Then one day she posted about psoriasis on social media, and her confidence grew from there. “When I first started posting,” Ciena says, “I looked up the hashtag ‘psoriasis’ and there were only 100 posts or fewer; I didn’t see anybody out there doing what I was doing.” From the beginning, Ciena’s posts have been honest and show vulnerability. She posts videos of herself in mid-flare, exasperated and crying; she posts pictures of her skin, unfiltered and not hidden by makeup. “I think that my confidence around my skin was built from there,” says Ciena. “From just knowing that feeling okay with who I am and being able to share that, and involving myself in a community of people who were also going through the same things.” But when Ciena started posting on Instagram, she started much smaller. She just wanted a safe and easy way to tell all her friends and family that she has psoriasis — a fact she’d been hiding for most of her life. “My earliest memories in elementary school,” she says, “are just feeling like an outsider and alienated in some way because I had this thing that I thought people were looking at all the time.” She remembers being called names in the third grade, being the kid who was in and out of doctors’ offices, and who always wore long sleeves and nail polish to cover skin rashes and disguise pitted nails. “I would wear hoodies even when it was hot outside,” says Ciena. For the most part, her subterfuges worked. But that all changed when Ciena was in college and experienced a very bad flare that led her to the emergency room. She says more than 80 percent her body was covered with red, raw, weeping patches of psoriasis, and she had severe fatigue, a fever, and chills: “I was very ill.” For the first time in her life, Ciena switched her focus to her health — she decided to take a break from both school and acting, which she’d been actively involved in since she was 14. “My psoriasis needed my attention,” she says, “and I couldn’t pretend like it wasn’t there anymore. I let it get to that point, [and now I had to do] something about it.” After years of hiding psoriasis, Ciena knew it was time tell people about it, and she had to figure out how. Social media gave her a way to “come out” about psoriasis to everyone at once. “In the beginning,” she says, “I was embarrassed to post, but I did it anyway. At the time, I only had about 500 followers on my Instagram — and they were all friends and family,” says Ciena. “I was unsure, because I felt like, Why would they want to see this? Instagram is such a place of showing things that look good and are fun, and here I am posting something that’s aesthetically not very pleasing and makes you uncomfortable.” But Ciena found that people were receptive, and she began to get a very positive response. “I realized a lot of people have gone through similar experiences,” she says, “and it snowballed from there.” As it turned out, sharing her experience helped her cope. “I’m a very open and honest person,” says Ciena. “I’m willing to be vulnerable. I’m outspoken. Psoriasis was the only thing I felt like I ever really hid from. But there’s nothing to be afraid of anymore, because everything is out in the open.” The difference for Ciena is that she makes an effort to be transparent about such editing. She’s known to call out Instagram as “not real life,” to tell her followers when a perfect photo is the result of hours of hair and makeup in addition to photo editing and filters, and to remind people that she still has psoriasis. “On a day when I don’t want to play up my psoriasis, I’ll edit my photo to smooth out my skin — but I’m honest about it, and I’ll still use #psoriasis in the caption.” “I flipped it on its head,” she says. Here’s how: Ciena places two of the same photo side by side, the original version on the left, and a version on the right in which the colors have been oversaturated to bring out redness and irritation that are barely visible in th original. “If I met you, you might just think I had dry skin. But the other [photo] is how psoriasis feels … Whether I’m hiding it, or I don’t have a flare up, I’m still dealing with other things that go along with it — chronic itch, or chronic pain.” “I had the attitude of, I can do anything that anyone else does,” she says. “I didn’t even think about not going into entertainment, into a world where it’s very aesthetically driven and you’re on camera.” But Ciena’s can-do attitude doesn’t stop psoriasis from flaring up just because she’s booked a gig. When that happens, she preps her skin with a three-step approach: spot-treat with a topical steroid, scrub to try to get the dead skin off, and moisturize — a lot. “When I get out of the shower I moisturize,” she says, “and then two minutes later I moisturize again, and then five minutes later I moisturize again. And I have to do that throughout my day.” But even with all the moisturizer and makeup, “as someone with psoriasis, you understand that there’s no product that’s going to cover it up,” she says. “I started meeting people for lunch or for coffee who just wanted to have a conversation with me,” she says. “Some of them had never had a conversation with someone else with psoriasis before. I ended up thinking I wish I had filmed or recorded some of those conversations. I want people to feel less alone and I want people to be able to relate to others and share their stories.” Ciena is working on the docuseries with friends of hers who are filmmakers. They’re currently shooting the interviews, which will then be edited and released as individual episodes. “It’s been going really well,” Ciena says, “and I’m very excited about it.”
