Fighting for Women in Pain
Christin Veasley knows what it feels like to wonder whether there’s a point in getting out of bed.
For more than three decades, she’s dealt with multiple chronic pain conditions brought on by a severe car crash. She knows what it’s like to get a diagnosis only confirming that she has chronic pain, rather than telling her how to treat it. And she knows what it’s like to be misdiagnosed and stigmatized because of her pain.
But she also knows that finding her purpose and learning how to live with her pain has changed her whole life.
“For anyone who has a chronic illness, it can become your entire world,” she says. “You need your own thing that gives you some sense of joy and some sense of purpose.”
Christin, 46, who lives in southeast Rhode Island, finds that purpose through spending time in nature, practicing her photography—and dedicating her career to advocating for women like her who live with multiple chronic pain conditions every day.
A DEVASTATING INTRODUCTION TO PAIN
Christin’s chronic pain story starts when she was just 15 years old, when she was hit by a car on the right side of her body while she was biking. In 1991, the imaging available could only tell her doctors so much. But, as best they could tell, she experienced a traumatic brain injury on her right side.
“This was a massive accident where I was not supposed to survive the first 24 hours, much less ever,” she says.
She’s gotten “dozens of different diagnoses” over the years. Her pain is mainly in her neck, shoulder, and the middle of her back—the result of breaking all of her ribs. She also has pelvic pain from a condition called vulvodynia. Although Christin sustained pelvic damage from the crash, doctors aren’t certain if that led to the development of vulvodynia three years later—or if, as research is showing about people with multiple pain conditions, the crash triggered changes to Christin’s central nervous system, making her more vulnerable to developing pain conditions in other areas of her body.
Christin still regularly experiences what she describes as “moderate, sometimes severe” pain. But, through various pharmacologic and nonpharmacologic treatments, she’s found a way to manage it and is now “able to be functional enough to work, to fulfill my responsibilities as a wife and a mom, and be physically active,” she says.
But she knows that’s not the case for everyone—because for many people, especially women and minorities, it’s a battle to even get a doctor to believe that they are actually experiencing physical pain.
‘A WHOLE OTHER BALL OF WAX’
Because of her accident, Christin wanted to go into the medical field. She worked as a research assistant in neuroscience at the Johns Hopkins School of Medicine in her 20s. With the confidence of youth, she was convinced she’d find a cure for the pain that plagued her and others. But she quickly learned that science—often out of necessity—moves slowly, and that there was a great need for people like her on the advocacy side, who understood and worked in medicine and science, but also had lived experience with chronic pain. Her own experiences, and those others shared with her, swayed her toward activism.
When she would go to the doctor with a new ailment, almost every single health care provider pointed to a potential cause in her medical history: her car crash.
“There’s something for them to look back at in my record and say, ‘Oh, this makes sense that you would have that massive pain,’” she says. “It’s different from other people, when [doctors] look at their history and there’s no reason why they should have pain.”
One instance in which Christin experienced bias and disbelief from the medical community was in her diagnosis for vulvodynia, a chronic pain in the opening of the vagina or other areas of the vulva. This condition causes intense pain with any kind of vaginal penetration or insertion, be it sex or a transvaginal ultrasound.
It’s often misdiagnosed as a yeast or bacterial infection, which is what happened to Christin. She first began experiencing the pain when she was 18 and was misdiagnosed for six months before finally finding a doctor who knew what vulvodynia was.
Many women have told Christin that their doctors wrote off the pain completely.
“I’ve heard from other women that doctors have said to them, ‘Just go home and have a glass of wine the next time before you try to have sex,’” she says.
People experiencing any type of chronic pain have to fight through “tremendous stigma and disbelief due to all of the biases and misconceptions that still surround chronic pain,” Christin shares. But chronic genital pain? “That’s a whole other ball of wax,” as Christin puts it.
“Many people today feel comfortable enough to say, ‘I’ve got a killer headache, or back pain.’ It’s something that people can relate to, even if they’ve only had it transiently,” she says. “But you can’t be like, ‘Oh, yeah, I’m burning down there.’”
BROADENING THE SCOPE
Christin’s personal experience with vulvodynia led her to work for the National Vulvodynia Association for more than a decade, eventually as its executive director. She’s worked extensively with organizations studying pain disorders across the country, including the U.S. Food and Drug Administration (FDA), National Institutes of Health (NIH), Centers for Disease Control and Prevention (CDC), and multiple universities.
Through that work, she’s seen just how difficult it can be to get funding to research any chronic pain condition—let alone one with stigma attached.
“Health disorders that are deadly or transmittable tend to be prioritized to receive more research funding than ‘benign’ conditions like chronic pain that do not kill you and that you cannot transmit to another person,” Christin says. “The problem, however, is that America has now become a nation of chronic illness—more than 40% of Americans have at least one chronic illness, including chronic pain.”
She adds, “Lawmakers and federal health and research agency administrators have a difficult job in figuring out how much money should be spent on hundreds of equally horrific medical conditions.”
In the late aughts, the National Institutes of Health released results from two long-term research studies on people with multiple chronic pain conditions. These studies showed that 75 to 80% of women who have one pain condition actually have multiple pain conditions. No one knew this before these studies because, as Christin puts it, “The guy who’s treating your jaw pain is not asking about your pelvic pain.”
Christin decided to do something about it. Sbe began meeting with leaders of other organizations that represented individual chronic pain conditions, and they founded the Chronic Pain Research Alliance in 2009.
The Alliance advocates for women who live with several of 10 different chronic pain disorders—a condition called chronic overlapping pain conditions, or COPCs. These include urogynecological conditions like vulvodynia, endometriosis, and interstitial cystitis/painful bladder syndrome, as well as irritable bowel syndrome, fibromyalgia, and chronic migraine, among others.
“We felt it was really important to have an advocacy initiative focusing on advancing science for this group of people” who experience multiple chronic pain conditions, Christin shares.
For her, this multi-pronged approach is a calling.
“If you’re advocating for science and you’re working within agencies like the NIH, you need people who understand science, but you also need people who understand the patient experience,” she says.