Today we’re marking National Invisible Chronic Illness Awareness Week, a worldwide effort to bring together people who live with unseen chronic conditions by sharing their stories. Running through Sunday, Sept. 16, this annual online initiative is now celebrating its first-decade anniversary.
A year ago, I shared a simple message: My diabetes can be visible on my own terms, so if I want to wear it on my sleeve, that’s my choice. But if I choose to keep it on the down-low and not share it with the world, then I have that luxury most of the time, too. Key words: On. My. Own. Terms.
That was at the top of the Invisible Illness 30 Things Meme I wrote back in 2010. Not much has changed since then in terms of my personal “invisible illness motto.”
I’m participating now on behalf of the ‘Mine for the same reason I did then: Because it’s important for people to know that just because you can’t see our illnesses and we don’t “look sick,” it doesn’t mean every aspect of our lives isn’t affected every day by this compromised health we live with.
This year’s theme is “Invisible Illness? Share Your Visible Hope!” which encourages people to post images of things that give them hope — anything from a sunset or pet to a grandchild or favorite work of art.
In my case, it’s neither sunsets nor paintings. Rather, two “images” that come to mind for me specific to what gives me hope regarding my “invisible” type 1 diabetes are:
1. That device clipped to my belt that isn’t a beeper from 1994 and isn’t a phone or PDA, either. Actually, it’s an insulin pump. Aside from helping me better manage my diabetes by fine-tuning the insulin doses going into my body, it also is a tool for flexibility in my life that allows me to adjust the level of sharing I want to do with others. Personally, I wear on my belt 99% of the time. People can see it and comment on it. I have a backup pump that I’ve actually decorated with an American flag skin, almost making it a purposeful conversation-starter.
And when there are other people with diabetes around — oh man! It’s almost like a Bat Signal or honing beacon alerting them to someone “like them.” This public connecting is something I’ve seen increase in recent years, as I’ve gotten more vocal about my health and made it a more visible part of my life. Sure, I don’t always want diabetes to be a part of the conversation and trump everything else about me. But the beauty of my pump is that I can wear it out in the open, or choose to conceal it, so I have the ability to decide for myself how much connecting, or advocacy or educating, might be call-for in any given situation. (Of course there are always some dingbats who can’t deal with the visibility — let ‘em squirm, I say).
2. The Diabetes Online Community. Yep, a whole bunch of people coming together in an ever-expanding online world where we can share, laugh, cry, learn, support, and be friends. As we’ve said again and again, this is a place where our diabetes can be mega-visible, yet it doesn’t have to be the focus of our conversation if we don’t want to. Here I find people like me, who “get it” and motivate me to better manage my health.
Not only is the DOC a place of support and education, but it’s a place where people with diabetes can find hope — often when they need it most. Everything from Facebook and Twitter, the blogosphere, social networking communities and videos like the You Can Do This Project and You Are Beautiful.
I actually enjoy sharing my diabetes with people in this community, and even though that means it becomes a little more visible to the rest of the world, it’s worth that trade-off to have access to a community of individuals standing ready to help me shoulder a High or Low blood sugar experience or to celebrate an A1C or “No Hitter” blood sugar victory with me…
Both of these “images” fill my mind with hope. They show me daily that I’m not alone, and that if and when there’s a desire for me to make my diabetes more visible to the rest of the world, I can do that with confidence and finesse.
It’s nice to know I have options: I can disconnect from my pump or wear it discreetly in my pocket, and I can go offline at any time I choose — I can go all Invisible Man.
But there’s hope in this commitment to visibility, one that allows us to share and find the support we need when we need it, and not be afraid or compelled to hide the lives we truly live.
But rather, to make these lives more visible to the rest of the world, so that others like us — as well as healthy folk who wish to help — can better understand that life goes on with a chronic condition.