I look like a normal 24-year-old woman. I attend parties and college football games, have a writing career and a slew of awesome friends. But underlying this facade of “normality” is the constant self-management of my sometimes-debilitating condition: fibromyalgia.
I’ve always managed. Growing up, I took extra bathroom trips for the UTI symptoms that were never UTIs. I took naps for the mysterious leg pain that’s only cure was sleep. I popped Pepto-Bismol to avoid the digestive symptoms that would send my whole body into a mind-numbing tizzy.
I went to doctors, who sent me for tests. All came back normal. On paper, I was a healthy child, so all my management was quiet and secretive. People rarely noticed the pain medication I took before basketball games, or the times I’d slip away in the middle of a school day for a bit of rest in my car.
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Chronic pain is a fascinating thing. Sort of like a mother who learns to tune out her screaming child, it can affect you every day of your life and you can fail to notice you have a problem anymore. Doctors have cleared you to live that “normal” life, so you just work through the symptoms. You see them as unfortunate annoyances, but nothing more. The pain slowly gets worse over time—but only a little bit worse than yesterday, and not enough to be alarming.
Researchers think we cry in part to signal to others that we need help. When you have chronic pain, you’re not sure you do. You know it hurts, but you don’t know why. You’ve tried to get help, but it’s been ineffective. So what do you do? Scream? Writhe on the floor? No. You’ve learned these pain responses do nothing to take away the hurt. You learn to live through it. Growing up, I did.
But after fifteen years of inexplicable pain, my body refused to be ignored. I finally fell apart in the summer of 2011.
I woke up one June morning with flank pain, slinking down the left side of my body. It sidelined me from my workouts, and then it grew worse. It was hard to breathe and impossible to fall asleep. I wound up in the ER for the first time in my life.
Doctors gave me a CT scan, and told me that the pain was most likely a kidney stone. I was worried when that little bugger didn’t show on imaging, but they said I’d probably passed it in the ER after three bags of IV fluids. I remember lying on that hospital bed, feeling confused and concerned.
I might have accepted this explanation—because I was used to accepting undiagnosable, phantom explanations for my lifelong symptoms—but deep down I knew it was something else for one simple reason: The pain wasn’t gone. It was never gone. I could feel my body reeling. Completely going to pieces was the only way it could signal its need to finally be heard out.
During that first trip to the ER in 2011, doctors said I was probably still experiencing “spasms” after passing the kidney stone and sent home. Four days later, I was back in the ER. Those spasms morphed into full-body sensitivity, concentrated in my legs and throughout my back. Doctors tossed around scary terms like “aortic dissection” and “lupus,” neither of which turned out to be correct. So I went home again.
Eventually, the pain moved to my head; so intense that I could not touch it, apply pressure, or even lay it on a pillow. The deep throbbing also made a stop at my heart, resulting in chest pain that mimicked a heart attack and shot down my left arm. I was frightened and frazzled from all the tests, the lack of sleep and the pain—shooting, stabbing, throbbing, and dashing its way through my body. On my third visit to the hospital, with unwashed hair and burnt-red eyes from all the crying I’d been doing, one doctor held my hand and promised me I wasn’t going to die that day.
I didn’t. But I didn’t get answers either. I went back and forth to the hospital five times that summer. After countless tests, more visits with my PCP, late-night trips to the ER for chest pain that you cannot ignore, and a flurry of pain meds like oxycodone and tramadol, I was finally told I had fibromyalgia.
Fibromyalgia is still somewhat of a black box to the medical community. It is a diagnosis of exclusion; to get the label, you must have pain in all four quadrants of the body for more than three months. Often, you have at least some of the 18 fibro “tender spots” on your body—on your legs, on your shoulders, on the back of your head—that trigger pain when pressed.
The condition seems to impact the central nervous system. It affects the way the brain processes messages, seeming to misread everyday sensations as full-blown pain signals. It’s also possible those with fibromyalgia have higher levels of a chemical found in the cerebrospinal fluid, substance P, which sends pain impulses to the brain. There are lots of theories, but few firm answers—and none that seems to explain everyone’s fibromyalgia case.
We do know that fibromyalgia is more of a label than a diagnosis, encompassing a web of interconnected conditions and symptoms. Along with fibro, I also have irritable bowel syndrome (IBS), affecting my digestive system; interstitial cystitis, which impacts my urinary tract; costochondritis, which refers to pain in the chest wall that often mimics heart attack; PMDD, which is just like PMS with amplified pain and larger mood swings; and TMJ, which leads to bouts of jaw pain. All my conditions are treated separately, which means a lot of doctor appointments, a lot of medications, and a lot of lifestyle adjustments.
“But you don’t look sick!” is one of the most common phrases people throw my way when they hear I have fibromyalgia. “I know,” I reply. Believe me, I do. I work incredibly hard to look “not sick.” I also work incredibly hard to sidestep my symptoms and remain stable.
Examples: If my friends are planning a camping trip, I wonder if my body will be able to sleep on a hard surface, or if my digestion will be too thrown off track to manage three days away from my routine. If I enter an unfamiliar building, I look for all bathrooms and exits in case of a bout of chest pain or stomachache—something I’ve done for years, since I’m much more comfortable knowing there’s a private place for me to handle my pain symptoms. If my family plans a beach trip and asks me to join, it’s less exciting now, because my medications make me sensitive to sunlight. Every time I encounter a new activity or obstacle, I really question if it’s worth it.
As my friend Jordan once said about my calculated attempts at self-management, “Most people never even think of that.” I’m glad they don’t. The reality is that I spend most of my time trying to live a “normal” life in the absence of pain flare-ups, even though I don’t know what “normal” feels like. I’m not sure I ever have; I can remember having symptoms at age five—and they probably started long before that. My body is a live wire of sensation, 90 percent of which I’ve learned to tune out and live through. And I will not let you pity me.
Another common thing people say about my fibro? “I’m so sorry.” Most people have heard about fibromyalgia; they know someone who’s been diagnosed, they’ve seen the commercials. They know it’s painful. But it’s not tragic. Not for me anyway. Pain has been my constant companion for 24 years, and we’ve learned to make the most of each other’s company. Pain is now the signaling system that tells me I need to check in with my body. It helps me slow down, stay well and take care of myself in ways I’ve never done before.
I can also credit pain for a lot in my life—for my introverted habits, for my self-reflective tendencies, for my writing. Had I not flared at age 19, I’d have never started writing about health. I wouldn’t have gotten to know myself deeply, before building out a social life in my twenties. I wouldn’t be who I am today. And despite many flaws, I am proud of that girl.
I might not be “normal.” After all these years, I’ve come to accept that. But maybe I was never meant to be—and that’s finally more than okay.