On my Instagram page, I’m fearless and outspoken about my psoriasis. But it took me a long time to feel this way. To understand how I learned to love my psoriasis body and not hide it, I’m going to have to take you back to the beginning of my story.
Having psoriasis made me feel isolated when I was growing up. I started having symptoms at four years old. My parents took me from doctor to doctor, but were unable to get a diagnosis. They were told I had fungus, ringworm, and many other conditions. Psoriasis wasn’t as common at the time, and it was very difficult to get a diagnosis.
I was given a variety of topical steroids and biologics to treat my symptoms. Some worked for a short while, but I developed some sensitivities I didn’t have before I started taking them.
I was so young when my psoriasis symptoms started that I couldn’t put my feelings into words. I would cry without being able to say what was upsetting me. My skin was unbearably sensitive. Clothing tags felt like sandpaper. The elastic waistband on underwear would give me rashes. Most of the time, wearing clothes felt like bugs were crawling on me.
By the time I was in fifth grade, I had a lot of anger. I felt alone. I felt like the people who were supposed to be there for me had failed me. I felt like nobody understood what I was going through.
I hid my psoriasis from others. I was very guarded and didn’t open up about my psoriasis story. I never allowed myself to be vulnerable with people about what I was going through. I felt like an outsider.
When I was in high school, I learned about the media. And, I realized that I never saw someone who looked like me in movies, on TV, or in magazines. This had a profound impact on me. It made me feel like everything I was going through wasn’t real. Like my psoriasis didn’t exist, and it was all in my head.
I knew I had to do something. I was lonely and ready for a better way of living. I didn’t want to hide anymore. I started an Instagram page because it would allow me to share my story with many people all at once. If I had something I wanted to say, I could say it. Social media gave me the chance to start a conversation about psoriasis on a much larger scale. At the very least, I could help one person feel less alone with what they’re going through.
My community of followers started to grow. I realized it was helping so many people to talk about their psoriasis experiences. I began showing myself in a more vulnerable light. I started posting photos that showed off my psoriasis skin. I stopped hiding my bathing suit body. I never had the strength to do that before.
The journey to self-love and acceptance is different for everyone. Thanks to the new community I had, I didn’t feel like I had to hide anymore. I’m not ashamed of having psoriasis.
I don’t think I could ever go back to being silent about my condition. For me, it’s important to continue to advocate for psoriasis, so nobody ever feels alone. Hopefully, my story can resonate with others and help them to love their psoriasis body.
Ciena Rae is an actor, writer, and psoriasis advocate whose work became widely recognized online after her Instagram page was featured on HelloGiggles. She first started posting about her skin in college, where she majored in art and technology. She built a portfolio of experimental music, film, poetry, and performance. Today she works as an actor, influencer, writer, and impassioned documentarian. She is currently producing a documentary series which aims to shed light on what it means to live with a chronic illness.