name is Kelly and I'm 19 years old (at least that's how old I was in 2001, when I wrote this story of mine. I've been sick since I was a
little baby, but until a few years ago, I didn't know what in the world
was causing me to feel so awful. Here's what it was like. Throughout
my childhood, I caught one infection after another. It seemed like I always
had miserable sore throats, muscle pain, exhaustion, headaches...and the
list is even longer than that.
Needless to say, I missed a lot of school, but somehow I managed to keep up with my classmates. School was hard, as I couldn't always participate in gym or play games during recess. I went to more doctors than you could count, and they told my mother and me different things each time.
I had asthma among other things, and had to take medication before lunch every day. So did another kid in my class...at least we always went together. Even though the puzzle of my symptoms wasn't yet solved, the asthma provided an explanation to everyone about why I wasn't like my classmates. I have mostly outgrown the asthma now, but at the time it was my label.
My illness has affected my memory, and I don't have many memories of being a kid. I mean, I remember some important things, but some parts of my past are like blank pages. I do remember going to the doctor a lot, though, and being in a lot of pain. Now that's something I wish I had forgotten. There were times when I would lie on the couch, my shoulders and collar bone area hurting so badly that I wanted to scream.
It got worse when I was around thirteen. I was missing more school, and I had a headache that just never went away. I still have it as I type this story. I had even more symptoms, too; dizzy spells and blackouts that I've sinced learned were mini seizures. I had such sore spots all over my body that if someone poked me in the back, I'd scream in pain.
My family told me I complained too much. My friends called me a wimp and a baby. One doctor said I was depressed. Another was convinced that I brushed my hair too much, so much, he thought, that it caused the blackouts and headache. What did he know? I couldn't even brush my hair some days because the pain was so bad.
When I was fourteen, I was incredibly depressed and sick of feeling sick. No one really believed me anymore because I complained so much. I was at my wits end, so I swallowed a handful of painkillers. Luckily, I decided that no matter how poorly I felt, I couldn't imagine not being alive. So I called 911 myself. After that, I was in counseling for almost a year...now everyone (but me) was convinced that my illness was only in my head. When I would complain of pain, my mother would ask me if I needed an extra counseling session. See what I mean?
Thank goodness for my sister's doctor. She had been seeing her for arthritis, a problem that she's had since she was little. When I went into her office, she reviewed my blood test results. She pressed on some tender points on my chest and back, and asked about my fatigue. Then she sat back and told me I had something called fibromyalgia. Later I learned that I also have a disease called chronic fatigue immune dysfunction syndrome (CFIDS).
A name, a name, my illness had a name! It wasn't all in my head! But the name sounded so... ugly...I was ashamed. Today I can't believe I felt like this, but I was embarrassed to tell anyone what I had. Because my mother didn't feel that way, everyone quickly knew.
I was in high school, and though I was trying a lot of different medicines to treat the symptoms, nothing worked for very long. These diseases, at least for right now, have no cure, so it was very difficult. CFIDS causes something that I call a brain fog. I have one quite often, and when I'm "foggy", I mix up words, have periods of dyslexia, can't remember the name of an item or a word, spell funny, can't work with numbers, can't concentrate at all. Get the picture?
I sure didn't understand what was going on, and most of my teachers didn't, either. They just thought I was being lazy. Several of them seemed to dislike me for being absent so much, and couldn't understand why I needed to go home to sleep. I have to say that a few were great, though. They really helped me out, never accusing me of being lazy, always encouraging me to do my best. They accepted me for who I was.
My friends on the other hand...well, even my best friend never completely understood my illness. It was hard to tell people, since I looked fine. No wonder they didn't believe it. Some would say, "Oh, you're tired a lot, I have that too." I wish I had been able to explain to them what it was really like. Worlds away from being "tired a lot".
Now I'm in college. I have a few close friends, but none who understand. I can't go party, because even if I wanted to drink, alcohol could kill me. I don't have the energy to go shopping, or spend an evening dancing, or a day working on a college sponsored service project. So it's a struggle, but at least I found a solution in theatre. I'm not sure what I'd do if I hadn't joined the theatre club. It helps me to be OK, sort of....
I used to be angry about having this illness, but I don't know any other life. I can't imagine what life would be like for me in a healthy body. To have the energy to play a game of soccer or run a mile. I know who I am, though, and I like myself. I know that I can do important things in life, nothing more important than helping a child. I've dedicated my life to children through a program of Child Life Therapy in college. I hope I can be there for those children who, like me, needed someone; I know what it's like to not have that.
The Fibromyalgia Network
Joan Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Lehman Colllege, CUNY
Bronx, New York 10468
Last updated: November 14, 2004