Check out Psoriasis: An Inside Out Disease for more information on this topic.
They thought it was chicken pox. When 7-year-old Alisha Bridges complained about dry, itchy, and inflamed skin, her family never expected the diagnosis to be psoriasis.
Being diagnosed with this autoimmune skin condition at such a young age was — and still is — uncommon. Most treatments available were not safe for children. Alisha was denied coverage for biologics because of her age, despite her doctors’ appeals to her insurance company. Additionally, many treatments were not tailored to African Americans. These challenges were compounded by the limited knowledge of psoriasis a few decades ago.
“It has been an uphill battle,” says Alisha. “Having psoriasis at such a young age was pretty difficult. It brought unique challenges to how I navigated life and viewed myself.”
Around age 10, Alisha began to feel self-conscious about her skin and started to cover up. The disease impacted her self-esteem and her willingness to engage in activities.
Learning to Cope Through Withdrawal
Growing up, Alisha experienced years of frustration and heartache. She avoided social activities during her teens, whether it was sports or pool parties — anything that would expose her inflamed, flaking skin.
In her teens, Alisha learned to wall off her feelings from others. “I coped by not telling people how much psoriasis impacted me. I coped by doing the best I could — internalizing and staying in my own head.”
“I remember going to a pageant — the first time I’d wear a dress and a short-sleeve shirt, and my anxiety was 1,000 percent. I was irritable. At that time, I didn’t know that anxiety could present itself as irritability.” Her family just thought she was having an attitude. “I felt so misunderstood because I was unable to express how much turmoil I was going through,” she adds.
She is grateful for a small group of friends who stuck by her during that time — and they are still friends to this day. “They didn’t always understand what was going on with my skin, but they always loved and respected me. They showed me care regardless of me isolating or wearing long sleeves and pants in 100-degree weather.”
A Decision to Be Open That Changed Everything
At age 23, Alisha’s struggle reached a turning point when she decided to write a symbolic “suicide letter” in a blog post, which ignited support from her community. “It was about killing the parts of me that would not allow me to live. Things like fear, worthlessness, shame, and sadness.”
“I was frustrated at how the disease was impacting my quality of life, and I wanted those parts of me gone,” Alisha says. She poured her heart out in that letter, publicizing a struggle she had tried to keep secret for so long. Her honesty touched many people.
As a result of the letter, the National Psoriasis Foundation (NPF) reached out to her, and she had her first taste of being an advocate for herself and eventually became one for others. The response to the letter helped Alisha realize she was not alone. “Other people were living with the disease in isolation and silence,” she says. At one NPF meeting, she saw a teacher from her elementary school who had also been keeping his psoriasis a secret.
Knowing there were others who could relate to her experience was encouraging. “It gave me the motivation and empowerment to share my story. The more I share my story, the more confidence I gain to be open and honest about my experience living with psoriasis,” she says.
Finding the Right Treatment
It took Alisha two decades and a lot of trial and error to find the right psoriasis treatment. She tried topical steroids, phototherapy, occlusion therapy, oral medications, special diets, and biologics. After finally finding a treatment that worked for her, Alisha has been 100 percent clear for the past two years. She was 90 percent clear for six years before that, and prior to that, was 90 percent covered.
“It’s crazy to say out loud because at one point I never thought I would have clear skin,” she says. “Just saying this out loud is amazing to me.”
Alisha spent years feeling self-conscious about her psoriasis, often overthinking outfit choices and worrying about what others might think if her skin was exposed. “I am really grateful that I don’t have to worry about that anymore,” she says.
However, Alisha discovered that her self-esteem issues go further than skin deep. “Once my psoriasis was gone, I still struggled with self-love and feeling worthy. That was a core issue that continued to haunt my life, so I really had to dig down deep and explore those reasons.” Through this process, Alisha learned valuable lessons about self-acceptance. “Psoriasis taught me how to love yourself in the moment whether you are 90 percent covered or not. And to learn to have grace for yourself in those moments when you feel bad about it.”
Making Your Voice Heard
While Alisha is proof that there have been significant gains in psoriasis treatment, she emphasizes the need for more awareness of treatments targeted to Black patients. “It was tough to find a dermatologist who understood psoriasis in a person who was African American,” she says. “A textbook does not always reflect how psoriasis can present in a person of color.”
Alisha shares her wisdom about being vocal about your disease. “We need to have our voices heard so they can tailor treatments to actually help us,” she says.
- Be vocal about your frustrations with ineffective treatment. “The only way it gets better is if you vocalize what’s not working.”
- Participate in clinical trials. “While there are some risks involved with any experimental medication, we won’t know the effect a medication has on Black skin if it hasn’t been tested.”
- Participate in patient advocacy groups. “The more that diverse voices are heard, the more representation there will be in panels, education, treatment, and research.”
Join GHLF’s HEROES Program
GHLF invites you to make a difference in your community with our FREE and unique program called HEROES (Health Education + Reliable Outreach + Empathetic Support). HEROES is a FREE education and outreach initiative that equips beauty professionals to better support clients living with scalp and other skin conditions and offers people living with skin and scalp conditions helpful resources and information on getting a proper diagnosis, managing symptoms, and becoming an empowered patient. To learn more, visit GHLF.org/HEROES today.
