Here’s what it’s like to live with.

By Alexandra Ilyashov
Jun 06, 2019 @ 10:00 am
Thomas Bateman/Delineations of Cutaneous Disease/Cadbury Research Library: Special Collections, University of Birmingham

Bathrooms tend to be mundane, utilitarian tiled hideouts for taking care of business. But when I developed severe eczema at age 25, they became a kind of personal hell. Places where I’d embark on my dreaded solo ritual of scratching to temporarily relieve the incessant itch that rankled up to 95 percent of my body.

A chronic inflammatory skin disease that most commonly affects children, eczema now increasingly occurs as an adult-onset condition. Mild cases are an itchy, occasional annoyance, but in severe cases like mine, it’s a debilitating, perpetual, painful hurdle for the body and brain.

“Think about it like somebody has bed bugs on the entire body: it’s extremely, extremely inconvenient” to have severe eczema, explains Emma Guttman, M.D., Ph.D., director of the Laboratory of Inflammatory Skin Diseases at Mount Sinai’s Icahn School of Medicine and vice chair for research at the Department of Dermatology. “The more inconvenient it gets, the less sleep you get, and it affects your entire life. You cannot sleep, you cannot work, you cannot do well in school, and so on.”

And it's certainly not just me. A December 2018 survey reported 12 percent of adults globally and 9 percent of U.S. adults have eczema. Dr. Guttman says people getting eczema out of the blue in adulthood, like I did, has become more common in recent years. In fact a study out of Northwestern University’s Feinberg School of Medicine this January found 1 in 4 adults with eczema reported adult-onset of the condition.

When I got it, I came to fear bathrooms with dark-tiled floors, which wouldn’t obscure a snowstorm of skin flakes, and light-colored walls, which I on more than one occasion left blood-stained by accidentally grazing them with my scratched-open arms, back, or hips. Even when my nails are ultra-short, thickly gel-polished nubs, they’re still weaponizable.

During a weeklong 20-person family reunion in Austin, I obliterated most of the rental house’s eight bathrooms with my trance-like scratching and frantic cleaning of the toilet seat, floor, sink, walls. Airplane bathrooms were a double-edged sword: too claustrophobic, too germy for wounds, but the loud engines would mask my vicious, delirious pawing. Coworkers at my former job often messaged me after run-ins in the bathroom to ask if I was okay, if I’d been crying or upset: my face left raw, red, and flaky; eyes and forehead so puffy from the rubbing and scratching that they literally distorted my features. Thanks for asking, I’m fine, it’s just bad eczema, I’d say, as I sunk lower into my chair. After each dissociative scratching binge came a stunned daze, wincing in pain, hurrying to clean my mess, cursing myself for fucking up again by giving in to irresistible itchiness. It felt like a cruel fate, my life upended in my mid-twenties unexpectedly.

There’s a surprising lack of consensus in the medical community about what eczema is, and why it may be becoming more widespread as an adult condition. It was thought to be an allergic disease until a 2006 Scottish study revealed a genetic component: Eczema patients have skin that’s awful at retaining moisture and porous. It lets in irritants, spurring inflammation (itching, redness, swelling), which triggers the immune system — even though eczema isn’t technically an autoimmune disease. That means more itching and redness, and a heightened risk of infection from the resultant litany of wounds, and simply being out in the germ-infested world.

In my five or so years with eczema and under the guidance of three different dermatologists, I’ve tried at least a half-dozen prescription topical steroid ointments and creams of various potencies to soothe itching and inflammation; two immunosuppressants, one in pill form, the other an ointment; a few months of in-office phytotherapy (UVB light therapy); and hypnotherapy, to try to gain Jedi mind control over my incessant scratching. After all of that, my case wasn’t sufficiently improved.

