“It’s just the stress of being a college student,” the doctor assured me. “Try to get some more rest and you’ll feel better soon.”
“Your blood work came back completely normal,” another doctor said. “Have you considered going to therapy? Because to me, it sounds like you might just be depressed.”
I had been bouncing around from one doctor to another for two years, trying to find a medical explanation for the pain I felt in every joint and muscle of my body during every minute of every day. Sports medicine doctors told me I had overexerted myself as a dancer in high school. Chiropractors told me that regular adjustments would relieve my pain. Internists instructed me to try gluten-free, dairy-free, soy-free, and processed-sugar-free diets. But none of them could find any abnormalities in my body to explain why I was in pain.
Finally, one doctor implied what the rest may have been thinking: that the pain was all in my head. I was devastated. Doctors—the people I most needed to help me cope with my very real pain—refused to believe me. I was studying to be a Bible translator, but I could barely make it through a day of classes before collapsing in my dorm room early each evening. Why? I asked God over and over. What was the point of this pain? And worse, why would no one believe it was real? Sometimes God’s purposes are not clear in the moment, and this was one of those moments, but over the next several years, I would begin to catch glimpses of how God could use my pain to comfort others.
During the years that my symptoms and concerns were being callously ignored by medical professionals, I had no idea that every day women across the US and around the world were experiencing the same dismissal. A 1982 study, “Women with Pain” published in a book by now-retired nursing professor Joan Crook and psychiatrist Eldon Tunks, found women were far more likely to be misdiagnosed with mental health conditions than men when seeking answers for chronic pain. Another study by Carol Joann Bess found in 1995 that women wait much longer for diagnosis and intervention of coronary heart disease than men do, resulting in higher mortality rates. Yet decades later, women’s pain is still being ignored, sometimes with deadly consequences.
During the years that I was fighting for my own diagnosis, I was also becoming good friends with a refugee woman from Iraq. As part of my intercultural studies curriculum, I visited her home once a week to help her practice English and to help her six children with their homework. As we got to know each other better, she began complaining to me of aches and pains. A sore shoulder here, a headache there, a clicking ankle on another day. I began to wonder if she might be suffering from the same mysterious pain that I was.
In 2014, a total of four years after my symptoms began, after extensive research, dozens of painful dismissals from medical professionals, and some intensive self-advocacy, I finally found a doctor who believed my pain was not just in my head and gave me a name for it: fibromyalgia. Fibromyalgia is a disease that results in widespread, chronic pain in muscles, joints, and ligaments, as well as debilitating fatigue. While the exact cause of fibromyalgia is still unknown, the most common opinion maintains that it is caused by the dysregulation of neurotransmitters in the brain, which results in heightened pain sensitivity in the central nervous system. More than 80 percent of fibromyalgia patients are women and the disease is usually triggered by an acute illness, surgery, or physical or psychological trauma.
Thinking that my friend’s symptoms, shared with me through broken English, hand gestures, and facial expressions universally used to communicate pain, might warrant the same diagnosis, I began to search for a connection between refugee women and fibromyalgia. But though refugees regularly experience trauma during the flight from their homes and countries, it appeared that no one had put these pieces together yet.
Through my research I learned that, though the reasons for the connection are still being studied, a link had been found between rape and fibromyalgia, with survivors three times more likely to have the condition. I also found studies that show a higher prevalence of fibromyalgia in female veterans. I continued searching periodically to see if any new studies had been developed to explore connections between refugees and fibromyalgia. Finally, my patience was rewarded and my hunch was confirmed.
In 2016, Omar Salem Gammoh, a professor of pharmacology in Jordan, conducted the first study to explore the prevalence of fibromyalgia in refugee women. After screening 384 Syrian refugee women from four medical centers across Jordan, he found that about 30 percent exhibited symptoms of severe fibromyalgia, alarmingly higher than 2 percent of the US population and an estimated 3 to 6 percent of the world population. Gammoh’s study supports the trauma hypothesis: Refugee women are likely at far greater risk of developing fibromyalgia than other populations.
I thought of my friend, a woman like me whose testimony of pain was less likely to be taken seriously by medical professionals but who also had far greater obstacles to self-advocacy than I had experienced. Even though my symptoms were mysterious and confounding, at least I spoke the same language as my doctors and could clearly articulate what was happening in my body. Even though my concerns were repeatedly brushed aside by my doctors, at least I had the time and private health insurance necessary to visit specialist after specialist until I found an answer.
Finally, I began to sense one small answer to the “why?” I had been hurling in frustration at God for years. Although I was struggling to understand my own disability and advocate for what I needed to live a full life, there were other women in my community, refugee and immigrant women in particular, who were less able to advocate for themselves. I had seen my chronic pain as something that was holding me back from helping others, but I began to recognize that my experience uniquely situated me to walk alongside women like my friend who needed someone to help them navigate the complex biases of our healthcare system.
Paul calls God “the Father of compassion and God of all comfort, who comforts us in all our troubles so that we can comfort those in any trouble with the comfort we ourselves receive from God” (2 Cor.1:3–4). Though I was still on a journey toward contentment and joy in my chronic illness, I had received comfort from God through a doctor who acknowledged the reality of my pain, named it, and helped me begin to manage it. I also began to more fully understand what the incarnation meant for my pain and my friend’s pain. God in Jesus Christ had taken on humanity in order to experience and ultimately redeem both our spiritual and physical pain. As difficult as my pain was, it allowed me to relate to my friend’s suffering in a way healthy people could not. My pain could be a vehicle for living out the gospel in front of her and other women who didn’t know where to turn for answers or relief.
In his study of refugee women and fibromyalgia, Gammoh calls for early screening for the disease in refugee populations and greater awareness to be raised about the condition among health professionals who are serving them. I will continue to offer my friend the comfort of Christ in her journey with chronic pain. But I also pray that my own experience with fibromyalgia and my treatment advantage as an American will raise awareness of the disease in others so that the pain of women even more vulnerable than myself will be seen and believed.
Tabitha McDuffee is a writer and student living in Chicago. She blogs at TabithaMcDuffee.com and is completing her master’s degree in refugee protection and forced migration studies from the University of London.