Living with Chronic Fatigue Syndrome

Chronic Fatigue Syndrome is one of those diseases that’s difficult to diagnose.
By Patricia Foster, from The Antioch Review
July/August 2012

The truth is, I exist in some sort of twilight myself, my energy waxing and waning, my mind at first vigilant and hungry, and then skulking like a whipped animal into a dark corner as if it’s been reprimanded.
DAVE SIZER / FLICKR.COM/PHOTOS/APHID00
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“It’s snowing,” my husband says. “You’d better leave early.”

I gaze out the living room window at a gray cloudy sky and a white drift of snow that buries the sidewalk and coats the bare limbs of trees. Beautiful, I think, before the panic sets in: oh, god, now I must pack quickly, must collect the medical material scattered all over my study, the books and CDs, the clothes and snacks, and then drive an hour to the airport in my husband’s car.

“I forgot to tell you,” my husband announces as he leans into my open window, kissing my hair. “This button on the gear shift . . . see”—he holds a smooth gray plastic knob the size of a thimble in the palm of his hand—“it broke off last week so you’ve got to hold it in place in order to shift into Drive or Reverse or Park.”  He pauses, looks carefully at me. “Don’t lose it or you won’t be able to drive the car.”

“Okay,” I say and watch the snow settle on the windshield in the loose, wet splashes like the beginning of a romantic scene in Dr. Zhivago. But this scene is neither romantic nor nostalgic, only chaotic and disorienting. Still, I smile and blow my husband a kiss.

I drop the broken part into the coffee cup holder, wave and keep smiling though I’m already fretting about this trip, about my weakened immune system, about the drag-ass fatigue that makes me long to lay my head on the dash and sleep for hours. The truth is, I exist in some sort of twilight myself, my energy waxing and waning, my mind at first vigilant and hungry, and then skulking like a whipped animal into a dark corner as if it’s been reprimanded. To keep myself sane, I focus on my schedule: drive to the airport in Moline; stay in the airport motel; get up at 4:30 a.m. for the 6:00 a.m. flight to Detroit; take a taxi-limo to the doctor’s office; see the doctor; take a taxi-limo back to Detroit airport; fly to Moline; drive home. There it is: 30 hours.

All I have to do is pay attention and keep driving. This is no dark journey, I remind myself. I’m going to Detroit to see a doctor of infectious diseases, one who just happens to treat patients with high antibody titers to several viruses—EBV, HHV-6, CMV—now being linked to Chronic Fatigue Syndrome. Not only have I had preliminary blood tests but I’ve had emails from two women—smart, professional women who are the doctor’s patients, women who began treatment four months earlier with new, potent anti-virals that do something like a cellular foot-stomp, wiping out the virus and miraculously shifting these women from “sick” to “normal.”

 

My car moves slowly forward as if independent of me. Ahead, I see cars straddling ditches, cars pitched sideways in the median, some flirtatiously touching nose to bumper like carnival cars. I slow down even more, the wind tossing snow like confetti, my body so tense it becomes numb, my eyes scanning the road, looking for trouble. I can’t see the fields anymore. In 10 minutes, I can’t see the horizon line, the sky as white as the earth. Oddly, I think about my 86-year-old mother who called earlier to tell me she’d just come home from the grocery store and saw her naked, aging face in the mirror. “Oh, honey, it was a shock,” she said. “I forgot to put on my make-up this morning.”

“What’s wrong with you?” my friends often ask. “I mean, you don’t look sick. Are you sure you’re sick and not just depressed?”

When confronted with this question, I’m suddenly unsure, indecisive. How can I tell them my immune system is as unstable as Dr. Jekyll and Mr. Hyde, that I’m both sick and well, a woman who can sit at her desk writing essays and stories, but also a woman whose thinking, on certain days, is shot through with blanks, pauses, valleys of forgetfulness, the cognitive disruption of the disease. What I want to say is that 30 years ago my body rebelled; it went haywire after a seemingly ordinary virus, one of those three-day affairs where you know you have the flu, the kind that leaves you aching and fatigued and fevered for a day or two, and then miraculously departs, your body no worse for the wear. Except, in my case, the release never came. For weeks, and then months, exhaustion shadowed me; my mind drifted, listless, into limping mode; my head felt light but padded, a helmet of straw. Perhaps worst of all was the feeling that I still had the flu, as if some virus was sneaking stealthily through my body making me long only to lie in the dark, to secret myself away and never be disturbed.

