CFS as a Teen

My name is Erin, and I was diagnosed with CFS one week before my 16th birthday in 1992. I, as with most PWCs, had been shuffled from one doctor to another -- and hearing words like lupus, meningitis, and leukemia when you are only 15 years old is not fun. When I was finally diagnosed, after being sick for eight months and missing my entire 10th grade year, I was thrust into a world I had never known exsisted beyond jokes about "the yuppie flu." Suddenly I was hearing, Chronic Fatigue Syndrome, Chronic Epstein-Barr Virus, myalgic encephalomyelitis and I was scared.

The hardest thing I have had to overcome was realizing that teenagers are cruel and that someone who is your friend one minute you won't hear from the next. I was a cheerleader, in student council, in band, in chorus.... I did it all. Then suddenly I became ill and all of that was gone. I never once received a get well note, card, balloon, flowers NOTHING from anyone that I was associated with in high school (including the teachers that sponsored the activities that I was involved in). I became cynical at quite a young age.

I have moved on although I suffer from the lingering effects -- feeling sleepy constantly or not sleeping at all, getting a "24 hour bug" that lasts for two weeks-- but I decided the day I turned 16 that I refused to let this be the end of me. It is when you feel that you have no where else to turn that you look into yourself and know that you are all you have to rely on when in comes to CFS. I am now 21 years old and happily married, to a man who is understanding and doesn't think I am out of my mind when I am fine one night and sick the next morning.

I must say that Chronic Fatigue Syndrome is a pathetically inadequate term for the illness that takes over your body. The name alone does little to convey the agony of this disease and I think it is a shame that an illness -- while not life threatening-- that CAN ruin your life should be given a name that gives it a almost laughable sound. I just want people who are actively sick with CFS to know that there is a support group here for you.... we may be a silent majority, but we can move mountains towards a cure if we work together.