VOICE! Spring '97:

I Know

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; it’s enough to have this disease without being doubted and disbelieved on top of it all. I think it’s doubly hard for young persons with CFIDS (YPWCs), which is why I’m 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 Allie’s letters.

CYA/Voice Dictionary

How Aren’t 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 aren’t you?" then we could say, "Great!" "Cool!" and "Most Fabulous!"

The Voice Lettitorial: I Know

By Nichole Foster

I always thought I KNEW where my life was 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 own 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 weren’t supporting me at all. They weren’t backing my decisions, and they weren’t helping me through my illnesses.

I wanted so badly to one day be able to say to them —"See, I told you I could do this. I knew I could."

But then my illnesses became worse — the symptoms a little more severe, sick even more frequently than before, and lasting longer. I didn’t know what was wrong. No one knew. I had test after test that showed nothing.

Part of me almost wanted something terrible to be wrong. Mainly to be able to say "See, I told you." (There’s that phrase again. I think that if they’d listen to me and believe me in the first place, I wouldn’t feel the need to say this.) I also just wanted to KNOW something. I think that I’m used to knowing things... it frustrates me when I don’t. So, when I was told that I have chronic fatigue syndrome, I was somewhat relieved. At that time though, I didn’t realize how so little is known about this disease. Something more I don’t KNOW.

Now, I’m still sick all the time. No one knows what can be done, no one knows how to treat this, those people in my family still don’t believe me, still don’t support me. The only difference is that it has a name... and that’s no longer a comfort to me.

My life is completely up in the air. I no longer KNOW what to do. I no longer even KNOW what I’m capable of. I don’t have any control of any aspect of my life. If only there were more people behind me — to take away some of the pain, the obstacles, the confusion — then emotionally I would feel better.

I find myself wondering, and asking myself (and wanting to scream), "Why can’t my life be normal? Why can’t I complain about regular school things, instead of complaining about how I can’t go there at all?"

My friends that do complain about school think that’s pretty funny — 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 I’m 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 don’t like, because it’s 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 what’s wrong. At least they have everyone around them supporting them. No one doubts them — they have concrete evidence.

That’s not the case with me. I’m considered a liar by my own family. It frustrates me that I don’t have a way to get them to see I’m not. I can’t seem to get them to see all that I’m going through. All they see is that not even a doctor can really tell that I’m sick. All they see is that I’m 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 don’t listen to me.

Maybe this sounds selfish. Maybe others think it’s wrong for me to feel this way. But, since practically all I have for support is myself, then I have to concentrate on myself. That’s all I can do. It’s too hard for me to listen to others when all I hear from them is disbelief and discouragement. I can’t handle that on top of being sick.

So, that’s my life. I’m surrounded by obstacles. I’m angry, confused and, most of all, frustrated. And right now, I don’t KNOW if it will ever go away.