It was peak pandemic April 2020 when Emmeka Hawkins first noticed the itch. He had just showered before bed and was drying his back with a towel when the symptom appeared. “It didn’t alarm me at first. I had my partner put some itchy cream on my back to help soothe it and I came to the assumption that maybe I had some kind of aversive reaction to the soap I used. ” Hawkins tells PS. But 15 minutes later, intense itching on the back resumed.

This intermittent itching lasted for days. Hawkins, assuming it was an allergic reactionstarted taking over-the-counter antihistamines. “Consistently I would get minimal relief for one to four hours and then it would come back,” says Hawkins. Then the marks appeared and the itching started to travel to my legs, face, arms and chest. Hawkins says that’s when she went into research mode, making lifestyle adjustments like changing her soap and changing her diet to ease her symptoms.

The worst part of all, says Hawkins: There were no images online that resembled her experience. While her research quickly led her to believe the itching and hives were hives, “I couldn’t find anyone with a skin tone like mine. When I did the research, they were all light skin tones and their hives. it looked a lot different than mine,” Hawkins recalls. The hives she saw online were red and swollen, while her skin was already red, and her marks and bumps looked like she rubbed against something that irritated her skin. “All in all, it was very frustrating,” says Hawkins.

This points to a larger problem that has plagued the field of dermatology for years. For context, a 2006 study found that covering dark skin in images from 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 seem fruitless and her symptoms continuing to worsen, Hawkins knew it was time to see a doctor. The pandemic made this very difficult because providers were not seeing non-emergency clients in person. “I was able to talk to someone online and it wasn’t very helpful because they couldn’t see my skin up close,” says Hawkins. Ultimately, she was advised to continue monitoring her symptoms and using OTC solutions until she could see her primary care provider. And that’s what he did for an entire year, taking pictures, tracking symptoms, and finding relief where he could.

Finally, in August 2021, Hawkins was able to see his PCP. She was then diagnosed with chronic spontaneous urticaria. “I didn’t know exactly what that meant, so (the doctor) said ‘chronic urticaria,'” Hawkins says. CSU is an inflammatory skin disease that causes hives that last for at least six weeks, Joshua ZeichnerMD, director of cosmetic and clinical research in dermatology at Mount Sinai Hospital, said PS for a previous story. Gary GoldenbergMD, a board-certified dermatologist, added, “These hives may be present every day or most days.”

When he was diagnosed, Hawkins learned there was no known trigger for CSU. This eased some of the burden she took on getting to the source of her breakouts through changes to her diet and beauty products. But at the same time, Hawkins felt a sense of dread, knowing that the eruptions were completely out of her control.

Glimpse of hope? Her doctor said the symptoms won’t last forever — probably no more than 24 months, since CSU tends to be a self-limiting disorder for many. Hawkins’ doctor told her the average was about two to three years, and she was already about a year and a half when she was diagnosed. But symptoms can persist beyond five years in up to 30% of patients, according to the Annals of Allergy, Asthma and Immunology. And unfortunately, Hawkins falls into that subset. She still experiences flare-ups more than four years after developing her initial symptoms.

“I don’t know when I’m going to start feeling an eruption coming.”

During that time, she continued to take antihistamines for relief and tried manage their stress levelswhich, when raised, tend to exacerbate breakouts. “(Eruptions) are definitely associated with a lot of anxiety,” Hawkins says. “I don’t know when I’m going to start feeling an eruption coming.” And some days, antihistamines just don’t work. “I just have to get through.” But in those days, she learned to take a better approach to how she saw herself and her body.

“I had to realize that I didn’t necessarily do anything (wrong),” Hawkins tells PS, admitting she struggled with self-blame for years after being diagnosed with CSU. But eventually, she says, her relationship with her body changed for the better.

“Now I’m more aware of everything that’s going on with my body,” she says—including what it likes, what it doesn’t like, and what the “baseline” feels like, which helps her stay in tune with any changes that come along. appear. . 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, hair regimen and her experience with CSU. “Being a woman of color and not being able to see a 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 health care, and chronic conditions. Before joining PS, she was a senior editor at Health magazine. Her other core lines can be found at Women’s Health, Prevention, Marie Claire and more.