The Secret That’s Haunted Me

Once upon a time, a boy I’d recently started dating peered into my eyes and asked me, “What’s your secret?”

“Huh?” I said.

“Everyone has a secret,” he said. “So. What’s yours?”

It was the most intimate question I’d ever been asked. To this day, it still is. Trading secrets is an exercise in vulnerability—scary and exhilarating all at once. Mostly scary.

I didn’t have to spend a second musing over what my answer would be. I knew. For more than a decade already, I’d lived with the burden of hiding a significant part of myself from the outside world. A few people in my life knew my secret because we’d grown up together, and there was a time, when I was much younger, when I physically couldn’t hide it. For reasons I’ll soon explain, that time mostly passed. Hiding it became a possibility.

With secrecy, though, comes a heavy burden.

That was 13 years ago. In all those years, my answer to that question remains the same. Particularly if you’ve known me personally in my adult life—my extroverted, cheery demeanor—you might think I’m exaggerating the significance of what I’m about to tell you. I assure you, I am not.

When I was 4 years old, my hands and feet began sweating profusely. All the time. Unrelated to anything. I could be on a beach or in a walk-in freezer, onstage or reading a book alone in my bedroom. No matter, the sweat poured off my hands in waterfalls, incessantly.

My pediatrician had worked with several children before with a similar problem. When my mom brought me in to see her, though, and together they watched large drops of sweat bloom on my open palms, my pediatrician said something to the effect of, “Holy cow. I’ve never seen it this severe.”

There’s a name for this: hyperhidrosis. It’s a clunky, ungainly title for something an estimated 200+ million people in the world suffer from, nearly all in silence and isolation due to the social stigmas associated with excessive sweating. My hands and feet have always been the worst, but it can occur virtually anywhere on the body—the hands, feet, armpits, face, back, or elsewhere. For some (not in my case), it may also manifest as chronic facial blushing.

Because hyperhidrosis is a condition that lurks in secrecy in the lives of those who suffer from it, most people don’t understand what it really means to have it. They think, Calm down! It’s just a little sweat. Everyone sweats. Just learn to relax.

Let me say this: hyperhidrosis means spending your childhood being told by people who don’t know better—peers, teachers, coaches, parents of friends—that you are disgusting. It means being reprimanded for always turning in damp, curled school papers or test sheets, being told not to touch others until you go to the restroom to get clean. Didn’t anyone teach you how to wash your hands?

You grow up believing your body too repulsive in its quirks to ever deserve someone else’s love, let alone your own.

You make lists of things you’ll never be: a musician, a nurse, an artist, a chef, a massage therapist, a surgeon.

You make lists of things you can never do: play a guitar, rock climb, spin pottery.

You make lists of things you ruin when you touch them: books, clothing, construction paper, clay, computer keyboards, touchscreens, decks of cards, bread dough. You don’t even want to hold a baby for fear of it sliding out of your slippery hands.

When I was in middle school, my parents began helping me explore treatment methods. Treatments exist, but they’re imperfect—expensive, often limited in their effectiveness, rife with side effects, and sometimes borderline barbaric. I’ve administered electric shocks to my hands; I’ve received 150 injections on the surface in each palm; I’ve tried topical treatments that caused my skin to burn or crack and bleed.

Some resort to surgery—a controversial procedure with mixed results that involves temporarily collapsing lungs in order to sever parts of the nervous system. I haven’t gone there, yet.

I eventually came to rely on prescription pills I’ve now been taking for 15 years. It’s a peptic-ulcer medication sometimes prescribed off-label after decreased sweating was discovered to be one of its side effects. It’s helped me function in my adult life, and it’s helped me better hide my condition, but it’s a far cry from a cure. My hands still sweat excessively—just less than before.

Some doctors won’t even prescribe it due to concern about long-term effects of daily pharmaceutical use. Indeed, over time, my teeth have decayed a good deal and my hair has thinned. My stomach feels upset almost daily. In direct sunlight, I often get dizzy. (Wonder why I love the Pacific Northwest so? It’s all those glorious trees!) My insurance stopped covering my medication, so I pay hundreds of dollars each year out of pocket for it.

