A week after the fatal shooting of UnitedHealthcare CEO Brian Thompson pushed health insurance horror stories to the fore, people living with chronic pain are now speaking out. That’s because of new information about Luigi Mangione, the 26-year-old man arrested and charged with murder in Thompson’s death, who, according to Insider, said 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 this group (representing a total of 8.5% of US adults) has “high-impact” chronic pain, defined in the survey as pain that affects work or life activities “most days” or “every day.” the last three months.
Chronic pain can have a huge impact on someone’s overall well-being. Those who suffer from chronic pain can find themselves with limited mobility and therefore independence, which can lead to secondary health problems—including insomnia, mental health conditions like depression, and what Johns Hopkins Medicine refers to as the “terrible triad.”
There can also be a financial burden due to medical bills and, for anyone unable to work, loss of pay and employer-provided health insurance. And because the diseases that cause chronic pain are often invisible and under-researched, it can be difficult even for those with decent health insurance to get approved for treatments that can help.
Below are stories from social media about people dealing with chronic pain who felt compelled to speak out following Mangione’s arrest.
‘I didn’t look sick enough’
TikToker Anna Paige Morgan says she lives with gastroparesis, a chronic condition in which the stomach’s ability to empty its contents is delayed, causing symptoms such as nausea, vomiting, abdominal pain, weight loss and malnutrition. Because her disease is “invisible” — meaning others assume she’s healthy based on her appearance — Morgan says she regularly faces uphill struggles when it comes to getting medical care.
“I’ve been denied testing so many times because I didn’t look sick enough,” she said in a TikTok video posted this week. According to Morgan, she also had to undergo unnecessary tests to rule out other illnesses in order to get insurance company approval for the care her doctor recommended. She is often in pain and has to cancel plans with loved ones because of her condition – something she says has caused her to “lose friends” who don’t understand or believe she is ill.
“Those who are trying to say that Luigi is crazy and there is no way that the pain in his spine could have caused him to feel the way he did have never, ever suffered physical pain of their own,” she added.
Morgan hopes that talking about chronic pain will finally bring validation to the chronically ill community. “We’re hurting, we’re sick, we’re hurt, we have to cancel plans sometimes because that’s just the way it is,” she said.
“Depressing and demoralizing”
Kath Barbadoro spoke in a recent TikTok from her bed, where she was recovering from a steroid injection in her back. Barbador’s chronic back pain stems from an injury. After her injury, she sought support online, where she discovered forums about chronic back pain. These forums, Barbadoro shared, are “depressing and demoralizing spaces on the Internet” because “back pain is really hard to treat.”
“It’s an injury, but I think in many ways the solution to this problem has a lot more to do with how people have to navigate their chronic disease management,” she said. “Back pain often doesn’t have a straightforward solution—often doesn’t even have, for example, 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 health insurance mess because of it.”
‘It’s exhausting’
Lee Tepper, a therapist, shared on TikTok that they suffered from a herniated disc in their 20s, which led to back pain and “countless medical interventions.” At the age of 26, they were scheduled for back surgery to avoid “permanent nerve damage” to their left leg and foot. Unfortunately, this happened the same year Tepper was dropped from their parents’ health insurance. The surgical center canceled the procedure, which was eventually transferred to another hospital. But because of the delay, they developed nerve damage.
“I can’t feel parts of my leg.” I can’t feel certain parts of my foot,” Tepper said. “I call it my ‘bad leg’ because it’s just weaker – the strength in my muscles never came back. And of course I’m still in pain. I still have sciatica. I still have neuropathic pain and it will probably never go away unless we make some crazy medical advancement in technology. … I’m going to be in pain, and that’s my life, and it’s exhausting.”
“I’ve been told I’m dramatic.”
TikToker Sophie has shared her own experience with the pain of chronic migraines – a condition she says took 15 years to diagnose.
“They told me I was being dramatic and trying to get out of school. I once had a migraine in the middle of an exam and the teacher laughed at me,” she said. “I had a migraine at a family dinner and everyone thought I was having a panic attack. Everyone thought I was really stressed out. I was stressed about having chronic pain.’
As an adult, Sophie was on short-term disability because her migraine attacks were so frequent that she was unable to work. But 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 good enough to drive to another state, I was good enough to work,” she said.
“Absolute shutdown”
People have also shared their stories of living with chronic pain on Reddit. Redditor PoppyPossum explained that they were born with “severe progressive scoliosis,” a condition in which the spine curves abnormally and worsens 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.
“Basically every day I have insane back pain that is absolutely disabling,” they wrote. “Sometimes I need my wife’s help to get up from the toilet. [I] I often don’t get to play with my toddler. Sometimes I have to stop sex in the act because of a sudden flare-up. I can’t work a TON of jobs.”
They noted that they once injured themselves by stretching so that they could not move for three days.
“Just take Tylenol”
Redditor AHCarbon, who is 25, wrote: “I suffer from chronic back pain that every doctor thinks I’m making up because I too young. I’ve seen about a hundred doctors, including specialists, who either underestimate me or rule out one thing and throw me out of the office.”
The Redditor, who said they’ve heard “just take 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 the lack of response.
“I left every single appointment with this crying problem,” they said, adding that it had cost their family “thousands and thousands” of dollars, despite missing a diagnosis for more than 10 years.