Road to Diagnosis: Rheumatoid Arthritis Patient Stories

Symptoms like inflammation, joint pain, and stiffness are an inevitable part of aging. But for about 1% of the population, these symptoms are signs of something different: rheumatoid arthritis.

Rheumatoid arthritis is a chronic autoimmune disease where the immune system mistakenly attacks the lining of healthy joints. It affects people of all ages, but most often develops in your 50s. Women are two to three times more likely to develop rheumatoid arthritis than men.

Because symptoms of rheumatoid arthritis can be subtle, gradual, and attributable to many other things, rheumatoid arthritis can be challenging to diagnose. A combination of blood tests, imaging tests, and clinical evaluation helps healthcare providers make a diagnosis. 

Catching rheumatoid arthritis early matters. The sooner you get a diagnosis, the sooner you can start treatment with disease-modifying antirheumatic drugs (DMARDs), which help protect your joints and improve long-term health. Without early treatment, RA can lead to serious problems like permanent joint damage, disability, and other complications throughout the body.

With such non-specific symptoms, it’s hard to know if what you’re experiencing could be rheumatoid arthritis. That lack of clarity was a common theme among the patients who shared their diagnostic journeys with Health.

It all started pretty quietly. A storm stalked me and hit all at once. In November 2001, my town had a hurricane. During that hurricane, I felt my body start to shift. I noticed some aches and pains in my hands, knees, hips, and feet days before, but nothing too alarming. As the hurricane developed around me, little did I know a storm was brewing inside of me.

By January 2002, I knew something was wrong with my body. My hands were stiff, and it was hard to extend my fingers. Simple things like opening a jar and holding a pen or cup were difficult and sometimes impossible.

For years, pain was my constant companion, though I didn’t know its name. What started as aches in my hands, knees, and feet in 2010 would become a force that transformed my life, my career, and my understanding of what it means to advocate for myself.

When the symptoms first appeared, I was working as an esthetician. The job demanded long hours on my feet and working with my hands. However, doctors and I wrote off the pain as an occupational strain. “You’re young,” they’d say. “Just try to exercise or wear a brace.” Without visible swelling or other obvious signs, my concerns were easily brushed aside.

When my right knee ballooned to twice its normal size in the summer of 2016, I didn’t know it yet, but it would be the start of an eight-year medical mystery no one could solve.

It began with a dull ache, then developed into a stiffness that made even walking feel awkward. Within days, my knee was swollen and hot to the touch. I went to bed and woke up in a panic when I couldn’t bend my knee or walk down the stairs of my six-floor walkup New York City apartment. I called an ambulance and was taken to the emergency room on a stretcher.