I started taking opioid painkillers not long after my third and last child was born. Despite having had nearly four dozen broken bones in childhood due to a genetic bone disorder (osteogenesis imperfecta or OI), I struggled little with pain or functional limitations in my young adulthood. I limped and tired easily, but every day I climbed up and down stairs, cleaned and cooked, walked with a baby or two in a stroller to do errands, and cared for my young children without any more severe consequence than sore muscles and joints at bedtime.
But around the time my son was born, things started, literally, to fall apart. Eight months pregnant, I sustained a meniscal tear in my left knee that would ultimately be surgically repaired twice but never really fixed. Today, at 47 years old, I have no cartilage left in either knee; sometimes when I change position, the joints emit an audible crunch. A stress fracture in my femur has bothered me on and off for a year. My orthopedist reports that the balls of my hip joints are embedding themselves in the too-soft bone of my pelvic sockets. My right wrist aches and throbs at night, particularly if I did a lot of writing or housecleaning that day.
To continue to climb up and down stairs, clean and cook, do my work, and care for my family, I rely on long-acting opioids, combined with high doses of Vitamin D, ibuprofen, hot baths, low-impact exercise (especially swimming), a produce-heavy anti-inflammatory diet, and rest.
In the years that I’ve been using opioids, their use has become more restricted and controversial. A surge in heroin addiction and overdose is directly related to painkiller abuse. People get hooked on the Vicodin or Percocet prescribed after surgery or an injury. When they find that buying pills on the street is prohibitively expensive, they turn to heroin, which gives the same high for a much lower price. Recently, a study by Nobel Prize-winning economists of startlingly high death rates for white, high-school–educated, middle-aged Americans concluded that this trend is linked to substance abuse and addiction, including opioid abuse and alcoholism. Meanwhile, few data are available defining to what extent and in what doses and formulations opioids are effective in treating chronic pain, and opioids are likely not the right treatment for many chronic pain patients. Research further verifies that doctors perceive chronic pain patients as among the most time-consuming and difficult patients to treat. In a recent Boston Globe Op-Ed, Judy Foreman related this anecdote: When professors at one medical school asked graduating medical students what they would do when faced by a pain patient, one student spoke for many: “Run!”
While opioids may not be the right treatment for all, or even most, chronic pain patients, these medications work well for me with few side effects. The simple fact that I’ve found an effective treatment allowing me to live an active life with significant disability, however, is obscured by the controversy, fear, stigma and caution that surround opioid prescribing. Getting my medication has become steadily more difficult—a development I’d find easier to accommodate if it didn’t come packaged with shame and fear that stricter prescribing rules, and practitioners weary of following those rules while second-guessing patient intentions, might ultimately mean that I can’t get this medication at all. I’ve begun preempting such a situation by proactively tapering down my prescription painkillers, and may ultimately go off them altogether.
Several months ago, I had to call my doctor’s office four times and the pharmacy three times in a matter of hours (during my workday) to get my prescription filled. My doctor’s less-than-pristine handwriting made the pharmacy—where I’ve had my prescriptions, prescribed by the same doctor, filled for about six years—suspicious that the prescription had been tampered with, so they wanted to call the doctor’s office to verify it. My doctor’s medical assistant left for the day at noon without returning the pharmacy’s call. Having taken my last pill of the previous prescription that morning, I knew that if I didn’t get the prescription filled that day, I’d be up all night with pain and the effects of opioid withdrawal. With each call I made, the anxiety and urgency in my voice ticked upward. Another of my doctor’s staff members eventually verified the prescription so I could get it filled. The pharmacist was angry about so much time spent on a single prescription. My doctor’s staff member was annoyed that she had to step in to do a job that wasn’t hers. I got my prescription, and I also got a hefty dose of shame that I have become the anxious and demanding time-suck known as the chronic pain patient.
In the years that I’ve been on opioids, rates of painkiller abuse and heroin addiction have exploded, as have articles, blog posts and Op-Eds about these trends. In an effort to make informed decisions and make sense of my mixed feelings about opioid therapy, I’ve read dozens of articles and books, including Melanie Thernstrom’s "The Pain Chronicles," Judy Foreman’s "A Nation in Pain," Barry Meier’s "Pain Killer" and Sam Quinones’ "Dreamland"—most of which tell the same basic story.
In the 1990s, prominent pain specialists claimed that chronic pain was massively undertreated. Based on a study that critics have since said was limited and misinterpreted, these specialists argued that there is statistically a very small chance of someone on opioids for chronic pain becoming addicted, particularly if they have no previous substance abuse problem. They argued that opioids such as hydrocodone (e.g., in Vicodin) and oxycodone (e.g., in Percocet) could be effectively and safely used long-term for non-malignant pain. Purdue Pharma developed a timed-release form of oxycodone called OxyContin, aggressively marketing it to primary care physicians for use by patients needing steady around-the-clock pain relief. Purdue stated that OxyContin’s slow-release formula would make it unattractive to addicts who want a quick, substantial high.
Drug addicts soon figured out that by crushing OxyContin to destroy the timed-release mechanism and snorting or injecting the powder, they could get the entire dose—meant to be parceled out over eight or 12 hours—at once. Only after towns in places like Ohio, West Virginia and Kentucky were overwhelmed with people addicted to opioids and dying of overdoses did Purdue admit that they had misstated OxyContin’s non-addictive nature. Some pain specialists have since backed off their call for aggressive opioid treatment, though some still believe that pain is undertreated and that opioids work well for some patients. Furthermore, there is simply not much good research on how effective opioids are or could be in treating different types of chronic pain.
