Why ‘Invisibility’ Is Not a Superpower When It Comes to Illness

There are times when I almost wish things were worse — when I wish my disability was more evident. Sometimes it feels like it would be easier if my pain were more on display, more visible.

What would happen if the way I looked on the outside matched the way I felt on the inside?

It happened when I crossed the street to get to my neighborhood Coffee Bean. My legs hurt, and I didn’t feel like walking the two blocks each way, but I wanted a blended mocha. I wanted to get something that I enjoy, something that would put a smile on my face, and hopefully make my pain fade a little bit into the background.

But it was hard to cross the street. My legs felt like I had ankle weights strapped on. And weights wrapped around my calves and thighs. And shackles dragging behind me in the street.

But the driver couldn’t see any of that. All she saw was me — a woman slowly walking in the crosswalk, holding up her chance to make a right-hand turn. I saw her through her windshield, tapping her steering wheel, and as I got closer, through her open window I heard her grumble, “Come on, come on.” I made it onto the sidewalk, her tires screeched as she turned the corner, and I fought back tears as I ordered my favorite ice-blended coffee drink.

I thought of that woman the rest of the day. And still now, years later, I think of that woman.

I wonder how many others have cursed me or called me names because they can’t see my pain, my disease, my disability.

I wonder, would it be easier if I “looked” disabled, or fit the very narrow stereotyped picture of what many think a disabled person looks like?

It happened again when I was at our neighborhood public library, searching for books for my fifth grade son’s science project. I looked in dismay at the shelf that held the books we needed. It was the bottom shelf. Which meant I’d need to squat, bend, and crouch to read the labels on the books’ spines. But I can’t easily squat, bend, or crouch. It hurts my calves. I tried, but didn’t last long, and ungracefully plopped onto my backside. I browsed through indexes and table of contents until I located three books for my son’s project on mold. But now I had to get up. And no one was around to help me. When I’m out with my husband, he will hoist me and help me up. Even my 11-year-old reaches a hand out to try and help me stand after we’ve completed a game of Monopoly on our living room floor. But there was no one to ask, and I wouldn’t have asked anyway. How would I explain my need for help? I struggled, alternating between hoisting myself and reaching out to a shelf for support, until somehow I was finally standing again. Out of breath, most likely red in the cheeks from exertion as much as from shame, I was back to a standing position.

It happened again when I shopped for birthday cards at my local CVS. And when I was at the market, and the box of quart-size resealable bags was on a low shelf. And when I strolled through the nursery section of a home improvement store, and the display of geraniums was much lower than the display of impatiens.

In a sense, no one underestimates my capabilities because I look young, strong enough, and mobile.

Invisibility is often considered a fictional superpower.

But when it comes to life with an invisible disability, instead of empowerment, it can bring about more pain and frustration.

The truth is, there is no age or way to “look” disabled. So remember, we all deserve kindness and patience, regardless of how healthy we may look on the outside.