It was peak pandemic, April 2020, when Emmeka Hawkins first noticed the itch. She had just showered before bed and was drying her back with a towel when the symptom appeared. “It didn’t alarm me at first. I had my partner put some itch cream on my back to help soothe it, and I just came to the assumption that maybe I had some type of aversive reaction to the soap that I used,” Hawkins tells PS. But 15 minutes later, the intense itching on her back resumed.
This on-and-off itching went on for days. Hawkins, assuming it was an allergic reaction, started taking over-the-counter antihistamines. “I consistently would get a minimal amount of relief for one to four hours and then it would come back,” Hawkins says. Then, the welts appeared and the itching started traveling to her legs, face, arms, and chest. Hawkins says that’s when she went into research mode, making lifestyle adjustments like swapping out her soap and changing her diet to quell the symptoms.
The worst part of it all, Hawkins says: there weren’t any images online that resembled her experience. While her research had quickly led her to believe that the itching and welts were hives, “I wasn’t able to find anyone who had a skin tone like mine. When I did the research, it was all fair skin tones and their their hives looked a lot different than mine,” Hawkins recalls. The hives she saw online were red and swollen, whereas her skin already had red undertones and her welts and bumps just looked like she’d rubbed up against something that irritated her skin. “All in all, it was very frustrating,” Hawkins says.
This indicates a larger problem that’s plagued the dermatology field for years. For context, a 2006 study found that coverage of dark skin in images in major dermatology resources ranged from four percent to 18 percent. And a 2020 study showed little improvement, with up to 18 percent of images containing dark skin tones.
With the lack of representation making her own research feel fruitless and her symptoms continuing to worsen, Hawkins knew that it was past time to see a doctor. The pandemic made that very difficult though, as providers weren’t seeing nonemergency clients in person. “I was able to talk to someone online and it wasn’t very helpful because they weren’t able to see my skin up close,” Hawkins says. Ultimately, she was advised to continue monitoring her symptoms and use OTC solutions until she could see her primary care provider. And that’s what she did for a full year, taking pictures, tracking symptoms, and finding relief where she could.
Finally, in August 2021, Hawkins was able to see her PCP. That’s when she was diagnosed with chronic spontaneous urticaria. “I didn’t know exactly what that meant, so [the doctor] said ‘chronic hives,'” Hawkins says. CSU is an inflammatory skin disease that causes hives that last for at least six weeks, Joshua Zeichner, MD, the director of cosmetic and clinical research in dermatology at Mount Sinai Hospital, told PS for a previous story. Gary Goldenberg, MD, a board-certified dermatologist, added, “These hives can be present every day or most days.”
In being diagnosed, Hawkins learned that there’s no known trigger for CSU. This alleviated some of the onus she’d put on herself to get to the source of her breakouts via changes to her diet and beauty products. But at the same time, Hawkins felt a sense of dread, knowing the breakouts were completely outside of her control.
The glimmer of hope? Her doctor said the symptoms wouldn’t last forever – likely no longer than 24 more months, since CSU tends to be a self-limited disorder for many. Hawkins’s doctor told her the average was about two to three years, and she was already about a year and a half in when she was diagnosed. But symptoms can persist beyond five years in up to 30 percent of patients, according to the Annals of Allergy, Asthma & Immunology. And unfortunately, Hawkins falls into that subset. She’s still experiencing spontaneous breakouts more than four years after her initial symptoms developed.
“I don’t know when I’m gonna start to feel a breakout coming on.”
In that time, she’s continued to take antihistamines for relief and tried to manage her stress levels, which, when elevated, tend to exacerbate flare-ups. “[Breakouts] are definitely coupled with a lot of anxiety,” Hawkins says. “I don’t know when I’m gonna start to feel a breakout coming on.” And some days the antihistamines just don’t work. “I just kind of have to push through.” But on those days, she’s learned to take a more gracious approach to how she views herself and her body.
“I had to realize that there’s nothing that I necessarily did [wrong],” Hawkins tells PS, admitting that she grappled with self-blame for years after being diagnosed with CSU. But ultimately, she says, her relationship with her body has changed for the better.
“Now I’m more aware of everything that’s happening with my body,” she says – including what it likes, what it doesn’t like, and what her “baseline” feels like, which helps her stay attuned to any changes that occur. When it comes to your health, that awareness is never a bad thing, Hawkins says.
The content creator has also found comfort in posting videos and unfiltered content online: sharing her morning routine, her hair-care regimen, and her experience with CSU. “Being a woman of color and not being able to see representation of myself, I think it’s important to tell my story,” Hawkins says.
Alexis Jones is the senior health and fitness editor at PS. Her passions and areas of expertise include women’s health and fitness, mental health, racial and ethnic disparities in healthcare, and chronic conditions. Prior to joining PS, she was the senior editor at Health magazine. Her other bylines can be found at Women’s Health, Prevention, Marie Claire, and more.
