My Explanation of CFIDS to Young People

by Jaime Wellman
written December 1996

Chronic Fatigue Syndrome, or CFS, is something that is not easy to understand. I am 16 years old and have the illness, and I myself can't fully understand what it is. What I can understand is how my life has been affected by it.

As most kids in high school/elementary school do, you think that in your "world" things are always going to be good, and that things like "illnesses" and "diseases" (and we're not talking about the common cold), will never affect you. I thought the same thing. I got "sick" at the beginning of what should have been my sophomore year in high school, and I had no idea what was happening to me. I was extremely fatigued, didn't feel well, yet there was more; I couldn't concentrate in school, I couldn't pay attention while having a simple conversation with my new friends, and I just didn't seem "all there". This was odd, because prior to this, I was always sharp and always understood things right away. Now it took me an hour to do what normally took me 5 minutes, and even then I still didn't understand what I was doing.

I was later diagnosed with CFS, and I thought that was the end of all my problems, but I was wrong. Chronic Fatigue and Immune Dysfunction Syndrome, as it sometimes also called, is not one of those diseases where once you find out what you have it, you are then automatically going to be told by the doctor what to do to make yourself better. Little is known about CFS, even by the doctors themselves.

With CFS, you experience a "change". You can't function like you normally would, not because you are just plain tired, even though that is another big part, but there are other reasons. It is a struggle for me to get out of bed in the morning, but not because I am "tired" but because I am EXHAUSTED, my body just will not do as I tell it. My mind says one thing, my body does another, its almost as thought the connect from my mind to my body is not communicating right. This is the same thing when I go to do other things such as homework, only with homework, its my memory and my eyes that are battling each other; I read the words with my eyes, but the connection from my eyes to my memory isn't working the way it should, leaving me confused on what I had just read. Here is an example that works well that I remember my father using once:

Say you are reading the newspaper and an article says:

"The uniformed officer said that the car was found and the person that stole it has now been caught."

You would read the part "the uniformed officer" as meaning the police officer that was wearing what all police officers wear, or their uniform, but I would read it differently. To me, "the uniformed officer" would read "the uninformed office": the officer that was NOT informed, or didn't know what was going on. There is a big difference there, and although it is only one overlooked letter, I sit there and wonder why this officer that didn't have the information was the one telling about the car instead of thinking maybe I read it wrong. It sounds silly, but imagine if your mind switched things like that on you all the time. This is hard to deal with, and its even more so when you can't control or even understand why it happens.

Another way to get and idea of how a person with CFS feels is to imagine you had stay up for 24 hours and do homework the whole time. No breaks, no time given to rest, just straight homework for 24 hours. That would, obviously, not be pleasant, but on top of that, there is the tiredness that you would feel and your brain would feel like mush. You would NOT understand what you were reading after about the 10th hour and would not be remembering anything for the next 14 hours still. That is how it is for someone with CFS, a struggle to keep information clear, and to remember the information.

Its extremely hard to try and tell someone in a simple conversation how it feels to be a person with CFIDS, even if you live with them and they see you live with it everyday. Its even harder to try and tell someone that you do not see everyday, such as our friends or other relatives. Even if I had all the time in the world to sit down with my mom and tell her exactly what it was like to have this, and how I feel, she would still not totally understand - there is no way she could because she does not have the illness. Its scary when you can't put into words what you feel so you can make it clear for everyone else, its even scarier when you can't put it into words to tell yourself what its like. Knowing what its like to have CFIDS is something you just know, and know all too well, but don't have the reasoning for.

I have CFS, but am a younger person with the illness, I do not have people depend on me. However, I would not go so far as to say I am lucky to get the illness as a child rather then an adult, because now, at this moment in time, my childhood is disappearing, and I am watching it. My childhood is not something that I will ever get back either. An adult has gotten past the time when they were a kid, through the main part of the learning process, and has already become an adult. I on the other hand am entering the adult world, but somewhat backwards. I, as a child, am dependent on someone else and have no idea what it would be like if the person I was dependent on was in the state that I am, sick. It would be hard to understand, and it would be even more so if I couldn't understand what it was that this illness was about, and that is only normal to feel.

Chronic Fatigue Syndrome is not an illness that ranks up there with AIDS or Cancer, but the condition of CFS is just as serious and can be scary in it's own way. Its exhausting on the body, and even more so on the mind. CFS is an illness that strikes people of all ages, race, and sex, and nothing can be done to prevent it. After someone finds out that CFS is the culprit behind their fatigue, hard time focusing on what their loved ones are saying, and lack of ability to remember little things, then is when the people around them try and figure understand why this happens. I have no answer as to why it happens, and neither does anyone else, even though we wish we had. What we do know is that the number one thing that helps CFS is support. Support isn't the cure, but it is a necessity for anyone with this illness, or any illness. Even though that question of "why" can't be answered, that doesn't mean its time to lose hope.