No, That Persistent Pain Is Not in Your Head

The psychologist on my Zoom screen is asking about my body. What are my chronic pain symptoms? What strategies do I use to manage discomfort? What’s my attitude toward my pain?

As a patient at a pain clinic at a major university hospital, I’m required to complete a 90-minute session with the psychologist, Dr. I., as a prerequisite for receiving medical treatment. The clinic uses a “biopsychosocial” model to assess and treat patients. This means the clinic’s care providers consider not just biological factors, but also psychological and, ostensibly, sociological ones to manage pain. In practice, as often happens where the model is applied, the “socio” element receives short shrift, while a patient’s mental and emotional life becomes the object of intense scrutiny.

Dr. I. is asking about my childhood: Did my parents treat me well? Do I have a history of depression or anxiety? 

“Do you tend to push through pain, or restrict movement out of fear?”  

The last question takes me aback. It feels like I’m walking into a trap. As often happens when I’m uncomfortable, I let out a nervous laugh. “Is there a right answer?”

If there is a right answer, I don’t provide it. When I review her notes, I find the following observations: “Ms. Cutchin has some symptoms and behaviors known to be unhelpful for pain including: some fear avoidant behavior, pain anxiety.” 

What neither my doctor nor I knew at the time was that my pain—a piercing, vibrating vaginal hurt that had affected my ability to walk, sit, and have sex for several years—arose from a specific form of tissue damage called pudendal nerve entrapment. The pudendal nerve supplies penile/clitoral sensation; it also controls bladder and bowel function and runs through key pelvic floor muscles. To receive the correct diagnosis, I had to keep searching—and searching and searching—for answers. All told, it took 11 years, four gynecologists, three pelvic pain specialists, three general pain specialists and six pelvic floor physical therapists to get to the bottom of the problem.  

During that time, I was told my symptoms stemmed from “central nervous system sensitization” or “irritation” of the pudendal nerve. I was referred to treatments like biofeedback, breath work, physical therapy, and a pain management app called Curable. 

I’m far from the only chronic-pain patient who’s been told her symptoms derive from psychological factors or so-called “central nervous system sensitization”—an issue that’s often treated with psychological tools like cognitive behavioral therapy. No longer are patients routinely accused of “hysteria,” as was the case throughout much of the 20th century, or of displaying attention-seeking “illness behavior,” as was true until a couple decades ago. Nonetheless, patients treated under the current biopsychosocial model are told their beliefs and attitudes about pain are driving symptoms. Researchers, clinicians, and pain psychologists speak of a “broken alarm system” that comes to rule a patient’s mind and nervous system. In this model, “catastrophizing” thoughts and “avoidant behaviors” are not byproducts of unresolved pain, but rather the causes of ongoing suffering.

The biopsychosocial-based Pain Management Workbook, touted by New York Times journalist Ezra Klein as the book that “changed” his “relationship” to pain, declares unequivocally, “chronic pain is a false alarm.” The author, Rachel Zoffness, assistant clinical professor at the University of California, San Francisco, School of Medicine, urges readers to turn down their alarm systems through workbook exercises and lifestyle alterations. “Change out of pajamas,” Zoffness prompts. When you stay in your PJs, your brain lingers in “sick mode,” while getting dressed “signals to your brain you’re changing from disability to strength, from dysfunction to function.” 

Some, like Klein, might find tools like The Pain Management Workbook helpful. But for millions living with undiagnosed or poorly understood conditions, or whose jobs or home environments contribute to bodily and psychic stress, these tools will provide limited relief. As Dr. Jens Foell, U.K.-based physician and co-author of Fighting for the Soul of General Practice: The Algorithm Will See You Now, told me, the biopsychosocial model as it is applied today obfuscates deeper systemic—social and healthcare—problems that drive pain. The “P”—“psycho”—aspect of the model, “always comes with an agenda for change and a notion of ‘the ball’s in your court.’” In contrast, social and political factors including the environment, housing, and income status are rarely mentioned when experts talk of the biopsychosocial nature of pain.

