Navigating the Long Road to Chronic Pain Diagnosis (Sjogren's Syndrome)
ABC World News with Diane Sawyer
November 22, 2011
By Jessica Wolfe
Suffering for over six years with widespread, unidentifiable pain and fatigue is a test of patience. For me, the answer came years after seeing dozens of doctors shrug their shoulders at my condition or say I was in excellent health since I looked well.
After enduring endless exams, rounds of blood drawing, body and brain scans, all for no diagnosis at all, I was determined to get answers somewhere else and that's what landed me mid-country. I finally found my diagnosis in the Midwest, thousands of miles away from my home in Massachusetts.
This specialist asked me to describe everything of concern. Then he examined me and began to write his note. Every few sentences, he stopped, turned the computer screen in our direction, and asked me and my husband whether he had captured my problem accurately. We were amazed since no other specialist had ever double checked with us before. No other doctor outright explained my care as a team effort.
And then, a week later, the diagnosis: Sjogren's syndrome -- an often overlooked but serious autoimmune disorder.
Nearly 4 million Americans suffer from Sjogren's, and 90 percent of whom are women. As I looked through the symptoms for Sjogren's, I found myself identifying with most characteristics I saw on the list – symptoms like widespread muscle soreness, joint pain, brain fog that was so extreme I had trouble sorting through the mail. I also felt fatigue so extreme that I felt like I got hit by a truck.
More importantly, my pain had a name. And a name meant I would finally get the right treatments.
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Jessica Wolfe, MPH, PhD, has been an entrepreneur, behavioral researcher, and executive in healthcare, health sciences, and public health for over 30 years.
Sjogren's Syndrome Foundation