The longer I have diabetes the more I feel like I live somewhere in between. In between how the world defines sickness and health. In the last few months I've had a number of people say to me that they don't think of me as having health issues because I'm so energetic and full of life. They think of me as healthy. Which I am. Healthy, with diabetes.
I'm glad that's how they see me, don't get me wrong. I strive for vibrancy and try to lead with my whole self rather than my disease. Having said that, I've worked incredibly hard at finding the right visibility for my diabetes, first to myself and then to the world around me. There's too much stuff I have to do as a diabetic to just get to square one. I'm not going to erase that reality just to fit in or pretend that I'm like other people who don't have diabetes. The dance therefore becomes one of balance, of what to show and what to keep private and quiet. I never lead with my diabetes, mainly because that's not how I primarily see myself. But the fact is that diabetes is inextricably a part of me and has deeply and profoundly effected who I am. I don't lead with diabetes, but I don't hide it either.
What I've struggled with lately, is because I am healthy with diabetes, when I do reveal a diabetes challenge I'm experiencing, it often goes unheard. Or worse yet, is dismissed because "I'm so healthy". It doesn't come up a lot, but when it does, I often find that I need to reiterate the issue a number of times before it's noticed. It seems the world sees people as either sick or well and what I'm realizing is that I'm neither, and both. Neither wholly one nor the other, and both, to a certain degree, all the time. Good days and bad ones. In control and not. Up and down. With diabetes it's never static and so, the usual definitions of health don't really describe my life.
And that can leave me feeling invisible or inauthentic or left out or alone at times. And that never feels good.
So what I'm working on is how to find the right tone of voice, the right volume, the right balance of lead and reveal. I'm certainly not there yet, but I'm working on it, which helps, suprisingly. My goal is to be fully whole, fully present to myself and the world around me in terms of my diabetes. My goal is to be fully healthy and vibrant in this life in between.
Birdie,
Thanks for another thoughtful and lovely post. I always feel excited when I see a new post from you. I find you have a way with words, with thoughts and images that help me to express what I've been feeling, but haven't been able to say just right. Many times I just want to say "ditto."
So, "Ditto."
It's a balance--am I healthy or not? Am I revealing too little or too much to some? Do I want attention around my diabetes struggles or not? Do I want advice or support or do I want to be left alone? Some days, I just don't know.
Posted by: Amylia | October 22, 2007 at 09:57 PM
as always, a thought provoking post. my daughter (dx 8, now 11) had a rough day yesterday, her site yanked out four times when the tubing caught on school books and door knobs. this rarely happens, so something must be going on karma-wise.
anyway, she wears her pump in a pooh bear cell phone case on her waistband. i suggested she slip the pump into her pocket and tuck the tubing in, too, to avoid more pulled sites.
her response: that would be like i was hiding something ...
i didn't get it, but after reading this, i think i am closer to understanding.
thanks.
Posted by: anonlurkermom | October 23, 2007 at 08:00 AM
My sentiments exactly, Birdie!
Did you see this: http://www.diabetesmine.com/2007/10/gesundheit.html
Best,
AmyT
Posted by: AmyT | October 23, 2007 at 04:39 PM
I can understand exactly what you are writing, and it is nice to see others sharing what we all feel!
Posted by: Drea | October 25, 2007 at 05:23 AM
I'm often struck by how so many of us are feeling the exact same things (you really have a gift with putting those feelings into words).
It is a real testament to just how alone and isolated daily life with diabetes can be.
Posted by: Scott K. Johnson | October 25, 2007 at 04:02 PM