As it is currently applied, the biopsychosocial model exhibits the stigmatizing characteristics sociologist Erving Goffman famously identified in Stigma: Notes on the Management of Spoiled Identity. According to Goffman, stigma is an “attribute that is deeply discrediting,” such that the bearer becomes “tainted” and “discounted.” As Joanne Hunt, Research Affiliate at the Department of Women’s and Children’s Health at Uppsala University in Sweden, told me, the “individualistic” biopsychosocial model “encourages victim-blaming, gaslighting, and endless permutations of disability disavowal: all responsibility for ‘recovery’” is placed on the sufferer, whose “motivation, mindset, and even moral character are called into question.” 

A Broken Health-Care System

Poorly understood pain disorders like fibromyalgia, complex regional pain syndrome, the connective-tissue disorder Ehlers-Danlos Syndrome, and chronic pelvic pain are especially prone to psychologization. A 2017 study into attitudes about fibromyalgia at a U.K. medical school found that not only did undergraduate medical students demonstrate a limited understanding of fibromyalgia; they were skeptical about its very existence. The students’ beliefs were influenced by “witnessing attitudes and actions of their clinical teachers. Students interpret a lack of formal curriculum teaching around FMS [fibromyalgia syndrome] to mean that it is not serious and hence a low priority.” In such a climate of doubt, stigma thrives. Recent peer-reviewed studies have forged links between fibromyalgia and a history of emotional trauma, while funding into its biological mechanisms is scant. 

Similarly, with pelvic pain, “physicians are not educated on its causes and treatments, and when they can’t find the reason for a patient to have pain, they say, ‘it must be in your head,’” said Dr. Michael Hibner, author of Management of Chronic Pelvic Pain: A Practical Manual. Dr. Hibner is at the Arizona Center for Chronic Pelvic Pain, where he is the founder and lead surgeon, as well as serving as the Secretary-Treasurer and President-Elect of the American Association of Gynecologic Laparoscopists. (Full disclosure: Dr. Hibner was the physician who diagnosed me with entrapment.)

As it happens, all of the above conditions affect more women than men. Fibromyalgia occurs more often in people assigned female at birth, at a rate of up to 96 percent, although some studies suggest this imbalance is due in part to delays in diagnosis among men. Migraine is three to four times more common in women. Across the board, 70 percent of chronic-pain patients are female. And yet, 80 percent of pain studies are conducted on men or male mice, Gabrielle Jackson reports in Pain and Prejudice: How the Medical System Ignores Women—and What We Can Do About It. A 2015 study found that nothing about chronic pain in people assigned female at birth could be inferred from studying pain in male rodents, Jackson adds.

No matter your gender, to have chronic-pain syndrome is to come up against just about every pitfall of the U.S. health-care system, not to mention profound gaps in the social safety net. Chronic pain as a primary diagnosis does not qualify a patient for disability benefits. The United States lacks universal health care, but I’ve heard from patients in Canada and the U.K. about long waits and disbelieving doctors. In a profit-driven health-care system, patients must contend with all-too-short appointments, leaving them little time to explain complex symptoms. And as the government has tightened restrictions around opioid prescription, it’s often next to impossible for pain patients to access the medications they genuinely need. 

The changes we must make to lower America’s sky-high chronic-pain rates are much harder than assigning a patient a workbook or telling them to change out of their pajamas. We need health care reform, more research into chronic pain syndromes, and a more reasonable approach to opioid prescription. 

We also need to fight systemic sexism and racism in medicine. Dr. Akilah Cadet, author of White Supremacy Is All Around: Notes From a Black Disabled Woman in a White World, says that as a woman of color, she must work hard to dispel stereotypes like being a “drug seeker” with “stress and anxiety.” “Overall health and medical education needs to be changed to eliminate myths and stereotypes of people of color with chronic pain. More studies need to be done that include BIPOC [people], not just white men, so we know how chronic pain and disease present differently. And we need more BIPOC providers who relate to the patient population.” 

In the end, I was lucky. I had the financial resources to keep fighting for answers. And the pudendal decompression surgery worked. As I write this, I’ve been pain-free for four months. But as much as I’m grateful, I’m also angry. It shouldn’t have taken so long to uncover the cause of my pain. I shouldn’t have had to suffer as I did. I’m not the person I was before chronic pain—and every day, I mourn the self I lost.