RETURN TO TABLE OF CONTENTS
Winter 2003

Snapshots of CFIDS
A SPECIAL SUPPLEMENT TO THE CFIDS CHRONICLE

Young PWC seeks to help others
Lessons in perseverance
By Leah Moseley

Most people with CFIDS look back wistfully to better days, when they could walk for hours at a time, work a full shift or catch a late-night movie with friends.

Beth Warren never had one of those days. “I don’t really know what it feels like to be normal,” says Beth, who has suffered from CFIDS-related symptoms since before she began kindergarten. “I always thought this was how everyone felt.”

The 20-year-old New Jersey native has struggled all her life to overcome her illness. Despite being homebound for more than five years, Beth managed to graduate from high school with her class and is currently enrolled in college.

Now she is focused on her main career goal: To become a pediatric immunologist, so that she can help children with CFIDS deal with the disease that changed her life so drastically. “The field interests me because of my own battle with CFIDS ,” she says. “I’ve seen how my doctor has made a difference in my life and how he genuinely cares for his patients.”

Pediatric CFIDS cases occur less often than adult cases. But the impact can be even more devastating, as the illness deprives children of the social and academic structure they need to thrive.

Beth and her pediatrician, Dr. James Oleske, believe that she first started showing symptoms at the age of four. “I’ve felt some degree of fatigue as far back as I can remember and always had the symptoms of CFIDS including muscle and joint pain, swollen lymph nodes and sore throat,” she says.

When she was 13, Beth underwent surgery that triggered symptoms so bad she became homebound. This required home tutoring — and sparked a five-year-long battle with her school district in Pennington , N.J.  

Even though she had received a formal CFIDS diagnosis after the surgery, Beth says she and her family had a difficult time convincing school officials to provide the necessary tutors and support.

“My school district didn’t believe I was really sick and questioned the legitimacy of the illness,” she says. “They didn’t realize that when they saw me at a town fair for a couple of hours, that was the first time I’d been out of bed in a month and would spend a week in bed afterwards recovering from it.”

Beth’s family eventually hired an attorney to ensure that she received a proper education. While this helped greatly, Beth says it couldn’t help her deal with the isolation that home-tutoring created. “Nobody from my school district really kept in touch or visited,” Beth says. Her teachers at Hopewell Valley Central High School discouraged her from taking advanced placement classes, even though she’d always been an “A” student.

Though she rarely saw her high school classmates, it was important to Beth to graduate with them. She spent summers, weekends and holidays catching up. “It [graduating] was the one thing that I was holding on to that I felt I had to do,” she says. “At least I could get this one thing done the way I was supposed to.”

Ironically, it was at her graduation ceremony in 2000 that Beth first stepped foot in her high school as a student. She received an award that day and all of her classmates cheered for her.

“I was really touched. I didn’t know they would remember me or react that way,” she says.

These days Beth attends The College of New Jersey in Ewing, N.J. , majoring in psychology. She says she worries about completing college and going on to medical school. “Even though

I managed to graduate high school on time, I’m probably going to need extra time to finish college and medical school,” she says.

She often thinks about what her life would be like without CFIDS. What might she might have chosen as a career? How much might she have accomplished academically? What direction might her life have taken?

Still, Beth says it’s important for her to remain positive. “It’s so easy to get caught up in this illness and have a negative outlook,” she says. But she says the illness has taught her to be positive by recognizing all the benefits she’s gained from being sick.

“This illness has helped me to be more compassionate and understanding and I’ve learned not to judge others based on their appearance,” she says.

Beth has tried to share the message about CFIDS whenever possible. She appeared in the CFIDS public service announcement (PSA) released last year, which also featured former U.S. Surgeon General Dr. David Satcher. “I really enjoyed that,” she says. “The PSA gives a good snapshot of what the disease is really like. I hope it made a difference in the public awareness of CFIDS .”

No matter where Beth’s life takes her, she knows that she’ll persevere. No matter what, she’ll remain positive and continue working towards her goals — at her own pace.

“I would have never imagined all the pain that I’ve gone through,” she says. “But I’ve learned that I’m a lot stronger than I would have given myself credit for.”