A keen athlete, Ronnisha, 33, first noticed stiffness in her back and hips in 2008 when she was in college. She was diagnosed with psoriasis three years earlier in 2005, but it wasn’t until 2017 that she learned she’d developed psoriatic arthritis.
As the Mayo Clinic explains, psoriatic arthritis is an autoimmune disorder that occurs when your immune system mistakenly attacks healthy cells in your body. People with psoriatic arthritis often experience swelling and pain in their joints as well as joint stiffness and fatigue—all of which can make it difficult to get out of bed, much less exercise. As in Ronnisha’s case, most people who develop psoriatic arthritis were previously diagnosed with psoriasis (a skin condition that manifests as scaly patches that can feel itchy and sore).
Ronnisha struggled for years to get doctors to take her condition seriously, during which time her symptoms got progressively worse. She’s now learned ways to manage her psoriatic arthritis and is committed to passing on her advice and encouragement to others. Here’s her story about living with psoriatic arthritis.
For my senior prom, I bought a beautiful backless dress that I couldn’t wait to wear. But when the time came, I was so self-conscious about the scaly white patches that had appeared all over my body I had sleeves sewn onto the dress to cover my arms. I asked the makeup artist to cover my back with foundation.
Doctors didn’t know what was wrong, and it felt like they didn’t believe me when I told them how bad the patches were. I’m a big researcher, so I did some investigating on my own. I asked my doctor about psoriasis and was told, “Black people don’t get that.” It was only after I found out that my cousin had psoriasis that I was able to receive a biopsy just in case. It came back positive, and I was diagnosed in 2005.
Being able to put a name to what I had didn’t help me feel better. Psoriasis hit my self-esteem hard. I was 18, crying in my dad’s arms over how badly I felt about myself. I didn’t tell anyone except my family and my then-boyfriend. Someone told me psoriasis was contagious, so I refused to touch anyone.
I struggled to get my doctors to listen to me about the severity of my condition. The psoriasis was sore and it kept spreading. At its worst, the patches covered 35 percent of my body, including parts of my face, yet my dermatologist told me it wasn’t serious enough to justify the level of treatment I needed. I eventually found another doctor who really listened and helped me.
I felt so alone. Now, I know that stress is a major trigger for me, and being covered in patches at the time stressed me out, which made the flare-ups worse. It turned into a vicious cycle.
In 2008, I was in college when my hips and lower back became really stiff and sore, especially when I woke up. As part of the cross-country team I was used to running for miles, but I was suddenly getting injured. I had recurring Achilles tendinitis (inflammation in the back part of my heel that wouldn’t go away) and swelling. I dislocated my knee twice. Running, which had once brought me so much joy, became too painful to even attempt. On top of that, I’d always been an energetic, active person, but I started feeling tired all the time.
This instigated another round of trying to convince doctors to believe that I was in pain. It took nine years to finally get a psoriatic arthritis diagnosis. And during that time, my symptoms became even more severe. My nails separated from my nail beds. Sometimes my toes would go numb.
The condition changed my personality. I’d always loved sports, but I became too self-conscious to join any teams. What if I had to wear shorts? Plus, I didn’t have the energy to do things I previously enjoyed. My friends couldn’t understand why I wanted to crawl into bed instead of going out with them. I blamed myself—I thought I was lazy.
Since then, I’ve figured out ways to help manage my psoriatic arthritis, including medication. It doesn’t take my symptoms away completely, so I still get pain and stiffness in my joints, as well as flare-ups when the medication wears off.
I’ve also picked up non-medical tips and tricks from the internet and from my mom, who has a different kind of arthritis. For example, stretching, exercise, and taking a warm bath with Epsom salts all help soothe my joints. I also invested in the Delta Faucet 7-Spray Touch Hand Held Shower Head (Amazon, $25). It has really powerful spray options and the combination of heat and pressure helps soothe the soreness. I just try out different things and see what works for me. Unfortunately, I have not been able to run again. I do more gentle exercises now, such as riding a stationary bike and taking brisk walks around the track.
Managing my stress is a big challenge, especially in 2020. I try to avoid discussing politics and religion with people I know will try to turn the conversation into an argument. I also limit my social media use.
Of course, I was worried about COVID-19 because the treatment I receive suppresses my immune system and makes me more vulnerable to infections. I called my doctor immediately when the pandemic started, and based on my doctor’s advice, temporarily went off my treatment. But then my psoriasis flared up, so in June I got another dose—and then I got COVID-19.
I had severe symptoms. I had to make a conscious effort to breathe and it felt like something was sitting on my chest. Fortunately, I wasn’t hospitalized. I spent 25 days in quarantine and keeping up my news-free bubble helped me get through that time. Reading headlines about COVID-19 isn’t helpful when you already have it. It was a scary time, but making it through really gave me a new lease on life: I don’t sweat the small stuff now.
I’ve learned that the best way to handle people staring at my psoriasis is by educating them. I used to wear long sleeves even in the summer, but that only draws more attention. If I saw someone looking now, I’m at the point where I could bring it up and explain about psoriasis, so it wouldn’t be the elephant in the room. I find that confidence goes a long way. I’ve also found that if I look like I’m having a great time, people pay less attention to the psoriasis patches on my skin. I’m not going to cover up for other people’s comfort anymore.
I’ve made it my mission to help other people, especially other Black people, since I felt so alone when I was first diagnosed. I want them to know that I’ve been where they are and made it through—and they can too. I went back to school, became a licensed cosmetologist, and started my own company of skin-care products, Demosea. I also started a Facebook group where people can send me questions and I’ll do my best to respond. I also post pictures of my own skin in the group to show that flare-ups are normal and nothing to be ashamed of.
I now have a brilliant dermatologist, but I spent years being dismissed and ignored by medical professionals. And that’s such a common experience for Black people. Because of that, I would like to tell people that you need to be your own advocate. Do your research, ask questions, and don’t accept everything at face value. Don’t be afraid to shake the table and get the help you need.
This interview has been edited and condensed for clarity.