This article is part of Health's series, Misdiagnosed, featuring stories from real women who have had their medical symptoms dismissed or wrongly diagnosed.
There's a photo of Claire Spurgin in Cairns, Australia, that she loves. It's of her at the beach, ankle deep in the Coral Sea, beaming. Only she didn't dare share the image to Instagram in 2018, the year the photo was taken, because her followers might have noticed the red marks on her stomach. She wasn't ready to explain that she has psoriasis.
Psoriasis is a skin disease that occurs when an overactive immune system causes skin cells to overturn much faster than they're supposed to. Normally, skin cells grow and shed over the course of a month. But in someone with psoriasis, that process takes only three or four days. As a result, dead cells pile up on the surface of the skin and present as plaques or scales. Symptoms usually start presenting between the ages of 15 and 25.
Spurgin was diagnosed with psoriasis in 2016. But for about six months before then, she had no idea what she was dealing with. Neither did her doctor.
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Mystery marks
It started with a strange rash on Spurgin's torso and back. She thought the splotches might have been the result of a sunburn and that they would go away on their own. But when they didn't, Spurgin went to see her general practitioner in Essex, England, where she's from.
He initially diagnosed her with bug bites. "I can see why he thought that, since I had a lot of little red dots," Spurgin tells Health. But when the steroid cream he prescribed didn't alleviate the problem, she returned for further inspection. By then, the little red dots had expanded into bigger red circles, and the doctor suspected ringworm—a skin condition caused by a fungus.
"From there, I was prescribed a thrush [anti-fungal] cream to put on my skin, and it was the tiniest little tube," Spurgin says. "I was meant to put it on my body three times a day. With all the circles I had, that amount was just not going to do anything—even if it were ringworm, which it wasn't."
In the weeks and months that followed, Spurgin was prescribed various steroid creams, antifungal lotions, and moisturizers. But nothing did the trick. Instead, the mystery rash started spreading to her neck.
"I was upset a lot," Sturgeon says. "I didn't know how to get rid of the problem because I didn't know what it was. So it was like, 'I just have this thing, and I can't do anything about it.'"
Her parents knew what she was going through, but Sturgin otherwise kept her struggle to herself. "I didn't tell my friends," she says. "If we were getting ready to go out, I'd always hide myself. I was always wearing turtlenecks. I was embarrassed."
"It was hard, because you are young, you want to go out. But you're so self-conscious."
A turning point
Sturgin was at the pharmacy, filling yet another prescription, when she finally broke down. "My skin had gotten worse and I just cried," she recalls. "A pharmacist took me into a little room to the side, and said, 'Okay, you need to go see a specialist.'"
Spurgin asked her doctor to refer her to the dermatology unit at Ipswich Hospital, and he did. (Under the UK's National Health Service, you need a referral from your GP to see a specialist. You can ask for one, but whether you get it is up to your doctor.)
"That's when I got diagnosed," she says. "I went into this room, I was in my underwear, and the nurse instantly said, 'You have psoriasis.' Like, in a second of looking at me."
Of course, Sturgin's red marks didn't magically disappear from there. Her dermatologist offered sample creams to see which of them might soothe her skin, and together they made plans for further treatment. But the relief Sturgin felt was enormous nonetheless. "Someone finally knew what was wrong with me," she says.
While she's not angry with the doctor who misdiagnosed her, Sturgin does wonder why he didn't recommend that she see a specialist sooner. (According to the National Health Service, "If you ask your GP to refer you to a specialist, they'll probably suggest that you first try various tests or treatment options to see whether your condition improves.")
"I still think doctors are amazing, and obviously they have a tough job," Sturgin says. "But I do wish that it was my doctor who said, 'I want to send you somewhere.' Instead of him just kind of guessing and hoping something worked."
Treatment begins
Not long after her diagnosis, Sturgin started phototherapy, a UVB light treatment that can slow the growth of skin cells and suppress an overly active immune system. (She also continued to experiment with moisturizers and other topical treatments.) "It was like going into a sunbed," she says of phototherapy.
She went for the treatment three times a week for several weeks. "Each time, the UV dosage was a bit stronger and I was in the box for a bit longer," she explains. But her condition didn't improve. "My skin was really stubborn."
She tried a PUVA bath next, which is when you soak in water and psoralen, a medicine that makes skin more sensitive to UV light ahead of UV treatment—and that course of phototherapy did help. In fact, Sturgin was psoriasis-free for a few months. "It was a relief," she says. "I felt back to normal."
But then the little dots started to reappear.
"It's kind of a never-ending cycle," she says. "So after that, I decided to just leave my skin as it was. I figured, if I go on holiday, that will help." And so she took off on a two-year trip to Australia and New Zealand.
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Learning to live with psoriasis
The trip did, indeed, make a difference. "Stress is an inflammatory, and inflammation makes psoriasis worse," Sturgin says. "I feel like being on holiday and traveling, I was more carefree. I was happy, and that helped. Now I'm back in England and my skin is angry!"
If there was one thing that was anxiety-inducing about being on the road, it's that Sturgin was often asked, point-blank, about her skin.
"I was always shocked when strangers would say, 'What's wrong with you?'" she recalls. "Like, they were adults, and they would just ask me to my face. An adult should know how to approach someone in a nicer way. But they didn't. They were just very upfront."
It was her desire to avoid that type of inquisition—she's often asked, too, if she has chicken pox—that prompted her to start an Instagram account earlier this year dedicated to her experience with psoriasis.
"Originally, I was tired of people asking what was wrong with my skin, and I just thought, the more people who know about it, the less people who ask me about it directly," Spurgin says.
But now her purpose has expanded. "Everyone says to me, 'You're so confident,'" she says. "And I want others to be confident, because there's nothing to hide."
That's not to say she doesn't still have her moments of insecurity. "Like the other day, when I had a job interview, I was so nervous in my car," she says. "Just preparing for the worst-case scenario." But she wound up getting the job (she's a junior sommelier), and she took a lesson away from the experience. "I realized I didn't need to worry. And now I won't worry about that again."
There is no cure for psoriasis, which means Sprugin will be dealing with the condition for the rest of her life. She's finally at a point where she can accept that. "In the beginning I just wanted it gone," she says. "I used to look in the mirror and cry. And now I'm like, 'It's here to stay. It's okay.' I'm a different person."
If you have a story to share about being misdiagnosed, email us at misdiagnosed@health.com and join our Misdiagnosed Facebook community to talk to women who share the same struggle.