I couldn’t walk.
At 20 years old, psoriatic arthritis had mostly encompassed my body. I had trouble getting out of bed, walking up and down stairs, lifting my arms above my head, and functioning as a normal young woman. I couldn’t understand what was wrong with me until during one of my UVB light sessions, a dermatology nurse mentioned I really needed to see a rheumatologist.
I developed psoriasis as a child and was diagnosed at 12 years old. Around the same time, I started having aches in my hands, and a major injury to my left middle finger never healed correctly. That “injury” was actually dactylitis, commonly referred to as “sausages digits,” which is extreme inflammation to the hand joints and tendons. That finger is now heavily mutilated and can no longer straighten. In the years it’s progressed, the arthritic factor or the possibility of damage it can cause my joints wasn’t mentioned by my primary care team. I have always been involved in sport leagues and high school competitive sports, so all the aches and pains I had experienced had always been attributed to my active lifestyle.
Full of nerves as I sat on a chair in the rheumatologist’s office at my first appointment, the nurse took my vitals, handed me a gown, and asked me to undress and wait for the doctor on the exam table. I couldn’t get up onto the table. I couldn’t lift my knee, my hips wouldn’t flex, and I couldn’t put enough weight on my ankles to lift my body onto the exam table. I was a sobbing mess when the doctor came in. I explained I was in so much pain and ashamed that at 21 years old, I couldn’t make my body work the way I was used to it working. We did my exam while I sat on a chair, and he diagnosed me immediately: psoriatic arthritis. I knew it would be. But somehow hearing the doctor explain it, it became too real.
I cried in the car, sobbed at the idea that I was gently told it’s OK to use a cane or even a wheelchair when needed, all these years I had refused, puttered, and limped along, too proud of the fact that just a few years prior I was running up and down a field. Now, I could barely move.
Psoriatic arthritis is a chronic and painful inflammatory disease of the joints, tendons, and ligaments. About 30% of psoriasis patients develop psoriatic arthritis within 10 years, though some with PsA can develop without any skin occurrence. Unfortunately, PsA is also heavily associated with comorbidities such as cardiovascular disease, metabolic syndrome, kidney disease, and obesity.
I would be well into my mid-30s before I finally learned to manage both psoriasis and psoriatic arthritis. Years of missteps with treatments and not being kind to my body or health had taken their toll physically and mentally. I would still operate under the impression of having a very able body and push myself to do things when I should rest. At times, a treatment worked for my joints but not my skin or vice versa, forcing me to choose which I wanted to treat at that moment. I would always choose to treat my joints; I needed my physical freedom.
Now, having more information, better treatments, and a large social media community has helped me create a better lifestyle for myself. It feels less isolating, and I no longer see PsA or arthritis in general as an “old person’s disease.” Learning to live a full life with pain and some physical limitations hasn’t always been easy, but when I accomplish a physical goal, I can’t begin to describe the emotions and joy when it’s done.
Today, my new physical goal is to hike the Grand Canyon, rim to rim. I’m excited to live my life. Though some days are filled with pain, I now have the resources to get through my day. I also no longer feel the guilt of listening to my body and rest when I need to. There’s no need to push through my day — I just enjoy my time.