dealt with it much longer.

AMEN! I agree. Even though I raised a good deal of money on my own for my JDRF walk, I wonder if I was 8 years old again, how much more I could have raised.
Diabetes is an all day ever day thing for us.
Education is the key to helping a lot of people deal with diabetes.

You said it all, Kerri. Thank you. Just, thank you.

While I am just beginning my journey with diabetes, I have already experienced that altered perception of health. As an adult, my life has completely been flipped around. No one, even my closest friends see that. They've seen me as healthy, since I came out of the hospital. I also got the phrase," Well at least it's controllable and not...(insert disease here)"

Controllable is relative, and it still doesn't mean there aren't struggles. For instance, I was thinking about a wedding, now I'm worrying about how I will be able to handle a pregnancy or if my children will get it.

I would agree that education is sooo important, and remind people that appearances can be deceiving.

You said it, sista.Thanks for another thoughtful and spot-on post.
It seems like everyone wants you to either be healthy and disease-free or be ravaged by your illness where everyone can see it...people with chronic diseases have it rough, because everyone else just doesn't get it. Thanks for being a great voice for us!

Thanks for your support of our project, Kerri!

I wrote something similar today and I agree that we are "lucky" in some senses of the word, but that doesn't lessen the frustration at times.

It's World Diabetes Day, and you know what? I'm feeling pissed off. They didn't mention type 1's once in Taiwan today.

What a fantastic post.

Thanks for the info on this, Kerri. I've DVR'ed it so I don't miss out. This subject is something I've been interested in exploring for a while and just put it on the back burner for too long. I'm excited to watch the series.

I had the same feeling recently about the image people have about juvenile/type I diabetes regarding children vs adults. As a Type I for 24 years, I participated in the JRDF walk for the first time this year. The whole opening ceremony focused on children. Even JDRF's pre-walk workshop almost exclusively encouraged playing up the sympathy card for kids when creating a personal page or letter. I guess a forty-something guy doesn't quite generate the same "awww" appeal a dimple-cheeked little girl does...heh. I did manage to raise over $800 anyway. :)

Thanks for the great blog. Keep it the good work!

Hi Kerri, Just wanted to say that I can relate to your frustrations and to let you know that is a great link to the survey at the bottom. I went and took the survey

I agree Kerri - it is frustrating.

That's why I think it is so great of you and the rest of the blogosphere to be so active in helping people understand.

I think the photos in the diabetes365 are making a huge impact as well.

Thanks for doing what you do!

The ladies in pink tee shirts get attention, because we never give up. We are out there racing and walking and having you feel up fake boobs with a purpose and a mission. The thing I've learned is that almost everyone has a mom or an aunt or a sister or a co-worker or somebody they can relate it too. The same can be said so much more so for diabetes. Almost everybody knows a diabetic they care a lot for. So just don't give up. Get out there and keep telling them that a cure can be found and that until then people need treatment. It is so worth the effort.

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