San Antonio, TX
“To say that CFS changes your life is a gross understatement,” says Terry Westerman, sick for 19 years. “It’s invisible and nobody else can see what’s happening to you. It’s doubly hard to convince people something’s wrong. My family members knew something had affected me because I was not myself anymore, I wasn’t going 90 miles an hour!”
She got the flu in December 1993. One week later, she was diagnosed with walking pneumonia and says nothing was the same after that.
Westerman calls herself “one of the lucky ones,” because her regular family physician was relatively quick to offer the CFS diagnosis. “He said it could be pneumonia and I’d be fine in several months. I went back in two months, and I was not better. He said it could be mononucleosis and I’d be fine in six weeks. I went back in six weeks, and I was not better,” she recalls. “Then he said it could be two other things: a new virus called Epstein Barr, or this thing called ‘chronic fatigue syndrome.’ This was 1994; it was unheard of at this time, both the illness itself and a family doctor suggesting it.”
Westerman’s doctor told her bluntly that what she had was both chronic and incurable, which drove her online in a search for information about CFS. “The most important thing to me was to find out what this was, why I got it and what damage it was doing,” she says.
Eventually, she found the Association. “It was the only place I could really find anything. Becoming a member of the Association was huge, because I read the stories of other people with CFS at a time when I knew no one with this,” Westerman says. “It was like two opposing forces: it was reassuring to know that I was going through what other people were going through, to learn what others were facing and how they coped. I could identify and it helped me. I desperately needed information to have hope.
“But when I realized the challenges we were up against, with doctors not accepting our disease, funds being misappropriated and no research being done at all, I thought, ‘How am I ever going to get my life back when they can’t settle on a name, there’s no research, no treatment, certainly no cure.’ It was depressing; it took away my hope.”
Meanwhile, CFS took away Westerman’s ability to work at her church job, exercise at the gym seven days a week, socialize with friends, go to dinner and play golf with her husband, think, process information, stay focused. “CFS changed everything,” she says.
Westerman is convinced that research is the only thing that will return her life to her. “I’m 100 percent behind the Association’s research-focused strategy! The only way I can get my life back to what it once was is if there’s an effective treatment or a cure. The only way to get that is through research,” she says. “I have a background in science and I understand effective research. If research is not well-done, you won’t have agreement among scientists. If we don’t have research going on, there isn’t hope of a cure or treatment. I want all the money we can gather and all the advocacy to the agencies in Washington, D.C., to go after research from every angle we can. That’s why I started making donations – research is the only possibility of getting my life back.”
She likes the Association’s orderly approach to research, particularly Scientific Director Dr. Suzanne Vernon’s analysis and synthesis of various methods and focuses of CFS research. “We still don’t know if there’s a bacterial, viral or genetic cause of this disease. If we don’t have someone looking at all three, we’re missing out on looking at a significant number of people with one of those causes,” says Westerman. “It’s such a massive undertaking, but with The Catalyst Fund and a comprehensive plan, I hope Dr. Vernon will take all the research funding that’s coming her way and give it to the people who are doing research in specific areas so we can cover more bases. We need all the money we can get to conduct quality research. Please help us. Please give what you can afford to give because research is our only hope.”
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