Nothing as it seems: The ‘Wicked’ nature of invisible illness

Along with so many others around the world, I’ve spent the past two months utterly obsessed with the movie version of “Wicked.” I saw it on the big screen (twice), read the book (again), and bought the digital version just minutes after it became available. I’ve watched it every day (and night) since, and I’ve been singing along louder than anyone with a voice like mine ever should. (And yes, it’s playing right now as I write this column.)

To be fair, my fascination with the story began decades before this movie was announced.

In my teaching days, I made my students watch “The Wizard of Oz” as an exercise in critical thinking. I helped them recognize that the supposed “Wicked Witch” (Elphaba in “Wicked”) is an innocent victim. After all, her sister is killed, her shoes are stolen, and she’s taunted by Glinda, the self-proclaimed “Good Witch.” Then the “Wonderful Wizard,” who’s powerless himself, sends a group to kill her. Even her Kansas counterpart only wants protection from a dog that repeatedly destroys her garden and finally bites her.

When I learned that a new show about the Witches of Oz when they were younger was coming to Broadway, it was kismet: I had to see it (and did, twice). And I got the cast recording. And read the book. Naturally, when this movie was announced (the first of two parts, with the second coming late this year), I knew it’d reinvigorate that obsession.

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A tale of 2 sisters

Some 20 years later, the story has taken on new meaning for me. This time around, I’m viewing it through the lens of someone who’s become disabled as a result of invisible illness(es). Now, I see so much of my community reflected on the screen.

The most obvious representation is in the character of Nessarose. Though Nessa has always used a wheelchair, the movie is the first time the character has been played by a disabled actress — two, in fact. Marissa Bode, who is paralyzed from the waist down, takes on the role through most of the film; Cesily Collette Taylor, who has spina bifida, plays the younger Nessa.

This casting sheds new light on how people with disabilities are perceived, both in fiction and in real life. Repeatedly called “tragically beautiful,” Nessa is seen as a helpless object of pity by her father, the university’s headmistress, and other students — something many of us often feel. I fight back tears each time I watch characters grab Nessa’s wheelchair despite her protestations that she can do it herself.

I, too, have been frustrated and hurt by people assuming what I can or cannot do, forcing their “help” when it’s neither needed nor wanted.

Worst of all, Nessa’s disability becomes tied to her fate of becoming the Wicked Witch of the East. Too often, disabled characters become villains of their stories, an overused and damaging trope. With disabled actresses in the role, this idea hits even harder. Bode has spoken out about how this form of ableism bleeds into her reality.

Nessa’s older sister, Elphaba, is also othered by those around her because she looks different. Rather than being pitied, she is blamed, bullied, and belittled because of her skin color. The esteemed professor Madame Morrible even proclaims, “Her green skin is but an outward manifestorium of her twisted nature,” giving her the title we all know, “Wicked Witch.” What we see throughout the movie, show, and book, however, is quite the opposite.

This theme, portrayed most clearly through Glinda, Elphaba, and the Wizard, seems to parallel invisible illness most of all. People are not always what they seem.

Life with sarcoidosis

I experience symptoms of sarcoidosis daily, but they have no visible signs. No one can see the severe fatigue that keeps me from getting off the couch a few times a week. They can’t perceive the pain that jumps from arm to leg to head, from shooting to aching to throbbing, but always takes hold of some part of my body. There’s no “outward manifestorium” of my chronic illnesses, but that doesn’t diminish their impact on my life.

The lesson I gave my students is as valuable today as it was two decades ago. It’s not enough to consider what we do. Understanding our why is crucial to knowing who we are. We’re not lazy, inconsiderate, or flaky. When we refrain from working or cancel plans, it’s because we’re limited in strength, energy, and focus.

Still, we continue to push ourselves to do what we can when we can, despite appearances. Most often, that’s less than we’d like, but on rare occasions, we can surprise ourselves. That’s why I choose to live by Elphie’s example:

“I’m through accepting limits
‘Cause someone says they’re so.
Some things I cannot change,
But ’til I try, I’ll never know.”

— “Defying Gravity,” lyrics by Stephen Schwartz

Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sarcoidosis.