Tuesday, February 12, 2008

And Then My Trouble Began

(Replaced photograph with cartoon 10/16/08.)

Read the first post in this series
here. Links to all posts in this series on the story of my illness can be found in the sidebar.

Midway through college—about fifteen years ago—I took a year off, spent six months in Indonesia, thoroughly wore myself out, got creamed by a prophylactic malaria drug, picked up gut bugs, and dropped production of lactase, the enzyme which breaks down milk sugar. Stopping the anti-malarial mefloquine eased the lightheadedness and headaches that pinned me to bed, but I didn’t rebound. I came home sleeping fourteen hours a day, thoroughly lethargic the other ten. I extended my absence from school another term and took antibiotics again and again and again. I got some better, but the gut just wouldn’t calm. I saw doctors, went for tests, became expert in various methods of stool sampling. More than twelve months and I don’t know how many consolation milkshakes after my return, I tried the no-dairy diet. Oh my, undigested lactose is bad for tummies; it makes them cramp and hurt bad. Hence my discovery of just how everywhere lactose is and how much trouble very little can make.

No bugs. No dairy. Still no calm. A gastroenterologist peered inside my colon with his nifty periscope. I thought my inner walls looked beautiful, shiny, resilient. He said, “You’re right. Your intestines aren’t working well.” But no bad things grew there. None showed either in the many pretty pictures taken with the aid of that great tester of sphincter competence, a barium enema. And the ornery MD—having schooled his mind to stomachs and intestines, to things he knew and not to mysteries and clues—felt not a prick of interest in the clue to my great fatigue that came while I wilted under his care.

On the day of a blood draw I felt particularly weak, like if auras were real mine was eaten out with acid. I sat in the chair through one tube . . . two tubes . . . Then I awoke in a vinyl recliner. They said I had had a small seizure. They let me rest a bit. They wanted me to get up and go. But in the dark my brain had snagged on something and twisted. Opening my eyes, moving in any way, watching any movement, these things just tightened the twist. They carted me off to the gastroenterologist’s office and dumped me on an examining table, where a nurse periodically pestered me to sit up. Since she insisted there was nothing wrong with me, I eventually erected myself and externalized the contents of my stomach, a little thank-you present. Mercifully, the soon-to-be groom of this invalid bride worked in the hospital. An email from the phlebotomist had roused him from his cubicle. Now, very slowly, Larry wheeled me down to the front door and drove me home as gently, as smoothly as he could. I landed on the couch, and, though awake, didn’t move for 5 hours.

The next day I called the technician who had drawn my blood, seeking more information. Like many phlebotomists I’ve tangled with, he thought he knew all about fainting and had a psychological profile for fainters. Pass out when you’re having your blood drawn and everybody pegs you as being afraid. But a normal person who passes out feels normal again soon afterwards—so I’ve heard, though I can’t speak from experience. I had felt like a sumo wrestler pressed my skull between his fists, like the world moved way too much, like if I turned into a stone I would not be still enough. And it took days to recover. This seemed significant to me, and I was right, but I wouldn’t begin to understand why until a couple of years later.

I graduated from college, married Larry, moved to Chicago, started graduate school. I was always tired, and my bowels cycled through tantrums and passive-aggressive silence, but I functioned. I finished a one-year master’s program in performance studies and started the PhD program. I was a Baha’i at the time and a fool. I still tried to keep up. I managed my symptoms, extracted flaccid aid from the student health service, and gradually went down. Then one afternoon, early in the Baha’i month of fasting, something happened in my body. I can’t say what because I don’t know; I just suddenly felt radically wrong. I broke fast immediately, but a change had occurred and there could be no pretence of functionality anymore. I was now so tired I lived each day just to make it back to bed. Then I lay there and stared at the wall while I awaited sleep, desperate for unconsciousness. I was unafraid of death. I wasn’t going to seek it, but I wasn’t going to complain if it came.

Before this, I kept saying I felt nauseous and doctors kept asking me if I might be pregnant. They asked me this question for so many months that I started to wonder if they needed a refresher on reproductive biology. Nauseous was the wrong word, anyway. As a kid I felt sick riding in a car for even short distances, and people told me that I felt nauseous. But I felt sick in my head not my stomach. Woozy would have been a better word. Now I sometimes tell doctors I feel lightheaded, even if I don’t, because it causes the right neurons to fire in their heads. Telling them how I really feel leaves them blank-brained. In medical school there are no classes in the poetics of illness.

