CFIDS Profile: Katie Fuller

I Can't Remember a Time When I Didn't Have CFIDS

By Katie Fuller, age nine, of Marengo, OH

Originally published in Youth Allied By CFIDS, Winter 1996

When Katie Fuller'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 Walk

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. My 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, she does 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. They 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 feel better.