Psoriasis is one of those conditions that can be easy to shrug off if you’ve never experienced it. Even though we write about skin issues all the time, even we have had fleeting thoughts along the lines of “Kim Kardashian has it, and we’d never have been able to tell.”
Of course, the truth is that having psoriasis is more than getting occasional itchy red patches of skin. It’s an autoimmune disease with symptoms that can be quite serious. And for more than five years, Los Angeles–based actress Ciena Rae Nelson has reminded the world of that on Instagram.
Nelson started sharing her journey with psoriasis in 2016, posting a selfie in which her skin is red and inflamed after a psoriasis flare-up. “This is me 2 years ago just before I went to the hospital for severe dehydration and a fever,” she wrote. “Skin conditions are not cosmetic issues.”
The same day, she shared a side-by-side selfie that showed her made up and nearly flawless in the left image, and red and blotchy in the right, thanks to photo editing that allowed her to increase the saturation of that picture to reveal the skin condition beneath. “Most people looked at the left in person and didn’t notice much but dry spots here and there, not noticing what was really underneath,” she wrote. “#psoriaticarthritis is an #invisibleillness and sometimes so is psoriasis (chronic itchiness and chronic fatigue). Not everything is as bad as it looks and sometimes things are…much worse.”
But while the posts were new, Nelson’s psoriasis was anything but: She’s been living with psoriasis for “nearly my entire life,” she wrote in an Instagram post for the National Psoriasis Foundation, “which means that I don’t really know what life is like without it.” As a child with psoriasis, she often felt isolated. “I didn’t know anyone who understood what I was going through,” she wrote. And while her family was supportive, “I always felt that unless they had it, they’d never really get it.”
After her first posts about it in 2016, “there was an influx of support from people from all around the world who were going through something similar,” she wrote. “I started meeting up with people who reached out just to connect about psoriasis, which was something I had never done before. In fact, many of the people I met had never…spoken to someone with psoriasis before.”
Since then Nelson has been a vocal social advocate for psoriasis awareness. She wants people to know they’re not alone. “For people who suffer with chronic illness, it is so important to be able to connect with other people who have experienced what we have, in order to feel validated and understood,” she wrote. “Society tells us that we have to show up in the world, at work, at school, with our friends, just like everyone else does. But we are not like everyone else. And so if we are not careful, we can easily end up overexerting ourselves at the expense of our quality of life.”
Nelson talks openly about how the condition affects not only her skin but also her mental health. Psoriasis can take a toll on your emotional well-being. Not only is stress a trigger for psoriasis, but, as Nelson shares, the disease can cause stress. Psoriasis can also cause depression.
In a 2019 post, Nelson shared that she’d “had a breakdown about my skin and thought very seriously for the first time in a long time about going back on medication, but I started therapy instead.” Therapy, she writes, has been important in helping her learn to live with psoriasis. “Are any of you in therapy?” Nelson asked her followers. She pointed out that “people with Psoriasis are twice as likely to become depressed as the rest of the population,” and therapy can really help. So can meditation, exercise, plenty of sleep, and a nutritious diet, according to the National Psoriasis Foundation.
Nelson admits that sometimes psoriasis gets the better of her and makes her angry. “I am losing days of my life to beds and antihistamines,” she wrote last year. But that raw vulnerability helps her connect with other people who suffer with psoriasis and allows her to relate to them.
“If you have felt this way, you’re not alone,” she wrote in another post last year. “There’s no use in comparing your journey to anyone else’s. You’re in a relay race all by yourself and you have to keep showing up for you. If today, it takes all the strength you can gather just to do your morning routine, and that takes you hours instead of minutes, don’t worry. You’re winning. Keep going.”
But that realness never comes without hope. Nelson knows she and those who have psoriasis will have good days and bad days. (And there are treatment options people can explore to have those good days!) But, she writes, they should never let psoriasis get in the way of living their lives.
“Being chronically ill sometimes means you have to mourn the you that you were before your health began to decline, and accept a new normal,” Nelson wrote last year. “You have to do this because you can’t live your life waiting to be normal. Viewing it as some purgatory between good and bad health. You have to live now, to the best of your ability, no matter the circumstance.”
Originally Appeared on Glamour