Living with pain is hard enough. But when it’s met with silence, disbelief, or dismissal, it becomes something far more devastating: isolating and dehumanizing.

This is the heartbreaking reality for millions of people across the country who live with chronic pain. For them, pain isn’t just invisible—it’s often disbelieved. That disbelief doesn’t just delay care. It erodes trust. It deepens suffering. And it leaves too many people feeling unseen.

To better understand the full scope of this crisis, the U.S. Pain Foundation conducted a national survey in 2025—and the findings are deeply concerning:

• 62% of respondents waited more than a year to receive a diagnosis.
• Nearly 30% waited over five years.
• More than 1 in 20 are still undiagnosed—caught in a system that often looks through them instead of at them.
• Almost 40% believe they have other undiagnosed conditions—even if they’ve already received a diagnosis.
  

These numbers are not just data points. They represent real lives—people told their pain was “all in their head,” passed from provider to provider without answers, and forced to mask their pain just to be believed. In our survey, they poignantly shared their experiences in their own words:

“It’s not all in my head. It’s real and it hurts. My pain is not something to be labeled, but fixed… Losing hope.”

This isn’t just a failure of communication. It’s a failure of compassion. It’s what happens when people with pain don’t conform to expectations—when pain doesn’t look like it “should,” or symptoms don’t fit neatly into diagnostic boxes.

The Echo of Doubt

Across thousands of responses, one pattern was unmistakable: Dismissal wasn’t a one-time experience—it echoed across years and providers. Familiar, heartbreaking phrases heard by respondents surfaced repeatedly: “You’re exaggerating.” “Just lose weight.” “You’re just depressed.” “It’s not that bad.”

“I hate that because society cannot see our boo boo, it doesn’t exist. I’m dismissed, treated as less than, not deserving of more.”

“I’m not making it up, and their dismissal of my pain makes it harder for me.”

This doubt isn’t applied evenly. It often targets those living at the intersection of systemic bias—for instance, those who are young, female, nonbinary, or navigating complex symptoms. According to the survey:

• People under 40, particularly in their 30s, were significantly more likely to experience diagnostic delays.
• Women faced longer delays than men. Nonbinary and gender-diverse individuals fared the worst, with nearly 40% waiting over five years and higher rates of remaining undiagnosed.
  

“Where can I find pain management providers who specialize in treating women instead of telling us that it’s anxiety and that we need to lose some weight.”

Race added another critical layer of disparity. Respondents who identified as Black, Hispanic, Indigenous, or multiracial reported longer delays and higher undiagnosed rates than white respondents—echoing structural inequities across health care. 

Diagnostic Divide

Our health care system is built to recognize what it can measure. Lab values. Imaging. Objective findings. But chronic pain rarely plays by those rules. And medical education often leaves providers under-equipped to validate complex, fluctuating symptoms. In fact, only 50% of health care providers felt adequately trained to treat pain, according to our health care provider survey—but 92% are interested in more training.

For patients at the margins, the stakes are even higher. Women are more likely to have their pain dismissed as anxiety. Black patients receive less pain treatment. LGBTQ+ individuals are more likely to be questioned or dismissed entirely.

“Access to chronic pain management treatment is greatly impacted by race, gender, and class. Some of us are not getting even the basic standard of care regarding our pain—and that’s not only unethical and unconscionable—it’s heartbreaking.”

“Endometriosis pain and scarring doesn’t end with hysterectomy… Women’s pain from procedures has been dismissed, untreated, and gaslit.”

Chronic pain touches every part of life: work, relationships, education, mental health. When diagnosis is delayed, people don’t just lose time—they lose opportunity, independence, and dignity.

“It took me 47 years to be diagnosed with EDS, most of which was spent being dismissed and gaslighted by doctors.”

“It took 2 years for me to get a diagnosis. By then it was too late. I was doomed to be in excruciating pain for the rest of my life.”

When Delay Becomes Harm

Diagnostic delay is not simply an inconvenience—it is a form of harm. Many people shared that they lost their jobs, relationships, and even belief in their own experiences—all because no one would listen.

“I experienced medical neglect and long delays in treatment despite severe pain and visible symptoms. This made me realize how many others go unheard or are misdiagnosed.”

“The odder our conditions, the harder it is to find help—and the stronger we must be to carry on with our shrinking lives. Give us just a bit of credit before dismissing us, please.”

These are not isolated stories. They are the norm.

Trapped in the Diagnostic Maze

In a system that equates visibility with validity, those living with pain are left on thin ice. Their conditions—many of which involve multiple bodily systems and overlap with other diagnoses—don’t show up clearly on scans. And so, they’re passed around, misdiagnosed, or told to “wait and see.”

“It’s difficult to know how to manage pain if you don’t know what’s causing it. Medical gaslighting and providers who don’t believe your pain because they can’t find the cause is an issue.”

For more than 5% of respondents, there’s still no name for what they’re experiencing. They remain undiagnosed—a statistic that speaks volumes about who gets care and who gets overlooked.

And even for those who do get diagnosed, the journey often ends not in triumph—but in exhaustion.

“During my  own journey I struggled for years to be heard and find answers. I often would be offered different medications and still have no idea what the diagnosis meant or get answers from my doctors.”

Pain Beyond the Physical

This isn’t about individual, “bad” doctors. This is about a system that consistently struggles to believe some patients more than others. It’s about a cultural gap between symptoms and credibility—a gap that leaves people fighting not just to be treated, but to be believed.

“We are stigmatized and treated like criminals. Often not believed by medical providers that our pain levels are high.”

“We do not wish to live like this and would rather not go to the ER, but sometimes people need help and do not want to be judged or treated like a drug seeker by those that are supposed to do no harm. Because of this stigma, we are less likely to go to the ER and more likely to die at home due to not seeking help due to discrimination.”

Pain, in these stories, becomes more than physical. It becomes social. It becomes political. It becomes something to prove—again and again.

“Sometimes those in chronic pain mask it well. Just because we’re not curled up and crying and get through every day so we don’t become a burden, doesn’t mean we don’t need help.”

A Call to Listen

This report makes one thing abundantly clear: People with pain are not invisible. They are being actively unseen. They’re doing everything right—showing up, asking questions, advocating—and still being met with dismissal.

They are not just tired from the pain. They’re tired of having to prove the pain is real.

And the longer we delay diagnosis and care, the more years we take from lives already burdened by crippling pain. We must act. We must listen. We must believe. We must unmask the complexity and devastation of pain. 

One critical step: improve provider education and diagnosis by mandating more training in chronic pain, implicit bias, and empathetic care—across all specialties. Because behind every chart, there is a person still waiting to be heard, believed, and equitably treated.

To learn more about the U.S. Pain Foundation’s Pain Awareness Month initiative, click here.