(No Longer) an Invisible Illness

The one thing I always liked about diabetes, the only thing, was that no one had to know I had it. During my adolescence I kept my disease a secret from boys that I liked. I didn’t want them to know I was different, didn’t want to give them a reason not to like me. I made my disease so invisible that friends would often forget until I had a low blood sugar, and started stumbling or talking funny.

“Oh yeah,” they’d say, “I almost forgot you had diabetes.” I was proud that I’d done such a good job of acting like everyone else, proud that no one noticed when I slipped off to the bathroom to test my blood sugars or do a shot. But I also felt alone.

Eventually, as my self-confidence grew, I started letting my disease out of hiding. I told the boys that I dated about my diabetes soon after I met them, and was surprised to learn that no one thought it was a big deal. I knew I’d met the man I wanted to marry when he handled a messy low-blood-sugar episode with surprising calm.

When I became pregnant with my first child and learned about the correlation between tight blood sugar control and a healthy baby, I thought I’d try wearing an insulin pump. I’d resisted the pump in the past because it made my disease visible. But I figured pregnancy would be the perfect time to wear the pump; my body would be changing, and I would no longer care as much about my outward appearance.

So I checked into the hospital where I was to spend the night being monitored and learning how to use the pump. It was my first trimester, and I was barely showing, but my stomach was beginning to strain at the waist of my pants and I was eager and anxious to start wearing the maternity clothes that were hanging in the closet. In the hospital room my diabetes educator, Jane, attached the black, plastic box to my stomach and sat by my side, demonstrating how to work the buttons. When Jane left the room, I let the fake smile slide from my face, and bared my teeth to my husband and my mom.

“I hate this,” I said. Mom and Dale stood by my bed and offered words of encouragement. The next day I checked out of the hospital and made a deal with myself that I would give it a week. If I hated it at the end of the week then I would remove it, and at least I’d know I’d given it a try.

Jane told me wearing the pump would be like wearing a beeper, but the pump was nothing like a beeper; it was big and black and stuck out under my sweater, making an obvious square on my side where no square should be. I could feel it in my sleep, driving to work, and when I put on and took off my clothes. I’d been wrong about not caring about my appearance when I was pregnant; I wanted to rub my hands over my smooth, growing belly free of the ugly black box. I was already starting to feel like my body belonged to my unborn child, and the pump felt like an invasion of our shared privacy. Wearing the pump made me feel more aware of my disease than any other time in my life; it made me felt like I was walking around a hospital, dragging an IV behind me. For the first time since I’d been diagnosed, wearing a pump made my disease visible. After three days, I broke the deal with myself and yanked the thing off.

“Forget it!” I said to Dale on day three shoving the expensive piece of equipment back into its box. I would maintain tight control the old-fashioned way.

I worked hard during my first and second pregnancies, and am now the mother to two healthy sons. I tested my blood sugars ten times each day, walked every morning instead of running so I would get the benefits of exercise on a more moderate level, and ate balanced, unprocessed, home-cooked meals. Instead of snacking on popcorn and milkshakes like my pregnant co-worker, I ate Balance Bars, designed specifically for diabetics. And every time I began to grow resentful, I’d remind myself that for the first time in my life, my blood sugars were streaming through two bodies. It was no longer just about me. And while my disease is out of the closet, I’m realizing that it’s still invisible to my children — that keeping it at arm’s length because I wanted to protect them has kept a part of me inaccessible and out of reach.

It has been seven years since I tried that pump, and once again, I find myself thinking about wearing a pump. Pumps have changed in the last few years, and the one I want is small, cream-colored and remote-controlled. My endocrinologist recently mentioned that a rep from the manufacturer was coming to her office, and I could come listen to his pitch if I was interested. So I picked Miles up from pre-school, went to her office and let the rep attach a trial “pod” (filled with saline) to my waist. Miles watched the rep attach the pod to my body with interest, and I asked, “What do you think?”
“It’s great,” he said. I wore the pump home under my sweater. Later that afternoon, we picked up Will from first grade and I pulled up my sweater so he could see.

“If I wear this, I won’t have to do any more shots,” I explained. He came closer and reached out his finger to touch it. “What do you think?”

“It seems good,” he nodded his head thoughtfully. “I like it.” That night as we were lying in bed reading books my shirt rode up over the pump, and I kept reading, but watched as both boys looked down at my belly. Miles pushed at it roughly and I had to direct his hand away.

“Careful.” I wanted them to ask me questions so I could get a sense of what they were thinking but they were quiet and returned to the story. On the third day of wearing the trial pump, as I’d been instructed, I peeled it off my skin. The boys wanted to look at it and they held it carefully in their hands, gently feeling the tiny, plastic tube that had been in my skin. Miles wanted to wear it, but when I told him I could tape it to his tummy, he changed his mind.

I’ve completed the insurance forms and am waiting for the pump to arrive in the mail. I’m nervous about wearing the pump, but I think I’m ready. I think this time I can do it. I think I’ve shoved my disease in a closet for all these years because I didn’t want it to be the first thing people noticed. But I’m realizing that all this time, I haven’t given myself, or the people around me, enough credit. I’ve realized that in making my disease visible, I will be bringing my sons into the conversation, instead of shutting them out. I thought I was protecting my boys from my disease by staying in good control, trying to never let them see the scary side of diabetes, but I’m realizing now that I was wrong, that I was fooling myself. It’s me I’ve been hiding from, me I’ve been keeping at arm’s length. I’ve been keeping a part of me invisible to my children. Maybe now, after all these years, I can stand tall, and proud, and really see myself.

Amy S. Mercer is a freelance writer living in Charleston, SC with her husband and two sons. Her essays have been published in skirt! magazine, A Cup of Comfort for Writers, Diabetes Forecast and Literary Mama. Amy is pursuing her MFA in creative writing at Queens University and working on a book about living with diabetes. She was diagnosed with Type 1 diabetes twenty-three years ago and is in great health, free from complications. You can read her blogs at www.alsmercer.wordpress.com and www.chronicmamas.wordpress.com.