Joni Kazantzis was 15 years old when she woke up one morning with red, scaly patches that looked a lot like chicken pox. It happened overnight, so her mother thought it might have been an allergic reaction. But within the same week she was diagnosed with guttate psoriasis. This is a type of psoriasis that shows up as small, round spots called papules. The papules are raised and sometimes scaly.
As a high school student, Kazantzis made her incredibly embarrassed and influenced her confidence that she was covered in stains. In fact, she says she doesn’t have any photos from that period because she wouldn’t allow anyone to take them. The treatment was torture too.
“When I was first diagnosed, I was sent home with a bunch of creams – really greasy and gross creams – with instructions to put on before bed and put on saran wrap to make sure it lasted all night. I just remember it feeling gross and gross, ”says Kazantzis, now 38 and living in Princeton Junction, NJ.
Research shows that psoriasis can negatively affect body image, self-esteem and quality of life. It can also affect your mental health and cause anxiety in social situations.
According to Rebecca Pearl, PhD, the condition is often associated with a degree of stigma. She is an Assistant Professor in the Department of Clinical and Health Psychology at the University of Florida.
“One of the common stereotypes documented in the literature and heard by patients is the assumption that the skin condition is caused by poor hygiene and that people are dirty when these physical lesions are seen,” she says.
Howard Chang, an ordained minister who has had severe psoriasis since he was nine, says he was bullied in high school. Chang, now 49, still notices an incident in the boy’s locker room.
“A couple of guys from the soccer team really started attacking me. They asked me if I had AIDS and said, ‘Get away from me. … ‘I thought they were going to get violent,’ he says. “I was really depressed and socially withdrawn, especially when I was young in college.”
Kazantzis had a very accepting and supportive group of family and friends. It was assumptions and rude comments from adult strangers about her skin that made her uncomfortable. As a teenager, she vividly remembers a middle-aged woman who berated her for being on the beach with chickenpox.
“A simple question would have changed the situation,” says Kazantzis.
Something as simple as choosing what to wear each day can be tricky. This was true of both Kazantzis and Chang. Everyone tried to hide their red, flaky skin as much as possible.
“I wore pants until it was probably way above 80 degrees,” says Kazantzis.
For Chang, who grew up in Northern California, long sleeves and long pants became a staple of the wardrobe despite the scorching 105-degree summer. The only time he had no choice was when he was running in high school, a sport he loved. Chang just wanted to run, but couldn’t help feeling “confident all the time.”
“Always on guard” can affect your mental health and the quality of your daily life, says Pearl.
“This kind of worry about being judged or rejected by others is a form of stress. And that kind of expected rejection from others, be [it] on one’s own body or stigmatized characteristics can be a constant threat in daily life, ”says Pearl.
Come to the terms
Joining a denomination during his sophomore year college and finding a supportive group of friends with his wife was a turning point for Chang.
“I found acceptance there,” he says. “You saw me, including my skin.”
“As I got older, I accepted that psoriasis is only part of my life and will be part of me,” says Kazantzis.
While treatments like phototherapy, lotions, creams, and other drugs can slow cell growth and prevent the skin from flaking too much, there is 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,” says Chang. “But I also understand that while difficult, it probably made me who I am.”
That doesn’t mean giving up, says Pearl. Instead, it’s a way of recognizing the situation.
“Even if you just say it out loud, [like]”I have psoriasis,” and sitting with it because it can be painful to actually sit with statements like that, “she says.
Join a psoriasis community. Connecting with others who have similar conditions helps you remember that you are not alone and creates a “sense of belonging,” says Pearl.
Kazantzis does this through her blog Just a Girl With Spots, where she shares personal experiences with psoriasis and its everyday life.
Chang turned to blogging and advocacy to share his journey – be it doctor visits, new medications, or the social stigma – with the psoriasis community online.
If you’re not sure where to start, visit the National Psoriasis Foundation website. You can also ask your doctor. They may be able to refer you to a local support group or other resource.
Exercise and eat well. One study found that exercising regularly can help relieve your symptoms. If you are overweight, it can also help you lose those extra pounds.
“It’s not just what you put on your skin, it’s what you put into your body. And also how you deal with your stress and mental health. Everything just connects, ”says Kazantzis.
Talk to your doctor before starting a new exercise routine or eating plan. You can always start with a light exercise like walking and working your way up. If you experience pain or psoriasis flare-ups, tell your doctor.
Practice mindfulness. Pearl says skin exposure exercises can help you better accept your condition. This may include standing in front of a mirror – if only for a minute.
“[N]Be careful when making negative judgments, for example about how you look, and let go of them and not hold on to them, ”says Pearl.
You can also build positive posture by focusing on what your body is doing for you, rather than how it looks. Pearl says it also helps describe new lesion spots from a neutral place of emotion. Mindful practices like mediation and tai chi can also relieve your stress levels.
Get professional help. Let your doctor know if you feel depressed or anxious because of your psoriasis. There may be new treatments that you can try. They can also refer you to a psychologist. This person can help you process your feelings. If you have thoughts of suicide, call the National Suicide Prevention Lifeline at 800-273-TALK (800-273-8255). Trained consultants are available 24 hours a day, 7 days a week.