Much of the journalism that tells this same basic story also reinforces the same misinformation. Journalists, for example, regularly confuse physical dependence (in which anyone who uses opioids long-term will become dependent and experience withdrawal symptoms if they stop taking them suddenly) with addiction (which involves loss of control, compulsion and continuing to abuse a substance despite negative consequences for one’s health and life). Articles imply that addiction is an inevitable consequence for anyone who takes opioids for more than a couple of days. A 2010 Time magazine article, for example, painted a portrait of middle-aged folks, with our aches and pains and routine surgeries, becoming addicted after popping a few pills; the article referred to post-surgical pain prescriptions as “little opioid starter kit[s]” that “pickle” the brains of “users.” In addition, reports of the sharp increase in opioid-related overdoses regularly fail to note that many overdose deaths involve opioids taken with other substances, including alcohol and anti-anxiety medications—a dangerous practice in which responsible patients know not to engage.
Coverage of opioid use for chronic pain patients tends to profile patients for whom opioid therapy either didn’t work or did indeed feed an addiction. Misinformed journalism reinforces the stereotype of chronic pain patients as needy, lazy and more interested in getting drugs than getting better. In a New York Times Op-Ed last year, Sam Quinones chastised patients for being “enslaved” by our “pursuit of painlessness” and expecting doctors and pills to “magically fix us.” What we really need to do, Quinones preached, is lose weight, eat better and stop looking for an easy fix. As anyone successfully using opioids to manage pain could have told him, little about opioid therapy is easy, and we know better than anyone that “painlessness” is unobtainable. My medications don’t obliterate my pain; they mute it to a level that allows me to live without constantly thinking about what hurts.
Journalists occasionally include a sentence to the effect of, “For some people, opioids provide real and needed relief for their chronic pain.” But I have yet to see a mainstream media article that goes on to tell the story of one of those people. My story, or a story like mine, rarely makes it into the news.
Conventional wisdom says that guilt is about something you do, while shame is about who you are. To that I would add: Guilt lives in the head, while shame inhabits the body. Physiological markers of shame—cheeks flaming red, heart pounding, stomach roiling, the piercing urge to run and hide—overtake me every time I walk into my drug store. The stigma, controversy and potentially addictive nature of my prescriptions render my pharmacy interactions time-consuming, difficult and occasionally humiliating. I so strongly associate the pharmacy counter with shame that even when I go into the store just to buy a birthday card or deodorant, my cheeks burn and my heart races.
Drugstores are strange places—the goods on their shelves a mashup of frivolity, practicality and urgent necessity, and the pharmacy counter a place of unsettling intimacy. Your pharmacist knows things about you that even your friends may not—that you have chronic yeast infections or severe dandruff, that you’re back for yet another month’s worth of fertility drugs, that you keep trading up for more and more potent medications for an illness that isn’t getting better.
Along with discomfort at the pharmacy counter comes a more generalized sense of shame over taking medication at all. A friend who takes antidepressants says that every day, she asks herself if she really needs that little blue pill, or if she is taking the easy way out. Our current cultural climate exacerbates the stigma of taking medication for conditions, including psychiatric illness and chronic pain, that some people perceive as character flaws instead of medical problems. My Facebook and Twitter feeds are populated by rants against Big Pharma and profit-focused doctors alongside uplifting stories about people who take a DIY approach to health —the woman with multiple sclerosis who claims she is still able to walk because of her self-engineered diet and exercise program, the nutritionist who offers sour cherries and other anti-inflammatory foods as a remedy for back pain, the blogger who shares his regimen of daily runs, extra-high doses of Vitamin D, and a diet cleansed of grains, dairy, and sugar as a surefire way to send wintertime depression packing.
In a culture distrustful of experts and authority figures, and partial to sloppily constructed arguments favoring the “natural” over the human-made, ongoing dependence on any kind of medication is questionable. Dependence on opioids— a substance often abused and at the root of severe social ills—is seen as not merely misguided or uninformed, but deeply suspect.
The alarming rise in painkiller abuse, heroin addiction, overdoses and deaths is, of course, worthy of extensive and urgent conversation. I know too well the damage that addiction can do. My husband’s family history is scarred by addiction and depression—twin legacies that contributed to the deaths of two of his brothers before they turned 40.
I also understand why opioids need to be regulated, and that logistical hurdles—that I must drive to pick up a new paper prescription from my doctor’s office every month and can usually get a new prescription filled only a full 30 days after the old one (which leaves no leeway for delays like the one I had several months ago)—are designed to deter abuse and diversion.
But if I give opioids up, it won’t be because of logistical hassles, even if they are haphazard and maddening. It won’t be because opioids don’t work. No, the only reason I’m seriously considering going off opioids for good— a process that will require tapering my dose down for many months to avoid withdrawal—is that I’m tired of feeling so ashamed.
The shame that overtakes my body when I walk into the pharmacy isn’t guilt about mistakes I’ve made in trying to live well with a deteriorating skeleton, things I’ve done that I shouldn’t or haven’t done that I should, although there are plenty of those. The shame is about who I’ve become—in the eyes of a culture suspicious of traditional medicine and reeling from painkiller and heroin abuse, in the eyes of medical professionals stymied by chronic pain, wary of potential drug seekers, and anxious to avoid suspicion about their prescribing practices, and in my own eyes. To be a chronic pain patient on opioids is to be seen as a problem, instead of as a person who, with the help of these potent medications and other tools, lives an active, satisfying life despite joints that crunch and bones that ache.