When I pulled up outside Nancy Duray’s house in Lakewood, she was chatting outside with some of the neighborhood kids. She smiled and greeted me warmly – there was energy in the59-year-old’s voice, and as she climbed the stairs of her front porch to usher my inside, I thought to myself she sure doesn’t LOOK sick. Nancy tells me later that that’s what a lot of people say about her.
DURAY: I have neighbors who say “how can you be disabled when you walk your dog?” Well I can walk my dog, and then I rest for 3 hours.
Duray says she’s been battling the stigma as long as she has been battling the disease – for over 20 years now. She’s unable to work, and while she manages to walk her dog –says she is in pain 80% of the time, and that a family outing might leave her in bed for days, barely able to get up and go to the bathroom. Our interview she tells me, will take its toll on her tomorrow. Even now she says she feel’s terrible.
DURAY: My arms and legs feel like there’s a semi-truck parked on me. I feel so heavy all the time.
She tells me that she was once a happy, healthy, successful interior designer, and then one day in April of 1988 she got something that seemed like the flu.
DURAY: My joints started hurting, I started forgetting things, fever, sore throat. I would sleep for days and then sometimes I couldn’t sleep at all.
But Duray says she knew almost immediately it was more than the flu. Doctors initially suspected Lupus or Rheumatoid Arthritis – but despite all their treatments, she kept getting worse instead of better. She thought she was dying.
DURAY: It was such a big change. I worked 60 hours a week I would have like 20 clients and I would know everything without even opening up their files about their jobs and then all of the sudden I couldn’t remember my dog’s name
Eventually Duray was diagnosed with Chronic Fatigue Syndrome. And she was one of the lucky ones. The CDC estimates that only 20 percent of the 4 million Americans with Chronic fatigue ever get diagnosed – and 20 years ago the odds were worse. Back then chronic fatigue was just beginning to be noticed by the medical community – and many medical professionals didn’t take it seriously explains Nosson Goldfarb, who runs the Fibromyalgia and Fatigue Center in Middleburg Heights.
GOLDFARB: For many, many years chronic fatigue was not really accepted as a real diagnosis. The vast majority of the medical community really felt that this was depression, it was psychosomatic – those types of things. The same stigma that was associated with psychologic disorders, which we now know have a real biologic basis, is the same thing has happened with chronic fatigue.
Part of the problem is that there’s still no definitive blood test for Chronic Fatigue. The cause is unknown, and so physicians are left to treat symptoms like joint pain, headaches, or sleep disturbances individually. Viruses, genetics, trauma or some combination are all thought to play a role – but the full biology of the disease remains fuzzy at best. Goldfarb says he believes chronic fatigue is triggered by an overload of physiological stressors – things like infection, toxins, poor nutrition or hormonal imbalances- that ultimately lead to a breakdown in the body’s energy production system. He says the disease is gaining acceptance and hopes that will ultimately lead to answers.
GOLDFARB: The CDC in 2006 gave chronic fatigue an official stamp of approval and that tide is changing.
But not everyone thinks the tide is changing quickly enough. Even though chronic fatigue is more prevalent than multiple sclerosis or ovarian cancer – the research funding pales in comparison. In 2007, the National Institute of Health spent 98 million dollars on multiple sclerosis– compared to just 4 million on chronic fatigue. Gretchen Cuda, 90.3