Yet, I can’t imagine my life without treatment. Once, my prescription ran out before I had a chance to refill it. The week I had to spend without pills—I was still in high school then—plunged me back into a non-functional, intolerable nightmare.

Hyperhidrosis isn’t like cancer or autism or ALS (thanks, Ice Bucket Challenge), where people have readily heard of it and thus have developed the appropriate sympathies. As far as I know, no celebrities have ever stepped forward to create hyperhidrosis awareness campaigns. I can’t just say to a stranger, “Oh yeah, I have hyperhidrosis” and expect they’ll understand what I mean. Even in my adult life, I’ve had strangers turn their noses up at me after shaking my hand.

“Ugh, your hands are all gross and wet,” they say. “What’s wrong with you?”

No attempt at rapid-fire explanation in that moment—“Yeah, see, I suffer from this strange medical condition you’ve never heard of called hyperhidrosis that makes my hands sweat inhuman amounts at all times”—can erase the look of disdain on their faces. Nothing can convince a skeptical potential employer in a job interview that your sweaty hands have very little to do with being nervous or inept.

The best I can hope is that they didn’t notice how clammy my hands were. But, of course, they did. Many are kind enough to feign obliviousness and carry on as though I didn’t just offer them an inexplicably soggy appendage to shake. Thank you, I want to tell them. Thank you for pretending with me that I am normal.

Not even a whole blog post can convey what living with hyperhidrosis is really like. Which, it turns out, is at the heart of why I quit my job several months ago.

I said it was to write a book. Indeed, I have at least a dozen different book ideas rolling around inside of me. When I quit, I still didn’t know which of those I wanted to pursue writing first. Thanks in large part to my friend Seyeon who listened to me ramble on the phone for hours several months ago about all my ideas, I’m now certain which one is of the utmost urgency to write: this one.

Thanks to my medication, and to having relocated to drier climates than where I grew up, my hyperhidrosis is no longer debilitating. It’s more of an irritation now than anything. Sure, I still can’t rock climb, but I have friends, a relationship, a successful career. (And I can sure as hell be a runner!) I have love and joy in my daily life that, as a child, in my wildest dreams, I couldn’t have imagined someday experiencing.

In many ways, I’ve long felt dispassionate about writing about hyperhidrosis. After all, I’m OK now—so OK, in fact, that I sometimes forget how awful this was for me before. Why dredge up all the old, painful memories from my childhood?

Because, in the words of Helen Keller, “Ideas without action are worthless.” Because others are not OK now. Some never have been.

After releasing an in-depth survey just yesterday for HH sufferers to fill out to help inform my book project, I’ve been inundated with responses from many people who’ve never found any relief from the cruel ravages of this condition. They live in secrecy and shame and devastation. They’ve confided their daily struggles, their feelings of hopelessness, sometimes even their suicidal thoughts. Their messages say, Thank you, yes, please write this book. No one understands what living with this is really like.

There are despondent kids whose parents have no understanding of, or in some cases even sympathy for, the battles their child faces. There are wives whose husbands are cruel to them about their bodies. There’s a young man who began dealing drugs because he saw no other viable professional path for himself.

Perhaps there are some who might think we sweaty-handed folks are being dramatic. They might want to pat us on the back and say, “But really, sweating … come on now, that’s doesn’t sound like such a big deal.”

Which is precisely why I need to write this book.

 

P.s. You can learn more about the book project here. If you’re so inclined, check out the ‘Get Involved‘ page to learn small ways you can make a big difference in the lives of millions by helping me get the word out, even if you’d never heard of this condition before reading this blog post. It would mean the world to us.

Running: My happy place, where my sweaty hands have never mattered. Photo by my wonderful, talented friend, Randall Levensaler.

Running—my happy place, where my sweaty hands have never mattered. Photo by my wonderful, talented friend, Randall Levensaler.