Joni Kazantzis was 15 years old when she woke up one morning covered with red, scaly spots that looked a lot like chickenpox. It happened overnight, so her mother thought it may have been an allergic reaction. But within the same week, she got a diagnosis: guttate psoriasis. That’s a type of psoriasis that shows up as small, round spots called papules. The papules are raised and sometimes scaly.
As a high schooler, being covered in spots made Kazantzis incredibly self-conscious and affected her confidence. In fact, she says she has no photos from that time because she wouldn’t let anyone take them. Treatment was an ordeal, too.
That was more than 20 years ago. “When I was first diagnosed, I was sent home with a bunch of creams -- really greasy and gross creams -- with the instructions to put them on before bed and put on Saran Wrap to make sure it stayed on all night. I just remember it feeling disgusting and gross,” says Kazantzis, now living in Princeton Junction, NJ.
There’s often a level of stigma attached to the condition, notes Rebecca Pearl, PhD. She’s an assistant professor in the Department of Clinical and Health Psychology at the University of Florida.
“One of the common stereotypes that’s documented in the literature and that we hear from patients is the assumption that the skin disease is caused by poor hygiene, and that people are dirty when these physical lesions are seen,” she says.
Howard Chang, an ordained minister who’s had severe psoriasis since age 9, says he was bullied in high school. An incident in the boy’s locker room still stands out to Chang, now 49.
“A couple of boys from the football team really started to go at me. They asked me if I had AIDS and they said, ‘Get away from me. … ’ I thought that they were going to get violent,” he says. “I was really depressed and socially withdrawn, especially through those younger years into college.”
Kazantzis had a very accepting and supportive group of family and friends. It was assumptions and rude comments about her skin by adult strangers that left her feeling uncomfortable. As a teenager, she remembers a middle-aged lady berating her for being on the beach with what she thought was chickenpox.
“A simple question would have changed the situation,” Kazantzis says.
Something as simple as picking out what to wear each day can be hard. This was true for both Kazantzis and Chang. Each tried to hide their red, scaly skin as much as possible.
“I wore pants up until it was probably way over 80 degrees,” Kazantzis says.
For Chang, who grew up in Northern California, long sleeves and full-length slacks or pants became a wardrobe staple despite the scorching 105-degree summers. The only time he didn’t have a choice was when he ran track in high school, a sport he loved. Chang just wanted to run but couldn’t help feeling “self-conscious all the time.”
“Always being on guard” can take a toll on your mental health and affect day-to-day quality of life, says Pearl.
“These kinds of concerns about being judged by others, or being rejected by others, is a form of stress. And that kind of anticipated rejection from others, be [it] on one's body or stigmatized characteristics, can be sort of a constant threat in their daily life,” Pearl says.
Coming to Terms
Joining a faith fellowship his sophomore year of college and finding a supportive group of friends, along with his wife, was a turning point for Chang.
“I found acceptance there,” he says. “They saw me, including my skin.”
“As I got older, I accepted that psoriasis was just a part of my life and it's going be a part of who I am,” Kazantzis says.
While treatments like phototherapy, lotions, creams, and other medications can slow cell growth and keep skin from scaling too much, there’s no cure for psoriasis. But there are steps you can take to make peace with your skin.
Start with self-acceptance. “I still don't like psoriasis,” Chang says. “But I also understand that while it's hard, it's made me probably who I am.”
This doesn’t mean giving up, Pearl says. Instead, it’s a way to acknowledge what the situation is.
“Even just saying it out loud, [like], ‘I have psoriasis,’ and sitting with that, because those kinds of statements can be painful to really sit with,” she says.
Join a psoriasis community. Connecting with others who have similar conditions helps remind you that you’re not alone and brings about a “sense of belonging,” Pearl says.
Kazantzis does this through her blog, Just a Girl With Spots, where she shares personal experiences living with and navigating psoriasis day-to-day.
Chang turned to blogging and advocacy to share his journey -- be it doctor visits, new meds, or the social stigma -- with the psoriasis community online.
If you’re not sure where to start, visit the National Psoriasis Foundation’s website. You can also ask your doctor. They may be able to point you to a local support group or other resources.
Talk to your doctor before you pick up a new exercise routine or diet plan. You can always start with a light exercise like walking and work your way up. If you have any pain or psoriasis flare-ups, let your doctor know.
Practice mindfulness. Pearl says skin exposure exercises can help you become more accepting of your condition. This may include standing in front of a mirror, even if only for a minute.
“[N]otice if negative judgments come up, like about how one looks, and letting those go and not holding on to those,” Pearl says.
You can also build body positivity by focusing on what your body does for you rather than what it looks like. Pearl says it also helps to describe new lesion patches from a neutral place of emotion. Mindful practices like mediation and tai chi may also ease any stress you may have.
Get professional help. Tell the doctor if you’re feeling depressed or anxious because of your psoriasis. There may be new treatments you can try. They also might be able to refer you to a mental health professional. This person can help you work through what you’re feeling. If you’re having suicidal thoughts, call the National Suicide Prevention Lifeline at 988 or 800-273-TALK (800-273-8255). Trained counselors are available 24 hours a day, 7 days a week to help.