My Journey to a Psoriatic Arthritis Diagnosis

In honor of May being Arthritis Awareness Month, I’d like to share my psoriatic arthritis diagnosis journey. Arthritis affects over 54 million adults and 300,000 children in the United States. It is a leading cause of disability, yet it often goes undiagnosed or misdiagnosed for years, which is what happened to me. By raising awareness, we can improve early detection and treatment, making a significant difference in the lives of those affected.

When I was just two years old, I started limping and would cry when I had to walk. My parents noticed progressive swelling around my ankle. When they brought me to the doctor, the first assumption was injury, and X-rays were done. However, the scans looked completely normal. My pediatrician was concerned by the swelling and recommended we see a rheumatologist. The pediatric rheumatologist confirmed that it was Juvenile Idiopathic Arthritis (JIA). I was initially put on high doses of Motrin, but when the arthritis began working its way up to my knee, I was treated with steroid injections. The steroids helped my JIA symptoms ease up, and I was able to have a seemingly normal childhood playing sports and performing in plays. I still required frequent doctor visits and had some physical limitations due to residual pain, but for the most part, I was able to ride that remission train all the way through adolescence.

Fast forward to my freshman year in college, I started to experience knee pain again. At first, I was in denial. I blamed it on walking around campus and living on the 4th floor of a walk-up. But when I came home for summer break and was still experiencing pain, I knew it was time to see a doctor. Unfortunately, I was now 19 and had officially aged out of seeing my beloved pediatric rheumatologist. I had to find a new doctor for the first time in 17 years.

I will never forget walking into that waiting room for the first time. Until then, I had been treated at a children’s hospital where visits to the rheumatologist meant seeing other kids, colorful walls, smiling nurses, a compassionate doctor, and a sticker on the way out. As I sat in this new, unfamiliar office, I grew more nervous by the second. Looking around at the blank walls, missing the comfort of silly murals and old waiting room copies of Highlights: Hidden Pictures, I noticed the people around me were three, four times my age. Some peered over at me with both confusion and sympathy. This is where I heard the first of many “Oh, you’re too young to be here!” comments. This was the start of my eight-year journey to a diagnosis of Psoriatic Arthritis.

My appointment with the new rheumatologist was short. The office had sent me for bloodwork in advance. When I sat in the exam room, I was told my bloodwork was “all fine” and I “seemed perfectly healthy.” I told him all about my history of juvenile arthritis. This did not faze the doctor. I was told I had no markers for arthritis and my pain was probably just tendonitis from overuse. He recommended seeing an orthopedic doctor and perhaps trying some physical therapy. So off I went to the next doctor. The orthopedic appointment felt validating! This doctor believed my pain, he thought maybe I had a tear and was eager to get me in for an exploratory arthroscopic knee surgery. I felt some hope for relief and answers. Well, not so fast. You see, psoriatic arthritis has a way of disguising itself as other conditions. The way my pain was presenting mimicked a tear in my knee, but during the surgery, nothing repairable was found. The orthopedic shrugged with confusion, wrote a prescription for physical therapy, and sent me on my way. Once again, with no clear answers for why I was in pain.

It was at this point I genuinely started to think I was imagining pain that didn’t exist. I was told I wasn’t sick, so I tried to believe it. I ignored my knee pain as much as possible, hoping it would just disappear. When the pain spread to my elbow a year later, I hesitated to seek medical attention. After the experience I had with my knee, I was discouraged, but my elbow was too painful to ignore. So, I returned to the orthopedic doctor, accepted the tendonitis diagnosis, and stopped advocating for myself. I wanted to believe the doctors were right. I carried on with moderate joint pain for several years, going through bottles of anti-inflammatories, completing endless rounds of physical therapy, and occasional steroid injections. Unbeknownst to me, my psoriatic arthritis continued to spread, untreated, causing what has now become permanent damage to my knee and elbow joints.

In the winter of 2017, I had an intense, full-body flare. I couldn’t walk, I couldn’t lift my arms. I had fevers, aches, and swollen joints. This was my first time experiencing arthritis with this intensity. When I look back, I realize I should have gone to the hospital, but so many doctors had gaslighted me at this point I didn’t believe anyone would help me. After a few days of no improvement, I put aside my hesitations and found yet another new rheumatologist. The doctor sat me down and told me there were inflammatory markers in my bloodwork. I rejoiced! An indicator that something was wrong. But then she continued to say she could not give me a specific diagnosis based on my symptoms. I was yet again feeling defeated and very lost. The doctor started me on Methotrexate, as it is often a standard starting drug for most inflammatory arthritis. The medication immediately made me feel even worse, and I had honestly lost hope in the care I had been receiving. I decided to stop the Methotrexate and went on an anti-inflammatory diet protocol. I wanted to find the answers that I wasn’t getting from doctors. While this approach eased some of my inflammation, I was still in a lot of pain every day. Unwilling to subject myself to more frustration at the hands of doctors while trying to find answers, I relied on over-the-counter anti-inflammatories.

In October of 2019, I was finally diagnosed with Psoriatic Arthritis. I was suffering through another massive flare-up and realized this was not something I could ignore, will away, or heal on my own. I scheduled an appointment with yet another rheumatologist and arrived with photos of my swollen joints, fearing not being taken seriously once again. When I showed my “evidence” to the doctor, she looked at me, seeming disappointed in her field, and said, “It’s ok. I believe you. You don’t have to prove or show me anything.” At last, I found a rheumatologist who took the time to go over the details. We discussed my medical history, concerns, and the timeline of my symptoms. I felt heard for the first time. By taking the time to listen to me, this doctor unlocked the key to my diagnosis. During my intake, I mentioned that my maternal grandmother suffered from psoriasis, a fact that never seemed relevant to any other doctor. It was then explained to me that while most PsA patients will present with skin symptoms before arthritis, I fall into the smaller percentage of patients who develop Psoriatic Arthritis before presenting with psoriasis. Being aware of family history can be an important factor in PsA diagnosis because there is no specific bloodwork test. She explained that tendon pain, known as enthesitis, is very common among Psoriatic Arthritis patients. She explained my low-back pain was not mechanical but inflammatory, that I didn’t just have puffy fingers, it’s dactylitis. Suddenly, it all clicked. I could not believe she stated all of this so clearly and simply after so many years of confusion and searching for answers.

Some might think I would have left this appointment excited or relieved to finally have a formal diagnosis. But I felt more sadness that day than at any other point in my whole diagnosis journey. I had fallen through the cracks. The psoriatic arthritis was there all along, but none of my providers had looked at the full picture. No one was listening to me. I was being treated joint by joint, pain by pain, rather than as a whole patient. I kept realizing more and more symptoms I hadn’t even pieced together myself. The fatigue, the way my nails pit and crumble. I felt so overwhelmed. I spent months wondering if I had spoken up more, and pushed harder, would I have ended up with such severe disease activity? I wished I could go back and change things. Instead, I was faced with accepting my new reality, figuring out treatment plans, and learning how to live my life at 26 with chronic pain.

Now, five years later, I have found a great care team for my needs and am on a treatment plan that has given me back so much of my life. I still have limitations and pain from permanent joint damage, but I no longer have to wonder what is wrong anymore. I have the answers I need to properly manage the care of my disease. I have found power in sharing my story, spreading the word about psoriatic arthritis, how sneaky it can be, and how important it is to advocate for yourself because early detection and diagnosis are key for effective treatment and preventing permanent joint damage.