Living with an unknown health condition is living with an unanswered question that you ask yourself numerous times each day: as you wake up aching and exhausted, as you wonder whether your meeting is about to end because you cannot follow it a moment longer, and as you take each step with daggers of pain needling into your hips. I believe in labels because labels are the answers to the questions we ask ourselves. Why do I hurt? Why am I so exhausted? Because I have fibromyalgia.
For the last two months, I have been expecting this diagnosis. I had discussed my symptoms with doctor and ruled out via blood tests other conditions with similar symptoms, like rheumatoid arthritis and lupus. We could not, however, rule out fibromyalgia, symptoms for which include widespread diffuse pain, fatigue, migraines, and poor concentration or forgetfulness. In the nine weeks leading up to the appointment with the specialist to whom I had been referred, I read about how fibromyalgia has no cure, how it is diagnosed, and how it is treated.
I was so well versed in fibromyalgia that I knew immediately when my specialist began examining me for tender points. When a person who does not have fibromyalgia has these points pressed, that person feels only pressure. A person with fibromyalgia, however, feels pain. Sometimes, the pain is so intense that the individual flinches away involuntarily, which happened to me on several (though not all) of the tender points. When the specialist finished examining me, she pulled her chair closer to mine and started talking about historical attitudes toward my type of pain, and I knew that she was trying to work toward telling me that I had fibromyalgia.
I didn’t want the sugar coating and history lesson; I wasn’t clueless. I interrupted her and stated “fibromyalgia” with only a hint of the upward lilt to mark the underlying question.
She paused and gave me a speculative look. In those short seconds of eternity, she seemed to be asking herself, can she handle it?
“Fibromyalgia,” she confirmed.
I started telling family and friends immediately and as straightforwardly as I could. I had been expecting this diagnosis for months, so I did not expect the sadness to wear me down as smooth as sea glass stuck in the ebbs and flows of tidal currents; I did not expect anger to erupt unexpectedly in a gnash of frothy defiance; I did not expect moments of denial that approached climate-change-isn’t-happening proportions.
Yet, I still had a smaller moment where I laughed hysterically as I thought to myself: How absurd! I don’t have fibromyalgia. I felt angry indignation sputter up as I fantasized about a revenge thru-hike of the Appalachian Trail, fibromyalgia and back pain be damned! Worse, I have felt the steady tug of lurking sadness—the very sadness that has haunted me for the last year as I have dealt with chronic pain—as I ask myself with somber, plaintive earnestness: who am I now?