My Post-Diagnosis Journey to Psoriatic Arthritis Acceptance

Learning to embrace and accept my psoriatic arthritis required rest, time, and reflection about my self-worth and productivity.

October 31, 2019: There I was in yet another rheumatology exam room, surrounded by pictures of arthritis and diagrams of various joints. I was trying to get comfortable as I waited in an oversized hospital gown, but each nervous wiggle made a loud crinkling sound from the paper on the medical exam table.

She first looked at my joints, taking note of swelling in my ankles, knees, and elbows. A look of concern came over her optimistic face when she realized my left elbow no longer extended all the way. “You’ve had pain here for 8 years?” the doctor asked, shaking her head with confusion.

I could see the wheels turning in her mind. I began to feel hopeful for answers after the 8 years of medical gaslighting I had endured to get to this point.

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The diagnosis

After finishing her physical exam, the doctor pulled out my paperwork, and we began to go through my history, including my family medical history. Then she looked at me and said, “Ah ha! Family history of psoriasis! You have psoriatic arthritis.” She seemed excited to have figured it out.

But I instantly became a puddle of tears. The emotions came flooding out all at once: confusion, relief, fear.

Psoriatic arthritis (PsA) had never crossed my mind. I pictured my grandmother’s psoriasis, the red and scaly patches that often covered her elbows. This was a symptom I had never experienced.

As the doctor handed me tissues, she explained that there’s a small percentage of people who develop PsA before showing symptoms of psoriasis. She then explained that, because I had not received the treatment I needed for so long, we would have to get on top of this quickly to stop disease progression and hopefully prevent even more permanent joint damage. She prescribed me the biologic Humira, and sent me on my way.

Full speed ahead?

After the initial shock and confusion wore off, I felt relieved to have an actual diagnosis. I was happy that a doctor finally listened to my concerns. I wanted to be hopeful about the new treatment plan and the possibility of less pain.

So I went back to life as usual. At that time, I was working as a preschool teacher and babysitting on the side. I was not very concerned about the physical demands of my work, and I believed that taking Humira would be enough to eventually feel better again.

The first few weeks on Humira gave me energy I hadn’t felt in years. Instead of taking it slow and letting my body heal from years of flaring, I used my new energy to push myself even harder at the gym, taking on extra jobs and side hustles.

I thought I was doing great, but in reality I was overdoing it. When I look back now, I realize this was a period of serious denial. I was not accepting my diagnosis, and I was doing my best to ignore it.

New symptoms

In February 2020, Humira began to fail. I noticed my pain was actually increasing with each dose. The heavy fatigue and painful swollen joints returned. This made working incredibly difficult and stressful.

Still, I refused to accept what I viewed then as defeat. I kept showing up to work, doing my best to hide my pain.

At this point I was barely able to walk. My ankles and knees were so swollen. My hands and wrists felt weak and painful. I was experiencing new frightening symptoms, like chest pain and fevers.

The unplanned and forced rest

Just weeks later, the pandemic hit New York. For me, being forced to stay home could not have come at a better time. My body was screaming at me to slow down, and now I had no choice but to listen.

At first, the unplanned rest was uncomfortable. It felt itchy — like I should be doing more. But after about a week of slow-paced quarantine life, my pain started to ease up, forcing me to recognize the benefit of taking time to rest.

This also left me with more time to sit with my thoughts and feelings. I was really starting to understand the gravity of my diagnosis. This was not something that would be a small part of my life. Managing this disease would be a lifelong commitment that goes far beyond my rheumatology appointments.

The grief

These realizations ripped me from my state of denial and threw me into grief. The grief hit me hard, along with serious panic about what the rest of my life would look like. I won’t always know what I’m going to wake up to, or what kind of pain, energy, and abilities each day will bring.

I was used to directly associating my productivity with my worth, whether that be my work schedule, daily exercise, completed errands, or healthy meals. I had pushed myself to the breaking point, time and time again, trying to be someone I could no longer keep up with.

Then I realized: The most productive thing I can do is listen to my body and put my health first.

Learning to embrace and thrive with PsA

Putting my health first: It’s easier said than done.

It was an overwhelming process. I had a lot of learning to do. I recognized that I needed to play a much bigger role in managing my disease. I had to stop zooming through life, ignoring the signals my body was clearly sending me.

I decided I needed to start being my number one advocate. I dove into research about PsA, learning all that I could about the disease, and how to live with it instead of ignoring it. Through this, I found power in knowledge.

And I began to let go. I let go of the guilt and shame of being a chronically ill person. I learned to embrace that my body needs more rest, more medicine, and more care than the average person.

With acceptance comes community

That acceptance led me to open up. I began sharing my story and connecting with others who have PsA. I found strength in community and shared experience. It brought me peace to find others who share my struggles and relate to my stories, my feelings, and my pain.

I noticed that helping others through sharing my life with this disease has brought me a sense of joy and purpose I never imagined possible. It’s helped me accept that this is my life now, and I will find ways to manage, cope, and thrive with my diagnosis.