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My Life as an Undercover Disabled Woman

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“What superpower would you most like to have?”

That was one of the journal prompts I used with my fourth grade students. Most of them wrote about “invisibility.” They liked this idea of being unseen, capable of sneaking around, hearing what they weren’t “supposed” to hear, discovering hidden holiday gifts, finding out what teachers say and do in the teacher’s lounge.

They desired invisibility and regarded it as an important superpower. These 9- and 10-year-olds believed invisibility offered them a certain power and control that usually wasn’t a part of their daily lives.

Lately, I’ve been thinking a lot about this idea of being invisible and what it really means. Something that is invisible isn’t seen. It is undetectable and unnoticed, hidden and veiled.

In many respects, I am invisible. Not to the point where people walk through me or reveal their ATM passwords in front of me. But they don’t see the real me. And maybe, that’s my fault. Perhaps they don’t see me as I really am, because I don’t want them to. Perhaps they are seeing me only as I wish to be seen – strong, healthy, able-bodied, energetic.

I am a woman living with an outwardly unrecognizable disability – an autoimmune disease called undifferentiated connective tissue disease (UCTD). My rheumatologist described it as having overlapping symptoms of rheumatoid arthritis, lupus and myositis which means on a daily basis I experience chronic fatigue, weakness and pain in my legs. My legs alternate between feeling heavy as if an elephant has decided to plop down onto them, or slow as if I’m dragging shackles behind me, or tight as if my left calf is being squeezed by a giant set of pliers. Some days household tasks like cooking dinner and emptying the dishwasher can bring me to tears. Some days I yelp as I step over the ledge of the bathtub into the shower. The pain varies from day-to-day, even hour-to-hour, but there is always some degree of pain, every single day.   

This invisible disability has impacted all areas of my life. It cost me my profession, which was far more than just my career; it was my passion. Days before my 37th birthday, I retired from my teaching career because I no longer had the energy and physical stamina to keep up with the demands and stresses of teaching in a Los Angeles public school.

That was five years ago. But only within the last year, did I finally fill out the paperwork for a disabled parking placard. I had naively believed that a disabled person looks disabled. She leans on a cane, shuffles along with a walker, hobbles on crutches or sits in a wheelchair. I don’t. And even though I no longer teach, even though I receive monthly disability checks, I didn’t think I deserved a disabled placard.

Even now that I have the placard, I hesitate to use it. I still look for a regular parking spot, and only take a disabled spot when nothing else is available. Because I feel like I’m not quite deserving. That someone else, who more looks the part, surely needs it more than I do. Someone like my grandma: a woman whose body was ravaged by strokes, breast cancer and rheumatoid arthritis. A woman who, on a good day, could take a few steps with the aid of her cane, and on most days, sat in her wheelchair. A woman who couldn’t drive herself, who had to use her hands to lift and hoist her legs in and out of the passenger seat of the car.

Hanging a placard from my rearview mirror visibly identifies me as “disabled.” It calls attention to that which I make every effort to hide. Because my disease is not easily identified or explained or understood, I can generally get through my days masquerading as the “old Wendy.” But the placard is a bright blue label signaling that I’m not the same, and if someone quickly looks at me, they won’t understand why I have it or why I use it.

After all, I still go outside and play with my son. We kick a soccer ball back and forth, and then I come into the house and take a pain pill. We ride our bikes in the neighborhood, and I later ice my knees. But to our neighbors, I am the picture of an engaged, active mom.

And I am. Except my body tells me otherwise.

My head and heart encourage me to spend six hours with my son exploring at the Natural History Museum, but it’s my body that doesn’t cooperate. My outwardly-looks-fine body doesn’t allow me to fully enjoy the experience.

The truth is, I have created this illusion, this facade, of the way I want to be seen. I keep my pain hidden, invisible to others partly because it’s just too difficult to explain. Because I know everyone is going through something, everyone is experiencing some sort of pain. And there is the shy, reserved part of me that doesn’t want the spotlight on me, letting others know that my pain is different. My pain is permanent.

I read somewhere that anything that causes you pain also provides you with an opportunity for growth. So far, I’ve had seven and a half years of consistent, physical pain, which has then also caused mental and emotional pain. Have I grown? I don’t know.

I do know that I can see the learning opportunity here. As a former teacher, my brain is wired to see potential “teachable moments” in just about everything. And so, here is what I am trying to teach my son:  you don’t always know what’s going on with someone just by looking at them. You don’t know their strengths or challenges. You don’t know their pains, and everyone has them, whether they show them or not.

You have to take the time to get to know people. To find out what’s happening inside. To learn who people really are and not just who we think they are or who they want us to think they are.

Is my invisibility a superpower? I’m not so sure. Sometimes, I think, it’s actually a detriment. That my slowness walking and crossing streets looks more like laziness than a physical difficulty. That by creating this illusion of health and strength, I deprive myself of the opportunity to receive help.

Whether my invisibility is good or bad, whether it is a superpower or not, for now, it just is my reality. It is a part of who I am – an “undercover disabled woman” who isn’t yet ready to take off the mask and reveal myself completely.

Getty Image by Creativemarc

Originally published: March 21, 2018
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