Shannon Connolly and I first met on a spring afternoon in 1989 in the locked psychiatric ward of a hospital in the Bronx. She was there because of a suicide attempt; I was there because earlier that morning she had asked the ward psychiatrist if she could talk to an AIDS specialist about her condition.
When I knocked at the door of her room she was curled up in bed, motionless, her face to the wall. But as I walked in, she sat up and extended her hand. Thank you so much for coming, she said. She was 32 years old and little more than a bag of bones, her thinness accentuated by her marked pallor and long, lank hair. One of her eyes was slightly blackened and most of her teeth were missing. Track marks from years of heroin use wavered up both her arms. But her gaze was steady and her grip was firm; as she smiled and motioned me to a seat, I tried to remember when a patient had last treated me so courteously.
I wanted to see you because, well, I told everyone at the patients’ meeting last night that I have AIDS, Shannon said. The doctors knew, but the other patients thought I just came in here because I was really depressed. They got so angry at me--you know how people are about AIDS. I didn’t feel safe. No one’s talking to me. I’m just so scared. I’m scared about everything. What’s going to happen to me?
Between sobs and nose blowing, Shannon’s story came out. She’d been abused by her father, had left home at the age of 17, and had been a drug user and off-and-on prostitute ever since. It was a familiar story among inner-city AIDS patients, made even more tragic by Shannon’s obvious intelligence. She had wanted to be a veterinarian as a child, she said, had graduated from a suburban New Jersey high school, and had even taken some college-level biology courses. But when she tested positive in 1987 for HIV, the virus that causes AIDS, she had plunged into a drug binge interrupted only by occasional hospitalizations.
Like most hard-core drug users, Shannon led a life of utter disarray. She seldom had a fixed address or a telephone number, let alone a doctor, a dentist, or a lawyer. When she felt sick she went to the nearest emergency room; she attended no clinic regularly and took no medicines other than the occasional painkiller bought on the street. But she had a remarkably good understanding of her medical condition and gave me a perfectly coherent account of all her prior hospital admissions.
She told me that in 1988, after she’d been admitted to a different Bronx hospital with a high fever, she had undergone a transbronchial biopsy--a procedure in which a tiny fragment of lung tissue is retrieved for examination under the microscope. It turned out that she had Pneumocystis carinii pneumonia, the most common infection seen in AIDS patients. She said she’d responded well to pentamidine, a standard treatment for this pneumonia, only to be diagnosed with a second episode of Pneumocystis at a second Bronx hospital several months later.
By this time, Shannon told me, her CD4 cell count (an indicator of exactly how depleted the immune system of an HIV-infected patient has become) had dropped from a normal level of about 1,000 cells per cubic millimeter of blood to just 8. Her doctors had explained that a count that low meant she would be extremely vulnerable to a host of AIDS-related infections, and they had talked about starting her on AZT, the most useful treatment we have for people with AIDS. But when she reminded them that she’d had a kidney removed as a young adult, they changed their plan, worried about what the toxic drug might do to her remaining kidney.
So she’d been discharged from her last hospital stay with nothing, she said--no hope, no medication, nothing. After that experience, she told me, she’d thought a lot of things through and had decided to confront her inevitable death with courage. She wanted no more CD4 counts, no transfusions, no experimental drugs, no desperate measures. I won’t let this illness take away my dignity, she said, her chin lifting.
Shannon was evidently in one of the respite periods often seen in people with AIDS, a time of good health sandwiched between episodes of devastating infectious disease. True, she was terribly wasted--she was 5 foot 9 and weighed only about 100 pounds--but at the moment she had no major infections. In fact, I found only a scattering of enlarged lymph nodes--associated with both drug use and AIDS--and a large scar from her kidney surgery.
It seemed to me that Shannon was an ideal candidate for AZT treatment, even with just one kidney. Although not a cure for AIDS, AZT can prolong these respite periods and sometimes even lead to weight gain. But first of all, Shannon needed a friendly, stable, permanent place to go for health care, a place where major AIDS-related calamities might be averted by early diagnosis and intervention.
