Why I Hate the Term "Fatigue"
Well, in the English language it means "tired." Drawing it out more, the connation is tired from working.
In the public mind, to say we have "fatigue" sounds like we're tired from working. Well, who the hell isn't these days?
The "fatigue" that we have--I would identify almost seven varieties myself--is not like anything I ever experienced in my other life. But it is incredibly hard to explain that to people.
When you have "walking pneumonia," the principal symptom is extreme fatigue. I can recall my son having it and not even coughing. At any rate, they don't call it "coughing fatigue syndrome." or "coughing fatigue disease."
Any serious disease is going to make you fatigued. Consequently, identifying our disease as fatigue and nothing more is akin to saying that we're tired for no good reason.
The reaction I get from people when I say I have Chronic Fatigue Syndrome (if they have not known anyone else with it--increasingly, I am finding people have known someone with it and do know it is serious)--runs the gamut from "I knew you were working too hard" (Not, dammit, I was ALIVE!!!!!) to "Yeah, I've been tired lately too" to "Well, when you get a few weeks of rest you'll be fine again" to the absolute worst, at a cocktail party, "Oh, how au courante."
Compare that with the reaction I get when I say that I have CFS, but then qualify it by saying the name is stupid but it's actually a very serious neurological illness, resembling MS. Much different reaction.
I shouldn't have to go through the part where I have to say, "the name is stupid."
But there is another, more insidious problem with the name.
The insurance companies are (and I am convinced deliberately are) intertangling these three phrases in their press releases and glossy brochures: "chronic fatigue," "chronic fatigue conditions," and "chronic fatigue syndrome." If you know how to read subtexts, this is a beaut. The subtext is--tired like the rest of us but always complaining about it. Goldbrick. Lazy.
Add fat and female and boy do you have an incendiary combination.
Add the subtext of racism and see how difficult it is for an African-American or Hispanic-American to get respect for this disease.
The implication from insurance companies is that we are cheats; the implication in the outside world is that we are lazy.
Finally, if you look at any pop chart for "how to diagnose depression" what are the top criteria? (1) Unexplained fatigue; (2) trouble sleeping; (3) unexplained aches and pains--and what is one of the principal recommendations to people suffering from mild clinical depression? Exercise. Well, that's the worst thing you can do if you have this disease, because unless you are very very careful, you switch into anaerobic metabolism quickly and can do real damage to your body.
But GP's and HMO gatekeepers and friendly neighbors and family play pop psychiatrist all the time and say--Oh, you wouldn't feel so fatigued if you would just get out and get some exercise, dear. Tell that to Richard Pryor in his wheelchair.
So I hate that name. I hate the word "fatigue." For that matter, I hate the word chronic. It has the connotation "chronic complainer," right? "All the time." Whining. Whining about being tired. Can't suck it up, eh?
OR--yeah, well, you brought it on yourself, you overachieving yuppie. (Never mind the people who get this who are poor who are hardly "overachieving yuppies" but are working two jobs to support their families).
OR--oh, don't be so self-absorbed. Go get involved in something. Go take a good long walk.
Too easy for Bryant Gumbel to laugh at us (which he does). I don't think he cracks jokes about multiple sclerosis. It's funny as a rubber crutch, Bryant.
The name "chronic fatigue syndrome" makes me feel I have to scream to the outside world: "I am not a liar. I am not a cheat. I am not lazy." I loved my life. I was alive. This is not a vacation. I'm not "resting." It takes physical effort for me to do everything I continue to do. This is not easy, it is hard.
So, that's why a lot of us hate the word "fatigue."
(P.S.--as far as changing names of illnesses go, the name CFS is less
than a decade old, which hardly makes it long- standing or traditional.
M.E. predates it by three decades. And remember, "tuberculosis" was called
"consumption" well into this decade. In my lifetime, I have also seen
the term "Down's Syndrme" replace "mongoloidism"--with a concurrent awakening
to the promise of a life that is different, but can still be active, purposeful,
and joyful. So there's nothing abnormal in a campaign to change a name,
and it can be a useful educational and publicity tool.)
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