Last fall, I took myself on a date. It was around midterms, and my microbiology class had taken almost all of the joy from my life, so I thought a near-midnight showing of a movie (one of my favorite pastimes) was well deserved. I ordered my usual (a small popcorn and a Coke slush) and settled in to the nearly empty theater with my favorite hoodie.
Halfway through the movie, I realized I had downed my slush and it had made its way through my system desperately begging for a way out. I struggled to my feet after being still for more than an hour and power-shuffled to the nearest restroom. Something reminiscent of Muzak crackled over the speakers as I fumbled with my belt, and as I lowered myself to the seat, I realized my knees weren’t cooperating. Turns out I couldn’t crouch but an inch, and a puddle of warmth and embarrassment pooled on the floor.
Earlier this spring, after more than a year of self-medicating, I was officially diagnosed with Undifferentiated Inflammatory Polyarthritis. That’s rheumatologist speak for “arthritis in four or more joints, but we don’t know yet if it’s rheumatoid, osteo- or psoriatic.” I visited four doctors before finally seeing my current one, each surprised by my test results and lack of mobility before passing me on to someone else. My primary care doctor mentioned losing a few pounds and taking off from work. My gynecologist suggested I strengthen my leg muscles, do bladder strengthening exercises and stop eating so much Chick-fil-A (as if). A nurse told me of a good hot yoga class that should “loosen me right on up.” An internist suggested I take it easy at the gym, but she prescribed what is essentially a grown-up Aleve and numbed me so much it was like I didn’t have joints at all. Three weeks after seeing her, a nurse called me back into her office.
“Normal CPK (an enzyme that signals levels of muscle breakdown) levels usually run from about 20 to 200. Yours are 848,” she said.
I stared over her shoulder at a gold Christmas garland someone had draped over cabinets bearing faded sticky notes and tiny printed prescription posters and sighed. I didn’t need to know what that meant. I spent hours up past midnight poring over Dr. Google the second my files were uploaded to the patient portal days before. Something was happening to my muscles, and at this point, I just wanted out of this body.
“I’m going to send you to a rheumatologist, because it’s obvious there’s some breakdown happening here, and I want to make sure we handle it before there’s serious damage.”
Autoimmune disease affects women three times more than men, and certain diseases, such as Lupus, affects Black, Asian and Hispanic women more than their white counterparts. An accurate diagnosis can take years, and even then, the damage done to the body is practically irreversible depending on the disorder. I was lucky enough to finally listen to my body, but it took me nearly six months to notice that maybe taking four ibuprofen upon waking up just to be able to get dressed and get downstairs was not normal. It took something as embarrassing as soiling myself in public for me to make the call to my PCP. I spent months filling and refilling expensive prescriptions that worsened other symptoms and being jabbed with dozens of needles in my joints and electroshocked down my legs sucked as much as it sounds. I sat on uncomfortable x-ray machines unable to bend my fingers or toes to get a good scan and starved myself of carbs, sugar, dairy— anything remotely inflammatory— to determine a culprit.
It was alarming to be the only person younger than late-middle age in these waiting rooms, and it scared me to think that I wouldn’t be a young and able-bodied woman for much longer. I’m at the start of my career, yet I was considering being housebound at 25 years old and giving up like my great-grandmother did when her RA left her unable to walk. In the last six months, all I wanted was a doctor who listened to me. And the reality is, some things are just too early to tell. That doesn’t make the pain any less real. It’s how you manage it until you get the answers that makes the world of a difference.
I’ve been making strides since I’ve started my new prescriptions and regimen. I go for longer walks, and I no longer balk at the sight of a staircase. I’ve added 15 pounds to my weights at the gym and can reach my toes to scrub off the nail polish from an entire season ago. I carry squishy balls in my purse and backpack for on-the-go physical therapy for my hands. I still ask for help opening jars and doing tasks that require super fine motor skills, and I won’t be running another 5K anytime soon, but I feel comfortable to trust my body again to get me where I want to be.
And yesterday, I could finally snap my fingers.