Pain Unknown: Living With Fibromyalgia

photo of neurons

Intro from Jay Allison: We have a series here at Transom we call “Short Lists” where you hear a list of things and then find out how they’re connected. Hairpieces, Coyotes, Village Portraits, Grind Core Punk, Personal Tragedy, Songwriting, Fibromyalgia, Singing at Funerals, Roller Derby… okay, that’s a list of the stories produced by the Transom Story Workshop this fall. The students came here from all over the country (and two from Canada this time), somehow discovered these stories hidden away on Cape Cod, and then, using the skills they just learned, turned them into radio. It’s quite a trick—to go from never having done it, to doing it well. I’m amazed every time.

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Listen to “Pain Unknown”

About “Pain Unknown: Living With Fibromyalgia”

I didn’t quite realize going into this piece how high stakes it would feel. But right away, several people with fibromyalgia told me how many people have committed suicide when their families have called them lazy or crazy and told them to get over themselves. Fibromyalgia has dramatically changed many people’s lives.

When I talked with folks in the medical world, the tension increased. Some doctors were very supportive. But others were not. One doctor even said, “Fibromyalgia is a euphemism for pain in the ass.”

On top of that, neurobiology research – absent for so long – is moving forward at a rapid rate with lots of different experiments and hypotheses. What’s considered “true” about fibromyalgia in the medical world is in flux and opinions are far from unified.

So I struggled. How should I represent all the different truths? And which perspectives are truths that deserve representation, anyway? And how can I make it compelling, when everything’s complicated to explain, and there aren’t many sounds or visuals to show the pain and general confusion?

I also got stuck on big questions: What’s the difference between body and mind, neuroscience and psychiatry, when everything happens in the brain anyway? And why does society seem so threatened by things we can’t prove?

With Rob’s help, I pulled myself back to earth. Back to the story. To let the characters show their own perspectives, their own experiences. I don’t need to impose my questions, and I don’t need to announce what’s true. I just need to make sure the story gets told.

Then, as the production wrapped up, I worried that I’d been so preoccupied with portraying everything fairly that I’d sacrificed scene-setting and glamor. I’m still not sure about that, and I have ideas for how I’d produce the piece differently if I had another go. But all in all, I’m okay that this is not a glamorous story. Nothing big happens, and there are no overt critiques of society. Instead, it’s a story of slow mystery, and, hopefully, it’s a story that rings true.

Anna’s Sonic ID

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I met Nicholas on the 7am ferry to Martha’s Vineyard. Like a ton of people, he commutes to the island every morning for construction work.

I talked to him for 45 minutes before I got up the nerve to ask to record. I liked the way he told stories, but I was afraid asking to record would make him feel used. It turned out he got even more animated when I pulled out my gear. This was a lesson I learned hundreds of times at Transom.

Anna Stitt

About
Anna Stitt

Anna is an independent radio producer living in northwest Arkansas. She comes to media work with experience in sociology, history, counseling, and rural community organizing. She's excited about audio storytelling as a tool for looking at the hardest questions, and for connecting in ways we wouldn't otherwise. You can listen to more of Anna's work at PRX and contact her at stittam[at]gmail.com.

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  • S. Hydal

    1.28.15

    Reply

    Great piece, it’s good to see voices of individuals living with an invisible (and sidelined) disability like Fibromyalgia featured in a radio piece: thanks for sharing. How did you identify and connect with the participants who live with Fibromyalgia?

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