‘I never would have thought I’d post a makeup-free selfie’: Women on breaking the stigma of psoriasis

·6 min read
Let's talk about psoriasis. (Illustration by Franziska Barczyk)
Let's talk about psoriasis. (Illustration by Franziska Barczyk)

Imagine that the stress of a work-related deadline, the cocktails you drank over the weekend or a chilly fall evening could make you wake up the next day with red, scaly, itchy patches on your skin. This is the reality for an estimated 7.5 million Americans who suffer from psoriasis — a chronic inflammatory skin condition.

Psoriasis can literally make you feel uncomfortable in your own skin. But it's more than cosmetic: Psoriasis is associated with an increased risk of cardiovascular disease and has been linked to depression, Dr. Orit Markowitz, a dermatologist at the Icahn School of Medicine at Mount Sinai and founder of OptiSkin in New York City, tells Yahoo Life. In some cases, psoriasis patients can go on to develop psoriatic arthritis, which can cause irreversible joint damage.

Not surprisingly, the skin condition can affect a patient's daily life — something Judy Schmidt knows well. The 44-year-old mom of two, who lives in Orlando, Fla., finds that during her psoriasis flare-ups, even moving her hands can be challenging. This makes it difficult for Schmidt to help her young children in the bath or manage their car seat buckles.

But it's the psychological toll of psoriasis that can be the hardest to cope with, affecting patients' self-esteem and body image and causing some to try to cover up the skin condition.

Rather than hiding, however, some women are speaking up about psoriasis on social media. They're sharing what led to their diagnosis and how they manage the skin condition, along with posting candid selfies when they have psoriasis flare-ups to break the stigma.

Nisha Shama wants people to know how
Nisha Shama wants people to know how "life-changing" a chronic skin condition like psoriasis can be. (Photo courtesy of Nisha Shama)

Not all doctors recognize the signs

At 12 years old, Nisha Shama, a student from Hertfordshire, U.K., developed scaly patches on both sides of her face. But no one, including her family doctor, knew what the patches were. While she was waiting for a biopsy, the condition spread across her body.

"I was being sent to specialist after specialist," Shama tells Yahoo Life. "At one point, a doctor said the phrase 'skin cancer,' which terrified me and my family." By the time Shama got her psoriasis diagnosis, several months had gone by. "I later learned that psoriasis could present differently on darker skin, which may have been why specialists struggled to diagnose my condition."

In fact, it can take seeing as many as six dermatologists before a person of color is correctly diagnosed, according to the National Psoriasis Foundation.

Shama, who is now 21, has found that sharing her psoriasis journey on Instagram has not only helped her but also helps to educate others. "My psoriasis was often viewed as just a skin problem, despite how severe it was," Shama says. "People need to be aware of how life-changing a chronic skin condition can be with someone’s identity and daily life. It can be debilitating to live with and is more than skin deep."

Shama adds: "Having a chronic skin condition needs to be normalized."

Victoria Voos shares that psoriasis is one of her insecurities but is also part of her self-love journey, which she shares on Instagram. (Photo courtesy of Victoria Voos)
Victoria Voos shares that psoriasis is one of her insecurities but is also part of her self-love journey, which she shares on Instagram. (Photo courtesy of Victoria Voos)

'No matter what kind of treatment I tried, nothing worked'

Being diagnosed with a chronic condition like psoriasis can be overwhelming. That’s how Victoria Voos, a plus-size blogger from San Diego, Calif., felt when she was diagnosed with psoriasis in 2010, after noticing a dry, itchy patch on her scalp that never seemed to get better. "No matter what kind of treatment I tried, nothing worked," Voos tells Yahoo Life.

It took four years for Voos to find a dermatologist who created a treatment regimen that worked for her. "My skin is the clearest it's ever been," she says. But Voos also had to come to terms with the fact that living with a chronic illness made her feel helpless. Sharing what she was going through on social media helped. "My psoriasis is a big part of me and my self-love journey, as it is one of my biggest insecurities," Voos says, "and so I knew I wanted to share more about it."

Voos adds: "I have also found the more I show and talk about my insecurities, the more comfortable and accepting I am of them. It's a little bit of serving my audience and a little bit of healing myself."

Katie Moczygemba, a nurse with psoriasis, has been sharing her fitness journey on social media and decided not to hide her
Katie Moczygemba, a nurse with psoriasis, has been sharing her fitness journey on social media and decided not to hide her "scaly patches" in photos anymore. (Photo courtesy of Katie Moczygemba)

'When I got the diagnosis, I felt heard and validated'

Katie Moczygemba, a 28-year-old trauma nurse from San Antonio, Texas, had mixed feelings when the "patches" she'd had on her body since she was five years old were diagnosed as psoriasis in her mid-20s. "When I got the diagnosis, I felt heard and validated, but I felt sadness knowing my body was attacking itself," Moczygemba tells Yahoo Life. She also feared that psoriasis would spread to noticeable parts of her body.

But then, Moczygemba had a realization. She had been chronicling her fitness journey on Instagram, learning how to share her insecurities and triumphs along the way. Why couldn’t she do the same for her skin? So Moczygemba, who has been able to manage her psoriasis by partnering with her doctor, started angling the camera so that her skin "patches" were more prominent and using more psoriasis-related hashtags on her posts.

"I had been sharing my fitness journey, and realized I was trying to cover up any scaly patches," Moczygemba says. "I enjoy sharing obstacles and insecurities and how I can overcome them."

It's something Schmidt can relate to. "I really believe speaking about this and sharing my journey shows support and community to those who watch, but don't necessarily feel comfortable doing so themselves," she says. "They are the people who need to know they are seen, even if not heard."

Judy Schmidt, pictured with her two children, hopes that sharing her psoriasis journey empowers and supports others with the skin condition. (Photo courtesy of Judy Schmidt)
Judy Schmidt, pictured with her two children, hopes that sharing her psoriasis journey empowers and supports others with the skin condition. (Photo courtesy of Judy Schmidt)

Breaking the psoriasis stigma

To combat the stigma surrounding psoriasis, Shama shares candid posts of her flare-ups while sharing information and busting myths about the skin condition, which some mistakenly believe is caused by "bad hygiene, contagiousness or a choice," Shama says.

Since Shama's psoriasis first appeared, “I used to think I was disgusting and 'ugly' and would compare myself to others," she shares. "I know that the issue wasn't myself, but cultural ideals and standards of beauty, which need to be challenged in every way."

Shama adds: "Of course, I still have my bad days, particularly when my psoriasis is painful or flares up, but compared to a year ago, I never would have thought I'd post a makeup-free selfie with my psoriasis patches uncovered. The fact that I have and continue to do so is a major sign that I'm on an emotional healing journey."