Monday, August 16, 2010

I Am A Diabetes Butterfly.

I'm not sure why it took so long, or why it was that particular moment in time (among so many others chances and opportunities) that it began, but the last year or so has been pretty transformational for me. (Speaking of a year ago, I have a great diabetes-related story in regards to my wedding day, but that will be saved for a future blog post. Okay, okay, it wasn't great while it was happening, but even at the time, I recognized that it would make a great story some day. Actually, we have two great stories from that day, that weren't so great at the time. Wait, what was I going to write about again?  I digress.)

For many of the 24 years I've had T1, I have felt... alone.  I eventually got to a place where I felt that living with diabetes was solely my burden to bear, and even if I could find someone to share the load of this disease, they wouldn't really "get it" -  because they weren't living it. I didn't think anyone could truly understand the emotional toll it takes, or that looming, distant yet threatening villain Complications, or legitimately sympathize with the never-ending annoyances and inconveniences it brings. I could throw myself a pretty epic Pity Party when I wanted to. 

I went to diabetes camp for a couple of summers, and that helped, for the week of camp and a few months thereafter. But, like with so many other people in your life, you grow apart. The phone calls and letters become fewer and fewer. We all had our "real lives" to go back to. (And this was waaaaay before email. Or internet. Or electricity. Okay, maybe not the last one.)

And so, for many years I was, for all practical purposes, the only type 1 diabetic I knew. I knew "others" existed but didn't have any close connections. I'd meet someone else here or there with T1, but never felt or stayed close to them. I can't recall ever sharing "war stories", or comparing notes past what type of insulin we used, or what doctor we went to. I was connected to JDRF through the annual Walk to Cure Diabetes, but never took advantage of any of their support groups or resources. I just planned to live it all out on my own, I guess. Did that make me... tougher? Was I proud that I could do it on my own, to put on a happy face when needed, only to let it all out in a tearful wooooosh when no one was looking? Maybe. I'm not sure. The "logic" that persuaded me down that path doesn't make much sense to me now.

JDRF sends out a Life With Diabetes newsletter periodically, which I would browse through, or not. (It was my fight, right?  No one gets it!) One semi-turning point I do recall is seeing a little article on the side, with a woman my age, diagnosed the same year as me, who was writing about her life with diabetes. Her name was Kerri, and the email mentioned her blog. I clicked on the link, and correspondingly something clicked inside of me.

One blog led to another. I found entire online communities of other T1's, and they shared the same frustrations and challenges I did. And they could joke about it! They'd talk about things that people without diabetes wouldn't get, and I felt like I had been let in on the most awesomest inside joke ever. I could ask questions like "How long can I let the "low battery" alarm go on my insulin pump before I actually have to change it?", or "When I'm running, I tend to drop low, but then spike really high afterwards. Why is that?", and get immediate, compassionate answers to my concerns. 

Soon, I felt a need to return this great gift that had been given to me. The wash of support made me feel that I had been given more than I needed to fill the hole I had, and I wanted to share that remainder with others. I found JDRF's Online Diabetes Support Team, and became (and still am) a volunteer there. I also wanted to give back to one of the online diabetes communities that had helped me so much, and became a volunteer moderator for Juvenation as well. (I'm also signed up as an Advocate for JDRF.)

And, in June, I started this blog. (I'm still undecided on how open I want to be - there's always that lingering fear that full disclosure could cost me a job offer someday, or some other similar situation.  Hey, T1 isn't cheap!) 

In short, the Diabetes Online Community (DOC) has played a huge part in shaping how I view diabetes, and myself, in the past year. Everyone in the DOC has been pretty awesome, and I'm just trying to keep up, really. We're all here for each other, to fight another day. Type 1 is a team sport, right?

What I'm trying to say is...  thanks, everyone in the DOC, for helping me to share my burden. It doesn't feel as heavy anymore.


  1. i'm so glad we're diabetes buddies :o) i felt the same way for a very long time and juvenation has helped show me that i am not alone and others can help me through the rough times. "meeting" people like you has shown me that diabetes is manageable. you're the best kind of friend to have :D ~C

  2. It's nice to know I'm not the only one that feels this way. I often long for contact with some other T1's since my husband (God love him) just doesn't understand sometimes. I love reading other people's take on the disease we share. Thank you.

  3. Couldn't have said it better myself! You captured it all perfectly - the awesomeness of the DOC, that is a life-changing and inspirational part of so many lives now. Mine included. And isn't it just so very interesting how Kerri was the one who got so many of us into this?!?! Gotta love that. Anyhow, it is so great to share the online space with you and the others and looking forward to keeping up.

  4. I love hearing others' war stories, it makes this disease so much more bearable!

  5. The DOC has completely changed my d-life for the better, and I'm so glad to hear that you have found some of what you need here as well.

    I'm also glad that you decided to share YOUR story with others here. Somebody will identify with you just as you did with Kerri, and another person will be helped. Thank you for your courage.

    The great thing about blogging or being online like this is that you can be as open or as guarded as you are comfortable with. Makes it easier to jump in. :-)

    Thanks again for all you do!


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