3 women explain what it’s really like to live with disease

For the 6.7 million people living with psoriasis, the disease is about so much more than treating scaly, dry patches of skin. It can affect their career, relationships, and self-esteem.

We asked three women who are living with psoriasis how they cope with the daily struggles that go hand-in-hand with the autoimmune disease. Here's what they had to say.

After Summer Scirocco, 29, had her daughter in 2011, she thought the patches appearing on her skin were just part of the package that came with being a new mom. There was a spot on her foot that she eventually got checked out, but the doctor said it was either atopic dermatitis or a fungal infection—so she got some OTC creams and let it go.

The creams didn’t work, though, and for two years Summer says she just “sucked it up,” figuring there was nothing she could do. Eventually, though, the dry skin patches spread to her hands. “That’s when I went to a new doctor, and she told me it was psoriasis,” she says.

That doctor tried different medications like Humira and Remicade, and while Summer says the medicine hasn’t alleviated her skin issues—when the psoriasis is at its worst, she says impossibly dry patches cover her elbows, knees, feet, and more—it has improved the psoriatic arthritis and “excruciating” joint pain that also come along with the disease.

However, symptoms of the disease eventually led her to quit her job, which required her to be on her feet all day—something that became nearly impossible due to her disease. “When there are dry patches on the soles of my feet, I can’t wear soled shoes,” she explains. “I can only wear flip flops or no shoes at all, because if I do put socks and shoes on, it becomes really painful when my feet swell. Taking off socks is like peeling off a bandage, and the patches are painfully itchy but you can’t scratch,” she says.

Another side effect of psoriasis that Summer wasn’t quite prepared for: how self-conscious she’d become. “People are not educated about psoriasis, so when they’d see my hands they’d be hesitant because they think it’s contagious,” she says. “I got to a point where I didn’t leave my house for eight months except for when I had my doctor’s appointments. That depression hit me hard.”

Eventually, Summer asked herself, “What do I want my daughter to see me doing?” That got her back out of the house, and though she still struggles with her symptoms, she no longer allows herself to wallow in self-pity.

“I‘ve learned that I am much more resilient and tough than I ever imagined I could be,” she says. “With chronic illnesses, you have to be.”

Joni Kazantzis, 34, has had psoriasis for almost 20 years. After going to the doctor for what she thought were hives, she was diagnosed with the chronic skin condition at the young age of 15. (The adisease is much more commonly diagnosed in adults, according to the National Psoriasis Foundation.)

She was too young for steroids and biologics (like Humira) were too new at the time, so Joni started applying topical ointments to help get her symptoms under control. It became clear that they weren’t working, though, so instead she went to the dermatologist three times per week for 30-second light therapy treatments in what looked like a stand-up tanning booth.

“My spots faded and became less itchy,” she says of the treatment. “After six months, they completely cleared up.”

When Joni started college, her skin stayed clear for the first two years without therapy treatments. But her symptoms reappeared during her junior year, and she used a topical steroid ointment to fight the flare in between classes, a job, and a position on the kick-line team.

She'll always remember the reactions she got when experiencing a flare.

“When I got my first job out of college, some people made comments about my skin because I had dry patches on my legs, arms, chest, back, and stomach,” she says. “I dressed to cover it, but if I absentmindedly pushed up my sleeves, it showed. And when I had spots on my face, they’d get dry throughout the day. I’d have to re-moisturize to cover them up, or I’d use my hair to cover my face. I even got bangs for a while because I wanted more of my face hidden.”

As an adult, Joni started giving herself Humira injections—until she was ready to start a family. “I wasn’t sure about the side effects and my spots had cleared up, so I stopped,” she says. “At the time, Humira was fairly new so there was little information on the long-term side effects.”

Since then, Joni has been able to keep her psoriasis mostly under control without medication. But with all the creams and ointments she applies—shea butter in the morning, coconut oil under makeup, apple cider vinegar and a coconut oil-Salcura topical spray mixture at night—Joni calls her psoriasis a “sticky, messy disease.” When the patches become unbearably dry, she even wraps them in ointment and Saran wrap before going to bed. “It stops me from scratching and keeps the spots moisturized, but it’s so uncomfortable,” she says.

But sometimes, steroidal injections become what she deems a necessary evil. Now, Joni knows that stress can trigger her psoriasis, so she does her best to stay healthy from the inside out—eating healthy, exercising regularly, and steering clear of her worst food allergens, like strawberries, chicken, and eggs.

“My skin has a mind of its own and it always keeps me guessing,” she says, adding that she won’t let the disease define her. “It has helped me become more aware of what my body and mind need in order to live a happier, healthier life.”

When Alisha Bridges, 29, was diagnosed at age 7 after a bout of chicken pox, she started seeing the dermatologist on a regular basis.

“Because I was so young, all I could do was light therapy four or five times a week,” she says. (Many psoriasis medications aren't approved for children under 18.) “When I got to high school, my doctor added in occlusion therapy, where they rub you down in crude coal tar and wrap you in wet pajamas and a plastic suit for eight hours at a time. I’d have to do that five days a week for three weeks at a time.”

While researchers don’t all agree on exactly how occlusion therapy works, it is thought that the crude coal tar can slow the rapid growth of skin cells, and in some cases, have an anti-inflammatory effect and reduce the itching and scaling. And according to the American Academy of Dermatology, it often brings about high clearance rates and long remission times.

Since she had to be covered in tar for so long, Alisha would stay in the hospital so doctors could monitor her progress. She was happy that it worked, but being a teen who had to push pause on her life for these treatments wasn’t exactly her idea of fun—and she missed a lot of school.

“When I was 20, I was finally old enough to start taking Enbrel, but I stopped seeing results after eight months of treatment,” she says. “Then my doctor switched me to Stelara, and that put my psoriasis into remission for a year.”

Though she’s still on Stelara, Alisha is considering a treatment switch again, as her legs are now covered with patches. That’s not unusual, as many psoriasis patients taking biologics often see a period of improvement followed by a drop in the drug’s effectiveness.

In the meantime, Alisha tries to keep her patches covered with clothes that won’t soak up the ointment. “Every time that I put on a topical cream, I have to think ahead to the type of material I’m going to wear because the ointment can destroy your clothes,” she explains. “Denim and cotton are basically my only options, because spandex and rayon can’t hold up to the ingredients.”

Still, when she looks back on the 22 years that have passed since her diagnosis, Alisha says that she’s learned to get past feeling judged and like she's not good enough. “Most of the time, it’s your own mental insecurities at play,” she says. “You can’t comprehend that people will love you when you can’t love yourself. But by sharing my story, I’m able to cope better than when I was battling the disease alone.”