88. The Nature of the Beast

"Just do it. Just get out of bed. You can do it." There I was, coaxing my body to get out of the heap I'd been in for the past 12 hours. I had crawled into bed with the intention of sleeping a regular eight-hour cycle. What was wrong with me? Why couldn't my mind convince my body to get out of bed?

You're just lazy, I convinced myself. But it was more than that. It was a physical and mental battle each morning to start the day. I literally would plead with my body and mind to get moving and then fight the urge to crawl back into the same position. I felt like I was seen as inept. I was humiliated and frustrated because I know I wasn't causing this, but I could not help this reaction.

The pain was heavy. It felt like I was always carrying the heaviest boulder around with me, dragging my feet and slouching my back by its weight. This was accompanied by my mind telling me that I deserved this pain, that this was punishment for a sin I didn't know I committed. Bouts of shooting pain would erupt at my wrists and ankles and sometimes my knees and hips.

Although I was compelled to see a doctor and seek out help, I was afraid of what I would hear. I come from a culture where any blemish to the body or mind was considered self-inflicted. The community as a whole was ignorant as to how the body worked and the possibility of problems that could arise from something as simple as a deficiency of chemicals. The first doctor I went to was calm and collected. After hearing me tell her my story, she knew right away what my problem was. She said the words, "It's fibromyalgia." She gave it a name. She followed that with a prescription for a tiny pill that was to encourage, not discourage, me in the mornings. If I forget to take the pill for one day, it surges back through my body as a victor in this war I am fighting. I try to take this pill religiously to never go back to that place again. This pill is the only shield I have.

I grew up in a typical Sri Lankan Tamil home. My father was the breadwinner, my mother a stay-at-home mom. I was raised in Buffalo, New York, which had a pretty sizable community of Tamil and Sinhalese families who lived in harmony together. But, being in a predominantly white suburb, it was easier to tell people that I was Indian rather than explain where Sri Lanka is. College was the first time someone called me out on that. I joined the Indian Student Association and overheard someone say, "She's not even Indian. She's Sri Lankan." It was laced with such disdain, I never called myself Indian ever again. I took the extra effort to point out that it is "the little island under India."

Even though I knew there was a civil war on the island, I was sheltered from most of the details of the conflict back home. My mother got out in the late 1970's when she was 23, and my father came in 1981 when they got married. My mother had not experienced much of the conflict, but my father had, and to this day he doesn't talk about any specifics.

My mother's side of the family had all made it to America, but the majority of my father's family was still there. The little I knew about how brutal the conditions were in Sri Lanka were from the lives of my father's side of the family. My father's brother was murdered and my cousin was killed when she stepped on a bomb in the marketplace. Stories like that were my first brushes with death, and I didn't know they were unique until I got much older. I thought this was how life treated everyone despite knowing that most of the children in my school experienced deaths of older relatives from age or an illness.

I was diagnosed with fibromyalgia on the cusp of turning 30 and felt like a wrench was thrown in my path as I was just figuring out adulthood. I had been on my own, living and working in New York City for almost 10 years. As a kid, the factor of being an adult that I looked forward to the most was being independent, and I had achieved that. Having several strong women as examples in my life and coming from a community that did not talk about any personal ailments these women experienced in silence, I felt like I was the only one with such a blemish. In fear of how others may see me and knowing the ignorance of such conditions in this community, my mother did not tell anyone and barred me from being open and honest about my body's condition.

Stress is the biggest contributor to my pain, exacerbating the pain, which had grown to chronic sparks in the joints of my ankles and wrists. Sitting for too long in the same position resulted in a stiff body that needed some time to soften back to its natural state. "Try to control your stress," my doctor told me. If I had figured out how to stall the effects of stress on the body, I would be a wealthy genius. The stress of work and life together brought back frightening memories of my state before that little pill. I still am not the best at controlling the stresses of daily life.

I had just started working with a Sri Lankan human rights organization when I got my diagnosis. I was not the one who sought them out. In fact, they sought me out. Without a solid base to build from, I was learning about all the things I didn't know when I was younger for the first time. I dove deep into research, and the deeper I dove, the more stressed out I got. I felt the toll on my body. First from the brutal, inhumane details coming to light, and then for not knowing this was the condition of the country for decades now. The guilt manifested into severe headaches and sharp pains from sitting in front of the computer and reading for hours. The more I learned the more compelled I was to crawl back into bed and let the heaviness of my mind and body takeover.

The problem with stigma is that you are left to feel alone. I am convinced that there are many more Sri Lankan women struggling the same way I am, but they have resorted to silence because of a cultural stigma. The more open we are about our personal struggles, the more we can share solutions and coping mechanisms that could possibly be a saving grace for someone.

In the six years since my diagnosis, I am still working on controlling my stress levels and the best way to manage my pain. I'm getting better at not allowing distressing news manifest into stress that then takes a toll on my body. But, the thing about fibromyalgia is just when you think you've figured it out, it shoots some pain in a place that you hadn't experienced it before. That's the nature of the beast.