During flare-ups, I get frequent flu-like colds and stomach infections. Terrible seasonal allergies and asthma arrived in my late twenties for the first time ever, part of a suite of inflammatory issues dubbed Atopic March that often afflict severe eczema sufferers. Another recent study led by Jonathan I. Silverberg, M.D., Ph.D., M.P.H., of Northwestern, found moderate to severe eczema sufferers more likely to also have asthma, hay fever, food allergies, mental health disturbances, and cardio-metabolic issues than those with milder or no eczema. So while it’s not an allergic disease, as it was wrongly defined for decades, allergies are involved. And then there’s the emotional toll.

Dealing with severe eczema calls into question “the view you think others have of you, so it decreases your sense of attractiveness, and you can become hyper-focused on people looking at you,” explains Curtis Reisinger, Ph.D., an assistant professor of psychiatry at Hofstra/Northwell's Zucker School of Medicine. “For some people, that can consume a good part of their day, so they go to extremes to hide the symptoms, but that actually increases stress level, which becomes a vicious cycle.” I know this well. Constantly embarrassed about my skin, I’d reflexively explain, even apologize, for my appearance and assure friends, family, coworkers, and total strangers that I wasn’t contagious, often before anyone asked.  

Thomas Bateman/Delineations of Cutaneous Disease/Cadbury Research Library: Special Collections, University of Birmingham

Recent research has backed up the connection between skin disorders and mental health struggles. And it’s no wonder — everything about this has been distressing. My flare ups often involved areas on my chest, neck, and arms, akin to self-inflicted rug burn, oozing discharge that I tried to soak up with multiple layers of clothes and the widest, longest gauze I could find in the drugstore’s first aid section, swathed (with my boyfriend’s help) like a mummy.

It was a messy, sort of depressing addition to my morning routine for months that limited my mobility, which was already impaired by painfully cracked skin on areas that move often, like shoulders, knees, elbows, and wrists. I constantly had chills, my teeth chattering and hands shaking, because of eczema-induced infections. (More than 90 percent of eczema sufferers have staph bacteria on their skin, versus about 20 percent of healthy adults, and staph thrives in broken skin, causing eczema to spread faster and heal slower.) More than half of my already-fine hair fell out as eczema ravaged my scalp, something less than 5 percent of people experience: the subsequent scratching caused hair loss, leaving my ponytail slimmer than pinky-width.

Sleep was nearly impossible: the worst itchiness usually happens in the evening, and awaking in the middle of the night for any reason meant the dangerously desirable opportunity to scratch myself raw. Aggressive scratching and ensuing infections made my lower legs and feet alarmingly, unrecognizably swollen: my ankles didn’t fit into most shoes, and bending my knees was incredibly painful, especially when climbing up or down stairs, which I do constantly in subway stations and my fourth-floor walk-up apartment.

Weirdly, though my physical abilities and mood suffered, I kept up a pretty robust social life, and continued going to work. My parents and an aunt I’m very close to implored me to take medical leave from my job because of how debilitating this clearly was to my brain and my body. I was stubborn, resistant to being that weak, that affected, that sick to even entertain that scenario. At my monthly clinical trial drug appointments, my doctors and nurses marveled that I was still showing up for work and social plans, mentioning how other patients with such severe cases often became reclusive.

In hindsight I can see that I prioritized my fears of being a “bad” employee or team player over my health. These were exhausting attempts to maintain normalcy and grasp for control. But at home, it was a different story. My boyfriend held me, soothed me with back and foot rubs or hair strokes, as I sobbed nearly nightly. I felt profoundly hopeless — a new, terrifying emotion. I’ve always been an overthinker, a worrier. But this was different: a perpetual heavy, forlorn feeling that wore me down. I worried I finally had the depression I’d long wondered if, or when, I might inherit due to a family history.

