Carin B., 48, first started experiencing psoriatic arthritis and psoriasis symptoms in 2018 following a car accident. At the time, Carin thought her knee and hip pain were lingering injuries from the accident, which occurred in May. Then Carin started getting small pus-filled blisters on her hands and feet. She went to a dermatologist and was diagnosed with pustular psoriasis in July 2019, and a few months later, Carin was diagnosed with psoriatic arthritis by a rheumatologist.
Psoriatic arthritis happens when your body’s immune system attacks healthy cells, causing inflammation and joint pain, according to the Mayo Clinic. It can occur separately or alongside other forms of psoriasis, as with Carin’s case. (In fact, having psoriasis is a major risk factor for developing psoriatic arthritis.) As the Mayo Clinic explains, pustular psoriasis is a rare form of psoriasis characterized by small, pus-filled blisters.
Carin initially refused to believe her diagnosis but finally reached out to others for help when her conditions became debilitating. She found a support system that helps her get through hard days and manages her condition with a multitude of treatments including laser therapy, regular biologic shots, and pain medication. Here’s how her life changed after being diagnosed with psoriatic arthritis and pustular psoriasis.
I used to do yoga six days a week and worked out twice a day. I was a lawyer for two decades, running my own law firm for 12 of those years, and did up to 30 hours of volunteer work a week for a children’s charity. But everything changed in May 2018. While I was stopped at a red light, a woman slammed into the back of my car while driving 80 miles per hour. My car was pushed underneath the truck in front of me and then into the intersection, where I was hit again by a minivan. I passed out, thinking I was going to die.
I sustained severe injuries to my shoulder, knee, back, neck, fingers, ribs, and brain. Not one to accept setbacks, I started working from home three days later and tried to apply my typical energy during physical therapy. However, I could barely move and it hurt just to get out of bed. The joints in my hips, knees, hands, and feet were so stiff and sore. I assumed the pain was from the car accident and kept up my physical therapy even though it was agony. Then in July, I developed little pus-filled blisters on the palms of my hands and the soles of my feet. They would burst open and become scaly. As the blisters dried out, my skin thickened and then developed cracks. It was extraordinarily painful. I couldn’t use my hands or walk. I went to doctor after doctor looking for a diagnosis. No one knew what was causing the pustules and many of the doctors told me it was ringworm, which I knew it wasn’t. The sores were getting worse, bleeding through the gauze I carefully wrapped around my hands and feet every day.
Finally, I met a dermatologist who changed my life. During our first appointment, she gently took my hands and told me that the blisters were caused by pustular psoriasis. She explained that it’s a chronic and unpredictable disease that would affect me for the rest of my life. I also learned that the stiffness I experienced was due to psoriatic arthritis and not just the injuries caused by the car accident. My doctors can’t say for sure, but they think these conditions may have been triggered by the trauma of the car accident. [Stress and physical trauma can trigger psoriasis and psoriatic arthritis in people who are genetically prone to the condition, according to the Mayo Clinic.]
Hearing that I would have this debilitating disease forever was a complete shock. Initially, I refused to believe my doctor. I thought, You don’t know me. I would just do more yoga and stretching. I would continue with an anti-inflammatory diet. I always believed that I could do anything—there was nothing that could hold me back.
One day, on my way home from a medical appointment, I went to a grocery store. The blisters on my palms and soles started bleeding through my socks and gloves. When I went to pay, the cashier recoiled at the sight of my hands and called her manager to deal with me. I tried to explain to everyone that I wasn’t contagious, but they looked at me with disgust. I felt like a monster. Over the next month, I barely left the house, which caused my joints to seize up and get stiff. I had always been the person who helped others. But in my darkest hour, I realized it was time for me to reach out for support.
I started contacting people I knew for help: my aunt Pat, a former law colleague, my yoga teacher, a doctor I had met through my new job in health care. (I am now the director of social media at a medical education company.) All of them rallied around me.
I reached out to the National Psoriasis Foundation (NPF). Almost immediately, one of the directors called me. She spoke to me for an hour and followed up by sending over some resources. The NPF also put me in touch with a group of people with psoriasis and psoriatic arthritis in my region. I participate in monthly Zoom calls where we all talk about what we’re going through.
Being diagnosed with psoriatic arthritis and pustular psoriasis completely changed the trajectory of my life. In some ways, I still can’t believe this has happened to me. In my dreams, I still do flips and handstands. It’s a shock when I wake up and remember my new reality.
Most mornings, I can barely get out of bed. But I force myself to stretch and take my Pomeranian Mr. Darcy for a walk. He has the world’s smallest bladder, so he needs to walk every two hours. That’s actually good for me, because once I’m moving—even if I’m crying at the same time—I know I’m slowly working my joints so they won’t seize up and get stiff.
The conditions tend to ebb and flow, so I do have periods where my hands and feet partially heal and the inflammation goes down so I can move with less pain. But then I’ll have another flare-up, brought on by a range of factors including stress, the weather, or a secondary illness, and I’m back to being impaired. I still haven’t made peace with the fact that there are some things I can’t physically do, but I’m never going to give up. I still go to hard yoga classes, even if I can’t perform all of the moves. I still play the piano, like I have my whole life, even if my fingers can no longer bend to press the keys like they used to.
However, as hard as it is, some changes have been for the better. I learned who my real friends are—and they weren’t always the people I expected. I found a job where I feel like I get to make a difference and where I’m valued every day. Now I’m the director of social media for a large medical education company, and I feel like I’m fulfilling my true purpose. I’m part of a company that helps doctors further their education so they can help people. And most of all, going through this experience has taught me empathy. I’ve always loved people, but now I have a deeper love for others that I didn’t have before. I feel like this whole thing brought me so much clarity. I’m thankful for every day and every step that I take.
This interview has been edited and condensed for clarity.
Related:
- 9 Self-Care Tips for Anyone With Psoriatic Arthritis
- 6 Ways Psoriatic Arthritis Can Affect Your Nails
- 9 People Explain What It’s Really Like to Live With Psoriasis