When news broke about the arrest of Luigi Mangione for allegedly killing UnitedHealthcare CEO Brian Thompson after Mangione's experience with pain from spondylolisthesis (slipped vertebrae) and his frustration with the health care system, I was able to identify with that frustration: losing the ability to do things and raging against a system that puts profits over people. Most people do not understand how pain can command a person’s life.
I lived with pain my entire life and didn’t even know it. According to the latest statistics from the Centers for Disease Control and Prevention (CDC), nearly 1 in 4 adults have chronic pain and nearly 1 in 12 adults have high-impact pain. The pain I have experienced in my life ranges from muscle tightness due to staying in a seated position for the majority of the day to nerve pain from sciatica and a spinal-fusion surgery I had when I was 14. No specialist I can recall seeing ever asked if I had discomfort or pain due to my neuromuscular disease, and I just assumed chronic pain was part of my disability, not something that in itself deserved attention. Since I was a child, the message I received was that pain is to be expected, and there’s no point trying to find treatment since it will also get worse.
I wish that I had found community when I was a young adult, but I likely wouldn’t have joined any available organizations or support groups. At the time I was filled with internalized ableism: a deep sense of shame and self-consciousness about being disabled. Even as a disability rights activist, it’s only been in the last few years that I’ve slowly started to identify as someone with chronic pain and a member of this community.
When my nerve pain flares, my right leg is on pins and needles, causing my muscles to twitch and spasm. Even though that leg is usually entirely numb, there are periods of pain so severe it feels like sharp daggers are traveling from my foot up to my buttock, leaving me flushed with an elevated blood pressure. The pain comes in waves, every few minutes, with increasing intensity. Over-the-counter medications and distractions like watching TV do little to help. There were and are times when the misery feels relentless. Still, it took several years to find a doctor who believed in my pain, and who determined that opioids would be the most effective treatment for me.
My pain doctor and pulmonologist warned me about the adverse effects of opioids, such as developing a dependence on them, depressed breathing, and constipation. I accepted the risks and told them this was the only thing to bring temporary relief; however, I still wasn’t prescribed opioids until I became a patient of a palliative care doctor who saw my pain and helped me manage the risks. I spent so much labor and time trying to find relief, which is also the case for millions of people in the US. Fortunately, I now have access to the medications I need, but even with treatment, pain does not magically go away.
Online communities have filled a void in my life, giving me a platform to share my story and a way to connect with people all over the world. Using social media has become my primary form of organizing and sharing information, which is also a form of advocacy.
Before X was X, I followed Kate Nicholson, a civil rights attorney and executive director of the National Pain Advocacy Center (NPAC), an alliance of scientists and clinicians, civil rights advocates, and people with lived pain experience. Nicholson founded NPAC in 2021 because of an unmet need: “There was no organization led by and for people living with pain that focused on education, advocacy, and systems change, and also pledged not to accept pharmaceutical or health industry funding," she explains. "I entered pain advocacy when I saw people who used opioids to manage pain being cut off in ways that, studies show, increase their risks of overdose and suicide and destabilize their health and lives.”
Not only is pain difficult to diagnose and treat, significant disparities and inequities exist in the management of it. According to Nicholson, “Groups that report more severe pain and the worst pain outcomes are also more likely to experience provider bias and other barriers to care.” She points to the latest CDC statistics, which, according to her, show that “women disproportionately experience chronic pain and high-impact chronic pain. Women also have more co-morbid conditions causing pain and yet are more likely to be disbelieved and under-treated.”
Disparities by race and ethnicity, involving Black and Hispanic people in particular, are often rooted in medical racism. A 2016 study found that Black patients are systematically under-treated and disbelieved due to the false belief that black skin is “thicker” than white skin, resulting in lower pain scores and less accurate treatment recommendations. In some instances Black and Hispanic people have been shown to receive less medication or medication at lower doses.
These disparities are further compounded by sex, disability, and other factors. Emerging evidence indicates that artificial intelligence may encode the same racial biases in medicine that can perpetuate the under-assessment and under-treatment of Black patients. “Pain is a chief cause of disability globally and in the US, and people with disabilities experience heightened barriers to care," says Nicholson. “Studies show transgender people have more severe pain. There are also disparities in pain based on geography, education, and socioeconomic circumstances.” She adds, "This is just the tip of the iceberg.”
Research and treatment for chronic pain is at risk after the Trump administration's recent move to cancel public meetings, cease communications, and cap research costs at the National Institutes of Health. A judge temporarily halted the administration’s plan to cut research funding after 22 states sued, citing that these changes would have a devastating impact on grantees, such as reductions in personnel and the capacity to make breakthroughs in science.
Some of my main concerns with the Trump administration and a Republican-controlled Congress are the repeal of Medicaid expansion under the Affordable Care Act, the promotion of work requirements, and additional spending cuts. Robert F. Kennedy Jr.'s confirmation as secretary of health and human services is also worrisome.
Nicholson had the same concerns, as she told Teen Vogue via email before RFK Jr. was confirmed: “When the nominee pledges to fire 600 scientists, I’m concerned with who and what are on the chopping block. While I realize the cuts will face legal and political roadblocks, I worry about their impact on our work," she said. "Still, my job as an advocate is to look for the policy levers to press in any administration. RFK says he wants to address the chronic-illness epidemic in the US, and chronic pain is the most prevalent chronic illness. Our health care system is built mainly on an acute-care model, which, in itself, poses barriers to the treatment of chronic conditions like pain. We at NPAC will do our best to advance the rights of people with pain regardless of who is appointed.”
People with chronic pain are already up against many difficulties in finding and receiving treatment. We are fighting to be believed in a hyper-capitalist society where health care is not a human right. Even with the immense uncertainty and fear that marginalized communities have about the future, advocates like Nicholson and organizations like NPAC are on the front lines of making sure all people are treated with dignity and respect.
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