Luigi Mangione may have suffered from chronic pain. Now, people on social media are speaking up about living with the 'invisible' condition.

One week after the fatal shooting of UnitedHealthcare CEO Brian Thompson pushed health insurance horror stories to the forefront, people living with chronic pain are now speaking out. That’s due to new information about Luigi Mangione, the 26-year-old who was arrested and charged with murder in Thompson’s death, who, per Insider, stated on social media that he suffers from a back condition known as spondylolisthesis.

Chronic pain is not a rare problem in America. According to a 2023 survey by the Centers for Disease Control and Prevention, 24.3% of Americans live with some type of chronic pain. More than a third of that group (representing 8.5% of U.S. adults overall) experience “high-impact” chronic pain, which was defined by the survey as pain that impacted work or life activities “most days” or “every day” over the last three months.

Chronic pain can have a huge effect on someone’s overall well-being. Those suffering from chronic pain may find themselves with limited mobility and therefore independence, which can lead to secondary health issues — including insomnia, mental health conditions like depression and what Johns Hopkins Medicine refers to as the “terrible triad.”

There can also be financial strain due to medical bills and, for anyone unable to work, the loss of a paycheck and employer-provided health insurance. And because illnesses that cause chronic pain are often invisible and poorly researched, it can be challenging for even those with decent health insurance to get approved for treatments that may help.

Below are stories from social media of people dealing with chronic pain who felt compelled to speak out in the wake of Mangione’s arrest.

‘I didn’t appear sick enough’

TikToker Anna Paige Morgan says she lives with gastroparesis, a chronic illness in which the stomach's ability to empty its contents is delayed, causing symptoms such as nausea, vomiting, abdominal pain, weight loss and malnutrition. Since her illness is “invisible” — meaning others assume she is healthy based on her appearance — Morgan says she regularly faces an uphill battle when it comes to getting medical care.

“I was denied so many times for testing because I didn’t appear sick enough,” she said in a TikTok video posted this week. According to Morgan, she’s also had to undergo unnecessary tests to rule out other ailments in order to get insurance approval for the care her doctor has recommended. She is often in pain and has to cancel plans with loved ones due to her condition — something, she explained, that has caused her to “lose friends” who don’t understand or believe she is sick.

“Those who are trying to say that Luigi is crazy and there’s no way that spinal pain could cause him to feel the way he did has never, never suffered their own physical pain,” she added.

Morgan hopes that the conversations around chronic pain will finally bring validation to the chronically ill community. “We are in pain, we are sick, we are hurt, we have to cancel plans sometimes, because that's just the way it is,” she shared.

‘Depressing and demoralizing’

Kath Barbadoro spoke in a recent TikTok from bed, where she was recovering from a steroid shot in her back. Barbadoro’s chronic back pain stems from an injury. Post-injury, she sought out support online, where she discovered chronic back pain forums. These forums, Barbadoro shared, are “depressing and demoralizing spaces on the internet,” as “back pain is really difficult to treat.”

“It’s an injury, but in a lot of ways, dealing with it, I think, has a lot more in common with how people have to navigate getting their chronic illness treated,” she said. “Back pain often does not have a straightforward solution — it often doesn’t even really have, like, a straightforward diagnosis.”

She added, “I can imagine the combination of excruciating pain, not feeling like you're getting definitive results or definitive treatment plans and having to deal with the mess of health insurance over that.”

‘It’s exhausting’

Lee Tepper, a therapist, shared on TikTok that they suffered from a herniated disc at age 20, leading to back pain and “countless medical interventions.” At 26, they were scheduled for back surgery in order to avoid “permanent nerve damage” in their left leg and foot. Unfortunately, it happened to be the same year that Tepper was kicked off their parents’ medical insurance. The surgery center canceled the procedure, which was eventually rescheduled at a different hospital. But due to the delay, they developed nerve damage.

“I can't feel certain parts of my leg. I can't feel certain parts of my foot,” Tepper said. “I call it, like, my ‘bad leg,’ because it's just weaker — the strength in my muscles just never really came back. And I still, of course, have pain. I still have sciatica. I still have neuropathy pain, and it is likely never gonna go away unless we have some kind of crazy medical advancement in technology. … I'm going to be in pain, and that is my life, and it's exhausting.”

‘I was told that I was being dramatic’

TikToker Sophie shared her own experience with pain due to chronic migraines — a condition, she said, that took 15 years to diagnose.

“I was told that I was being dramatic, trying to get out of school. I had a migraine in the middle of an exam once, and a teacher laughed at me,” she said. “I had a migraine at a family dinner, and everybody thought I had a panic attack. Everybody thought I was really stressed. I was stressed about being in chronic pain.”

As an adult, Sophie went on short-term disability due to her migraine attacks becoming so frequent that she was unable to work. However, when she went to a pharmacy in a nearby state to fill a prescription, she learned that her insurance company had denied her short-term disability. The reason? “They thought if I was well enough to drive to another state, I was well enough to work,” she said.

‘Absolutely disabling’

On Reddit, people have shared their stories of living with chronic pain as well. Redditor PoppyPossum explained they were born with “severe progressive scoliosis,” a condition in which the spine curves abnormally and continues to worsen over time. They underwent surgery after their spinal curvature reached 60 degrees, which is considered a severe deformity and can cause significant pain and complications.

“I have crazy back pain pretty much every day that is absolutely disabling,” they wrote. “I sometimes need my wife's help to stand back up off the toilet. [I] often cannot play with my toddler. Sometimes I have to abort sex in the act because of a sudden flare up. I cannot work a TON of jobs.”

They noted that they once injured themselves by stretching, leaving them unable to move for three days.

‘Just take a Tylenol’

Redditor AHCarbon, who is 25, wrote, “I suffer from chronic back pain that every doctor seems to think I am just making up because I’m too young. I’ve seen like a hundred doctors, including specialists, who all either belittle me or rule 1 thing out and kick me out of the office.”

The Redditor, who said they’ve heard “just take a Tylenol” more times than they can count, added that their pain has spread from their muscles to their spine over the years, and that it “continues to spread” despite a lack of answers.

“I’ve left every single appointment about this issue crying,” they said, noting that it has cost their family “thousands and thousands” of dollars, despite a lack of a diagnosis after more than 10 years.