VOICE! Spring '97:
By Heather Frese & Nichole Foster
Originally published in Youth Allied By
CFIDS, Spring 1997
Anger and frustration can play a big part in the CFIDS
experience; itís enough to have this disease without being doubted and
disbelieved on top of it all. I think itís doubly hard for young persons with
CFIDS (YPWCs), which is why Iím so grateful we have this newsletter and support
system, where kids can vent, work, learn and laugh together. My friend Allie
Hunter always knew that friends and laughter were the best cure, which brings me
to the Voice definition of the day, found in one of Allieís
You? phrase. This
is the question we wish people would ask us instead of "How are you?" since
responding to that means saying "Not great" or "Still sick." If instead we were
asked "How arenít you?" then we could say, "Great!" "Cool!" and "Most
The Voice Lettitorial: I
By Nichole Foster
I always thought I KNEW where my life
headed. I felt that a part of my life was one-up from a lot of kids, because I
KNEW what I wanted, and was determined to achieve.
I was determined despite some of my
family not believing in me. Laughing at the fact that I wanted to be a teacher.
Telling me that I could never do that, if I was sick all the time now. Yet they
never even believed I was sick! So they werenít supporting me at all. They
werenít backing my decisions, and they werenít helping me through my
I wanted so badly to one day be able
to them ó"See, I told you I could do this. I knew I could."
But then my illnesses became worse
symptoms a little more severe, sick even more frequently than before, and
lasting longer. I didnít know what was wrong. No one knew. I had test after test
that showed nothing.
Part of me almost wanted something
to be wrong. Mainly to be able to say "See, I told you." (Thereís that phrase
again. I think that if theyíd listen to me and believe me in the first place, I
wouldnít feel the need to say this.) I also just wanted to KNOW something. I
think that Iím used to knowing things... it frustrates me when I donít. So, when
I was told that I have chronic fatigue syndrome, I was somewhat relieved. At
that time though, I didnít realize how so little is known about this
disease. Something more I donít KNOW.
Now, Iím still sick all the time. No
knows what can be done, no one knows how to treat this, those people in my
family still donít believe me, still donít support me. The only difference is
that it has a name... and thatís no longer a comfort to me.
My life is completely up in the air.
longer KNOW what to do. I no longer even KNOW what Iím capable of. I donít have
any control of any aspect of my life. If only there were more people behind me ó
to take away some of the pain, the obstacles, the confusion ó then emotionally I
would feel better.
I find myself wondering, and asking
(and wanting to scream), "Why canít my life be normal? Why canít I complain
about regular school things, instead of complaining about how I canít go there
My friends that do complain about school
think thatís pretty funny ó they want to switch places with me. If only they
knew, and if only I could! I want to be able to go to school. I want an
after-school job. When Iím asked "What have you been up to lately?" I want to be
able to say that I did something. I want what all my friends have. I even want
the things they donít like, because itís sure better than this.
I KNOW that there are people with worse
illnesses. And I feel bad for them. But, at least those people KNOW whatís
wrong. At least they have everyone around them supporting them. No one doubts
them ó they have concrete evidence.
Thatís not the case with me. Iím considered
a liar by my own family. It frustrates me that I donít have a way to get them to
see Iím not. I canít seem to get them to see all that Iím going through. All
they see is that not even a doctor can really tell that Iím sick. All they see
is that Iím not in school... and they refuse to believe that I see that as a bad
thing. All they see is what they want... and they donít listen to me.
Maybe this sounds selfish. Maybe others
think itís wrong for me to feel this way. But, since practically all I have for
support is myself, then I have to concentrate on myself. Thatís all I can do.
Itís too hard for me to listen to others when all I hear from them is disbelief
and discouragement. I canít handle that on top of being sick.
So, thatís my
life. Iím surrounded by
obstacles. Iím angry, confused and, most of all, frustrated. And right now, I
donít KNOW if it will ever go away.