So I made her an appointment at our AIDS clinic and asked her to arrange for copies of her records from the other hospitals to be sent to us. (Records can be moved from one hospital to another only with the patient’s signed permission.) I wasn’t too surprised when no records arrived and, on the day of her appointment, no Shannon arrived either. The patients we see are so frequently hospitalized, incarcerated, or otherwise occupied that their no-show rate is always high and their paperwork, it seems, is invariably neglected. When Shannon did show up, several months later, she said she’d forgotten about the records.
For the next year Shannon faithfully attended our clinic. Like most of our patients, she had idiosyncrasies we tried to work with, hoping to keep her in the health care system. Foremost among them was her marked disinclination to take blood tests. We would send her down to the lab with blood-test forms; she would develop a headache, a bellyache, an urgent appointment elsewhere, leave the hospital, lose the forms--and when she reappeared in clinic a month later, the process would begin all over again.
Physically, she had her ups and downs. She gained six pounds when she started on the AZT but soon lost the weight again. Then she began complaining of headaches and mild weakness on the left side of her body. Her symptoms were so characteristic of an AIDS-related brain infection that I admitted her to the hospital. But even with a battery of neurologic tests, we couldn’t come up with a cause for her symptoms.
During her hospitalization, a staff nutritionist suggested that we begin supplementing Shannon’s diet by infusing high-protein liquids into her veins. Surprisingly, Shannon was all for this highly technological approach to weight gain. So when we discharged her, it was with a permanent intravenous catheter in her neck, and quart bottles of nutrients to attach to it every night.
Several weeks later I was awakened at three in the morning by a call from the emergency room. Shannon had been brought in by ambulance, barely alive. We quickly realized that an infection had developed in her bloodstream, probably because her catheter had gotten dirty. She hovered near death for several days, until, with the help of massive doses of antibiotics, she began to recover. We reassured her that what she was going through wasn’t AIDS, just a regular infection that was proving difficult to treat. Then, just before she was to go home, the infection suddenly relapsed; she spent another month in the hospital.
When she was finally discharged, wasted as ever, she waved good- bye to her fans: during her three months on the AIDS ward she had become something of a heroine to the nursing staff and patients alike. She was admired for her cheer, her courage, and also for all her practical tips on surviving with AIDS. Somehow Shannon knew everything: which neighborhood churches would give free groceries to AIDS patients, where an AIDS patient could get a free pair of jeans in a small size, the best way to word your living will.
After her discharge Shannon continued to complain of weakness on her left side. She said her memory was getting worse--she kept forgetting to take her AZT. On the second anniversary of her official AIDS diagnosis, she became depressed and made out a new living will. She developed severe headaches. Clearly, I thought, she needed an MRI to make sure no infection was incubating in her brain. But to get approval for this thousand-dollar procedure, I needed to go over her history with a neuroradiologist. So late one afternoon I sighed and picked up her five-volume hospital chart. And something clicked.
Was I just in a suspicious mood or somewhere in the back of my mind had I been keeping tabs on Shannon? Shannon and her yearlong lack of the usual AIDS-related complications. Shannon and her allergy to blood tests. Shannon and the hospital records that still hadn’t arrived.
I suddenly realized just how much a doctor facing a patient over an examining room desk automatically takes on faith. We almost never question that the patient’s history really happened, that the patient’s symptoms are really there, that medications prescribed are really ingested, that the records we want to see really exist. Every medical instinct cultivated through years of training is predicated on the certainty that the patient is telling the truth. When that certainty fades, there are no rules left for how to proceed.
The next time I saw Shannon in clinic, I told her I had to take her blood myself. She shrugged and held out her arm. I took four tubes, sent three of them off for a CD4 count, put one in the freezer, and decided to hold off on scheduling her MRI. Ten days later the results of her CD4 count came back. Shannon had not 8, not 80, but 1,000 CD4 cells in each cubic millimeter of her blood. Immunologically she was normal.
In New York State it is illegal to test for HIV infection without specific consent from the person being tested. Although the law was enacted to protect the rights of the HIV-infected, not the HIV-uninfected, I still felt somehow constrained from testing Shannon without her knowledge. Maybe it had all been a misunderstanding. Maybe her test had gotten mixed up in the lab. Maybe one of the hospitals had somehow confused her with another patient, misdiagnosed her pneumonia, miscoded her results. Maybe she had made a miraculous, never-before-reported recovery from AIDS.