I saw a psychiatrist for the first time; she diagnosed my mental side effects of eczema as anxiety and depression. I began taking an SSRI (and later, ADHD medication) to help me cope. It was validating to have words and conditions to explain how eczema had ransacked my mind, not solely my skin. I often wonder if eczema caused these mental health issues; I’m still not sure. I was already predisposed to depression, a highly hereditary condition. I suspect I’ve had focus issues for around two decades, but high-functioning enough to not explore medication, until eczema arrived. “Absolutely, there is a connection between ADHD and eczema,” says Dr. Guttman, who says she’s seen children with both conditions begin performing better in school after receiving successful eczema treatment.

There’s an “intimate, even beyond-symbiotic relationship” between the mind and body, Dr. Reisinger explains. “What goes on in your head affects your physiology,” he says, and when a person is stressed, “heart rate changes, skin response becomes less resistant, blood pressure goes up or down, and these reactions come very quickly.” The distracting and uncomfortable qualities brought on by eczema can definitely worsen, maybe even cause, mental health issues. “The terrible itch; the fact you don’t sleep? Of course it affects you when you don’t sleep a minute at night, and of course you’ll be irritated and agitated during the day,” Guttman explains. “It’s a link.” She says depression and anxiety are the most prevalent mental health issues afflicting eczema sufferers, and that she’s seen patients suffering from eczema so severely that they had suicidal thoughts. “These psychiatric issues almost went completely away when they got good [eczema] treatment.”

The mental-health impact of eczema can be even more jarring when it hits suddenly in adulthood. “It’s a huge adjustment, all these different things you need to cope with; if you’d dealt with eczema your entire life, you’re used to it,” Dr. Guttman says. Dr. Silverberg’s September 2018 study found eczema to be more detrimental to an adult’s quality of life than other chronic illnesses: 16.7 percent of eczema sufferers reported “being somewhat or very dissatisfied with life,” versus 11.4 percent of those without eczema. More than half of adults with eczema experienced “commonly limited lifestyle,” while 39.1 percent said it “led to avoidance of social interaction.” No wonder my doctors seemed surprised that I still managed to face the day.

“The good news is that now, all the pharma companies are interested in developing drugs for eczema,” Dr. Guttman says, explaining that eczema is “now considered the number-one inflammatory skin disease.”

I’ve benefited from Big Pharma’s increased eczema interest via clinical trials, the second of which I’m halfway through. These drugs, in tandem with therapy and psychiatric medications, have improved my mental state considerably. I sometimes wrestle with the risks of undergoing non-FDA-approved treatments, and the trials are time consuming: an hour commute to twice-monthly, hour-plus appointments to complete self-reported questionnaires and give my blood, urine, and sometimes skin via biopsies. They can be emotionally draining, too: formal, standing appointments explicitly focused on the thing I often want to ignore most. But the medications remain my best possible current option. I know I’m lucky to even have access.

RELATED: The Best Skincare Products for Eczema-Prone Skin

My first clinical trial dramatically healed my skin: In two weeks, the incessant itch was gone and dozens of open wounds, areas rubbed raw, and embarrassingly flaky patches closed up, smoothed over, stopped bleeding as that demonic itchiness and its self-destructive trances were gone. I felt like myself again. The trial also unexpectedly plopped around $1,000 into my bank account, compensation for being a pharmacological guinea pig, that I put immediately into savings. A few months later, I decided to dip into my trial earnings to buy something to remind me I’m stronger, and defined by so much more, than my eczema: two bands for my right ring finger that I call my “fuck eczema rings.”

I’m now up to four “fuck eczema rings,” physically small but unexpectedly significant. The rings symbolize my lowest points physically and mentally, and that my skin will be ravaged by the chronic condition again in the future. They remind me I’ll always find a way to keep it moving, the makeshift mantra I’d repeat in my head, sometimes out loud, when wincing through the roughest flare-ups.

Some moments it feels like I’ve done a complete 180; other times, I feel like still a shell of my pre-eczema self. I’ll take what I can get to stabilize physical and emotional health, as I keep trying to understand the complex connections between eczema’s turmoil on skin and mind. But at least bathrooms are no longer traumatic: I can once again pee in peace, and for that, I’m grateful.

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