CFS: Personal Experience About Personal Choices
By Trisha Steefel

Chronic Fatigue Syndrome (CFS) has been called many things, ranging from “yuppie flu” to “Chronic Epstein Barr Virus” to “The Silent Epidemic.” 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 that’s past since my diagnosis, I’ve 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. I’ve had to choose to ignore the doctors who’ve said, “Oh! Yuppie Flu! It’s all in you head,” or, “You still have that?” I’ve had to choose which days it was safe enough to get behind the wheel. I’ve had to choose whether or not to use my handicapped parking permit. Just because I’m well enough to go out doesn’t mean I’ll 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 don’t eat right now, you’ll suffer later. If you get to the kitchen, you’ll be too tired to eat. If you don’t go to work today, tomorrow there will be more work to do. The day after tomorrow, you’ll 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 you’re so tired, so overwhelmed, you don’t remember you’ve got to go to the bathroom?

It’s that time of the month again, and you have to decide if your menstrual cramps feel normal, but you don’t 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 you’re in pain.

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 wouldn’t start until at least dessert. You learn a lot about your dates from their reactions to, “No, see, I can’t go out when it’s raining. My knees buckle, I’ll fall down, and my arms hurt too badly for me to lift the fork. Please call me after consulting next week’s forecast.”

What do you choose to do if you have CFS? Do you ignore it? Do you push yourself? Do you deny that you’ll 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 that’s hard to remember when you look so normal to the medical community. If you appear so normal, why can’t 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 don’t 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 don’t want them to feel helpless. Do you do everything for them? You don’t want them to overdo it. Do you bring them to specialists, acupuncturists, therapists?

The answer: People with CFS don’t always know what they need. Or sometimes, they’re 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 don’t understand what it’s like, and that it’s 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 doctor’s appointment or are upset that they can’t get out of bed, believe it’s not a cry for attention, it’s not Yuppie Flu. Believe that the source of pain doesn’t 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 Sarah Lawrence 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 Guide.