At her next appointment I greeted her heartily: Good news, Shannon. Your immune system is really doing well. She was ecstatic and ascribed it all to my good care. I think perhaps we should repeat your HIV test, just to make sure there hasn’t been a mistake, I said carefully, worried that she might get defensive or even hit me. Instead, she cheerfully signed the consent form and let me take her blood. When the visit was over she thanked me for the good news and walked out of the examining room. I never saw her again.
Shannon tested HIV negative, twice. I made the lab repeat the test a third time. There was still no mistake. Her repeat CD4 cell count was 1,200. I took a subway across town to the hospital where she said she had first been diagnosed with Pneumocystis pneumonia and asked to look at her chart. It was enormous, but it contained no mention of pneumonia or AIDS. She had been seen there many times for depression, for psychotic behavior, and for hematuria (blood in the urine). One physician had wondered, back in 1984, whether her repeated bouts of hematuria--for which he could find no cause--might not have been factitious, manufactured by the patient herself.
I went to the second hospital she had mentioned and found another thick chart. This one chronicled similar emergency visits for depression, for hematuria, and once, a year earlier, for an AZT prescription. She told them she had been diagnosed with AIDS and Pneumocystis pneumonia at our hospital--by me.
Patients have been feigning medical illness for centuries. Some do it for obvious reasons: the young man who limps to avoid the draft, the addict who cultivates back pain to obtain narcotics. For others, the world of doctors, nurses, and hospitals, perhaps first experienced during a childhood illness, proves to be a seductively nurturing environment. Desperate to return to that kind of love and care, they may go to all lengths to become and remain ill, subjecting themselves to dangerous medical procedures, even to self-inflicted injuries. (How had Shannon’s intravenous catheter become so very dirty?)
A small group of patients who literally fabricate their own illnesses are said to suffer from Munchausen syndrome, named after Baron von Münchhausen, an eighteenth-century German storyteller who wandered about the countryside spinning tall tales. Munchausen patients wander from hospital to hospital with ever more fantastic, completely contrived medical histories, seeking operations, medications, diagnoses. Psychiatrists consider these patients to be almost incurable. Veterans of countless operations, consuming unknown combinations of medications, they routinely wreak havoc on hospital wards, flouting the usual rules and regulations, demanding specific medications and procedures, and invariably disappearing after a final grandiose scene just as their physicians become suspicious.
One Munchausen patient--who traveled through Veterans Administration hospitals over a ten-year period in the 1970s--compiled medical files weighing almost 50 pounds. In a single year he was admitted to 39 different hospitals across the United States. This patient repeatedly wangled himself complex abdominal surgery by swallowing spoons. He was diagnosed again and again with kidney stones after soaking a piece of cotton in his own blood and placing it in his urethra, enabling him to pass bloody urine, and a bloody clot, at will. When reciting his history, he variously claimed to be a freelance writer, an airplane mechanic, an American Indian, and the commander of the Persian navy.
Shannon was a Munchausen patient of the modern inner city. She feigned not a variety of diseases, but the one whose various manifestations young adults in the ghetto have come to know as well as any doctor does. She migrated not across the country but across the Bronx, where tangled hospital bureaucracies, frazzled staff, and strict HIV-related confidentiality laws protected her ruse to perfection. And like Baron von Münchhausen himself, Shannon told us wonderful stories that we all wanted to hear and believe. We admired her gutsy confrontations with her terminal disease and were warmed by her profuse gratitude for our care. The usual Munchausen patient is hostile and difficult, but Shannon had a far better technique. She told us precisely what we wanted to hear.
I never did find out how much of what she’d told me about her life was real, how much invented. She simply disappeared into the mists of the drug world of New York City. After two months our social worker got a call that a patient resembling Shannon was attending an AIDS clinic at a hospital in Manhattan. Less than a week later another call came in, this time from the police. Shannon had been found in her apartment, dead of a heroin overdose. They had found our social worker’s business card on her table.
None of us knew what to feel. Doctors and nurses are accustomed to mourning the deaths of patients--especially in an AIDS clinic. But we can usually take comfort in the knowledge that we helped them live longer, or at least better, than they might have without us. Could we say the same for Shannon? Remembering the pure pleasure she took in consoling the other patients on the AIDS ward, I still wonder if I could have found some better way to halt her expensive and self-destructive career in AIDS.