And the need to communicate does not come prepackaged with ready eloquence. I didn’t have the words to match the experience. In a fresh attempt to convey my situation and get help, Larry and I made a one-page statement of my symptoms. I tried to describe something of what I felt: the sick empty sensation in my limbs, the extreme fatigue and weakness, the pressure in my chest, the headaches and motion sensitivity, the way my symptoms would, in an instant, get suddenly worse, after which it would take several days to a week to nurse me back to the usual bad that was now my best. The real feelings of illness were not this orderly and straightforward. They were kaleidoscopic.

Having no independent health insurance, I was a plaything of the student health service, where the doctors thought mostly of substance abuse, depression, mononucleosis, pregnancy, and sexually transmitted diseases, whether or not these possibilities were objectively relevant. By the time of my big setback, I had seen most of the doctors there, to no avail; they were nice enough and inexperienced, mostly fresh from their residencies. I requested and got the head of medical services. She turned out to be an evil woman named The Penguin. Well, actually, her first name was Pengwynne. I’m sure God loves her and wants me to love her too, but she was not nice to me, not nice at all. At the first appointment I handed her my statement. She set it aside without a glance and said she wanted to hear it from me. Excuse me, who do you think wrote this and gave it to you, Tinkerbell?

After the first round of blood tests came back negative, she said I was just a little depressed, suggested I take a regular walk, and made a plug for some then-new antidepressants that could have been filmed for an ad. I thought that if a little depression could cause my symptoms, the whole of human society would come to a standstill. But I dutifully submitted to evaluation by a psychiatrist who, much to the Penguin’s annoyance, said that I was not depressed but managing well with a hard situation.

Larry came to my appointments. The doctor made her displeasure known by glaring and grumbling about the difficulty of accommodating another body in the small exam room. Once, in Larry’s place, my mom came. When Dr. P entered the room, my mom stood and introduced herself, putting out her hand in greeting, but the evil Penguin paused, looked at that hand, and then walked past to her desk, where she collected herself, turned around, and said hello. When my mother suggested that I shouldn’t have to have separate appointments for every test, that this process ought to move faster, Ms. Penguin said she didn’t think the problem was urgent.

After depression and a few other false starts, Ms. P thought AIDS might be the culprit. I explained in detail why I was fairly certain I could not have HIV, in fact I would have been a medical mystery if I had. She was unmoved. I think doctors that work in student health services are specially trained to assume that patients lie about their lives. I was trying to work with her, trying somehow to get her on my side, so I consented to the test. But when the results came back indeterminate (two positive ELIZA tests and one indeterminate Western Blot), Ms. P, now armed with a concrete reason to think I might be HIV positive, went forward on the assumption that I wasn’t.

She did not order the third, definitive test, a decision which several doctors later told me was completely unethical, but left me with a new, though to me still improbable, thing to worry about and instructions to get the same test again in a few months. I did, twice actually, and both results were negative. So a lot of stress and trouble for nothing. The Penguin talked to some other doctor, decided I might have an autoimmune disorder, and began pursuing that possibility at a leisurely pace. I thought this a reasonable and hopeful turn, until I read descriptions of the various autoimmune diseases. None sounded remotely like me. Progress was not coming from this doctor.

I asked for a referral to a cardiologist. She said no. I told her about the autonomic disorder that researchers at Johns Hopkins had linked to chronic fatigue syndrome. Dysautonomia, the term I used in the first installment of my story, is the general term for a dysfunction of the autonomic nervous system. There are many kinds: a person may not be able to sweat, their bowels may not move, or their heart may beat too fast when they’re standing. The researchers at Johns Hopkins used the term neurally mediated hypotension for the particular form of dysautonomia they studied. And my post-fainting symptoms were described well by them, though in a milder form. They theorized that chronic fatigue could be caused by a series of pressure-drop episodes (not necessarily causing outright fainting) that kept the patient in a state of perpetual funk.

