The Hidden Epidemic of Chronic Pain

And Why So Many of Us Are Missing From the Data

In 2023, it was reported that 24.3% of Americans live with chronic pain. I believe that number is wildly underreported. How do I know? Because I’m one of the people who spent decades in pain without anyone in the medical system taking me seriously.

I’m 37 now, but my story starts long before I had the words to describe what was happening in my body. When I was a year old, my mom would find me suddenly refusing to walk—not because I’d fallen or gotten hurt, but because something inside me simply stopped working. As an adult, I suspect the same thing was happening then that happens now: a sudden snap in my ankle, a bolt of pain, and the inability to bear weight for days.

I’ve always had hypermobile joints—splits without stretching, extreme flexibility, ligaments that behave more like loose rubber bands than supportive structures. Eventually a doctor explained that my ligaments are so lax they sometimes slip over bony prominences in my ankle, causing sharp pain, swelling, and a recovery period of three to five days. And it never happens during workouts. It happens while walking. Going upstairs. Bending down to tie my shoes. Just existing.

Despite this pattern stretching back to early childhood, not one doctor ever suggested a connective tissue disorder—like Ehlers‑Danlos Syndrome—until I brought it up as an adult. Not because I lacked symptoms, but because our healthcare system is deeply biased in ways that harm women every single day.

The Cost of Not Being Believed

Women in America are 50% more likely to die from cancer than men. There are many reasons for this, but one of the most devastating is simple: women are not believed in the exam room. Symptoms that would trigger immediate imaging for a man are often dismissed in women as anxiety, hypochondria, or “stress.” That delay in diagnosis gives cancer time to spread—and makes it far more deadly.

And this isn’t an isolated issue. It’s a pattern.

I lived with an undiagnosed sleep disorder for 15 years. I went to doctor after doctor trying to understand why I was exhausted no matter how much I slept—nine hours on school nights, sixteen on weekends, and still barely functioning. No one thought to send me to a sleep specialist.

The first solution offered? Prozac. Because apparently the only explanation for a teenage girl’s symptoms is depression—never mind that no testing was done beyond self‑reported fatigue and seizure symptoms.

When that didn’t work, I was sent to an infectious disease specialist. After normal bloodwork, he told my mother I “just needed 12 hours of sleep a night.” I was a middle schooler who left home at 6 a.m. and often didn’t return until after 6 p.m. because of activities. Twelve hours wasn’t physically possible.

Then came the neurologists. The first one told my mother I was “doing it for attention.” It being the absence seizures that had started when I was twelve. I was blacking out for a few seconds every hour. I once collapsed in a park bathroom and a nail ripped out a handful of my hair. I had a seizure in the middle of a choir audition in front of my entire class. Afterward, confused and embarrassed, I cried—only to be told I was faking by multiple doctors, whom were all male doctors.

What was I supposed to say? “I think I’m having seizures, but my doctor thinks I’m performing for attention.”

Eventually I found a neurologist who understood that absence seizures don’t always show up on scans. He started me on medication, and the seizures stopped—except when I forgot a dose. Imagine that. This isn’t the full story of my chronic pain but we will pause here for now.

The People Who “Don’t Look Sick”

I share this because people with chronic conditions don’t always look frail or visibly ill. Sometimes we look completely “normal,” and that invisibility becomes its own barrier to care. When you don’t fit the stereotype of sickness, you’re more likely to be dismissed, doubted, or told your symptoms are psychological.

And when you grow up in a religious environment that teaches you to ignore your body, suppress your pain, and blame yourself for suffering, the damage compounds. I’ll be writing more about that in future posts.

If you want to follow the rest of my story—how the church shaped my understanding of illness, how I learned to advocate for myself, and how many others are still being overlooked—make sure to hit subscribe.

Your story might not look like mine, but if you’ve ever been dismissed, doubted, or ignored in a doctor’s office, you’re not alone. And you deserve better.

Cancer Incidence Rate for Women Under 50 Rises Above Men’s | American Cancer Society

Products - Data Briefs - Number 518 - November 2024