Alisha Bridges: My Experience With Plaque Psoriasis

From verywellhealth.com

The first time I realized people viewed me differently was in middle school. There were times growing up that if I could have worn a full-body suit with a hood over my face, I would have.

I remember beauty becoming important to my peers around age 10. I started to notice the stares and whispers. At that time, my skin was about 90% covered with flares from plaque and guttate psoriasis. 

As a child, it was hard to embrace something that made me different from my classmates. I didn’t understand what it meant to have a chronic illness. All I knew was that I had dry skin that was itchy and unattractive, and I hated it. Not only did I have a disease that covered my body, but I also had the responsibility to explain it to my peers and the adults around me.

I grew up in the 1990s, during a time when people didn’t know much about psoriasis. I remember the awkward moments when my classmates asked what was on my skin. As I rambled to explain, I found it only led to more questions that I was uncomfortable answering or was unsure about.

While in school, I opted out of sports because I didn’t want to wear the uniforms required to play. These outfits required shorts and tank tops. I was more at peace with not participating than having to deal with the stress and insecurities that came with showing my skin.

High school is when my psoriasis started impacting my self-esteem the most. During my freshman year, I was cast in the school play, Pinocchio. During our very first dress rehearsal, our drama teacher brought makeup for the cast to use.

Excited and eager to do my makeup as Ms. Fire-Eater, the villain of the show, I began to pick out my hues. The drama teacher stopped me and, in front of everyone, said, “Oh no, you can’t use any of the makeup I bought. I don’t know what’s going on with your skin.” I was hurt and embarrassed, and I felt powerless.

However, there was a silver lining. There was an assistant teacher by the name of Ms. Dee, who I told what happened. The next day, Ms. Dee came to school with a bag of samples from MAC Cosmetics and gave them to me. That was the first time I had ever heard of MAC, and I still use it as my main source of makeup.

Turning Over a New Leaf

I started to come out of my shell and feel more comfortable with myself after college. Eventually, I found an online support group for people living with psoriasis. During this time I felt extremely frustrated with my skin.

I decided to share my frustrations on the support group with a blog entitled, "My Suicide Letter." The letter is not about physical death, but a metaphor about killing the parts of me that were ashamed to live, due to my psoriasis, so I could experience a better and happier life. At the end of the letter, I proclaim ridding of the shame might be a slow death, but eventually, it would be no more.

The support and love I received from that letter was unexpected. Followed by the outpour of support, someone sent the letter to the National Psoriasis Foundation, who then invited me to their annual volunteer conference. It was my first time meeting people living with the disease, and it was what catapulted me into advocacy work.

Courtesy of Alisha Bridges

The Ups and Downs of Treatment

I’ve tried every treatment under the sun, which ranges from phototherapy to topical treatments to oral medications to now biologics, which have proven to be the most effective for me. Biologics are injections that suppress a part of your immune system that is overactive and causing the psoriasis flares.

When the COVID-19 pandemic began, there was uncertainty about the safety of biologics due to it suppressing the immune system in those who use them. In early February 2020, my healthcare provider advised me to postpone use. However, after a thorough conversation with my healthcare provider about the risk, I came to the conclusion I still wanted to continue.

So far, I have used five different types of injections. Treatment is not one-size-fits-all. What may work for one person may not have any effect on the next. Each biologic is constructed to target different parts of the immune system. Unfortunately, there is no test that indicates what part of your immune system is causing psoriasis. The process is simply trial and error and seeing what works.

Humira and Enbrel don’t work for me. They are TNF-alpha inhibitors, meaning the drugs are fighting against the overproduction of TNF-alpha proteins. Since they didn’t work, that tells me that my immune system doesn’t have an issue with TNF-alpha.

However, Skyrizi is a biologic that bonds with excess interleukin (IL) inhibitors, specifically IL-23 proteins, and it works really well. It cleared my skin up about 90%. I also tried Waltz, which cleared me up 100%, but after a while, it started failing.

So it’s a trial and error. You have to put yourself at risk for potential side effects of treatment that you don’t even know will work.

My medicine costs $16,000 for two injections every three months. Biologics are expensive, but there are patient programs available that can help you pay for your treatment.

Side effects are typically a top concern for patients and can vary from person to person. A common side effect of biologics is upper respiratory conditions like the common cold. COVID has made this side effect increasingly difficult, because now every time I get sick, I fear I might have COVID-19.

In my experience, there are a lot of healthcare providers who aren’t well-versed in Black skin or our culture. For example, I have scalp psoriasis. I wash my hair maybe once a week. I was given a treatment that requires you to wash your hair three to four times a week. But all that water is damaging for my hair.

That treatment is constructed for someone who I can’t relate to, but I’m required to use it. It wasn’t women like me in those clinical trials, but I’m using the medicine.

I recommend finding a healthcare provider who has worked with Black skin and someone who is involved in research.

As Black women, we deal with a lot of cultural challenges, like not telling your business and keeping struggles to yourself, not trusting healthcare providers, socioeconomic issues of not having insurance, or even being able to get to the doctor.

All of these can make getting help more difficult. That’s why it’s important to find other women who you can relate to in online support groups. I also recommend getting involved with the National Psoriasis Foundation, no matter what your ethnicity is.

A Continuing Struggle

It’s easy to look at someone like me—a patient advocate openly speaking about their disease—and think that I’m always confident. I still have bad days. I still hate the fact that I have psoriasis.

I despise the moments I have to fight with insurance companies to obtain my treatment or attempt to be the middle person between insurance, the pharmacy, and healthcare providers. It’s always a real reminder that although I’m currently clear from psoriasis, I still have this disease and it will continue to impact my life.

Meet the Author

Alisha M. Bridges is an award-winning writer, public speaker, media consultant, and health activist. She advocates on behalf of patients to bridge the gap between the medical community and patients living with chronic disease. Alisha volunteers with the National Psoriasis Foundation, where she speaks openly about her own experience with psoriasis at conferences.

https://www.verywellhealth.com/alisha-bridges-my-experience-with-plaque-psoriasis-5204989