By Jenni Grover Prokopy
Founder—ChronicBabe.com , Illinois State Pain Ambassador—U.S. Pain Foundation
I didn’t plan to become an outspoken advocate for people with chronic pain and illness. It wasn’t on the list of careers I dreamed of as a kid. I wanted to be a rabble-rouser and a journalist, sure—I’ve long strived to achieve social justice for all. But helping sick folk was not a particular concern.
Yet, today I find myself in the hard-won position of voicing the concerns, needs and rights of pain patients across the country. It’s a daily task, whether I’m explaining to incredulous bus passengers that I am, in fact, in need of the disabled seat today—or standing on stage in front of hundreds of healthcare practitioners, explaining why patients deserve more comprehensive, compassionate care.
A rocky road to advocacy
After being diagnosed with fibromyalgia in 1997 at the age of 25, I freaked out—there’s no better way to describe my reaction. I had been a young, athletic go-getter who frequented nightclubs and loved adventure. Now, I felt trapped in a body that was broken—a betrayal.
It took me years of fighting reality, of working through anger, resentment and depression about the pain and fatigue that had invaded, to reach détente with my body. It took equally long to assemble a healthcare team and a treatment plan that brought some relief. (Oh, right—I should mention I developed a handful of other conditions, too, which made it a real party!)
Eventually that détente evolved into acceptance, and I regrouped. I could still dance—just, you know, not on tables at nightclubs, but in my living room, taking lots of breaks. I could still have a thriving career, just not, well, in an office with lots of rules; instead, I formed my own company so I could build my own schedule, dress code (cute PJs!) and awesome clientele. And it worked! It wasn’t my dream scenario, but it was better than lying in bed, sobbing endlessly about the unfairness of life.
Speaking up, online
That’s when it hit me: I needed to create the very resource I had wished for when I was 25. A website with attitude, one that could help people like me with practical advice and inspiration for crafting incredible lives despite pain and illness. ChronicBabe.com was born in 2005, and has thrived ever since.
Through ChronicBabe, I’ve learned that people in pain come in all different models: young and old, wealthy and poor, straight and gay, black and white and every shade on the spectrum. Pain does not discriminate. And we each have our own unique background that shapes how we cope with pain—and a wide variance in the resources to which we have access.
My mission is to be an equalizer. No matter who you are or where you come from, I want to help you learn to love life, even if you’re in pain. I know it’s possible because I’ve done it; I know it’s not easy, and that each of our experiences is unique. That’s why I particularly love working with U.S. Pain Foundation; it’s an organization that’s diverse and feisty, and empowers so many people. I’m proud to call myself a pain warrior.
Advocacy in action
It’s an honor to join the team here at National Pain Report; in the coming months, I’ll bring you stories of fellow pain patients, perspectives from caregivers, news from healthcare practitioners, and tons of practical advice on how to be your own best advocate.
I’ll also be reporting from the frontlines of one of our fiercest battles: medication access. After almost a decade of success on a medication for fibromyalgia, my new insurance company is forcing me through step therapy—a process through which I must #failfirst on another medication (or three) before they’ll cover the original medication my doctor prescribed—the only medication that has ever worked for me.
As a result, I’m experiencing symptoms that once again limit my ability to work, to socialize, to exercise, to be—in a word—me. And it’s got me feeling my rabble-rousing roots, so watch this space for strong opinions, practical advice and stories of advocacy in action.
- Want to flex your advocacy muscles, or learn more about being a pain warrior? The U.S. Pain Foundation’s got you covered.
- Want to understand pain policy in your state and get involved in local advocacy efforts? Check out the State Pain Policy Advocacy Network.
Jenni Grover Prokopy founded ChronicBabe.com in 2005 and has been a boisterous advocate for people with chronic pain and illness ever since. A professional speaker and writer with more than 25 years of experience, Jenni believes all people have a story worth telling. She lives in Chicago with her boyfriend, Joe, and enjoys gardening, quilting and five-minute dance parties in her living room.