Experience About Personal Choices
Chronic Fatigue Syndrome (CFS) has been called many things,
ranging from ďyuppie fluĒ to ďChronic Epstein Barr VirusĒ to ďThe Silent
Epidemic.Ē CFS diagnoses, which tend to occur after testing negative for all
other possible disorders, are increasing at alarming rates. In fact, the Center
for Disease Control (CDC) has stated that CFS is fifteen times more prevalent in
women than lung cancer (33/100,000) or breast cancer (26/100,000). It is also
more than forty times as common as AIDS (12/100,000) among women.
Over the near-decade thatís past since my diagnosis, Iíve
learned about more than the sinus problems, tinnitus, headaches, and an
exhaustion so intense it cannot be put into words. CFS is an illness about
choices. Iíve had to choose to ignore the doctors whoíve said, ďOh! Yuppie Flu!
Itís all in you head,Ē or, ďYou still have that?Ē Iíve had to choose which days
it was safe enough to get behind the wheel. Iíve had to choose whether or not to
use my handicapped parking permit. Just because Iím well enough to go out
doesnít mean Iíll be well enough to walk a long distance back to the car. How do
I explain that to someone who sees me, a normal looking young woman, in a
handicapped parking spot?
CFS is about choosing which battles are worth fighting. If you
donít eat right now, youíll suffer later. If you get to the kitchen, youíll be
too tired to eat. If you donít go to work today, tomorrow there will be more
work to do. The day after tomorrow, youíll be exhausted from playing catch up,
and be incapacitated for the next week. Which is the lesser of two evils? How
can you make such a choice when youíre so tired, so overwhelmed, you donít
remember youíve got to go to the bathroom?
Itís that time of the month again, and you have to decide if
your menstrual cramps feel normal, but you donít remember what normal feels
like. Do you A) laugh at the bottle of acetaminophen and go straight to your
prescriptions? B) try to save the prescriptions for flare-ups that might be
worse than this? Chances are, you choose A. Now which pill? What dose? The
bottle says one every six hours, but your tolerance has built up and youíre in
You have a date tonight. You choose the most comfortable shoes
in your closet, hoping your extra-long skirt covers them. Forget the panty hose,
your skin has bouts of itchiness, and nylons make that ten times worse. Not to
mention they make your knee braces shift out of place. Just as you finish
getting ready, it starts to rain. You knew it would, you could feel it in your
lower back. But you hoped it wouldnít start until at least dessert. You learn a
lot about your dates from their reactions to, ďNo, see, I canít go out when itís
raining. My knees buckle, Iíll fall down, and my arms hurt too badly for me to
lift the fork. Please call me after consulting next weekís forecast.Ē
What do you choose to do if you have CFS? Do you ignore it? Do
you push yourself? Do you deny that youíll crash if you do? Do you start your
morning with breakfast, or not start your morning at all? Do you listen to the
doctors or your own body? Listening to your body is always the right choice, but
thatís hard to remember when you look so normal to the medical community. If you
appear so normal, why canít you just be normal? You ask yourself this,
especially after your friends, loved ones, even doctors ask this of you.
What do you choose to do about CFS? If you donít have it, why
should this matter to you? Chances are, you know someone who has it, even if
they have yet to be diagnosed. Do you encourage them to live as normally as
possible? You certainly donít want them to feel helpless. Do you do everything
for them? You donít want them to overdo it. Do you bring them to specialists,
The answer: People with CFS donít always know what they need.
Or sometimes, theyíre too tired to ask, maybe even too tired to articulate at
all. As a person with CFS, I am asking you to choose to communicate. Ask
questions and truly listen. Choose to recognize. Just because people with CFS
look fine, they might not be. Choose to realize that you donít understand what
itís like, and that itís frustrating to hear that you know how tiring life can
be. You know how tiring your life can be, not the life of a person with CFS.
Most importantly, choose to believe. When people come back from a difficult
doctorís appointment or are upset that they canít get out of bed, believe itís
not a cry for attention, itís not Yuppie Flu. Believe that the source of pain
doesnít need to show up on an x-ray. Trust that they know their bodies best.
Know that in believing in this invisible illness, you are helping to validate
sufferers of CFS, and you are helping the world realize that people with CFS
need your help and support.
Trisha Steefel, a senior at
College, is studying a
double-concentration in psychology and non-fiction writing. She was
diagnosed with Chronic Fatigue Syndrome at age 12.
Trisha's article was originally published
in the 2005 - 2006 Garden State Women Health and Wellness
Communicating the importance of knowing
more about CFS is also a priority for Trisha's mother, Lorraine Steefel, RN, BA,
MA, MSN, CTN. Lorraine is a core trainer for the CDC and CFIDS Association of
Project. In the three years since Lorraine began training, she has
educated over 500 providers, mostly Nurse Practitioners, on CFS. Lorraine is one
of a select few core trainers to participate in our Grand Rounds series, where
she joined CDC researchers as a presenter to the Harvard University School of
Nursing in 2004.