Why Seeking a Diagnosis Was Hard Despite My Debilitating Symptoms

The first person I needed to forgive was myself. I had forced my body to endure so much. I had started a new job and strived to show up completely. I committed myself to directing a holiday play. I even taught a dance fitness class to a group of women in honor of Women’s History Month, and promptly collapsed in my bed with exhaustion immediately after. Each day I showed up for everyone except myself.

I went through five months of a flare-up from an undiagnosed disorder. It was a nightmare.

I started avoiding the break room during lunchtime and excusing myself from friendly gatherings. I tried to explain to others how tired I felt and was met with “welcome to adulthood” and “it will get better.” I felt confused; this could not be what everyone else was experiencing. And I didn’t trust myself enough initially to sound the alarm that something was not right. So I pushed through.

At the height of my flare-up, I was calling out from work and lashing out at loved ones. I purchased knee pads to work with my pediatric patients during therapy sessions. While my coworkers took to the stairs to get more steps in, I lingered by the elevator, insisting I would meet them on the next floor. Reaching for my seatbelt felt like a chore due to shoulder pain. Handling my groceries worried me after the first time I experienced Raynaud’s phenomenon in my fingers. I needed help opening jars and carrying objects.

Activities I loved became missions I dreaded. I stopped taking neighborhood strolls with my mom because my knees hurt. I could no longer play guitar at my church services because my fingers ached. At one point, I had to ask my sister to put my hair in a bun because the swelling in my arms made it impossible for me to style my own hair. Working out was a no-go. I woke up feeling exhausted daily.

Sleep didn’t even bring rest. There were nights I lay in bed for hours trying to find a comfortable position to sleep in, and my mattress was brand new! I woke up with night sweats, and my transitions in and out of bed caused so much pain that I would have to take a break between rolling and sitting up.

When I realized I could no longer remember the last “good day” I had, my mental health and self-image seriously took a downward turn. I felt my faith faltering and I drifted further away from others, not realizing I was hiding.

It got to the point where I couldn’t hide anymore.

Thank God for my background in physical therapy and differential diagnosis, because I probably would have remained in denial, waiting for the storm to end.

I was able to express my symptoms to my PCP, who promptly ordered lab tests that revealed a positive ANA. Although not a definitive diagnostic marker, it did start the process of me seeking out a rheumatologist. That was a whole ordeal between appointment availability, insurance, and hours of operation. But I finally got in.

Sitting in the waiting room surrounded by elderly patients, I wondered how out of place I probably looked: a slim 20-something young adult seeking care for achy joints. But completing that intake form and checking off all of my symptoms confirmed I was in the right place.

Long story short, my rheumatologist ordered more lab panels and I awaited the results. I remember thinking, “there is definitely something going on with me,” as I counted the days after that visit for me to learn what was going on.

The timing was divine: a week after that visit, future medical appointments transitioned to telehealth services. And on a Tuesday morning via video chat, my rheumatologist said “the labs came back and you definitely have lupus.”

And I cried. That was six weeks ago. And I still cry. I even cried typing the words, “I have lupus.”

The words are often heavy on my tongue; saying them out loud feels like I’m giving up on myself.

Acceptance comes in waves. Some days I feel ready to attack the day with enthusiasm, and others I feel frustrated that I’m already waking up with aches and stiffness.

But I’m still living. And I have a chance to reclaim my life. I’m on a medication schedule and getting into the groove of managing an unpredictable condition. Slowly my favorite activities, like dance fitness, drawing, and guitar are finding a place in my schedule again. But the truth is there are still some days when just being able to go up and down a flight of stairs without pain is a triumph.

These days, my gratitude is intentional and my happiness is measured. But joy resides in my heart, and I have to show up for myself like I never have before.