Tuesday, May 30, 2006

Telling (A Diagnosis Story)

I'm discovering that being comfortable with diabetes requires telling others about it, a discovery that I came to really late -- only in the last 6 years or so. Maybe it's because everything about my diabetes was secret for so long -- first because I tried to hide it (not knowing fully what "it" was) from my parents, and then because I tried to hide it from my peers.

I was diagnosed in March of 1989 -- Easter Weekend, to be exact. But I had been sick since November, and really sick since January. No energy, general ickiness, rampant thirstiness, frequent urination -- the whole bundle. Now, as a ten-year old, there was a lot I didn't know; but as a ten-year old feeling this bad I knew that something was wrong. And, I didn't read The Babysitter's Club for nothing. Stacy McGill had had all of these symptoms. But it's not like I said, "I think I have diabetes." More like there was a growing conviction that I kept pushing away, the idea that if I didn't say anything to anyone, nothing was really wrong.

There is a lot of shame that goes along with these symptoms, especially when you're ten years old and wetting your bed at your grandmother's, or worse, peeing your pants in the back of the van on a family road trip because you've already lied once to have a bathroom stop just after the last one. I think shame defines my diabetes experience for the first several years -- mostly because I let it.

So finally, Easter Weekend of 1989, I have no gumption to move. Mom takes me to the doctor while dad takes my brother to my grandma's (I think) because they must know what's coming. Blood Sugar is 467. It's off to the hospital.

At the hospital, they poke and prod; they check my blood sugar every two hours (my blood is very dark); a sweet nurse tells me I can never eat sugar again. She really was sweet, just misinformed. The hospital gown is way too big, and the pajama pants fall off of me. I weigh 57 pounds. I look like an alien in pictures from that time period.

Everything is confusing -- like when I feel so light-headed and shaky that I'm sure this must be a "low blood sugar" but I don't know what to do. I certainly don't tell. So I sneak to the snack basket, very carefully, and eat a couple of pretzels. When I mention my small snack to the sweet nurse, she is concerned -- "just don't eat too much."

Back at school, I am the Special Subject of Attention. The teachers fawn over me, the students look at me, and the school nurse comes in to show the class how I have to test my blood sugar. I go to the nurse's office every day before lunch to test, and I visit frequently for snacks.

High Profile Publicity wanes when it's off to middle school the next year. Thank goodness. And that's when my policiy of not telling begins. It's when I begin carrying a large purse with my blood sugar supplies; it's when I sneak my snacks from the desk rather than leaving class to eat them (and when I get caught by a peer, my teacher gets mad at me for offering her a snack); it's when I let myself drop lower and lower instead of excusing myself to get a snack, and when I learn that if you let yourself go long enough, you will come back up (clearly, no knowledge of hypoglycemia unawareness). It's also when I am teased for being a druggy ("what's in that big bag?") by my loving peers, and when I am too stubborn to just say, "Hi, my name is Nic and I'm a diabetic."

Thanks be to God for college dorms and the visibility of insulin pumps! I'm not sure when it exactly began, but it dawned on me that having diabetes was nothing to be ashamed of and that talking about it could help educate people (and by golly, we know that that is needed). And so now I do. This blog is part of the telling.


Violet said...

Visibility has been a complex issue for me. Pre-pump, my main struggle was with business lunches. Testing and shooting up at a table with high-level managers was just not something I could handle. So I'd leave for the restroom, which meant I'd miss part of the discussion. The pump changed that, but I still vacillate quite often on whether and when to be open with other people about bolusing, etc. There are situations in which I simply don't feel comfortable sharing my medical issues with someone I've just met, especially in a professional situation. It's not usually about shame, for me, but privacy. Then again, I think the two are closely linked, yes?

Lately, though, most of the time I just haven't had the energy to be secretive. I do what I need to do, and if questions arise I answer them. People are almost never as weird about it as I'm afraid they're going to be. Sometimes I let issues become much larger in my mind than they are in reality.

diabeticfeed said...

Congratulations on jummping into the bloggosphere!
Ironically enough, I, too, was diagnosed over Easter weekend in 1983. I, too, knew what was going on (my epiphany was answering yes to every question in a Time magazine advertisement entitled: "Do you have diabetes?"), but wasn't ready to deal with it. When I just got too tired to do anything, it was time for the disease to be named. (I've given it a number of names besides diabetes. :) )
Glad to see your voice added to the community.