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My Doctor"Are you depressed?" Bob, my doctor, asked after he finished examining me."I suppose I could always find a reason to be," I said and smiled stiffly. (A rush of rage, how many times would a man tell me I'm depressed, that I have some sort of vague woman's problem?) "No, I'm not. This isn't the way I am at all when I'm depressed. Something's wrong with me. It feels like mono." (Is there something wrong with me? Or am I depressed?) "Well, we could test for that," he said, turning away. (He's rude. Why does he turn his back to me while he's talking?) "How long did you say you've been sick?" "It's been six weeks. (I said that before, several times. What can I do to make him pay attention and listen to me?) I thought it was some kind of flu, but it hasn't gone away. I still have a fever and--" "99 isn't a fever, you know," he said and looked me in the eye. I was beginning to feel like a crock, a malingerer. "For me, it really is a fever. I usually have about 97 in the morning. And the main thing is that I'm so exhausted all the time." (Don't whine at him, Eva. That's what he expects a woman to do. Don't try to convince him. Just tell him.) "Sounds to me like depression. Well, I'll have the technician take your blood. Even if you do have mono, there's nothing to do about it." With that, he walked out of the examining room. I know the signs of depression and I didn't have them. I was eating regularly, although I could no longer drink my usual beer in the evening and had developed an aversion to coke, coffee and even meat. I wasn't losing weight, was involved in my photography, although I had no energy to go into the darkroom to print. I had a show coming up in a couple of months and a lot of work to do for it. But it's easy to tell me I'm depressed. I'll almost believe it. I remember when I had PMS symptoms, long before it was legitimized by a name. Twenty-five years ago, I told my psychiatrist husband, now my ex, that I felt like I was being taken over by some chemicals, that I was a different person a few days before getting my period. "You just don't like being a woman," he said. "It's a sign of depression." "No! I love being a woman. It's like something is entirely different about me. Everything looks bleak and I cry so easily. Then I get my period, and it lifts." He shook his head. That kind of response is enough to make anyone depressed. I've been told so often that I don't know what I'm talking about, that I don't feel what I'm feeling. (And am I feeling these things? Do I always have to doubt what I feel, even when I'm sure? I should be a state leader, a Margaret Thatcher, Indira Ghandi. Maybe they'd treat me differently. Or even Madonna. What does she get told by her doctors?) When I had a miscarriage two years after my first son was born, I was told by my gynecologist, "The body takes care of itself. You won't get pregnant now for a couple of months till you've recovered from the miscarriage." Three weeks later, I told my husband that I felt that I was pregnant again. He said, "But you haven't even had a period. You're not pregnant. It's just wishful thinking." Then I called my doctor and told him. He said, "No, you're not pregnant. I know you'd like to be, but I told you before, the body takes care of itself. Wait till next month and then call me." But that wishful thinking turned out to be Paul, my second son. (A kind of hollow triumph to be right about these things that I feel, I know.) The nurse came in to take my blood. The first stab missed the vein. By the third try, she got it and I felt faint, my usual reaction to being poked by an inept with a needle. (Would she be more careful with a man? I wonder.) "Lie down for a few minutes. You'll be okay," she said as she left the room with the vial of my blood. (That dark brown black red of my blood, so casually taken, so casually treated, like me. And will I trust the results of the test?) Bob came in again. "Give me a call tomorrow and I'll let you know. I don't think you have mono. Probably you'll feel better in a couple of weeks. Just take it easy." And then he was gone. (Damn him! I should have talked about my work, the pictures I had to print, mat and frame. Then he would have been impressed. He has such contempt for women who don't work.) As I pulled on my jeans, I suddenly felt woozy and had to lean against the wall. It was cold, very cold. A shiver passed through my body and a burning tingle covered my thighs. Something was definitely wrong with me. And it wasn't depression. (Fear, a cold fear clutched me. Maybe I was going to die of whatever this was.) At home, I lay down on the couch and covered myself to the chin with a carriage blanket. The shivers hadn't subsided. I fell asleep. It was noon. I woke up when Jim came in. "How are you, baby? What'd Bob say?" I told him Bob said I was depressed. "You're not depressed! You're sick! Damn it! And he's been so good when you've had those cysts in your breasts. You've always trusted him." "Yes, at least till now. He was terrific with the fibrocystic disease. Never let me worry about a lump for longer than it took to have them aspirated. Well, I guess we'll see." (Don't make Jim worry more than he is already. He's been so helpful.) At that time, I didn't even have the strength to cut vegetables, much less go shopping. And our two-hour hikes, well, we hadn't been on a walk of any kind for six weeks. He was doing all the cleaning, everything he usually did plus my share. He fed me, did the laundry, sat with me for hours holding my hand or stroking my hair as I lay on the couch, too exhausted to move. (I'm going to die. I know everyone does. But I'm going to die of this. I know it.) I lay there thinking about Bob. His wife, Mary, had been a photography student of mine for five years. She got to be a really fine printer in my darkroom. She had the feeling and perfectionism for this discipline. Once the lessons stopped, we realized we missed seeing each other and became good friends. Shortly thereafter, I began to see Bob as my internist and was more than satisfied with his care, so prompt, so considerate. (But he's opnionated and rigid and stammers when he gets excited. He respects me because I work at photography. I'm a photographer. A housewife, which I am, too, is not to be respected. He has no respect for his wife.) Maybe I was depressed. (And maybe I want to be out of the whole picture, an invalid, like Hans Castorp in Thomas Mann's Magic Mountain. I read it when I was a teenager and my mother was constantly accusing me of being lazy.) But then what about the fever I had every single day? He said it wasn't really a fever. If it's not 100 or over, I know that doctors don't