By Melanie Thernstrom

This pain is driving me mad. The phrase comes to mind whenever I catch myself responding angrily or stupidly to some challenge or threat. Who would I be if I didn’t have pain? Would I have acted this way, misremembered that thing or viewed a situation so darkly? Would I be so upset about the complete absurdity of our healthcare system? With the fact that the pain clinic where I was getting treatment stopped taking my insurance and sent me a bill for five 45-minute physical therapy sessions at $1,150 apiece?

The path by which Luigi Mangione transformed from a 26-year-old Ivy League tech bro to a violent crusader against a capitalist healthcare systems may never be fully understood. But his bleak inner reality seems to have been forged in part by chronic pain.

For eight years Mangione posted on Reddit about his struggles with “unbearable pain” and brain fog. Social media has been swooning over his dashing looks and jacked physique, but by age 23 he didn’t even want to date because his back pain made sex impossible.

“We don’t know his story, but we do know that relentless chronic pain is destabilizing,” says Dr. Scott Fishman, a pain specialist at the University of California, Davis, who founded its Center for Advancing Pain Relief, a rare center that focuses on both the treatment and prevention of pain.

It would be absurd to say that chronic pain drives sufferers to become murderers; the only people pain patients are at any heightened risk of killing is themselves. Yet Fishman likens the effects of enduring pain to “driving on a slippery road. It puts everyone at risk.”

As someone who has suffered from chronic pain for three decades, I know this misery too well. I spent eight years working on a book about pain, interviewing pain specialists and following hundreds of patients. I witnessed how many of them failed to get insurance coverage for treatments, or became too ill to work and lost their health insurance. Many pain patients don’t even have a proper diagnosis, which makes insurance coverage harder to secure. I personally found out only recently that my pain came from a connective tissue disorder caused by a rare genetic disease.

Pain is often associated with brain fog, disrupted sleep, psychological disorders and cognitive distortions because they share neural circuitry in the brain. “The circuits become abnormally wired,” says Dr. Sean Mackey, a neuroscientist and chief of pain medicine at Stanford. The longer the pain goes on, the more developed the abnormal circuitry, which amplifies pain and engenders feelings of hopelessness, helplessness and distress.

Like an autocrat who consolidates power by destroying a government’s checks and balances, pain perversely damages the very parts of the brain that modulate pain. People in pain sleep poorly, which impairs cognition and magnifies pain. Focusing obsessively on pain strengthens the brain’s pain pathways and makes it harder to think about anything else.

Mackey’s work has also shown that pain literally diminishes our capacity for joy and desire. For most people, thoughts about exciting plans or goals trigger the so-called reward center of the brain, which releases dopamine, the “feel good” hormone. Chronic pain, however, dampens these dopamine signals, which makes pleasure more elusive.

“It’s absolutely brutal to have such a life-halting issue, especially since the issue itself wears down the critical/logical thinking mind you’d usually use to tackle it,” Mangione wrote of his brain fog on Reddit.

Seeking wellness, Mangione moved to Honolulu in early 2022, but suffered a surfing accident, then a fall in his kitchen. He posted on social media and told friends that his pain had become unbearable, that he could feel his bones grinding. He had been working remotely in tech, but by early 2023 had quit his job.

Multidisciplinary pain care, including physical therapy, medication management, injections, mindfulness, pain psychology and other approaches that work in concert, offers the best results, but few patients receive it. The CDC estimates around 22 million Americans suffer debilitating “high-impact chronic pain,” but Mackey reckons most of these critical patients don’t receive evidence-based care, owing to insurance limitations, high deductibles, inaccessible providers or lack of insurance. We don’t know if Mangione received this care.

“Chronic pain is the most common chronic disease, but it is an orphan in the medical curriculum and at the insurance table,” observes Fishman. “Insurance doesn’t want to pay for pain that can’t be proven and that doesn’t have a stop and start.”

Everyone with serious medical problems eventually confronts the fact that the business of health insurance is often at odds with one’s health. UnitedHealthcare has stated that Mangione didn’t have United as an insurer. According to the muddled manifesto reportedly found in Mangione’s backpack when he was arrested, he targeted the company because of its power and size.

I, however, have had United, and I have my own well of bitterness about all their denials of claims and then the bittersweet—mainly bitter—feeling when they finally paid after months of appeal. But I never suffered from the delusion that the CEO of a for-profit company with a fiduciary duty to shareholders was in a position to reform the system.

Mangione wrote that he underwent spine surgery in July 2023 and posted an image of a spinal fusion. He said his diagnosis was spondylolisthesis, a slippage of the vertebral bodies in the spine, which mostly affects older people and often responds to nonsurgical care. Experts say surgery to fuse the vertebrae should be a last resort and is rare among young people. It is unclear whether Mangione met the criteria. Online, Mangione advised faking symptoms to obtain it.

“Tell them you are ‘unable to work’/ do your job…We live in a capitalist society. I’ve found that the medical industry responds to these key words far more urgently than you describing unbearable pain and how it’s impacting your quality of life,” he wrote on Reddit using the handle “Mister-Cactus,” a name that evokes a prickling pain. He even advised feigning the serious neurological symptoms of incontinence and foot weakness, which suggest the risk of a catastrophic spinal-cord injury that might cost millions of dollars in lifetime care. In August 2023 he posted that he was pain-free.

Yet spine surgery for back pain is not always the long-term solution that people hope it will be. In my own interviews with patients, I saw many who experienced early improvements after surgery but were devastated when the pain returned, sometimes with greater intensity. Within a year, nerves can grow back, sometimes irregularly, and can begin firing randomly, creating a painful condition called a neuroma. Or the nerves can become entrapped in scar tissue. Or the spine no longer moves normally and arthritis sets in.

“Spine surgery can be a deal with the devil,” Fishman says. “When you mess with the architecture of the spine and change its biomechanics, there are almost always unintended consequences.” These effects can be managed with regular rehabilitation and conditioning, but patients don’t always have access to it.

One of the last things Mangione posted before he disappeared was an angry tirade on the uselessness of physicians. It was 10 months after his surgery—around the time when his nerves might have grown back.

Did his pain return? Did he self-medicate, as many patients do, with street drugs, cannabis and alcohol, which can trigger mental illness in people who are predisposed? Was his G.I. Joe body a result of anabolic steroids, which can occasionally cause psychosis? Did he receive mental-health treatment, which can be prohibitively expensive and hard to get through insurance—if he even still had coverage since he wasn’t working? His family is wealthy, but mental illness often creates or deepens estrangement from families.

When asked about insurance coverage for his pain patients, Mackey sounds indignant. “Oh my God, it gets me so upset,” he says. “They deny, they deny, they deny. It’s a travesty.”

He notes that the right care can rehabilitate patients. Even brains pathologically rewired by pain can be salvaged, something documented in scans. “With good pain management, we can recondition the brain,” Mackey says. “We know what works. Patients just need meaningful access to the treatments.”