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Life, in pain: A six-part series on chronic pain

In this six-part series, Jenni Prokopy of ChronicBabe.com joins Well Community in examining the six most common chronic pain conditions affecting women — chronic fatigue syndrome, endometriosis, fibromyalgia, vulvodynia, TMJ dysfunction and interstitial cystitis. 

Why this series? Why now?

These six conditions affect 50 million women in the U.S. and add as much as $80 billion in costs to taxpayers, according to a 2011 report by the Chronic Pain Research Alliance. As a whole, chronic pain affects more Americans than the combined total of those who live with cancer, heart disease and diabetes — yet very little research is dedicated to finding cures or effective treatment options, and the conditions have remained misunderstood and stigmatized for years.

A new national push aims to change that. The Institutes of Medicine published a report in July calling for a “cultural transformation in how the nation understands and approaches pain management and prevention.” The idea that “successful treatment, management, and prevention of pain requires an integrated approach that responds to all the factors that influence pain” is one the committee says should be promoted throughout health care.

We wanted to examine how chronic pain is being viewed and treated in the Chicago area, and where it’s headed next.

Personal perspectives from series writer Jenni Prokopy

“Virtually everyone I’ve worked with on a chronic pain problem, at some point, begins to wonder if they’re strange or odd or an unusual case,” says Dr. Steven Kvaal, clinical psychologist at Swedish Covenant Hospital and associate professor at Roosevelt University.

His observation is consistent with my own experience; diagnosed in 1997 with fibromyalgia, most doctors I talked to dismissed the condition as a “wastebasket” disease. I felt disrespected and abandoned by a health care system ill-equipped to accommodate my hard-to-wrangle illness. Nearly all the women I interviewed for this series have experienced the same.

Today, fibromyalgia is recognized as a legitimate chronic pain condition, my symptoms are well-managed, and my health care team is stellar — but that evolved over more than a decade. No woman should have to work for so long to build an effective treatment team (or get a diagnosis, for that matter).

Developing fibromyalgia turned me into an accidental activist, and my passion for helping women like me drives my desire to create resources like this series. I interviewed 19 experts — including patients, the ultimate experts on chronic pain — to shine a light on each of these six conditions. While there is no cure in sight right now for any of them, there are many, many ways to treat and minimize chronic pain.

Throughout the research process, one comment I heard over and over was, “we treat the whole patient.” While many health care providers focus on one area of a patient’s life, the team at Swedish Covenant Hospital steps back and looks at the big picture, approaching patients in a holistic way. Doctors are talking to patients about their relationships, workplace issues and spiritual practices. Patients are trying multiple treatments to tackle their symptoms from every angle. Everyone is keeping an open mind about new possibilities. And compassion abounds.

Even if you don’t have one of the six chronic conditions we’re profiling, I hope you’ll stick with us through this series. You may be surprised to learn what the hospital is doing to help women overcome the limitations they’ve experienced.

Part 1 – Chronic Fatigue Syndrome 

Part 2 – Endometriosis

Part 3 – Fibromyalgia

Part 4 – TMJ dysfunction 

Part 5 – Vulvodynia

Part 6 – Interstitial cystitis

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