In 2015, Mandy Perry went to the emergency room (ER) with horrible stomach cramps. Perry, a small business owner in Pennsylvania whose pronouns are they/them, has chronic pain due to spinal scarring from a tumor removal in 2013. Perry told the ER staff about their medical history, and said that the pain meds at home had not helped with the cramps. The ER doctor treated Perry like a criminal, and said, “I’m not here to give you pain meds.” Perry went home, vomited violently for six hours, and finally returned. At that point the doctors finally realized that Perry needed to have their gall bladder removed.
This incident was dramatic, but it wasn’t atypical. People who suffer from pain are regularly treated less as patients than as perpetrators. If patients acknowledge a history of chronic pain, or ask for specific medicines or treatments, they can sometimes be insulted, shamed, or denied treatment. “I don’t feel I can be honest with my doctor,” Perry says. “I don’t feel I can say, ‘My pain is getting worse,’ because I’m afraid of being labeled a drug seeker. Then when things do get worse, I run the risk of having problems go undetected.”
One of the ironies of free speech discussions in the United States is that those people whose speech is most restricted are often least able to talk about it. Mainstream news outlets focus free speech discussions on protests against people with large platforms. But they rarely discuss the rights of patients to speak about their illnesses without stigma and criminalization.
In particular, chronic pain patients are silenced thanks to the War on Drugs—and, especially in the last few years, in the name of the opioid crisis. Opioid addiction is a serious problem in the United States; 42,000 people died from opioid overdoses in 2016, according to the Department of Health and Human Services, and the U.S. has seen an increase of more than 500 percent in heroin-related deaths since 2002. The understandable desire to reduce America’s number of opioid addicts, though, has had catastrophic consequences for chronic pain patients. Walmart, for example, has limited opioid prescriptions so that patients have to get refills every week, rather than filling them a month at a time. Insurance companies have also placed limits on the amount of opioid medication they will cover. Some pharmacies won’t handle prescriptions over the phone, and sometimes aren’t even allowed to tell patients if the medicine is in stock.
“On more than one occasion, I’ve been left driving all over town to 20 or more pharmacies over multiple days while fearing that I’ll run out of my pain medication before I can get more,” one patient with the connective tissue disease Ehlers-Danlos Syndrome tells me. (She asked to remain anonymous because of the stigma associated with the use of opioid medications.) “I’ve been reduced to tears at a pharmacy window on more than one occasion, desperate for someone to help me,” this patient says.
Dr. Lynn Webster, vice president of scientific affairs at PRA Health Sciences, a contract research organization, and past president of the American Academy of Pain Medicine, says that opioid restrictions have affected practically all chronic pain patients. “It would be an exception for people to be able to have access to the same amount or kind of treatment that they had five years ago,” he says. “I receive an email on an average of one a day from someone in the country who’s asking me what they can do to get treated because their doctors are no longer willing to provide them the medicine that has been helpful.”
Some doctors are unwilling to provide those medications in part because they are scared. Doctors who regularly prescribe high doses of opioids can face investigations, and even Drug Enforcement Agency raids or prosecution. According to Steven Stanos, medical director of Swedish Pain Services and Swedish Health System in Washington state, “Physicians feel worried because the state is watching how much they prescribe, and they don’t want to be perceived as doing the wrong thing. It does vary, but I think there are physicians who are throwing their hands up and who say not only do they not want to prescribe opioids, but they’re not interested in seeing patients that have chronic pain problems.”
Insurance companies have added to the problem, Stanos says, by requiring more and more prior authorizations and paperwork for opioid prescriptions and treatment. Stanos says that the increase in bureaucratic barriers has created much more work for his own pain clinic. “That’s another reason that a primary care doctor is going to say, ‘I’m not going to bother treating a patient’s pain,'” Stanos says.
Mel, a biotech journalist in Portland, Oregon, says that doctors often treat her scientific knowledge and expertise as a red flag when she tries to get treatment for Ehlers-Danlos syndrome. “They become suspicious of me when I have done my research and know my medications,” she says.
“There is a tightrope that you have to walk in pain management these days,” she adds, “because every physician that you talk to is now treating any opiate medication as if it is actual poison that may kill you and your pets if you take a single pill. You can’t walk in and tell them that you are looking for an opioid. Dear gods no. That would be like taking your chart and writing ‘I Am a Drug Seeker’ in big block letters and ruining your chances of ever getting any actual pain management care ever again.”
Pain patients, like other patients, often know which medicines work for them and which do not. They also have important information about their medical backgrounds. For example, Becca, a 2017 law school graduate living in California, has chronic pelvic pain, as well as a history of addiction. She says she’d been clean for 10 years when she approached her doctor about treating the pain. But she still felt that it was important for her doctor to know about her previous addiction so they could manage risks. Instead of working with her, she says, the doctors “treated me like an addict, not a patient.” She says that “this was my first lesson in needing to lie because a lot of places won’t treat chronic pain for people with an addiction history.”
Forcing patients to lie and mislead their doctors creates serious problems. “It is an adversarial situation,” Webster says. “It is anything but a good patient relationship. So much of what we do is really demonstrating empathy, and empathy can reduce a lot of anxiety. And anxiety increases the amount of pain somebody has and may lead to overusing their medicines.” Shaming and silencing patients can actually increase their need for pain medicine, Webster says.
At least for the foreseeable future, there are going to be people with chronic pain who need to use opioids, and who should have access to those medications. But there are things that we could do to reduce, if not eliminate, opioid abuse that have nothing to do with punishing patients. Legalizing marijuana appears to lower opioid use significantly. Cognitive behavioral therapy and physical therapy can also be effective in reducing chronic pain in some cases—but insurance companies often refuse to cover such treatments, or else can cut patients off after only a few sessions. Stanos notes that many of the treatments his clinic prescribes, like mindfulness training and physical therapy, provide real benefits but aren’t covered by many insurers.
Unfortunately, these fixes require politicians to confront public prejudice or powerful special interests. People who suffer from chronic pain, meanwhile, are often stigmatized as slackers and drug users. So there’s little social pushback when politicians blame pain patients for the problem, or pass restrictive laws and guidelines that effectively criminalize their suffering.
These laws not only make it hard for pain patients to get access to medicine; they also make it difficult for patients to advocate for themselves with doctors or to speak up in public, for fear that they might draw the attention of law enforcement, or even of their own doctors. When I asked on social media for people to talk about their experiences with tightened opioid restrictions for this article, I was deluged with responses—many more than I could include here. Chronic pain patients are desperate to tell the stories that the public, the government, and even their doctors don’t want to hear.
Pundits talk incessantly about the right to free speech on campus or the danger that will result if this writer or that writer is denied a platform. High-profile conservative pundits like Jordan Peterson or Christina Hoff Sommers have become free-speech martyrs precisely because they have large platforms from which they can complain about being silenced.
But what is the use of free speech if it doesn’t even protect the right to say, “I am in pain?”
“I think the way doctors are treating chronic pain patients right now is criminal, and a human rights violation,” Mel says. “They should be ashamed of themselves.”
