I is for Invisible Illness

II first became invisible when I was 12 years old.

My sixth grade class was reading The Invisible Man, and our teacher had a brilliant idea to turn the tale into a feature film–sort of. She borrowed a video camera from the AV department for the project, and then explained to us how she would film us as we read the different roles.

It was a low-budget production. We didn’t have costumes or an elaborate set. We didn’t even have to memorize our lines. We just had to hold the book in front of our faces and read.

Since acting skill was not a requirement to get an actual speaking part, my teacher decided the best way to assign “actors” to roles was to pull names from a hat. Everyone waited breathless to hear whose name would be pulled for the lead role.

When my name was read, I listened to the disappointed groans echoing through the classroom.  Everyone wanted the part, and no one was thrilled that I had gotten it, except for me.  A few people tried to barter with me and offered to trade their lesser parts for my starring role.

I promptly turned them all down. I knew what I had, and I wasn’t about to trade it for a “co-star” label. I was going to be invisible! How cool was that!

On the day of the filming, I stood behind the camera and read my lines. Invisibility, apparently, is very simple to achieve.

 

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Photo Source: Wyatt Wellman (CC by 2.0)

A decade later, I learned invisibility is neither cool nor simple. It’s lonely, confusing and frightening.

When I was 20, I was diagnosed with Crohn’s Disease, one of a set of conditions known as Inflammatory Bowel Disease, which is characterized by chronic inflammation of all or part of the digestive tract. This inflammation results in severe diarrhea, pain, fatigue and weight loss. IBD can be debilitating and sometimes lead to life-threatening complications.

It is also often invisible. People suffering from invisible illnesses like IBD, fibromyalgia, chronic fatigue and arthritis look fine on the outside, but they live with chronic pain and fatigue. Some days I wish I looked as bad as I felt just so a decline of an invitation to happy hour wouldn’t be perceived as disinterest. If I looked sick maybe I wouldn’t feel guilty taking up a seat in the doctor’s office.

At my sickest, people often complimented me on my thin physique. “You’re so skinny,” they would say, or “You look great! What are you doing to lose weight?” I didn’t think telling them, “Eating makes me feel like I’m digesting glass,” was appropriate, so I just smiled politely and kept the secret to myself.

I once had a manager who was skeptical I had a disease at all. I felt like I was begging when I asked if I could call into a meeting because I was too exhausted to drive five hours to be there in person. He grudgingly agreed and then cut me from the agenda all together and took credit for my work. Another time, after emailing to say I would be working from home because I had to take a narcotic pain killer just to get out of bed, he called me and kept me on the phone for hours grilling me on the work he didn’t think I was doing. I actually felt vindicated the day I told him my doctor was recommending major abdominal surgery.

Invisibility is definitely not the glamorous life it was back in the sixth grade. I wonder if I could get any of my classmates to trade with me now?

 

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