Sleepless Nights: Influencers With Eczema Share Their Worst Bedtime Stories

Ask a random sampling of people on the street what they know about eczema, and most will mention red, dry, itchy skin. But there’s another, lesser-known side effect of the inflammatory skin condition: sleepless nights marked by itching and scratching, tossing and turning. Here, to shine a light on this aspect of living with eczema, eight Instagrammers and TikTokkers candidly describe their roughest nights.

Artist and Instagrammer Cecillia French remembers her worst night’s sleep like it was yesterday. She was in an “itch frenzy,” sure she would wake her fiancé, and none of her usual remedies – deep breathing, sipping herbal tea, eating an edible – provided any relief. “Finally, I caved in,” French recalls. “[I] resorted to comforting myself with a bowl of ice cream, true crime shows on Netflix, and crying. At the very least, my attention was no longer focused on the itching, and ice cream makes everything better.” Amen to that.

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It was a sultry summer night, and the South African government had shut off electricity for a few hours, which meant TikTokker Shiv Sewlal had no air conditioning. She woke up hot, itchy, and stuck to her sheets because of her weeping eczema. “After unsticking myself – more like irritably yanking the sheet off me and reopening my wounds – I opened all my windows to let in a cool breeze. With only a few mosquito bites, I made it through the night.” Fortunately, Sewlal has also had good nights, especially when she’s bundled up in her wet wrapping suit (an eczema treatment) or when she takes an antihistamine after an allergic reaction.

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Holistic nutritionist Abby Tai’s most frustrating night of sleep came when she had an eczema flare-up – and a 3-month-old baby at home. “I was 90% covered from head to toe in rashes, which had flared up after my postpartum journey,” she says. “I was feeling so unwell with the flu, but the worst part was, I could not sleep.” Lying in bed hurt, no matter how she positioned herself, and just when she was on the verge of drifting off, her baby started wailing, ready and waiting to nurse. “It was a perfect storm,” Tai recalls, calling the night “a time that I will never forget.”

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“Worst sleep? How about no sleep?” artist Aramidé Onashoga asks with a laugh. Granted, there were brief intervals on the night in question when she dozed for a few minutes. But mostly what she remembers is writhing in bed until sunrise, unable to ignore “the buzz of the itch” that comes with eczema, which affects Black people at a higher percentage than other racial groups. And then there was the morning after, when she faced “skin flakes swimming like [they’re in] a lake, sheets soaked and soiled with the plasma that has leaked from my atopic skin.” As Onashoga tells it, summoning the energy to clean up after a sleepless night just might be the worst part of the entire experience.

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TikTokker Emilie Chho’s worst night of sleep occurred while she was going through topical steroid withdrawal. Unable to relax in her bed, she tried switching to an inflatable mattress but still couldn’t get comfortable. She recalls a “bone-deep” itch and feeling feverish as she fluctuated between hot and freezing. “I even tried Benadryl, THC gummies, melatonin – you name it – to help me sleep,” she says. “But I just couldn’t because it was so painful.” Now, having come some distance in her healing journey, she is grateful to be sleeping better again. “Oh, what things you don’t realize you take for granted,” she says.

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“My upper body was on fire, my neck was oozing, and my hands were a disaster. It was painful to move even an inch of my body,” eczema dietitian Julia Chien says of her most harrowing night’s sleep, which also coincided with topical steroid withdrawal. “I was so scared of going to bed because of my skin. I had to wrap my skin in bandages so I wouldn’t scratch myself raw.” During this period, she typically slept only 2 to 3 hours a night. “Going through massive flare-ups was extremely debilitating,” she recalls. “I’m grateful those days are over.”

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“It’s hard to tell you about my worst night’s sleep with eczema because there have been so many through the years,” says Instagrammer Katie Mackie, creator of the IG community @itch_n_bitch. Still, she has a hopeful message: It gets easier – as your nightstand gets fuller. “My bedside table has started to resemble Mary Poppins’ bag,” she says, noting that it’s packed with antihistamines, ointments, and defrosted ice packs. Not that sleeplessness is entirely a thing of the past. “All I can say is [late-night] coffee shops definitely make a lot more money when my eczema is flaring.”

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After starting NMT (no moisture therapy) to treat his topical steroid withdrawal, TikTokker Jordan Hendey spent 3 months rolling around on his back, scratching his skin until he bled, and driving his partner crazy. “I don’t have one worst night with eczema,” he says. “I have a quarter of a year’s worth of bad nights.” But ever since Hendey took up daily exercise, his sleep has improved dramatically. “In reality, 3 months of sleepless nights is nothing compared to the rest of my life,” he says.

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