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, we’ve even 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. “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 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.”