A Great Pretender Now Faces the Truth of Illness

by Denise Grady
The New York Times, July 20, 1999:D5.

"To begin with, it was just something I did when I needed someone to care about me," she said, speaking with the burr of her native Scotland. "Then it became something I had to do. It was as if something took me over. I just had to be in hospital. I had to."

Miss Scott, who is visiting the United States from her home in London, says she has not faked her way into a hospital in 20 years. She is 50, with streaks of gray in her hair and deep creases in her face that make her look older than she is. This time, she belongs in the hospital, because she is genuinely, gravely ill.

But her past still qualifies as one of the most severe examples ever known of Munchausen syndrome, a rare psychiatric condition in which people feign illness or make themselves sick because they crave medical attention. By her own count, she became a patient at more than 600 hospitals, sometimes being released from one in the morning and getting herself admitted to another by nightfall. Her portrayals of agonizing stomach problems were so convincing that many doctors resorted to surgery to help her, and she underwent 42 operations, nearly all of them unnecessary. Her abdomen is criss-crossed with scars, leading a doctor who examined her recently to comment that she looked as if she had lost a duel with Zorro.

"She is the most extreme case I've ever heard of," said Dr. Marc Feldman, vice chairman of the department of psychiatry at the University of Alabama at Birmingham, and coauthor of "Patient or Pretender: Inside the Strange World of Factitious Disorders" (John Wiley & Sons, 1994), about people who feign illness or induce it in themselves. "When it comes to number of hospitalizations and number of countries, I've never heard of someone even close." Considering all the surgery and complications she has had, he added, it is remarkable that she survived.

Miss Scott also stands out, he said, because she recovered from Munchausen syndrome, which many doctors consider untreatable, and because she is willing to speak openly about behavior that most patients are too ashamed even to admit. Few doctors have had the chance to talk to Munchausen patients about the condition, because they generally flee when they are found out. Dr. Feldman said that among patients who seek treatment for the syndrome, psychotherapy can sometimes help.

Given Miss Scott's phenomenal career as a liar, Dr. Feldman acknowledged that she might be pulling his leg. But, he said, he did not really think so. Her psychiatrist in England had confirmed the broad outlines of her history, though not every hospital admission, and Dr. Feldman said he had come to like and trust Miss Scott, and to believe that her goal in revealing herself was to help others.

There have always been people who faked illness for one reason or another, and for centuries doctors have known about such phony ailments, called factitious disorders. In 1951 a group of factitious disorders was named for Baron Karl Friedrich Hieronymus von Munchausen, a war hero who traveled around Germany in the 18th century, telling tall stories about his exploits. Medically, the name refers to people who wander from one hospital to the next, telling tall stories about their illnesses and seeking unnecessary treatment.

The syndrome differs from hypochondria, which is not a factitious disorder: hypochondriacs think they are sick, whereas Munchausen patients know they are not. And it is not the same as the factitious disorder malingering, because malingerers play sick to get out of work, obtain drugs or collect insurance, while Munchausen patients are in it strictly for attention.

Munchausen syndrome is rare. Of all patients in the hospital, only 1 percent of those on whom psychiatrists are asked to consult have factitious disorders, Dr. Feldman said, and 10 percent of those have Munchausen syndrome.

Some people with the syndrome, like Miss Scott, simply make up stories and act out symptoms. Several have caused commercial flights to make unscheduled landings so they could be rushed to hospitals for emergency treatment.

Others go to extraordinary lengths to make themselves ill. They bleed themselves, take laxatives, inject saliva or feces to cause infections or secretly take powerful drugs like insulin that they do not need. They have hidden syringes under their mattresses, dangled them outside hospital windows on string or slipped them into the hems of their clothing. Dr. Feldman said he encountered a patient who had introduced drain cleaner into her bladder, where it did so much damage that the bladder had to removed. Another, described in his book, injected yeast and cornstarch into her veins to make herself sick, but the substances formed lumps that lodged in her lungs and killed her.

Psychiatrists say that Munchausen patients long for attention, nurturing, care and concern, and do not know how to find them in healthy ways. Some patients may also be a bit sadistic, Dr. Feldman said, and take "duping delight" in tricking others, especially doctors.

