The Pain of Waiting During a Pandemic: Displacements of Disability in a Time of Crisis

By Amanda Votta

I woke up one morning in early March with the worst sore throat I’d had in a decade. My entire body hurt five times more than usual, and I felt so cold I was shaking. When I took my temperature, though, it was a normal 98.2F. And my throat, even if it felt like I’d swallowed razor wire and broken glass, didn’t look nearly as crimson as it had on other occasions. I decided to arrange with my professors to attend class via Skype or Zoom until I felt better, thinking it would pass in a few days. It didn’t. I felt anxious, waiting for my professors to reply to my request. As both a scholar of chronic pain in the US and as a person who has lived with chronic pain for most of my life, I know that requests for accommodations are often denied. This time, though, my request was approved.

That meant I was already at home when the anthropology department where I am a student decided to suspend classes until March 31st, and thereafter resume online. COVID-19 had arrived—or, rather, attention was finally being paid to its arrival—and everything was changing. The attendance via Zoom I had arranged would become standard, as would other accommodations I had asked for as a chronic pain sufferer in the past. Sometimes, a request was denied because it would, I was told, be too difficult to implement or sustain, or would somehow detract from my experience.

I heard similar rationales for denied accommodation requests from my chronic pain-afflicted interlocutors, many of whom I’ve been in touch with via social media since the pandemic started. Stacy, who suffers from fibromyalgia and irritable bowel syndrome, was angry that working from home was suddenly becoming commonplace. “How many times did I ask for and get denied [that option]?” she wondered. “And I only wanted to [work from home] if I was having a really, really bad day.” This sentiment echoed over and over on Twitter, where chronic pain sufferers have been voicing their anger at decades of accommodations denied. Disability rights activist Chairs Hill, among others, pointed out that “This pandemic is making possible a ton of accessibility measures y’all said would never work before.” Changes that the chronically in pain, ill, and disabled have been asking and waiting for have only been implemented when those with chronic illness and pain are not the reason for their implementation.

Claire, whose chronic pain stems from auto-immune diseases for which she takes immune system-suppressing medications, worried about having to go to her doctor’s office to get her monthly prescription for oxycodone. “What if I get this virus because I have to go in to get my script?” she asked over chat in early March. She and I talked about how difficult it could be for a person in pain to make it to their appointment, even under normal circumstances. “When you’re in agony,” she told me, “how are you supposed to get to the office in the first place? You can’t just wait til you feel better.”

Fortunately, another formerly unworkable accessibility measure, the ability to consult with prescribing doctors remotely, is now possible. Again, though, this measure was not enacted for the convenience of disabled patients. For many living with chronic pain, an in-person visit with a doctor (and frequently regular urine drug screening) is required in order to be prescribed the opioids that help them to function as best they can. On March 16, however, in response to the COVID-19 emergency, the Drug Enforcement Agency altered its regulations to allow physicians to prescribe opioids to current and new patients through an “audio-visual, real-time, two-way interactive communication system.”

People will still have to go to the pharmacy to get their medications, though, since opioids cannot be delivered through the mail. Likewise, opioids are only prescribed for a month’s supply. This means that immune-compromised, high risk chronic pain sufferers will have to continue to expose themselves to a virus that they are already at a higher risk of contracting and falling seriously ill from.

While the DEA’s approval of telemedicine for opioid prescribing is welcome, my interlocutors and I have wondered why it took a month and a half to implement, and why further accommodations have not been instituted.

It is impossible for the nearly 12 million people who rely on opioids for pain management in the US to receive their opioid prescriptions via delivery. Allowing nationwide accessibility to opioids through delivery is critical for the safety of chronic pain patients during this pandemic. So is allowing people on chronic opioid therapy to obtain a 7 to 10 day emergency supply, as recommended by the CDC for other essential medications, in case they are quarantined or ordered to self-isolate. Waiting the 28-30 days for a new prescription would be impossible under those circumstances.

Talk in US media and politics has highlighted not just the public health emergency brought on by unforeseen numbers of severely ill patients, but also the economic crisis that has resulted. While a two trillion-dollar stimulus package was passed by the US Congress in response to these concerns, with a huge portion of that money earmarked for corporate assistance, biomedical professionals fear having to make ethically fraught decisions about who will and will not receive potentially life-saving care due to a lack of equipment and supplies.

How will these decisions be made? Who will be selected and who will be excluded? If decisions are made based on American ideas about physical fitness and the potential to be productive, and so economically and socially valuable, the chronically ill are disadvantaged.

A bulletin from the Department of Health and Human Services warns against discriminating against the disabled in making such decisions, but the language is ambiguous. The very public health emergency that made opioid prescribing possible via telemedicine “may provide immunity from certain liability under civil rights laws” for deprioritizing the lives of many who rely on opioids. The disabled—which numbers chronic pain sufferers among their ranks—now wait angrily and anxiously to see if hospitals will deem them low priority for life saving interventions.

Amanda Votta is a Ph.D. candidate in anthropology at Brown University in Rhode Island. She received her M.A. from Brandeis University in 2019. Her work explores the effects of opioid prescribing changes on chronic pain sufferers and conceptions of drug use and dependence in the U.S. Votta aims to add nuance to understandings of dependence and to current perceptions of the medical and nonmedical use of opioids in North America.

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