The headaches didn’t begin when I was thirteen, but that was when they became frequent and severe enough to warrant a trip to the pediatrician’s office. She dismissed them as a byproduct of puberty, hormones gone slightly awry. She prescribed a healthy dose of rest and minimizing my stress—though I hadn’t mentioned stress, she knew I was an academically successful girl and hence must be overcome with stress—and sent me home.
In the next two and a half years, the headaches mutated and worsened. They moved from the back of my skull to the sides, then from the sides to the temples. Dizziness and nauseousness began to accompany them, and on several occasions I passed out at school. I visited half a dozen doctors, more pediatricians and a few specialists, all of whom agreed with the consensus that I could most aptly be diagnosed with “puberty,” which seemed to me code for “being melodramatic” and “making it up.”
Near the end of my sophomore year of high school, a neurologist finally believed my condition was not only physically-rooted but a problem, and the words “myofascial pain syndrome” were entered onto my medical charts. Like fibromyalgia, myofascial pain syndrome is a common pain disorder in which sensitive spots or knots in a patient’s muscles—known as trigger points—send unnecessary pain signals to their brain, causing pain in the muscle and potentially elsewhere. In my case, significant tension in my shoulders and neck was behind the headaches.
“Wow,” the neurologist said as she measured my range of neck movement. “I’m surprised that you can even turn your head half as much as you can.”
“But I can reverse the damage, right?”
“Of course. With treatment, you can manage the tension and prevent it from worsening.”
This, it should be noted, is not the same thing as reversing the damage.
I tell this story as if to elicit pity or sympathy, but I am one of the lucky ones, for which I am endlessly grateful. The average span between chronic pain onset and diagnosis is much longer than two and a half years: approximately five for fibromyalgia, according to the Johns Hopkins Arthritis Center, and potentially more. Because my chronic pain could be felt in the tenseness of my shoulders and seen in my limited neck movement, because something physical corroborated my account of my experience, I received treatment.
According to the American Academy of Pain Medicine and a 2011 report by the Institute of Medicine, over 116 million American adults live with chronic pain: more than twice as many as all those affected by coronary heart disease, stroke, diabetes, and cancer every year. Most chronic pain sufferers do not receive adequate, if any, treatment. For 116 million adults in pain, there are only 4,000 pain specialists: 1 for every 29,000. Average wait times exceed a year and a half, sometimes by a significant amount. Patients in rural areas have the toughest times receiving care, having to take time off work and drive into local urban areas for specialist visits. And this assumes that once the patients get to the specialists, they’ll receive the proper care: I saw specialists years before I received any diagnosis and was readily dismissed.
Demographically, those who suffer from chronic pain do not equally represent all sociopolitical groups. Women are more likely to experience pain than their male counterparts. Adults without bachelor’s degrees are more likely to experience pain than their college-educated counterparts, in large part due to lower income. As Chen and Nizar phrase it in their article “Myofascial Pain Syndrome in Chronic Back Pain Patients,” there are markers and signals for chronic pain, “female gender being a significant risk factor.” It’s not that being female, nor that being undereducated or socioeconomically disadvantaged, inherently causes pain, but something about those experiences creates a risk for pain. Perhaps it’s related to a higher proportion of non-college-educated adults working in blue-collar jobs, opening them up to work-related accidents that could cause pain, but this would not fully explain the gender discrepancy. Perhaps it’s related to allostatic load, in which consistent stress negatively affects overall health functioning—due to the nature of our economy and society, both female and socioeconomically disadvantaged populations (and especially the overlap between those demographics) are asked to regularly take on more than their fair share of stress.
But regardless of the reason, this illuminates another problem implicit in pain’s undertreatment: the patients not receiving care are primarily from historically disadvantaged communities. Given my doctors’ focus on explaining my pain as caused by puberty and femininity, I have a difficult time imagining that these qualities of pain patients are entirely unrelated to their undertreatment. What would my story have been if I had been male—when would I have received a diagnosis and treatment? (As a comparison point, my brother who has migraines was diagnosed on his first visit to a specialist, despite there being no physical manifestation of pain in his case.) What would the larger national narrative of chronic pain be if primarily rich males were suffering from it?
In the years since my diagnosis, doctors have poked and prodded me countless times in attempts to “cure” my pain. The protocol for a first-time consultation with a physical therapist, chiropractor, or other specialist is etched into my memory: first explain the condition, then nod plainly when they tell me that there has been no need for me to suffer for so long, that my condition can be easily reversed. Though I held out hope early on, I know to no longer believe them.
Inevitably, there comes a time in treatment in which a doctor questions the reality of my pain. Though I never discuss feeling stressed, they recommend I spend more time decompressing and lighten my workload. They offer me therapists’ numbers. They tell me to try deep breathing. Once they discover that my pain isn’t as easily dismissible as they assumed, they balk and decide that I must be making it up, or that at the very least I am transposing psychological pain onto my physical frame.
