Note: This piece was originally written in 2006. I was diagnosed with fibromyalgia a few months after writing it.
I am grinding my teeth.
I know instinctively that I shouldn’t; it makes my jaw hurt and can often lead to a loathsome headache, but right now I have no other outlet.
I sit hunched over in an uncomfortable plastic chair. I’m dressed in old jeans and a sweatshirt that could use a washing, scanning the room like a hungry, angry buzzard on the lookout for a freshly dead creature upon which to feast. I am just that grizzled, as I have been for the three months I’ve been waiting for this appointment.
I started experiencing overwhelming fatigue and joint pain five months prior out of nowhere, and when I reached two months of feeling like I’d been hit by an SUV from the time I woke up in the morning until I went to bed every night, I went to my GP and asked if she could figure out what was wrong. Since a 20-year old presenting with unexplained pain and fatigue was out of her wheelhouse clinically, I was referred to a neurologist. Of course, he had a three-month waiting list.
The overarching issue–as has been driven into my skull over and over again as I search for a treatment for whatever it is I have–is that as a culture, we expect doctors and medical science as a whole to be our saviors. We expect them to automatically know what’s wrong with us, and to make it go away. We expect them to make sense of maladies that often do not make sense, and quickly. No one has told me that figuring out an illness can be a long and complicated process. So I expect that someone—at the very least an expert such as this doctor I am about to see—will have at least some answers as to why I’ve been feeling like death-warmed-over for the past five months.The only thing I can do at this moment, however, is focus on how much I dislike this waiting room.
The room is nearly colorless, but flooded with fluorescent light. The light makes the carpet the color of vomit, and the cheap, plastered wall like rapidly expiring cottage cheese. Magazines are scattered on plywood tables: Parents, Child, AARP, Yacht Digest Monthly. None of these apply to my immediate situation, and to take a cursory browse through any of them would make me even more impatient and angry. I would gladly kill for a copy of U.S. News and World Report right now–anything that could take my mind off of my pain for even a minute would be a blessing.
I gingerly remove my iPod from my backpack, snap the headphones over my ears, then press play. The opening notes of Tori Amos’ “Happy Phantom” fill my ears, and for a brief moment, I am pleased.
The song’s bizarre imagery of Tori running naked and chasing strict nuns around, however, is quickly interrupted as the office’s phone roars to life. The middle-aged blonde receptionist with a hideous floral shirt and long red fingernails picks up the phone. In a voice louder than I had anticipated, she chirps, “Clinic, this is Anna, how may I help you?” Not only does this woman share my name, she has a voice like Marcia Brady on steroids with a megaphone. I know that no matter how loudly I turn my music up, I will not be able to avoid hearing her. Sighing slightly, I dump my iPod back into the dismal abyss of my backpack.
After sitting hunched in my chair for what seems like an eternity and a half, another blonde woman in a hideous shirt emerges from the mysterious door leading to the back that has until now remained closed. She holds a clipboard in one hand, a pen in the other.
“Ms. Hamilton?” she says. I nod briefly, smile politely, and get up, shuffling out of the waiting room.
The doctor, a short, stocky man with thinning black hair and no-rim eyeglasses, sweeps into the office that I have been shown to, all business. He eyes me carefully before sticking out his hand.
“Hello, I’m Dr. West.”
“Hi,” I say quietly.
He peers down at my gigantic file, readjusting his glasses with an aging, veiny hand. I assume that my primary care providers must have faxed him a complete set of my medical records, although I suspect that a “complete set” may actually require a sturdy hand truck and a cardboard box to cart around.
“So, what seems to be the problem?” he says, looking at my file.
“I’ve been having really bad joint pain for a couple of months, and I’m tired all of the time. My energy level is really low, and it’s difficult for me to get out of bed some days. I just feel kind of. . .dead.”
He nods, still staring at my chart. He does not make any eye contact. “Anything else I should know?”
“Well, uh, I’m a vegetarian and I usually eat pretty healthy foods, I was born prematurely and have a mild case of Cerebral Palsy—the actual term for it is Left Hemiplegia. If you need any records on that or anything, I can call my former physical therapist and she’ll fax them to you—“
“None of that matters. You can stop.”
“What I can tell you so far is that your symptoms aren’t consistent with a textbook definition of any type of rheumatological issue. They just aren’t consistent. I can’t give you a diagnosis at this time.”
This is the guy I have been waiting a full three months to see. By this time, I have had multiple blood and urine tests, many speculations by different doctors, and more accidental “sick days” off from school than I can keep track of. Plus there’s the pain and fatigue–all day, every day. I have been waiting, rather impatiently, for answers, and now that they are supposed to be here, they are not. I want to scream at him: I cannot continue to live like this. I’m not a fucking case study in a med school textbook. I’m in pain.
I don’t yell at him. If there’s one thing that a lifetime of dealing with weird health problems (including Cerebral Palsy, life-threatening allergic reactions, and depression) has taught me, it’s that I have to be polite and patient to get anywhere with medical professionals.
I stare into space as the doctor drones on and on. He mentions something about a TB test. “Okay,” I say. Okay. Okay. Okay.
“I’m going to start you on some steroids. These may make you feel better, or they may make you feel worse.”
“Okay.” Since I’ve been on steroids for my anaphylactic allergic reactions before, and have been surprised every time at how they completely drain my energy and tiny reserve of zest for life, this does not sound like a promising treatment plan.
The doctor leaves, and another nurse leads me to a tiny, closet-like room with barely enough space for a scale, a cabinet, and a blood pressure machine attached to the wall. I sit down in the room’s only chair, staring at the door as the nurse takes a needle from the cabinet’s top drawer and unsheathes it. She grins at me, slightly frizzy hair forming a halo around her wide face.
“I’m just going to make a little bubble under your skin,” she says. I automatically offer my right forearm. The needle goes in. The nurse’s expression changes.
“Oh, you know, I forgot to put the fluid in! Silly me,” she says, and giggles a bit.
This does not strike me as especially amusing.
“That’s okay,” I bleat automatically. The needle is filled with the requisite fluid. I offer my forearm again, like the next cow at the slaughterhouse who moseys up the conveyor, unaware of the gruesome fates of those who went before her. The needle slides in again.
The fluid-skin bubble forms. The nurse smiles apologetically. I begin to sob.
The doctor pops out of the corner, sticking his head into the doorframe.
“Is everything okay?” he asks in a monotone.
“Oh, she’s fine. She’s just scared of needles,” the nurse says, with more pep than is necessary. The doctor utters a short grunt and continues down the hall.
I shake my head as the nurse looks at me sympathetically. “He’s very good at what he does,” she intones.
I don’t want to hear any more from her. If this “expert” can’t figure out why my body has turned against me, who will? Five months of feeling completely deflated has been enough, and at times has felt like more than I can handle. I realize that finding out what is wrong with me will be a long and arduous process, but from my vantage point here in the doctor’s office, crouched and upset, it seems like this will go on forever.