take it seriously. (Maybe it's not a fever. Maybe I'm imagining this feeling. But the thermometer doesn't lie. I even bought another one to check the first one out.) I had aches and pains all over, especially in my joints. I was exhausted all the time. Couldn't even take a short walk. And last year, we took two and three hour hikes. Over the next week, I spoke to several friends. One asked me if I was depressed. Another said it sounded like a bad case of the flu and I should give it time. And another said she'd ask her doctor husband about it. He told her to tell me to have my doctor test for Lyme disease and cytomegalic virus, that there were other diseases that presented similar symptoms and my doctor should test me for them. (Why couldn't he call me himself? Why does it have to go through my friend Carol? I would call him if I had this kind of information to give him.) I called Bob two weeks after my visit to his office. "OK," he said, "You don't have mono, we know that now, and I don't think you have anything else. But come on down and we'll test for cytomegalic virus." In the meantime, I had to cancel every appointment I had scheduled to take my work around, to see friends, to go to a concert on a Saturday night, etc. (What a good excuse not to take my pictures around. I hate doing it, hate the rejections. Maybe I'm copping out?) I went to Bob's office again. He wasn't there, but his technician knew that I was coming for another blood test. Again, the poking and subsequent faintness. I lay down, dizzy and shivering, after she was done. When I came out, Jim drove us home. (I felt woozy at the wheel, too upset--or what?--to drive home.) The test came back negative. "How about Lyme disease?" I asked Bob. "And aren't there other conditions that look like this? Shouldn't we be testing for other things?" (Please listen to me! Do something!) "I don't think we're going to find anything, Eva. It seems to be some kind of flu." "But this is like some awful case of mono," I said to him. "I had mono my first year of college. It was like this, but this is much worse." "Well, come on into the office and we'll run another test." (He's just humoring me. He thinks I'm a crock, a woman who has nothing better to do than to be hypochondriacal.) Altogether, he did four tests, several weeks apart. All of them came back negative. My arm looked like a junkie's, black and blue marks and holes all over the soft skin in the crook of my arm. I called Mary, Bob's wife. "You're still sick?" she said. "This doesn't sound like you at all. I'll talk to Bob." (Another friend told me I shouldn't call my doctor's wife. It wasn't right, she said, to drag her into this. That's not the way one should handle things. I didn't agree.) I called Bob a few days later to say I was feeling the same way, fever, awful aches and pains and extreme exhaustion which wouldn't go away. "I have a show coming up in a couple of months and I don't know how I'll manage to get ready for it." "Yes, of course, your show" he said and I could hear that he was impressed by the fact of the work I had before me, that I wasn't merely a housewife. "I don't know what to do," he said. "Maybe you should see an infectious disease specialist. I know of two in the area. They're both good and work in the same office." (Does he not want to be bothered with me anymore? Or is he really at a loss?) I called the doctors' office immediately and a few days later went to see Dr. Koch. A young man, somewhere in his thirties, he did a complete physical examination, took the most thorough history I've ever had, and altogether spent an hour with me. His attention alone was worth the three-hundred dollars it cost. (A hell of a way to be, to be so grateful if a man listens.) "We'll have to run a lot of tests to rule out other things, but you seem to have Chronic Fatigue Syndrome." "Really?" I asked, feeling relieved just at having a name to attach to this. "Looks like it. I've got several patients with this." "How long does it last?" "Six to eight months, sometimes longer. But I think you'll get over it soon." "How long can it last? I'm not getting any better." "Well, one of my women patients has had it for three years." "Three years?!?" "Yes. But I don't think you will have it for that long. Maybe a couple of months more. I've seen worse cases than yours. But let's wait for the test results. You can give me a call next week." "Sometimes I have a really hard heartbeat. I feel my heart, not fast, but pounding. Is that a symptom of this?" "You're probably just anxious." (There it is again. Later, I read that this is one of the many possible symptoms with CFS.) Since there are no specific tests for Chronic Fatigue, the diagnosis is reached by the presenting symptoms and by ruling out quite a number of other diseases, like lupus erythematosis, multiple sclerosis, and so on--all autoimmune dysfunctions.(Like AIDS!) The other finding with CFS is a much elevated T cell count. (With AIDS, the T cell count goes down. Wonder if I can transmit this to someone else.) T cells are white blood cells which fight infection. The following week, Dr. Koch returned my call. "Hello, Eva? This is Dr. Koch. All the tests were negative, but your T cell count is elevated, way above two thousand. You definitely have Chronic Fatigue." (He's calling me Eva and himself by a title and his patronymic.) "What do I do? Can I take something?" "Rest, that's all you can do. There's no treatment for it. Eat a good diet, get some exercise, as much as you can without pushing, and rest. You'll probably get better in a couple of months. Call me every once in a while or if your symptoms get worse." It's been seven months since that phone call, eleven months since I got this. I do call Dr. Koch every couple of months. As with most doctors, I have to leave at least one message, sometimes three, before he calls me. When he does, it's always the same: "Hello, Eva? This is Dr. Koch....." I want to say to him, How about if I call you Jeff? Or maybe you want to call me Mrs. Shaderowfsky." This should be the least of my problems now, that Bob didn't take me seriously at first and that Dr. Koch calls me by my first name when he introduces himself by his last. I spoke to Bob about a month after I saw Dr. Koch and told him all about the examination, the careful history taking and the diagnosis. "That's a lesson to me. I didn't know that the yuppie flu or chronic fatigue was anything other than depression." I've got to give him credit for saying that, at least. I'm still the same, sometimes a little better, sometimes not. Dr. Koch no longer says I'll be over it soon. It's been almost a year now. EvaS@aol.com [ Eva's bio | Table of Contents | Action Page: how can I help? ] |