 

Outside the Hampton Inn Airport Motel, I sit with my foot hard on the brakes, fuming at an old Buick parked smack in the middle of the motel carport. Irritated, I fumble for that smoky-colored plastic knob, trying to fit it into the groove so I can put the car in Park, but in my hurry the knob slips from my gloved hands, tumbling recklessly into the unknown. Stunned, I gaze stupidly at my booted foot on the brake. Can this really be happening to me, the broken part lost in the car and I unable to take my foot off the brake? Frightened, I press the button for the indoor lights, only to remember they quit working a year ago. I yank off my gloves and scan the floor, touching every inch of space before very carefully searching my lap. All around me snow swirls and the wind howls. Ha! To my relief the knob rests, snug as an acorn, between the cleft of my blue-jeaned thighs. For a long moment, I do nothing but hold tight to this odd piece as if it’s my lucky die.

To my surprise, the motel is full. The receptionist tells me I’ll have to park my car near the back entrance to the motel and use the key card to the common hallway. I push through the slush, snow crunching beneath my boots, my head bowed against the blowing flakes. I’m surprised by a sudden gust of wind that knocks me off balance, and the key card flies from my hand.

And it’s here near the motel’s back door, squatting to retrieve the key card, one gloved hand poking around in the snow, my hood blown off, snow seeping into my eyes and under my collar, that I start to wail. It’s not a full-throated wail, but the small, sniveling yelp of a panicked child, theatrical and ridiculous and real. How could I have been so stupid as to make this trip? I don’t even know the two women who emailed me about the doctor. They’re women I met in a chat room. A goddamn chat room, one of those unmonitored places where patients air their grievances, where anecdotal experience functions as fact, where hope exists in the syntax of a comment rather than the validation of scientific data.

While I’m sniveling, the door magically swings open. “Get on in here.” I look up to see a short, skinny black man wearing a white towel. Only a white towel. And he’s grinning. “That’s a bad-ass night coming down,” he says.

I don’t move. And then I do. I grab my suitcase and plunge into that heat-saturated space, wanting suddenly to dance down the hall with him, wanting to slap his white-toweled ass and order champagne.

Who am I this night, snuggled under two layers of blankets in an airport motel, neither sick nor well? Sometimes I see myself as the princess in “The Princess and the Pea,” too sensitive for the ordinary world, my immune system merely the physical manifestation of anxiety and self-doubt. Sometimes I see myself as heroic, longing to prove that what’s wrong with me can be fixed, my very quest a testimony to my strength.

But my illness feels like a waste. I find no beauty in it, only bleakness. While other chronically ill people seem able to shed their former lives and create new identities that suggest a hard-won maturity, a refined consciousness, I boil with resentment. I want only to be free of this struggle, to wake every day feeling normal.

 

It seems yet another miracle that I arrive in Detroit at 7:30 the next morning feeling refreshed and excited. It’s one of my good days, as if I’ve left my illness in the Iowa cold. Now, in the Detroit airport, I’m relieved to see the limo driver. I try to imagine the doctor, the first meeting so important, so pivotal. Will he like me? I feel my body relax at the idea of his intense gaze, his rush of serious thought. Will I like him?

The doctor’s office is clean and plain, and to my surprise, not full of patients. As always, I want to make a good impression and secretly hope the doctor will see me as special, someone he might obsess over and long to cure. Ridiculous! I blush at such sentimental vanity. In my mind, the black man in the white towel flashes a wide, cunning grin at my foolishness. I laugh.

“Yes?” the receptionist looks up.

“Oh, nothing. I’m sorry.”

But I can’t seem to help myself. When I’m called from the waiting room into the office proper, I feel the glitter of possibility, as if I’m about to find the prize hidden in the Cracker Jack box. Just being in a new doctor’s office buoys me with a mysterious current, soothing my nerves. The room is small, innocuous, and after I take off my clothes and put on the paper gown, I sit on the padded table. Heat blasts from the overhead vent and in ten minutes I’m sweating profusely. After another 10 minutes, the paper gown begins to dampen beneath my arms, to stick to my stomach and thighs. I test one armpit, put my finger to my nose. Oh, dear! Embarrassed, I think of the doctor and his reaction. Suddenly I can’t stand it anymore—the drying heat, the dampening gown, the imagined disgust—and I step down from the table, open the door, and stand just outside the treatment room where the air is remarkably cooler. I’ve been put in the very last treatment room and there’s nothing beyond but a closet. I’m standing quietly outside my door, my arms loose at my side, the paper gown released from my hot skin when a nurse emerges from another room.

“What are you doing out here?” she jerks her head at me, her eyes narrowing.

“Oh, I’m sorry,” I smile. “I’m just burning up in there. I needed to cool off.”

“Return to your room,” she says, her voice a stern reprimand. “We don’t allow that. You must respect patient privacy.”

Stunned at the tone of her voice, I stand up straighter and look intently at her as if I can stare her down. I want to say, “I drove through a snowstorm to get here,” but before I can utter a word, she turns on her heel and goes back into the room. For minutes, I’m frozen in place, but something changes in me—or returns from somewhere deep inside—the sense of being both impotent and furious, of having no control over my destiny, of being worthless, only a beggar at the door. Only the doctor can save me now.

