I am a lover of the big blue–open expanses of healing waters, frigid vistas of towering mountains, endless skies that allow me to get lost in daydreams.
It’s rather ironic, then, that I have lived 22 of my 29 years with a disease that is represented by the color blue: Undifferentiated spondyloarthropathy and rheumatoid arthritis.
As a scrappy seven -year- old, I lived for summer days where I would wake up, put on my swimsuit and head outside to my little vinyl pool in the yard. Fishing out the beetles that had met their end overnight, I made room for my little body to float.
I reveled in the feeling of weightlessness, of floating on my back amidst a shimmering backdrop. Staring at the passing clouds in the sky, I found my peace.
This practice would come to serve me well in life.
For that summer, everything changed. I came down with strep throat for the first of many times. Then, in a moment of rambunctiousness, I flew over the handlebars of my bike, crashing headfirst into the sidewalk.
I did such a good number on myself that the doctors in the emergency room assumed I had been hit by a car. They diagnosed a hairline skull fracture. As the days of healing passed, random symptoms began to appear. Then I woke up in the middle of the night, unable to walk. I crawled to my parents’ room, somehow understanding that everything had changed. I had rheumatic fever and my joints failed to work. Pain and stiffness began to settle throughout parts of my body and I was told I had temporary juvenile arthritis.
Years passed, with doctors doubting my pain since they were unable to locate a source that made sense to them.
When I hit puberty, it became beyond painful to stand in place for more than a few seconds. Afraid of being shunned by my classmates, I didn’t talk about it much. I kept things inside. I would come home from high school and sleep for hours before waking in time for dinner, only to go to bed quite early for a teenager.
Though we didn’t use the word "depressed," it was obvious to me and my family that I was suffering from it. I was always in pain, and felt that no one understood me, including my doctors.
My mom scoured the internet and found forums where others like me talked about their conditions. After lovingly passing information about these forums over to me, she told me she would never read anything I posted. She knew I needed a space.
Suddenly, I found myself staying up late, alert and energized by the connections I was making. People were echoing my same symptoms, helping me learn to navigate life.
I began to think of these people not just as friends, but family.I realized I wasn’t alone.
After I headed to college, my body did not respond well to the cramped dorm-style living and quickly began to fail on me. Within a few months, I became so ill with a “mono-like” illness that I was ordered out of the dorms. I feared for my ability to recover. I struggled to keep up with my peers – not just physically and academically, but socially as well. By the time I was 20, I was spending half of my nights doing yoga in desperate attempts to alleviate the pain.
I would wake up in the mornings with my legs against the wall, having passed out yet again in some contorted pose.
Crying from frustration for the umpteenth time to one of the two rheumatologists in the state of Montana, I began to feel crazy. How I ended up in an oncologist’s office, I don’t remember. I just know I was desperate.
He was horrified to hear my story, but he listened. He said he had seen too many young women like me fall through the cracks and urged me to leave the state and find real help - perhaps at the Mayo Clinic or the NIH. Anywhere but there in Montana.
A few weeks later I was sitting on an exam table meeting with a rheumatologist at a teaching hospital in Texas. I was not crazy. My pain was real. He saw evidence in my body. I was sent home with the first of many biologics. I had been diagnosed.
Now living with my husband in Los Angeles, far from where this story began, I find solace in my online community. Here I found my voice, as scraps of paper with cathartic writing turned into TheHurtBlogger.com, where I began chronicling the absurdity of living with chronic arthritis.
Today I find calm in the vast sea of blue out there, the blue of my rheumatic community. Together we are stronger, happier and better able to weather the storms of our diseases.