The CFIDS Garden, Fall '96

Being Afraid
By Sandy E. Becker

Originally published in Youth Allied By CFIDS, Fall 1996

There is a lot of fear around our Garden. Some healthy people are afraid that if they come too close, they will become ill with CFIDS just like us. People are often afraid of what they do not understand. But, there is fear inside our Garden too. Fear that causes us to cry and shake in the middle of the night. None of us talk about it much, but we all know it's there and what it feels like.

I think there's a part of each of us that wants to be able to deal with CFIDS like a martyr, pushing through tremendous pain and fatigue, always wearing a brave, happy face. We like to have others say we have risen to the challenge, and to marvel at what fighters we are.

But, what about the other side? What about the days when we need to complain? What happens when we just can't be "tough" anymore? What about the times when we feel like scared little kids who just want to be held and protected?

During my first couple of years with CFIDS, having medical problems was such a new thing to me that I panicked with each new symptom. I wondered whether it was part of CFIDS or not, and if my new symptom was dangerous. I was scared because I didn't know if I was going to be okay.

As I would nervously talk to my doctor, my eyes often welled up with tears. I would tell him what the new symptom was, when it started and how it was affecting my life. But, I could never manage to add the words, "...and I'm really scared about this."

As time has passed, I have become a more experienced and relaxed patient, not always assuming the worst. More importantly, though, my doctor and I have learned to communicate better. Now, if I am clearly upset about something and I don't say that I am scared, he is quick to ask, "What are you afraid that this could be?" My answer to that question seems to play as big a part in determining what we do next as the symptom itself. If I am really worried, he is more likely to order extra tests or consult with other doctors to calm my fears.

An even bigger fear issue, and one that can be much harder to deal with, is being afraid about the future. As symptoms linger month after month, year after year, the natural questions become: Am I ever going to finish school? Am I ever going to be able to get married and have a family? Am I ever going to get better?

It is difficult dealing with an illness that you cannot usually control, and that nobody quite understands. There isn't a test or a doctor that can say when you are going to feel better. Nobody knows what is going to happen to us, and that is really scary.

Writing in a journal about fears is one way to deal with them. Talking with other people with CFIDS can help, because they know what you are going through and they have a lot of the same fears. Family members and friends can also be great listeners if you're scared. And, don't be too shy to tell your doctor if you are afraid about what a new symptom might mean or that you are going to get worse. All of these people care about you, and they want to help, so give them a chance.

It's kind of ironic that people will talk quite openly about being afraid of spiders or heights, but we all tend to keep quiet about such constant and overwhelming fears about our health and our futures. It's okay to be scared! And, it's really important to talk about your fears if they are affecting your health. Admitting that you are afraid does not make you any less of a CFIDS champion -- it just means you are human after all!