When the door finally opens, I’m slumped over, brooding. Instantly, I resurrect myself, put on my curious, attentive look, a look I hope will win me favor, a look that freezes when I see the doctor’s pale, austere face, the very stereotype of the cold-fish clinician with his bony cheekbones and bespectacled eyes. He barely makes eye contact as he introduces himself, washes his hands, and begins to examine me.

“Do you mind explaining the examination,” I ask quietly. He is lightly touching my neck, feeling my lymph nodes, his fingers efficient.

“No,” he says firmly, “that will interrupt me.”

I nod, stiffening.

After the exam is over, he sits in the chair writing notes while I remain on the exam table. I try again, asking if he’ll explain what he has written on my chart, if he’ll go over my previous tests with me. This time he doesn’t even glance at me. “I’ll explain everything in due time,” he says and strides out of the room. Within fifteen minutes I know that I am a specimen to be examined, not a person to be known. I don’t even feel like a patient. Instead, I wonder if I’m data, statistics, numbers to be charted and amassed with other numbers to be written up and published.

I want to laugh at my earlier assumptions, my naïve yearnings. After such a quick exam, the results are predictable: a list of tests to be done. Expensive tests. That’s it. After twenty minutes, I will not see the doctor again on this visit.

 

What does it mean to be a patient with a disease whose underlying etiology is uncertain? We live in an age when everyone is supposed to claim her uniqueness, her wondrous subjectivity, her authenticity, even her pain and suffering, and yet being a patient often defines not my uniqueness but only my body’s attrition. I am my symptoms. I walk into a doctor’s office, present my insurance card, display my body, repeat my story, listen to the results of whatever tests have been ordered, but beyond that, I know to camouflage my feelings, to restrict my questions, aware that many doctors (and certainly the public) consider Chronic Fatigue Syndrome to be a psychological condition, the somatic expression of an underlying depression. I often want to say, “Listen, there’s a bad-ass night coming down,” but I’ve learned that voicing my fears is considered irrelevant. I’ve learned that certain illnesses require a doubling of the self: a public patient who calmly presents a list of symptoms and a private sufferer who worries and rages, dropping all pretense of well-being.

Surprised to be finished so early, I decide to go back to the airport. It’s not until I am outside the doctor’s office, waiting for the taxi in the chilly Detroit air, that a shiver, almost like hilarity, ripples through me. I clench my teeth, then hold my breath, surprised at the rage I feel.

My own dark journey. How wrong I was to think otherwise. I used to believe that only epic struggle inhabited the nerves and dislodged the mind, but now I know that it’s often the small indecencies—the quick shoves in the dark, the personal slights, the subtle oppressions—that do the most harm. I read recently that in illness, recovery is not merely a medical issue but also a psychic one.

As I walk deeper into the sunlight the cold rudeness of the doctor and his staff thickens inside me; I close my eyes, willing the taxi to come quickly, to deliver me from this place where nothing seems healthy or healthful.

As I’m riding back to the airport through downtown Detroit, all the houses alongside the highway look dressed in gray and dusty black as if they’re part of an archival Depression photo stamped with despair. It occurs to me that what I’m seeing is the disaster of American industrial capitalism, a city deconstructing, moving backward in some atavistic struggle for survival. Here the delusion that everything can be fixed, a peculiarly American obsession, seems to have run aground.

As I stare out the window, lost in thought, I wonder if my own belief is less futile, this hope that I can find a doctor who will help me function and flourish in the world, this belief that I can save myself through committed effort. I gaze at the forlorn houses, snow etching their roofs, and I feel both kinship and fear. I do not want to identify with such hopelessness, such poverty. It occurs to me that illness, like poverty, requires both endurance of “what is” and a guerilla war of the spirit to push beyond “what is” to a larger, more generous, narrative. It’s this spirit that can be depleted in so many ways, the narrative restricted, hope buried, desires crushed. I can’t realistically fault the doctor for his diagnostic skills—who knows what he wrote on my chart? Who knows what results the new tests may reveal? No, it’s his lack of medical compassion (in himself and his employees), and his unwillingness to allow me a voice that I resent.

“You been to that doctor?” the taxi driver asks after we’ve been driving for 20 minutes in silence.

“Yes.”

He smiles at me in the rearview mirror. “I pick up an awful lot of upset people from there.” He shakes his head as if it’s unbelievable.

“They sure seem like a mean bunch.”

“Really?”

He nods. “I pick up someone nearly every day.”

I sink back into my seat, feeling oddly relieved. 

Patricia Foster has taught in the M.F.A. Program in Nonfiction at the University of Iowa for 18 years, and is the author of several books and essays. She is currently working on a nonfiction book about invisible disability. Excerpted from The Antioch Review (Spring 2012), a literary journal founded in 1941, and published quarterly by Antioch College in Yellow Springs, Ohio.  


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