These questioning moments never fail to coincide with when I seem by all external measures to be doing well: my range of neck motion is higher than normal, no large knots stick out, I do not feel tender. The evidence of my body does not support my (very real) experiences of pain, and so the pain must not be real or valid. The fact of the matter is that the treatment relies on external measures. It marks my pain by the angles to which I can turn my neck, and when those angles seem normal it assumes that my pain must too be at a manageable level.
The treatment also aims primarily to increase those angles: if I can turn my neck more degrees than I could last week, the pain must be fading, then eventually gone. The desired result of treatment deemed ideal is an increase in physical ability and, by extension, productivity, allowing me to live my life in a way that more closely resembles the life of a perfectly able-bodied person. It is assumed that minimization of pain is an extension of that increase, but this is not necessarily true.
What doctors have never been able to understand is that I would take the inconvenience of limited neck movement and stiffness if only the pain would diminish. I am in their offices not to become a more functioning cog in the national economy—an economy in which chronic pain costs the country upwards of 635 billion dollars each year—but to feel better as an individual. But this problem—how to see one person amidst a large statistical pool as more than their data point and the generalizable trends of the data as a whole—stretches beyond one doctor treating one patient.
Pain varies widely between patients; the data does little in describing any one person’s experience of pain. I have to wonder if one standardized treatment plan (like that of the external measures) could even function. But how could doctors implement a new, specific treatment plan for each individual patient? What does the treatment that I consider ideal look like?
Because the problem lies not just in patients’ limited access to treatment but in the priorities of the treatment available once patients actually can access it, self-treatment runs rampant among the chronic pain community. The correlation between distance from healthcare and prescription drug abuse is no accident: a patient living in a rural area with little access to medical resources that could help manage their pain, regularly dismissed by doctors and seeing many others in their community suffering similar pain, has little else to turn to than opioid painkillers.
In more eccentric cases, patients sidelined by medical practitioners will self-diagnose illnesses of questionable veracity. They congregate in online forums and conventions, validating each other’s symptoms and rallying against the doctors who view them as quacks. What they want, almost more than a cure for the pain and sickness they feel, is a reason for the pain: an explanation of its origin and a way to make sense of it, a shift from viewing it as a life-destroying force to a community-building blessing in disguise, especially when they believe they will live the majority if not the rest of their lives with the pain.
I don’t claim to understand whether or not these diagnoses are medically valid, but I do know that one of the first things I did after being diagnosed with myofascial pain syndrome was to Google the condition’s name. On days when I experience bad pain flare-ups, I still turn to reading others’ accounts of their pain on Internet forums, seeking to validate the pain I feel by placing it adjacent to others’ narratives and within a larger, national context. Arguably, this entire article is simply an attempt to construe a larger meaning from my own small experience in a way not unlike the attempts of those self-diagnosing in the absence of official medical diagnoses or treatment. When the information isn’t there from verified sources like doctors, when the verified sources are consistently telling you that an experience affecting you every day is simply you lying or overdramatizing, where else could you go?
Whether or not these diseases are medically valid, they are real. The patients experiencing them feel true pain—pain is an intrinsic experience marked only by a person’s ability to feel it, not by external markers. In the absence of obvious reason and rationalization of pain, pain still exists and still demands remedy; it is still physical in its manifestation and not psychological hallucination. Patients self-medicating with opioids still need medicine, even if the medicine they choose to take is non-prescribed and unregulated (and, I should add, dangerous. I in no way want to advocate or justify prescription drug abuse).
The way to prevent these behaviors isn’t to make drugs harder to access or to deem self-diagnosing communities “crazy.” In throwing money at alleviating the symptoms of a disease—like, say, funneling governmental funds into prescription drug regulation to fight the opioid crisis, or spreading materials about the potential falseness of certain supposed medical conditions—the underlying cause remains and will continue to manifest harmfully until fully treated. Allowing access to healthy, traditional forms of chronic pain treatment, preventing patients from turning to alternative methods in the first place, is the beginning of a solution.
I still have difficulties managing my pain. I take daily medication meant to prevent unnecessary pain signals; I get steroid shots in my shoulders once every few months; I undergo physical therapy and chiropractic care when possible under my insurance policy. Though this all helps, it isn’t a cure. Unlike I imagined at fifteen, I can’t “reverse the damage.” I can only minimize the pain I currently experience in this timeline in which I went years without treatment to minimize the pain. I can only attempt to prevent the underlying causes of the pain from worsening. There is no simple answer; there is no simple explanation. This is, after all, only an introduction.
I remember vividly my neurologist telling me that my pain was treatable not because its treatment was easy but because its treatment was always possible. At thirteen when I first visited a doctor to discuss it, its treatment was possible. In the next two and a half years in which it went untreated and worsened, its treatment was possible.
For the millions of Americans suffering from chronic pain with limited treatment focused on the wrong goals, experiencing complex and individualized journeys that demand attention, actual treatment is possible. How we illuminate the struggles of this community and take action to improve their lives, though, remains to be seen.