Resident helps chronic disease patients cope
Published 7:59 pm Friday, September 15, 2017
There’s a two-part episode of “The Golden Girls,” in which Dorothy Zbornak goes to doctor after doctor, all telling her there’s nothing wrong. Maybe she’s crazy, but all Dorothy knows is she doesn’t feel like herself.
Widespread, chronic pain. Extreme, debilitating fatigue. The doctors have no idea what’s wrong.
This is not just a scene from TV in 1989. This is the reality for many patients today with fibromyalgia, myalgic encephalomyelitis, chronic fatigue syndrome and/or other similar diseases. It’s more common than one might think.
In a 2014 study, 1.9 percent (or 146 people) of about 6,300 respondents in North Carolina were diagnosed with ME or CFS, according to the N.C. State Center for Health Statistics.
Washington resident Colleen Steckel knows all too well how it feels to be in such a position. Diagnosed with ME in the early 1990s, Steckel has made it her mission to reach out to others and let them know they are not alone.
Reconciling what patients feel with what society thinks has been an uphill battle, and in many ways, it’s a battle still being fought, Steckel said.
“There is an incredible gap between what society thinks these diseases are and what the patients know these are. We have a serious lack of education about these diseases in the medical community,” she said. “I want to educate the wider community.”
Steckel said advocacy groups partly attribute this gap to a “systemic bias.” Although there is more knowledge now, doctors used to diagnose the symptoms of fibromyalgia and ME as multiple sclerosis — if a patient was diagnosed at all. MS is typically a female disease, and up until the mid-20th century, many of these women were dismissed as having anxiety or “hysterics,” Steckel explained.
“Unfortunately that prevailed, and in some places still prevails, as to why we go into a doctor’s office and … we do all the blood tests, all the ‘normal blood tests,’ and everything comes back normal,” she said. “They are literally not using the right tools to look at us.”
The situation has improved, but there is still a long way to go. That’s why Steckel places such an emphasis on education. Once patients and their families have a better understanding of what is happening to the body, that’s where Steckel’s local support group comes into play.
“On Facebook, I’ve collected a wide variety of resources for how to cope with the illness,” Steckel said. “The overarching idea behind my support group is ‘coping with the symptoms while waiting for a cure.’”
She said patients who are able to function normally 50 to 75 percent of the time could actually begin to worsen if their symptoms are not properly managed. Her support group also addresses the do’s and don’ts of the diseases.
“The coping with the symptoms part, it doesn’t matter where you live. It’s all the same family,” Steckel said. “It’s for all of those (diseases) because we’re just discussing the symptoms. You know, how do you cope with that symptom? What have you tried?”
In “The Golden Girls,” Dorothy Zbornak was diagnosed with CFS. Her words to one of the doctors may ring true for many:
“Dr. Budd, I came to you sick and scared, and you dismissed me. You didn’t have the answer, and instead of saying, ‘I’m sorry, I don’t know what’s wrong with you,’ you made me feel crazy, like I had made it all up. … Some day, Dr. Budd, you’re going to be on the other side of the table, and as angry as I am, and as angry as I always will be, I still wish you a better doctor than you were to me.”
Fibromyalgia, ME and CFS affect men and women across the United States, but Steckel wants people to know there is hope, and there are ways to improve quality of life.
For more information about Colleen Steckel’s support group, email her at email@example.com. For more information about fibromyalgia, call Vidant Rheumatology at 252-948-4990.