Diabetes has never felt like an “invisible illness” to me. I can see the teeny-tiny puncture wounds on my fingers, the juice box that weighs down my purse, the stray test strip on the bedroom floor. The presence of diabetes is very apparent to me. But because my hair doesn’t fall out, my skin doesn’t change color, and I can walk and talk without impairment, most people don’t know that there is anything wrong with me.
Which is both a curse and a blessing, depending on your outlook.
This week, Sept. 12-18, is Invisible Illness Awareness Week and the goal is to highlight the dozens of illnesses that don’t have any visible signs or symptoms, like Crohn’s disease, fibromyalgia, lupus and diabetes. The blog prompt for this year’s Invisible Illness Awareness Week is: How can you “live what you’ve learned” about living with a chronic illness? How can you encourage someone else to start fresh?
Here’s my take on the question:
Thanks to my job and the Internet, I meet a lot of people with diabetes. Sometimes in person, and sometimes just online. Many of the folks I meet are newly diagnosed with diabetes. And they’re scared. I think out of all the emotions, fear has been the most palpable to me. Fear of complications. Fear of failing. Fear of critiques and comments. Fear of never finding love or acceptance.
The fear is borne out of the unknown. An unknown life, for either you or for your child or for the person you love. The disease itself is invisible to others, and the road of life with a chronic illness is also foggy to those of us involved. Our guidebook is a compilation of “experts” who only studied the road in school but have never traveled it themselves, folks who have traveled a similar yet different foggy road, and a compass that only shows you where you’ve been and where you are right now. If you’re lucky, you have a second compass that might show you where you’re going but hell if you know if it’s actually accurate. These tools aren’t perfect, but they’re the only things we have.
Diabetes is a 24/7 disease, and because of this, we always have a chance for a fresh start. Every day, in fact, every minute, is the chance to start over. No, you can’t help where you’ve been. The potholes you fell into, the tree branch you tripped over, the rock that twisted your ankle. Those already happened, and they hurt. But you can change how you approach things moving forward. Whether it’s a shift in your actions (like checking your blood sugar more) or in your mentality (by not berating yourself for a 206 mg/dl), there are multitudes of opportunities to pause, hold your head high, and say, “Going forward, I will not be afraid.”
What I like — if it’s possible to like something about diabetes — is that there really is a lot to be gained and learned from living with a chronic illness, especially when you find someone else who is learning how to do this too. I have never not known people with diabetes. The first people I met with diabetes were at a diabetes camp six months after my diagnosis at age 8, and I have never stopped meeting people with diabetes. And from the beginning, they taught me how to do this. How to start over. How to try something new. When I was a little girl, petrified of taking an injection in the stomach, an older, more experienced girl showed me there was nothing to fear.
It’s true that all of our roads are different. Some are bumpier than others. Some make more twists and turns. But they are remarkably similar and the guidance — not just information, but emotional and spiritual help — that I’ve received has saved my life countless times.
They’ve taught me not to give up. To take a deep breath and keep going. Because it’s so easy to want to give up. Lord knows there have been stubborn highs were I was convinced a gremlin had switched my bottle of insulin for a bottle of saline, because my BG just wouldn’t come down! It’s easy to think it’s fruitless and pointless to keep trying. It’s easy to be afraid. And it’s easy to believe that no one will understand.
I remember having a conversation with someone at a diabetes meet-up; he remarked how cool it was to see so many other people testing their blood sugar and to hear the sound of another insulin pump beeping. So many people have told me the exact same thing. It’s one thing to read a statistic on a computer screen — 24 million Americans live with diabetes — but it’s another thing to see that truth in person. I think it’s also why seeing diabetic athletes perform at the Olympics or win national talent competitions or talk about diabetes on a popular TV show is so empowering and inspiring. It’s one thing to know what’s possible with this illness, but it’s another thing to see it in action.
There are plenty of places to see diabetes in action, for example on Flickr’s Diabetes Made Visible group, where there are more than 3,000 images from everything from celebrating a dia-versary, to checking blood sugar, to smiling self-portraits. On Twitter, it’s more a written representation of the small moments in life with diabetes, which include thousands of #bgnow readings from hundreds of people with diabetes. There are Facebook groups and social networking communities. And the hundreds of bloggers who share the most intimate moments with diabetes. And we all do it so we won’t feel so alone, so we won’t feel so invisible. So hopefully someone will see us and tell us, “I’m doing this, too, and we’re going to be fine.”
If I were to tell someone how I’ve lived with diabetes for almost 18 years and suggest to them how to start fresh, I would simply say: “Don’t be afraid. You can do this. We are all doing it. And we are NOT invisible.”