Balancing Pride and Privacy: How Psoriasis Advocate Alisha Bridges Controls the Conversation

Alisha, 32, can attest to that. While she might appear full of confidence today, she didn’t always feel that way, having been diagnosed with psoriasis at just 7 years old.

“It was around fifth grade when I started to hide it and cover it up,” says Alisha. “It affected how I viewed myself, how I felt about myself, my quality of life, and my willingness to participate in events or activities.”

Alisha says that she lived with shame for most of her life. “It’s a very visible, very embarrassing disease — the inflammation, the flakiness,” she says. But what people often don’t realize is how much psoriasis affects a person’s mental and emotional health too.

“Growing up with psoriasis — the physical part was tough, but I think the mental and emotional part was the hardest,” says Alisha. “It always became most overwhelming when I was placed in a position where I would have to show my skin.”

This overwhelming feeling of anxiety showed up time and time again for Alisha. If she was invited to a pool party, would she wear a swimsuit and get stares and questions from the other kids, or go fully dressed and risk being made fun of because of that? For a track race, the uniform was shorts and a tank top — Alisha would pace, palms sweating, breath heavy, overwhelmed at the thought of wearing such an outfit in front of her teammates. Then at drama club, the director wouldn’t let her use the makeup used by the other members. Picking out a dress for a pageant, going to a nail salon, even a trip to the grocery store — all of these could bring on anxiety.

From her diagnosis onward, Alisha was seeing doctors and trying various treatments for her psoriasis, but no one talked to her about this effect it was having on her life.

“I always feel like the emotional component was missed, “ she says. “I don’t think it was missed on purpose. I just don’t think they realized how much it affected me mentally and emotionally. Now I realize that I was dealing with anxiety and panic attacks.”

In 2011, Alisha was ready to leave all that behind. She wrote a “suicide” letter on behalf of her self-conscious inner thoughts to help her learn to feel more comfortable in her skin — and to empower others to do the same. “The letter,” says Alisha, “was the first step to loosening the grip that psoriasis had on my life.”

From there, Alisha got in touch with the National Psoriasis Foundation, and during a volunteer conference, she attended a workshop on how to share about the disease through blogging. She was inspired and thought, “That’s something that I can do.

“I started writing about my psoriasis journey — everything that I had been through,” says Alisha. “I didn't think that it really was going to resonate with people the way it has. But it has gone to a place that I did not imagine. So many people read the blog. So many people can relate.”

Aside from being an outlet where she could share her story, her blog opened up doors for advocacy. “It's grown into me speaking out about the disease at conferences,” Alisha says, “to doctors and researchers, to other people dealing with the condition to let them know that they can thrive with the disease.”

She’s even advocated for psoriasis research before Congress. “Every year,” she says, “the National Psoriasis Foundation takes a group of patients to Capitol Hill to talk to our Congress members about psoriasis research and legislation. We talk about how the disease affects us, and why money for research is important.”

One of Alisha’s goals in her advocacy work is to educate dermatologists and other healthcare providers about the ways in which psoriasis affects people of color differently, as well as the ways in which it looks different for them.

“The textbook definition of psoriasis is a ‘red, inflamed patch,’ but as a brown person of color, my psoriasis can range anywhere from a dark purple to a dark brown,” says Alisha. The difference can lead to misdiagnoses and delays in getting treatment.

Alisha also explains that scalp psoriasis can be a problem for African Americans because treatment usually involves the use of a special shampoo that requires washing your hair every day or two, and she says, “we don’t wash our hair that often.” This leads to treatment adherence issues and affects how well the medication works. She also says that these treatments can even damage certain types of hair.

“I always strive to make sure that I'm the voice for people of color,” Alisha says, “to make sure that we're included and to make sure that our wants and needs and concerns and challenges are known.”

While Alisha has long since said goodbye to that scared little girl who was consumed by stigma and shame, she admits that it can be easier to maintain self-confidence online than in real life. Her blog and Instagram page radiate self-confidence and body positivity, and share an honest look at what life with psoriasis is like. But in certain public situations, Alisha can still feel some of those old insecurities creep back.

“The difference,” she says, “is that I can post a picture online with a caption that says ‘psoriasis,’ but you don’t have that advantage when I’m out in public. If I'm at the grocery store, I don't have a comic bubble over my head that says, ‘Hey, it's just psoriasis,’ so it leaves those around me to just assume whatever it is that they want to assume and sometimes that's difficult and uncomfortable.”

Almost 10 years after that “suicide” letter, Alisha is taking control of her anxiety over psoriasis once again: One of her 2019 resolutions was to strive to be more confident in public.

Though Alisha has gone from being 90 percent covered with psoriasis to about 80 percent psoriasis-free thanks to a biologic medication she’s taking, the bottoms of her legs are still covered by plaques — “They’re being stubborn,” she says. While Alisha would have concealed her legs in the past when she was out and about, that’s changing.

“This summer, I’ve been going to the beach and exposing my legs, regardless of my psoriasis,” Alisha says. “That’s huge for me. It’s definitely not something I would have done 10 years ago — not even one year ago.”

Alisha is proud of her psoriasis advocacy and passionate about it, but sometimes she wishes she could go about everyday activities in peace, whether that’s to the grocery store, to the pool, or anywhere outside her house wearing shorts.

“For me, at this point,” she says, “it’s not an issue of being embarrassed by my plaques. Sometimes, I just don’t want to be a walking billboard for psoriasis — I don’t want to explain it. So I cover up when I don’t feel like being bothered with the attention.”

On such days, Alisha gets creative with her clothing. “One thing I have control over is how I dress,” she says. “Since I have control over that, I'm going to be as fashionable as I possibly can be.”

Some of her go-to fashion tips are to wear lace tops, which help hide psoriasis skin, pair funky leggings with shorts or skirts, and always carry a jacket when wearing a short-sleeved shirt. “I don’t know if the anxiety is going to hit when I’m out in public,” she says, so in case it does, “I have ways to cover up, to be comfortable, and to continue with my day.”

In the end, it’s all about doing what makes you feel confident — whether that’s covering up your psoriasis, or exposing it for the world to see.

“Some people feel as though if you're trying to cover up or if you wear body makeup, that that's not promoting body positivity,” Alisha says. ”But people have to do what they're comfortable with, and that is what is most important.”

Alisha previously thought of herself as someone who didn’t take risks and who always played it safe, and she thought that growing up with psoriasis had made her afraid to step beyond her comfort zones. But this year on her 32nd birthday, she jumped out of an airplane at 14,000 feet.

“There’s nothing I can’t do,” she says now. “I just have to have the right people [to help me]. I have to let go of fear, and I just have to find the courage. That's the message I received from skydiving that I'm trying to live by here, walking on land.”