21 Million Americans in Severe Pain Don’t Have a Diagnosis
/By Pat Anson
A new study has found what many chronic pain patients have already learned the hard way: It’s difficult to get a diagnosis.
Researchers at The University of Texas at Arlington (UTA) estimate that 21 million Americans living with severe pain have never received a medical diagnosis for what’s causing it.
Their findings, recently published in the journal PAIN, are based on four years of federal health data, which found a significant gap between the painful symptoms that patients report and what actually appears in their medical records.
“What this study shows is that a significant number of people experience pain that interferes with their work and daily activities, yet the healthcare system does not capture a reason for that pain,” said lead author Feinuo Sun, PhD, an Assistant Professor of Kinesiology at UTA. “That mismatch represents a real problem.”
Pain is one of the most difficult conditions to diagnose because of its subjective nature. What may be “severe” pain to one patient may be “minor” to someone else.
Given the well-known disparities in healthcare access in the United States, it’s not surprising that undiagnosed pain is more common in some groups than others.
Compared to white and native born Americans, people who are Black, Asian or foreign born are more likely to have undiagnosed pain, due to barriers in getting treatment and more limited healthcare resources. People without health insurance and those with poor mental health face similar obstacles in getting a diagnosis.
Undiagnosed pain is also more common among men and young or middle-aged adults. Researchers think that may be due to the fact that women and older adults are more likely to see a doctor and describe their symptoms in a more detailed way – making them more likely to get a diagnosis.
Geography also plays a role. Americans living in the West are more likely to have pain, and more likely to be without a medical diagnosis. A previous study by Sun found that people have less access to healthcare in rural areas, and have greater distances to travel for treatment.
Two findings were unexpected: People with higher incomes and those who are employed are more likely to have undiagnosed pain. That’s because wealthier people are more likely to self-manage minor pain with over-the-counter painkillers and alternative treatments. And people who have jobs may be reluctant to take time off to see a doctor or to use up their sick days.
Overall, about 30% of Americans who have some degree of pain do not have a corresponding medical diagnosis. The percentage of undiagnosed pain drops to 17.8% for those with moderate-to-severe pain.
It’s worth noting that the UTA study analyzed health data from 2016–2019, a period when pain was still classified as a symptom rather than a disease. That changed in 2022, when the World Health Organization updated its International Classification of Disease (ICD) coding system to recognize chronic pain as a disease for the first time.
The implementation of a new ICD-11 code may help narrow the diagnosis gap by bringing greater clinical attention to chronic pain, leading to quicker diagnosis and treatment.
“Because pain was not classified as a disease during the years we studied, many people likely had their pain overlooked or inadequately documented, even when it significantly affected their quality of life,” Sun said. “When pain goes undiagnosed, it is very likely to be undertreated or poorly managed.”
A recent study found that rates of chronic pain and disabling pain surged in the U.S.after the Covid pandemic, reaching the highest levels ever recorded. Today, about 60 million Americans have chronic pain, and 21 million have “high impact” pain severe enough to interfere with work and everyday life.
