What If I Never Really Had My Lifelong Asthma?

Misdiagnosed, I have to figure out who I am without my illness.

Posted Aug 04, 2020

photo by Caroline Leavitt
Bye, bye inhalers. Now what?
Source: photo by Caroline Leavitt

I’m five when I change from a happy rambunctious little girl to a sickly one. It begins suddenly, with my needing to clear my throat, and then one day, I wake up and I can’t breathe.

My mom’s terrified and whisks me to a doctor who listens to my noisy lungs and makes me open my mouth for an inhaler that makes the wheeze go away but pounds my heart. “Asthma,” he says. It’s a heavy diagnosis for tiny shoulders, because it means this terrible feeling will happen again. “You have to be careful,” he tells me. “And then when will I get better?” I ask and he looks at my mother and she looks at me and no one says anything.

By eight, the kids at school call me “asthma head.”

“You’re a sick little girl,” I’m told, and I know that’s true because I’m in the ER a lot, and I always have meds to take and doctors to see. That’s who I am at ten and then at 17 and then into my twenties. I never tell anyone because being sick like that feels like a stain or a bad mark on my permanent record. Sick Girl! Handle with care!

When I become an adult and move to Manhattan, the first thing I do is get a pulmonologist who writes me out three prescriptions, one for inhaled steroids, which have horrific side effects, and a pill and then another rescue inhaler for when I am panting and terrified. The meds work.

Asthma defines me as surely as the chromosomes that determine my curly dark hair, my green eyes. I know it, but I try to keep others from knowing it, from thinking less of me because of it. When my mother asks how I am, I lie and tell her I outgrew my asthma so she won’t keep reminding me of how sick and fragile I am. I go to doctors, because I know they are the gods who can keep me healthy, and I am their sick, incurable patient.

I don’t want to be asthmatic. When I think of the good things in my life—loving friends, a wonderful husband, a perfect son, and a prolific writing career—I tell myself, how lucky are you because despite the asthma you get to have these things! But sometimes, too, I tell myself, I get to have these things as payback for being sick, and if I wasn’t sick, then maybe those good things would vanish.

One day, years later, when I’m writing a novel, this character, a little boy, shows up with asthma. I delete the pages, but he keeps showing up, and when I tell another writer friend, she sagely says, “Sometimes what you don’t want to write about is exactly what you should write about.” So I do. I give him my wheezing, my terror, and I begin to feel compassion for him.

To my surprise, after this book, my asthma identity has changed again, only this time, I am a champion spokeswoman for what I call “no-shame asthma.” My platform, this book, gives me some power to do good in the world because of my asthma. Speak up, I tell people. Live with your asthma but don’t let it mock you. I  become no-shame Caroline.

In the next five years, my asthma is well-managed, until one day in the swampy heat of the summer, my asthma flares. I can’t catch my breath. I rush to the ER for a nebulizer treatment, but it doesn’t help. I go to my pulmonologist who gives me a lung function test and then sends me to a fancy ear-nose-throat specialist in Manhattan. His swanky office proclaims he is another expert in a life of experts that can have me manage my asthma.

Except this particular specialist claims it’s stomach acid attacking my lungs. When the meds he gives me don’t work, he sends me to a cardiologist. My heart is fine, and the doctor, a male, tells me “it’s all in your head.”

Desperate, I go to an acupuncturist, a shaman, who tells me it’s unresolved anger with my mother. She waves a black crow feather over me while shouting, “Ha!” My asthma remains.

When I have a panic attack, I’m sent to a psychiatrist who gives me a single low dose of Klonopin, which instantly calms me and opens my lungs. I look at her, amazed. “Is it all in my head?” I ask her and she shrugs.

I have asthma and I have anxiety. Who does that make me now?

I get an appointment at this new facility, a kind of Mayo clinic for breathing disorders. The doctor spends two hours with me and then has me take a methacholine challenge. The word “challenge” scares me. For an hour, you breathe in increasing doses of a mist. If you have even a whiff of asthma, you get an attack.

I don’t have asthma.

What then do I have? And who then am I?

More tests are done and they discover something. I have a hypersensitive larynx that shuts off my vocal cords so I cannot breathe. I can do breathing exercises for it. When it gets really bad, I can take a Klonopin, not for the psychiatric terror, but because it relaxes the muscles.

For the first time since I was five, I go off all my asthma meds cold turkey. My nebulizer gathers dust, but I’m afraid to throw it out, like a security blanket, long outgrown but still part of who I was. I feel as if I am in a world of wonder. How did everyone get this so wrong for so many years? I don't know who I am without my inhalers. I feel like a fraud because I've written and given talks about my asthma, and it turns out to be a disease I never really had at all.

I begin to test drive this new me. I walk a mile in the city, leaving my inhalers at home, terrified that I might need them, telling myself I can always call 911 if I do. But I don’t need them, not that day or the day after, or the next six months. One day, I’m talking to my therapist when I mention that I’m healthy and she visibly startles.

“Did you hear what you called yourself? You said you were healthy,” she tells me, and then I feel it again, that wonder, those words: I am a healthy person.

I begin to tell people I don’t have asthma, to test drive this new person in the world, and many are skeptical. I religiously do yoga breathing exercises and use a device I found myself from a breathing forum, called The Breather, which actually strengthens your vocal cords. I feel strong, invincible.

So who am I without my asthma? Anyone I want to be.

Caroline Leavitt is the NYT Bestselling author of Pictures of You, rereleased this August for its 10th anniversary, Is This Tomorrow, Cruel Beautiful World, and With or Without You, just published from Algonquin Books.