It started with a case of whiplash. Innocent enough, Victoria Stopp thought as she attempted to work out a kink in her neck before the end of her shift as a EMT. Stopp was in the back of an ambulance when the driver slammed on the gas and threw her off balance, jamming three cervical discs together and setting in motion 10 years of fibromyalgia and cervical dystonia pain.
Of course, she didn’t know it at the time. A collegiate soccer and softball player, Stopp was used to life’s little niggles. She’d been kicked in the face playing soccer, been concussed, had her nose broken, sprained ankles—“just the things that happen when you play college sports,” she says. An acute neck spasm, she thought, was no emergency.
But then the pain lingered, and the spasms continued, and Stopp’s spine began to affect her whole being. The struggle that followed inspired her book, Hurting Like Hell, Living with Gusto: My Battle with Chronic Pain, which went on sale in late 2017. Stopp wakes up each morning not knowing whether she’ll be in pain or how that invisible pain will make it harder to get through the day, but she hopes sharing her story will help others understand the experience of living with chronic pain.
For most of her childhood, Stopp lived in northwest Florida and played typical kid sports. When the opportunity arose to play softball and soccer at Agnes Scott College, a private liberal arts school in Decatur, Georgia, she went for it. She studied to become a journalist and worked in the Atlanta area after college, although the regular exercise regime of her student-athlete career fell off.
“I was 21,” Stopp says. “Just being out of college, having to be responsible for my own activities, I started gaining weight, not really feeling good.” So Stopp made a change; she quit drinking soda and alcohol and started running. “The first time I ran three miles,” she says, “I threw up.”
Soon, though, running became a habit, then an obsession, and she kept running through her career as a journalist to Goucher College in Baltimore, where she got an MFA in creative nonfiction, and back to Pensacola, where she studied to become an EMT and met her wife, Rhonda. Desk jockeying wasn’t her style. She wanted to help people in a physical way, and she wanted an adventure.
By 27, she was riding in the back of an ambulance. At 28, she hurt her neck. “I was standing up over a patient to help him—you’re not supposed to stand up in the back of an ambulance,” Stopp says. “The person driving hit the gas really hard. The next day, I couldn’t turn my head.” Her neck was super-stiff, she says, and she had intense muscle spasms as if she’d been in a serious car accident.
That was in 2007, and after an initial examination, Stopp just went home. Cervical dystonia—a condition characterized by involuntary neck muscle contractions—is how the physicians would’ve diagnosed her if they’d known. Three discs cervical discs had herniated, causing the gelatinous centers to escape and inspire a painful chemical reaction in the neck. “For a good while,” Rhonda says, “she thought it was something she would bounce back from.”
But unlike her athletic injuries of years past, the neck pain didn’t go away. After a couple of years of missed diagnoses and ineffective painkillers and muscle relaxants, doctors struggled to make her symptoms add up. The acute neck pain had become chronic, and Stopp felt tired all the time. She’d since quit being an EMT to become a physical therapist’s assistant, and had just celebrated her 30th birthday when she first heard the word “fibromyalgia” uttered in her direction.
Fibromyalgia is a disorder of whole-body musculoskeletal pain that affects energy levels, mood, memory, and sleep. The pain can start because of specific trauma, according to the Clinical Journal of Pain, which states that “The patient feels more pain than typically would be expected.” What’s more, the Journal of Physical Therapy Science writes, “Some patients are not so happy despite all therapeutic methods and the doctors may hesitate about the diagnosis with some patients.”
Replace “some patients” with “Victoria Stopp,” and you begin to get an idea of what she’s been through. “I took the medicines, and they didn’t help,” she says. By then, Stopp was a hiking, mountain-biking, running, backpacking, full-blown outdoor enthusiast, and halting the activities she loved for a diagnosis doctors could hardly deliver (let alone treat) wasn’t an option. Once, after a neurologist was evaluating her for multiple sclerosis—a disease that would explain her symptoms but also mean much bigger nerve problems—she drove home and bought a new backpacking tent on the internet.
So Stopp did everything she could to continue her passions. She gave back the pills and started seeing acupuncturists and chiropractors. She went vegan; she attributes a decline in daily muscle spasms to the absence of dairy. She catches as much sleep as she can, although the fibromyalgia pain can keep her up at night. Most of all, she’s committed to doing as many of the activities she loves as she can.
It’s a compromise, Stopp says. Chronic diseases are, after all, chronic. She’s given up mountain biking because she can’t risk a fall. She can’t travel light. “My suitcase looks like a physiotherapy work room,” Stopp says of the foam rollers and rehab tools that travel wherever she does. But Stopp has acquired a new skill, something that millions of people living with chronic pain know too well: faking it. Not the pain, obviously, but projecting a pain-free version of herself. “I’m pretty good at faking what needs to be faked, just dealing with it,” Stopp says. “I don’t have an interest in just sitting around; I have to get up and go, no matter what.”
She was so good at faking it that, as Rhonda says, people around her were oblivious to her daily experience. “Friends who have read her book have really been amazed,” Rhonda says. “They say, ‘We had no idea you were living with that kind of pain.’”
The first time I spoke with Stopp was December 2017. At that point, she hadn’t run in six months because of the pain. She’d been out hiking and walking, but she was itching to feel those powerful strides. “Nothing is like running,” she told me. “Running is the best.” Then I talked to her again in January. “I did start running again, then I had to quit because I got the flu,” she says. “But I guess there’s always a belief that I’m going to be able to do what I want to do.”
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