CFIDS Profile: Katie
I Can't Remember a Time When I
By Katie F.
Originally published in
Youth Allied By CFIDS, Winter 1996
Katie's sister, Laura, now 14, got mononucleosis in 1991 (after having a
pattern of bizarre symptoms for years), her family had no idea that it would
never go away. Laura was diagnosed with CFIDS in April 1992. Her mother learned
more about CFIDS and began to recognize a similar pattern of symptoms in her
other children. Her son, Rodney, now 20, became very sick in the summer of 1992
and was diagnosed with CFIDS a year later. The youngest child, Katie, has had a
pattern of symptoms since she was a toddler. She was misdiagnosed with Lyme
Disease in September 1992 and was re-diagnosed with CFIDS in September 1993. In
her own words, here is Katie's story. - Sharon W.
My name is Katie and I'm
nine years old. I
can't remember a time when I didn't have CFIDS. Because of CFIDS I have lots of
stomachaches, every day I have a headache and I'm always tired. Sometimes my
legs hurt too, and I get lots of stuffy noses. I like animals, playing video
games and playing outside when I feel good enough.
I wish I could go to school but I can't.
mom home-schools me and my sister, Laura. I want to be able to go more places
without it making me sicker. I wish I didn't walk into things so much. I get
bored a lot because I'm too tired to do anything.
I am a happy person but sometimes CFIDS
makes me very mad and very sad. Sometimes I just get sick of being sick. When
that happens I cry, and mom hugs me and makes me feel better.
When CFIDS upsets my sister Laura,
something cool. On the back of the cabinet door in the bathroom she wrote "THE
WALL OF PAIN" and when she gets mad or sad about something she writes it on the
door. Mom doesn't care that she writes on the door; she says it's good for Laura
to get her feelings out.
I wish people understood CFIDS better.
don't think CFIDS is a big deal; sometimes they don't even think I'm really
sick. Some good things have happened because of my CFIDS. I've met a lot of nice
people who are sick and understand what I'm going through, and that makes me