The PsA was there all along, but no one was seeing the full picture. I was being treated joint by joint, pain by pain, rather than as a whole person.
When I was just 2 years old, I started limping and would cry when I had to walk. My parents started noticing swelling around my ankle that seemed to be getting worse.
When they brought me to the doctor, the first assumption was that I had injured it. They had X-rays taken and everything looked completely normal. My pediatrician was still concerned about the swelling and recommended we see a rheumatologist.
The pediatric rheumatologist diagnosed me with juvenile idiopathic arthritis (JIA) in 1995. At first, I was treated with high doses of ibuprofen. When arthritis began working its way up to my knee, I was given a steroid injection.
I don’t remember much of that day, but I do recall a lollipop the size of my head as my post-injection treat. After that, my JIA symptoms eased up. I was actually able to achieve remission for many years, and I stayed active throughout my childhood, playing sports and performing in plays.
I still required frequent doctor visits and occasionally experienced physical limitations due to residual pain, but for the most part, I carried on as if I no longer had arthritis. If only that were the case…
Fast-forward to October 2011. It was my first year in college and I started to notice knee pain again. At first, arthritis didn’t even enter my mind as a possible cause. I assumed the pain had something to do with walking around campus and living in a fourth-floor walk-up.
Months later, when I came home for summer break and was still experiencing pain, I knew it was time to see a doctor. Unfortunately for me, I was now 19 and had officially aged out of being seen by my beloved pediatric rheumatologist.
For the first time in 17 years, I had to find a totally new doctor.
I’ll never forget walking into that new waiting room for the first time. Up until then, I had always been treated at a children’s hospital. To me, a visit 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, I missed the comfort of silly murals and old copies of the “Highlights: Hidden Pictures” books I’d flip through as a kid.
Sitting beside me were people three to four times my age. Some peered over at me with looks of both confusion and sympathy. This is where I heard the first of many, “Oh, you’re too young to be here!” comments.
This is where my 8-year journey to a diagnosis of psoriatic arthritis (PsA) began.
My appointment with the new rheumatologist was short. The office had sent me to get blood work done in advance, so by the time I sat down in the exam room, it seemed like the doctor had already made up his mind about me.
I was told my blood work was “all fine,” and that I “looked healthy.” I told him about my history of JIA, but he was unfazed. He told me that because my tests revealed no markers for arthritis, my pain was probably just tendonitis from overuse.
He recommended I see an orthopedic doctor and perhaps try some physical therapy. So, off I went to the next doctor.
Thankfully, the orthopedic appointment made me feel more validated. The doctor believed my pain. He thought that I may have a tear and was eager to schedule an exploratory arthroscopic knee surgery. I found myself feeling hopeful, it was a relief to feel like I was getting closer to an answer.
I may have gotten my hopes up too fast. As I now understand all too well, PsA 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, I was left with no clear answers for why I was in pain.
It was at this point that 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.
I was discouraged after the experience I had with my knee, but my elbow soon became too painful to ignore. I returned to the orthopedic doctor. When he told me he believed my pain was from tendonitis, I tried to accept the diagnosis and stopped advocating for myself.
I wanted to believe the doctors were right. I carried on as well as I could with persistent, moderate joint pain for several years. I went through bottles of anti-inflammatory pills, completed endless rounds of physical therapy, and underwent occasional steroid injections.
Unbeknownst to me, my PsA 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 and I couldn’t lift my arms. I had fevers, aches, and swollen joints. This was my first time experiencing arthritis symptoms with this intensity.
When I look back, I realize I should’ve gone to the hospital, but I had been gaslighted by so many doctors at this point that I didn’t believe anyone would help me. After a few days of no improvement, I put aside my hesitations and decided to try a new rheumatologist.
When the doctor sat me down and told me there were inflammatory markers in my blood work, I rejoiced! There was finally an indicator that something was wrong.
Despite this, she went on to say she still couldn’t give me a specific diagnosis based on my symptoms. The doctor prescribed methotrexate, a common medication for most inflammatory forms of arthritis. Still, with no clear diagnosis, I left the appointment feeling defeated and very lost.
Time went on, and the methotrexate didn’t seem to be making a difference. I decided to try an anti-inflammatory 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.
Despite the pain, I didn’t want to subject myself to more frustratingly unproductive doctor’s appointments.
In October 2019, I was suffering through another massive flare-up. Again, the pain became something I couldn’t ignore, will away, or heal on my own.
I scheduled an appointment with yet another new rheumatologist. I arrived with photos of my swollen joints, in fear of not being taken seriously once again. When I took them out to show her, the doctor looked at me, seeming disappointed.
She shook her head and told me, “It’s OK. I believe you. You don’t have to prove or show me anything.”
I realized that, at last, I’d found a rheumatologist who was going to fully listen to me. She took time to go over the details. We went over my medical history, my concerns, the timeline of how my symptoms had progressed.
I felt heard for the first time. By taking the time to sit and listen to me, this doctor unlocked the key to my diagnosis.
During my intake, I had told her my maternal grandmother suffered from psoriasis, a fact that never seemed relevant to any other doctor. She told me that while most PsA patients will present with skin symptoms before arthritis symptoms, a small percentage of patients develop PsA before ever experiencing skin symptoms of psoriasis.
She explained that the tendon pain I had been experiencing, known as enthesitis, is very common among people with PsA. She explained that my low back pain was not mechanical, it was inflammatory. She told me that I don’t just have puffy fingers, it’s dactylitis.
Suddenly, everything clicked. After so many years of confusion and searching for answers, I couldn’t believe she stated all of this information so clearly and simply.
Some might think I would have left this appointment excited or relieved to finally have a true diagnosis. In reality, I felt more sadness that day than I had at any other point in my whole diagnosis journey. I had fallen through the cracks.
The PsA was there all along, but no one was seeing the full picture. No one was really listening to me. I was being treated joint by joint, pain by pain, rather than as a whole person.
Arthritis is so much more than just joint pain, but no one ever told me that. I soon started learning that other symptoms I had experienced, like fatigue and the way my nails pit and crumble, were also symptoms of PsA.
I finally had answers — but I felt so overwhelmed. For months, I found myself wondering, “What if I had only spoken up more?” or “What if I had pushed harder?”
If I had done things differently, 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 of figuring out treatment plans and learning how to live my life at 26 years old with chronic pain.
Now, 2 years later, I have found the best care team to support my needs, and I’m on a treatment plan that has given me back so much of my life. I still have limitations, but I no longer live with debilitating daily pain. I also don’t have to wonder what is wrong with my body anymore.
I have the answers I need to properly take care of my body and navigate this illness. I have found power in sharing my story, spreading the word about PsA, and helping others find the confidence to advocate for themselves.
Article originally appeared on November 17, 2021 on Bezzy’s sister site, Healthline. Last medically reviewed on November 15, 2021.
Fact checked on November 17, 2021
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