TO TABLE OF CONTENTS
Snapshots of CFIDS
SPECIAL SUPPLEMENT TO THE CFIDS CHRONICLE
Young PWC seeks to help
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
CFIDS-related symptoms since before she
began kindergarten. “I always thought this was how everyone felt.”
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
Now she is focused on her main career goal:
To become a pediatric immunologist, so that she can help children with
deal with the disease that changed her
life so drastically. “The field interests me because of my own battle with
,” she says. “I’ve seen how my doctor has
made a difference in my life and how he genuinely cares for his patients.”
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
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
“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
, 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
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
“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.”