Neurally mediated hypotension is a kind of orthostatic hypotension—that is, low blood pressure in an upright position. Hypotension means low blood pressure; neurally mediated means the nervous system is involved in causing it. When you stand, gravity pulls your blood down toward the center of the earth (but it can’t go farther than your feet). Your body has to work harder to keep your blood from pooling down there and to return it to higher-altitude regions. The normal body doesn’t always respond fast enough to prevent a feeling of lightheadedness, but it does kick in, constricting blood vessels in the legs and speeding up the heart a bit. Neurally mediated hypotension is sometimes also called delayed orthostatic hypotension because it does not refer to the light-headedness that sometimes comes with standing up too quickly; it refers to a precipitous drop in blood pressure with sustained upright posture. The test for it is something called a tilt-table test. I wanted one.

Just to humor me, I’m sure, the Penguin took both my sitting and standing blood pressures. She said that after standing my pressure went up a little bit, so I didn’t have that problem, but my heart rate did go up too, so maybe I had a little blood-volume problem. Possibly she could give me a little fludrocortisone.

Everything was little with her: a little depression, a little blood volume problem, a little daily walk or a little fludrocortisone to help the little problem. I must have been a little overwrought, exaggerating my little difficulties not a little bit. I fantasized staging a performance art happening outside her office door. I would stand there until I passed out, while Larry held up a stop watch and counted out the time. It probably wouldn’t take long. I might injure myself, but it would be worth it. I told her I didn’t want “a little fludrocortisone.” I wanted a diagnosis and serious treatment, and I knew that this in-the-office, 20-second standing blood pressure reading was irrelevant to diagnosis of neurally-mediated hypotension.

I called a cardiologist’s office; they wouldn’t take me without a referral. I could not get a referral from the Penguin. Maybe I could have found a doctor who would refer me, but we were worn out. There was an option, however: two years before, Larry had worked with a couple of cardiologists in New Hampshire while completing his doctoral dissertation in electrical engineering. He emailed one of them and told him our situation. The cardiologist agreed to see me in a few weeks and pre-scheduled a tilt-table test. We were intending to go to Maine for the summer anyway, and so, knowing that we might have to pay for these new medical bills ourselves, we made the journey East to see a doctor who was interested, wanted to help, and wasn’t hostile. Of course I would be diagnosed and treated, and would make an impressive recovery like those narrated by the Johns Hopkins researchers in their journal articles.

Ah, that would have been nice.

The next post in this series is "Tilt Table Test."


  1. Priscilla, thank you so much for writing your blog. It's fascinating, extremely well written, and has pointed me in a direction to pursue for my own spouse who is disabled with CFIDS.

    Your eloquence in detailing your encounters with the medical profession will help others understand this terrible illness.

    Thanks for writing.

    Donna Mirabile
    donna underscore mirable at yahoo dot com.

  2. I'm so grateful to come to know your story in its detail. You write with such clarity. I'm both fascinated and horrified by each stage. Telling your story in this way encourages us all to be actively engaged in our own health care: asking questions, demanding answers, demanding respect. I'm grateful for your courage and your honesty.
    Affectinately, Lisabeth

  3. Donna and Lisabeth,

    Thanks so much for your kind comments; they really help motivate me to keep writing.


  4. I agree with what's been said here. It's not just rewarding for those of us who don't know what it's like to read what you've gone through. This is an important statement for people who are suffering with medical problems that doctors don't take seriously enough, whatever they may be. I hope as many people who are feeling ignored as many people whose suffering is minimized read this as possible. If they do, what you say will give them hope.

  5. Such wonderful writing. Thank you.

  6. I come from another realm of neurological disorders and mine are much more manageable than yours. But what you describe: the need to tweak the language in order to fire the proper response in the medical staff; the absence of sensitivity to what you so aptly name "the poetics of illness"; the lazy misdiagnoses and the refusal on the part of some doctors to budge from mistaken assumption to possible solutions; all those things resonate deeply. I would never have expressed it as well as you have. I can fully appreciate that, in order to achieve that expression, you have paid dearly and continue to do so. Thank you very much for your clarity. Best wishes to you and yours.

  7. Nauseous was the wrong word, anyway.

    Yes, that's true. Nauseated would be much better there.

    Spectacular story, Priscilla. Thank you for posting.

  8. Dangit, where's Michael Moore when you need him???

    Excellent post... a very compelling read.

    And as for my blogs, yeah, I've had some problems with the scripts I used... so I decided to move everything over to LiveJournal. So if you want, you can read everything I wrote since 2001 at thomasoverbeck.livejournal.com ...take care!


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