Nicole Cech to Hallie Levine
When I was diagnosed with psoriatic arthritis 2 years ago at the age of 24, I was almost relieved. Over the years, I have experienced inexplicable symptoms. I have deep purple brown flakes on the back of my neck and in the crevices of my feet. The bouts of fatigue prevented me from concentrating on my work. Joint pain keeps me from doing my favorite workouts.
Suddenly, there seemed to be a missing puzzle piece. While it’s hard to accept that I have inflammatory arthritis, I’m also relieved to know what it’s all about. Hopefully I can move on and live my life.
Unfortunately, it did take me many years to get a diagnosis. My story is not uncommon. Psoriasis, including psoriasis and psoriatic arthritis, is underdiagnosed in black patients, research suggests. We are also less likely to have access to appropriate treatments for our psoriatic arthritis, such as biologics. Here’s my story, hope it helps someone else.
puzzling rash
I suffered from psoriasis for many years before my official diagnosis. I first noticed it when I was 7 years old, after a bout of strep throat. I experienced a full body outbreak similar to my current psoriasis flare. My doctor was completely puzzled as to what that was. They diagnosed eczema even though it didn’t look like it. Instead of red, my rash is a deep purple-brown color. It doesn’t itch anymore.
As I got older, I also noticed other unexplained symptoms. I’ve been very active and often walk 5 miles a day. But that level of exercise starts to cause back pain. I noticed that I couldn’t complete my workouts without experiencing joint pain. I remember taking a class that involved a lot of jumping and running, and halfway through it I started crying. My primary care physician sent me to see specialists, including a dermatologist and a rheumatologist, who told me the pain was all in my head.
moment of clarity
I worked for a skincare company for 3 years. I spend my days with a dermatologist and am well versed in medical journals. I started to realize that something was wrong with my diagnosis of eczema. I decided to see a black dermatologist. When she saw me, the first thing she said to me was, “It’s not eczema.” She explained to me that while many dermatologists look for pink or red patches with silvery white scales to diagnose psoriasis, but they usually appear as purple patches with gray scales on dark skin.
She also took the time to ask me if I had any other unusual symptoms. When I brought up the fatigue and joint pain, she told me she thought I might have psoriatic arthritis. She was prescribed Cosentyx, a biologic commonly used to treat the condition. It works by targeting interleukin-17, a protein associated with inflammation in psoriasis.
After seeing the dermatologist, I went to the rheumatologist to confirm the diagnosis. I left the date in tears. She was very dismissive. She said to me point-blank, “It sounds like your dermatologist has this, so I’m not sure what else you want me to do,” and left the room without even saying goodbye. As soon as I got in the car, I googled other rheumatologists in my area. I found a great doctor who took a more holistic approach. She told me her goal was for me to live my life and do whatever I wanted. She ended up prescribing me a new biologic, Humira, which was more effective than Cosentyx for my symptoms. She was also watching me very closely. She would give me steroid injections for excruciating joint pain and make sure the other meds I was on, like NSAIDs, weren’t messing with my stomach.
live my life
Today, my psoriatic arthritis is not gone but is well under control. I’m taking another biologic called Enbrel as a weekly injection. I also changed my mindset. My goal is pain relief, not 100% freedom from chronic pain. I just want it to stay in control enough that I can do what I need to do, whether it’s at work or at home. I’ve also learned to be mentally comfortable with my limits and to be kind and gentle with myself when I’m experiencing fatigue.
Part of my adjustment to life with psoriatic arthritis has also been taking on the role of an advocate. As a black woman, I realize that many medical professionals simply don’t think my pain is real. As a result, I also got used to not seeing it as real. I think that’s one of the reasons that even with my diagnosis, I’m still hard on myself if I can’t do everything I want or need to do. There’s an unspoken expectation that as a woman of color, you can’t feel pain, and if you do, you have to live with it. I don’t need to look further than my mom and grandmother. They grew up in a time where if they did feel pain, they would just move on. While none of them have psoriatic arthritis, there are many black people with psoriatic arthritis who don’t get the care they need.
That’s one of the reasons I’m involved with CreakyJoints, an international digital community for people with arthritis and their caregivers, which is Global Healthy Living Foundation, a nonprofit organization dedicated to improving the quality of life of people with chronic diseases such as psoriatic arthritis. I spoke with Shilpa Venkatachalam, PhD, MPH, their Director of Patient-Centered Research Operations and Ethics Oversight, about some of the stark health disparities we’re seeing in psoriatic arthritis. She noted that while it may appear that white people are being diagnosed with the disease more often than people of color and black people, there may be many black and Latino people with the disease who are not because of disparities in access to care. Nursing and other insurance-related barriers to being diagnosed or underdiagnosed leading to suboptimal care.
Disparities in care are exacerbated by the fact that lesions on dark skin are often unrecognized, misdiagnosed, or overlooked at the time of diagnosis. The solution is not just to tell patients they need to advocate for themselves. While this is important, we need to address systemic barriers, for example, medical schools need to build larger, more inclusive image repositories so they can adequately train students on what psoriatic lesions look like on darker skin. The earlier patients are diagnosed, the sooner they can be treated with cutting-edge medicines such as biologics, improving their outcomes.
As for me, I consider myself lucky because I followed my gut and went to a black dermatologist who listened to me. I’m also lucky to have an amazing husband who is supportive and doesn’t ignore my symptoms. He has his own health issues, so he gets it. I’m also very lucky to have my own creative outlet. I write and make art, and those two things got me through the tougher parts of my diagnostic journey. It brings me joy, especially on those days when I feel trapped inside my body. This is a powerful way to help me cope.
