Summer camp in 1999 was tricky.
There was my unrequited crush on a poet from the Bronx. A make out party in a nearby graveyard that I wasn’t invited to — attended by the poet and his girlfriend, of course. And a three-week bout with the coxsackievirus, which covered the palms of my hands and the soles of my feet with large, unsightly blisters.
If there’s anything more tortuous to a 14-year-old girl than not being invited to a make out party with your crush, it’s being convinced that your pus-filled blisters had something — or everything — to do with it.
The coxsackievirus, also called the hand, foot, and mouth disease virus, is similar to the chickenpox in that it’s common among small children. It goes away in a couple weeks and, ultimately, isn’t a big deal.
However, I wasn’t a small child when I caught the coxsackievirus — I was a mortified teenager, and an anxiety-prone one at that. I felt gross, I felt weird, and I felt likeI must have done something wrong to get it while I was entering high school (as opposed to preschool).
Despite the fact that the coxsackievirus spreads the same way as the common cold (through sneezes, coughs, and saliva), my mind zeroed in on cleanliness being the issue — specifically the cleanliness of my hands and my feet.
I really thought cleanliness could solve everything
So, I became vigilant about preventing future contagions of any kind. For years after summer camp, I washed my feet every night before going to bed, and I joked about being an obsessive hand-washer.
It’s not that I believed these compulsions were funny. I knew that they were a hindrance — bizarre to roommates and irritating to romantic partners who didn’t understand why I had to wash my hands after tying my shoes or opening the fridge door.
But I tried to make light of it to cope with my fear: Dirtiness had gotten me sick in the first place, and having been sick in such a public way still made me dirty today.
You can imagine then how panicked I became during my late 20s when tiny red pustules appeared all over my hands with no explanation. They sprouted on my palms, along my fingers, and on the pads of my fingers — smaller than the head of a pin, reddish, and filled with clear liquid.
And the itching! Large swaths of skin on my hands would itch like bug bites, but really worse than bug bites.
When I scratched the itchy redness with my nails, my tender skin would break open and bleed. When I ignored the itch, I suffered, unable to concentrate on anything else. Sometimes the only way to distract myself from the itch was to grip ice cubes in my hands.
The itching and the pustules seemed to appear at random at first, but over time, I realized two circumstances often brought them on: One was hot, humid weather — or perhaps, the air conditioning I used during hot, humid weather — and the other was stress.
Whenever my stress levels would spike due to my work or my family, the skin on my hands reacted angrily. My skin issues clearly worsened by these triggers.
Confused, as well as horrified by my bloody, cracked skin, and burst pustules, I lapsed into the behavior that made me feel most safe: I washed my hands and washed my hands and washed my hands some more. If I couldn’t make this unnerving skin condition go away, at least I could try to hide signs of it with good old-fashioned soap and water.
Hand-washing only made my skin worse
The skin on my hands dried to the point of cracking. It flaked off in chunks the size of sea salt flakes. The bumps got more irritated, and sometimes they ruptured into sores. As a writer and editor, it never took long for the pustules on the pads of my fingers to pop open, at times right on the keyboard’s keys.
When this thing would happen, it would interrupt my life. I would have open sores and cuts all over, which stung painfully from hand lotions, sunscreens, and bath scrubs, or from chopping onions, tomatoes, or lemons.
It felt uncomfortable to shake hands, get manicures, and even touch wool. I learned to bandage myself better than any ER doctor ever could, mastering the precise way to cover as many open wounds as possible with the padded, not sticky, bits of a Band-Aid.
It was the internet that ultimately suggested to me that I had eczema, and a visit to my GP confirmed that diagnosis. My doctor immediately helped by pointing me in the right direction for treatment. In addition to prescribing me a steroid ointment for flare-ups — a sticky, clear goo that somehow manages to look even grosser than the sores themselves — he advised me on behaviors as well.
One recommendation was to apply thick lotion constantly.I had been learning the hard way that perfumed and fragranced lotions sting horribly on delicate skin. No matter what claims a hand lotion would make — luxurious! hydrating! — certain chemicals rendered my paws even more red, raw, and inflamed.
There’s a whole world out there of lotions scented like French desserts and tropical blooms that simply isn’t for me to enjoy.
On the opposite end of the spectrum, the many popular brands of fragrance-free eczema creams repulsed me with their smell, which, to me, was like glue.
So, on my doctor’s advice to seek out thickness, I focused on shea butter as an ingredient. It feels nourishing, has a light and pleasant smell, and fortunately is an ingredient in lotions at all price points.
In fact, the absolute best lotion I found by chance in a bathroom at a former job: a bottle of La Roche-Posay Lipikar Balm AP+ Intense Repair Body Cream. It contains shea butter, as well as beeswax, and is accepted by the National Eczema Foundation. I began squirting it into my hands just because it was there in a communal bathroom. It was the most soothing lotion for my eczema that I’d ever used.
I also learned that covering my hands goes a long way toward preventing eczema flare-ups. I wear thick gloves — these are my favorite — while washing dishes and scrubbing the countertop, so as not to irritate my skin with cleaning chemicals. I also buy disposable food service gloves by the hundreds to wear while chopping vegetables or handling acidic fruits.
I’ve even been known to put on food service gloves and cut the fingertips off before taking off nail polish to better protect the rest of my hands. I know all of this looks strange, but oh well.
Breaking up with cleanliness as a defense mechanism
Alas, the other piece of my doctor’s advice — Stop washing your hands so much! — proved more frustrating to follow. Wash my hands… less? What kind of doctor’s advice is that?
But I did it.
I dialed down the hand-washing — and feet-washing — to what, I think, is a range of more normal behavior. I don’t always wash my hands after touching the fridge, or my shoes, or the garbage can anymore.
Lately I’ve been walking around my apartment barefoot and then climbing into bed without scrubbing my feet with a washcloth first. (This is a big deal for me.)
It turns out that easing up on my soapy vigilance meant I had to acknowledge that my panicked attempt at control as a teenager might have been misguided. My doctor’s suggestion felt like an admonishment, as I came to connect the dots that I had been exacerbating the problem.
Good old-fashioned soap and water, it turns out, hurt more than they help.
Five years later, I view my eczema similarly to my anxiety and depression. (I also suspect, given how my eczema flares up during stressful times, that these issues are somehow connected.)
Eczema will follow me through my entire life. It can’t be fought — it can only be managed. While my hands can look gross sometimes and feel uncomfortable or painful, most people feel sympathy for me for having it. They feel bad when it impedes my daily life.
The only person who really got worked up about it, I realized, was me.
It helped to learn that 1 in 10 people in the United States has some form of eczema, according to the National Eczema Foundation. It’s just that people don’t talk about their eczema because, well, it’s not a particularly sexy topic.
But it took me years of trial and error, shame, and frustration to feel sympathy for myself for having eczema. It started by feeling sympathy for my 14-year-old self and how mean I was to her about getting sick at camp. It continued by forgiving myself for all my strange behavior over the years while trying to feel “clean.”
I’ve been intentional about shifting my focus to regard my eczema as something that requires my loving care. A lot of my treatment is taking care of myself before a flare-up even happens. Managing my eczema is about my state of mind as much as it’s about the ointments I slather on my hands, or the meditation app that I use to cope with stress.
It doesn’t do me any good to worry about being “dirty” or “gross,” or what other people might think of me.
Now, I worry about being comfortable and kind.
Jessica Wakeman is a writer and editor based in Brooklyn. Her work has appeared in Bitch, Bust, Glamour, Healthline, Marie Claire, Racked, Rolling Stone, Self, New York magazine's The Cut, and numerous other publications.