Here's what life is like with an 'invisible disease.' It's kind of intense.
We don't always think of it as life-threatening, but it is.
That's me with my little brother in 1990. I was 10 years old.
I know what you're thinking. I had style written all over me!
If you can tear your eyes away from the photo for a few minutes — which I understand is difficult because my bad perm and glasses that are half the size of my face are extremely engaging — I'll tell you why this picture is significant.
This was taken one year after I was diagnosed with type 1 diabetes.
We were on a camping trip in the middle of nowhere, a three-hour drive from the nearest town and emergency services, reachable only via a narrow dirt mountain road.
My parents debated whether it was safe for us to take such a trip so soon after learning that my life wouldn't be "normal" again. Because for type 1 diabetics, particularly children, not being able to call 911 can be deadly.
Type 1 diabetes is a disease in which the pancreas, which produces the hormone insulin that is necessary for converting the glucose in food into energy, quits working. It's an autoimmune disease, which means that a type 1 diabetic's body pretty much kills its own pancreas. The cause is unknown, and there's no cure.
The way a type 1 diabetic stays alive is through multiple daily insulin injections (or an insulin pump), blood glucose monitoring, and a lot of hoping for the best because often, no matter how "right" we do things, stuff still goes wrong.
I'd spent 10 days in the hospital after I was first diagnosed, learning how to stay alive. And then my family and I spent the next year learning how to live while I stayed alive.
Living and staying alive are two different things.
One year later, with the encouragement of my doctors, my parents planned carefully and we went on our trip. Very. Big. Deal.
So why am I sharing this embarrassing photo with you? Because there are a few things I'd like you to know.
Type 1 diabetes isn't all that common.
Because it has a nearly identical name to type 2 diabetes, it's easy to confuse the two and conclude that a lot of people have it. But in reality, about 1.25 million Americans live with type 1 diabetes (versus 29 million with type 2).
Type 1 diabetes never gets better, never goes away, and, so far, cannot be "cured."
It's a disease that requires managing 24 hours a day. While I know that I speak for every single type 1 diabetic when I say we're incredibly grateful for insulin — because we'd literally drop dead without it — it's not a cure.
It doesn't prevent the daily dangers of high and low blood sugars, and it doesn't prevent the long-term complications that so many type 1s face.
Being alive is awesome, though! Seriously. But it's not always easy.
I have always had access to the medications, supplies, and good doctors that are necessary to help keep me alive. That's what made my childhood trip possible, and it's a benefit I don't take for granted.
With new developments in technology like continuous glucose monitoring, children growing up today have even more options and medical support than I did. That's the good news. But it's still pretty hard. Don't just take my word for it.
This is the New York Times' day-in-the-life look at a type 1 diabetic teenager named Grace and her mom.
Grace's mom sums up the struggle, effort and energy of her daughter's daily life pretty simply:
"It's kind of overwhelming to say it, but that's the way she lives."
While some of the medical technology has gotten a little better since I was diagnosed 25 years ago, the truth is that not much has changed. Grace's life is almost exactly what my childhood and my parents' lives were like — minus the dog. (If you do nothing else, watch the video for her superhero dog. He's pretty amazing.)
Intense, right? People like Grace and I look pretty "regular" on the outside. But managing type 1 diabetes is a lot of work.