"Doctors hate being played for fools," he said, adding that many despise Munchausen patients, for manipulating them, wasting their time and making them appear incompetent. Dealing with such patients, many doctors feel they cannot win: if they withhold treatment, the patient may sue, but if they offer treatment and it turns out to have been unnecessary, the patient may still sue.

"Probably no other diagnosis is viewed as so contemptible," Dr. Feldman said.

But Miss Scott said: "I never intended to make doctors look stupid. I just wanted to be in hospital."

Her childhood, like that of many Munchausen patients, was rough, to say the least. She was sexually abused, she said, and her mother was distant and unaffectionate. She repeatedly ran away from home. One of her few pleasant experiences was having her appendix out, when she was about 16.

"A nurse would come in the morning and plump up the pillows and say, 'How are you today, Wendy?'" Miss Scott recalled. "It was just little things like that, asking how was your pain, how was your night."

No one had ever shown her so much kindness or concern.

Soon after, she left home and took various jobs at a dairy, a bakery, a spinning mill and a potato farm. Then she became a hotel maid, "cleaning up everybody else's muck and being expected to act cheerful 24 hours a day," she said. The work was hard, depressing and lonely. It seemed to her that no one in the world cared about her.

One day, she made believe she had a stomachache and went to the nearest hospital. "I thought, somebody will care," she said.

She spent several days there being tended to. "It recharged my batteries," she said.

Over the next year or so, she tried the tactic a few more times, at different hospitals. It worked, and soon she was spending all her time hitchhiking from town to town, trying to get into the hospital.

She was not close to anyone during those years. "I didn't have friends," she said. "I didn't want anybody. If I had friends, they might find out what I was doing."

Eventually, doctors began suggesting exploratory operations to find out what was wrong with her. She did not want surgery, she said, but went along with it because it meant that she would be allowed to spend more time in the hospital. She knew that what she was doing was wrong, she said, but she could not make herself stop.

But she found that the people who had treated her so kindly could turn very nasty indeed when they figured out what she was up to. One surgeon stormed up to her bed, scolded her in front of the rest of the ward and ordered her to get out. At a few hospitals, employees snapped her picture to warn others about her.

Like most Munchausen patients, she simply ran away whenever she was caught. A few times she fled with stitches still in place, and removed them herself later. Twice, she was jailed, charged with stealing lodging and food by checking into the hospital needlessly.

Looking back, she said, she might have asked for psychiatric help, if somebody had said, "I know what you're doing but I don't know why." But, she said, "It was always approached in a confrontational way. The barriers go up."

After 12 years, two things finally helped her recover. The first was an operation that went wrong, and left her ill and suffering from severe infections and complications that took her months to recover from.

"I realized that if I kept doing this, I might die,"she said.

The second step in her recovery was a kitten, left to her by someone in a shelter she was living in. She realized that if she went into the hospital, no one would take care of it.

Two and a half years ago, she contacted Dr. Feldman, who has a Web site about Munchausen syndrome (www.munchausen.com), and offered to participate in any studies he might be conducting. But Dr. Feldman thought she might be able to help other patients, and he put her in touch with them by E-mail.

"A number said she made a decisive difference," he said. "Not so much what she said, but that nobody's case is as severe as hers and yet she recovered."

But now she has become a painful example of what can happen to a person who is labeled as having cried wolf. She lives in London, and, even though she has not lied about her health for 20 years, her notorious record has made it difficult for her to get doctors there to take her seriously when she is truly sick. Although she had suffered abdominal pain and other symptoms for a year and a half, few tests were ordered and no diagnosis was made in London. On a visit to the United States, she called Dr. Feldman, who urged her to come to Birmingham, where doctors discovered a large mass in her intestine that required immediate surgery.

Last Friday, Miss Scott learned what the surgeons had found: a malignant tumor, too large to remove. The news came as a shock, and she wept. She wondered bitterly what her outlook might have been had British doctors paid attention to her when she first described her symptoms.

"Once you've been branded," she said, "it's like you've got it written across your forehead: 'Not to be trusted. Munchausen.'"

She was frightened. "I'm not really ready to die yet," she said. "There are too many things I want to do." She had hoped to fly first class sometime, to see New Zealand, to drive her car down the open road once again.

Now, she said: "I suppose I wonder what the future holds. I wonder if there is any future."