Your Story, Your Way

Hello Diabetes Blog Week!

Day 2: Keep It To Yourself – Many of us share lots of aspects of our diabetes lives online for the world to see.  What are some of the aspects of diabetes that you choose to keep private from the internet?  Or from your family and friends?  Why is it important to keep it to yourself?  (This is not an attempt to get you out of your comfort zone.  There is no need to elaborate or tell personal stories related to these aspects.  Simply let us know what kinds of stories we will never hear you tell, and why you won’t tell them.) (Thank you Scott E of Rolling in the D for this topic.)

I think really hard before I post anything about my daughter’s diabetes. One of the reasons I started blogging was because I wasn’t reading much from people who had T1 who were also parenting T1 kids so I always intended to discuss her diabetes along with my own online. But I also don’t want to tell more than she will someday want told. I’m trying to stay somewhere in the middle – talking about my own experience which includes information about being a parent of a T1D kid. I tend to describe situations from my perspective only and not try to put words in her mouth.

So, I won’t be saying that she hates diabetes, or hates feeling different from other kids at school, or that she feels sad or lonely or angry or anything. But, I do sometimes write that she has said that she hates diabetes, or that she wishes she didn’t have to test before she eats when her friends don’t have to. For me, the story is about how I feel when she says things like that, how it might trigger my emotions about my own diabetes, the guilt I will always feel for the genetic link between our diabetes, and how a parent can try to help a child work through tough times dealing with a chronic illness. I hope that using her own statements as part of my experience isn’t a betrayal of her rights to tell her own story.

There are all kinds of other things I don’t tend to write or talk about when it comes to my own diabetes but not because of any hard and fast rules. I don’t write about A1c specifics in general though I would if it connected to a larger scientific issue I was thinking about (like when the pediatric standards recently changed). I’m not connected to people on MyFitnessPal because I don’t want to share my food failures with anyone else (bad enough that I know about them!) and I’ve had enough discussions about food choices to last me a lifetime. I might talk about food in the blog though, or on twitter (yay, #dsma chat!), on my own terms. I would rather not talk/write about the ways in which people in my life sometimes disappoint me when it comes to diabetes – that’s not fair and it would never be outweighed by all the ways people surprise and amaze me that don’t get the same kind of attention even though it is the more common occurrence.

I’m glad that the things I don’t talk about now are different than the things I didn’t used to talk about. Today, I make those choices based on the feelings and rights of those I love, the effects I do or don’t want to have on others, and what feels right and respectful to (and of) myself. There was a time when most of what I didn’t talk about had to do with shame about the feelings, the choices, and even just about having diabetes. It pains me when I read others’ tweets and blog posts and recognize those feelings of shame in what they do and don’t say. The #DOC is a place where it is all ok. I hope that we can all remember that no matter what stories people are sharing, it’s important for us to comment and let them know they aren’t alone and every story is valid.

Tell your story in your way and know that we’re out here listening.

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