The CFIDS Garden, Fall
By Sandy B.
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
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
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
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,
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
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
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
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
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!