Fatigue—Why I Never Use the "F" Word

Everyone on earth has a unique point of view. We also have things in common. At one time or the other everyone on earth (including your least favorite person) has experienced happiness, laughter, anger, jealousy, fear, tears, and the common cold. In big picture words, it makes little difference what language someone speaks, what their gender is, where they live, how much money they have, what their religious or political views are—we all have these experiences in common.

So how can things be both common and unique at the same time? All that means is—even though we use universal names for things—we may not be referring to the exact same thing. Why? Well for example, women who have given birth have experienced something both universal and unique. Me, I've always been lucky if I made it to the hospital my children were born so quickly; a beloved sibling, however, was in labor for three days with one. Same experience—right? Yes and no.

This is in no way demeaning, but people who have never experienced childbirth are simply not part of the club. Some have yet to experience it; some choose a different path; and some, such as say men, will never experience it. Childbirth means many things to males, but no matter how nicely you put it, they are outsiders and will always be "outsiders." Male attitudes toward childbirth can range from "good grief what are you screaming about—it can't possibly hurt that much - it's not hurting me that much," to "it's like watching a car wreck—there's blood, screaming and nothing I can do" to the man who passes out overwhelmed by the whole onlooker experience. Even male doctors, although hopefully more knowledgeable about the mechanics, can no more relate to the actual experience than the paperboy can.

And there is the problem. No matter how common or universal human experience is, individual experience is sometimes the bottom line. When my son bangs his fingers with a hammer and says, "Oh boy that hurt," and I'm making part of this up to keep this a family-friendly post, he means it hurts. No doubt about it. No argument. However, when I refer to childbirth, and say, "Oh boy that HURT," we are so not talking about the same experience. And pointing out the difference does not make me crazy or a liar, although I may be guilty of common sense.

Which is why I just skip the "f" word. What profound, bone-crushing fatigue means to me as a patient medically diagnosed with a severe, organic, neurological disorder is not even on the same planet as someone who experiences fatigue as temporary tiredness. Having experienced both, I know just how enormous the difference. No matter how knowledgeable and open to differences another person may be, we all tend to "measure" other people's experiences with our individual yardstick. Sometimes the difference is hardly noticeable and other times the gulf cannot be bridged even if you use the same words.

The more self-absorbed the person, the less likely they are to recognize that the rest of the world doesn't revolve around them, their individual experiences and their resulting opinion. My mama told me opinions are like belly buttons everyone has one. Just don't confuse your belly button with mine. So when people ask me what I have I simply reply, "My doctors have diagnosed me with a severe neurological disorder." Almost no one ever replies, " Oh, I have a severe neurological disorder too! Maybe I have what you have."

Everyone experiences tiredness and fatigue, but relatively few experience it as just one of many severe components in the context of a complex organic neurological disorder. But if I'm silly enough to say I have "chronic fatigue syndrome" I can hardly be surprised if someone gives me the equally silly reply that they also experience fatigue and probably have what I have.

Stop setting yourself, and the other person, up for the inevitable communication failure. It's not fair to anyone.

Posted to Co-Cure.org, 9 Mar 2005 by Kate Duprey (fibro58@YAHOO.COM)