A Big Life, Despite An Illness
A syndrome often misdiagnosed and ignored
By Ellen Keohane
 Ellen Keohane
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(10/04/2007) While working as an Italian and French translator in the film and television industry, Vivian Treves often worked 60 to 80-hour weeks, frequently traveling back and forth from Europe to New York to Los Angeles.
“I loved it,” Ms. Treves said while sitting at her kitchen table in East Hampton on a recent Friday morning. “I had no trouble getting on airplanes. I had no trouble changing continents. I had no trouble dealing with jet lag.”
At the time, Ms. Treves had worked with the Italian film composer Ennio Morricone on a number of movies including “The Untouchables” and “Casualties of War.” She also did interpreting work for other Italian artists like Giancarlo Giannini, Marcello Mastroianni, and Federico Fellini.
Then at the end of 1993, when Ms. Treves was 43, she began to feel as if something was wrong. “Strange things started to happen. I began to not have as much energy as I used to have,” she said. “I started getting violent headaches. I had chills. I started not being able to sleep.” She lost her ability to concentrate and had trouble remembering conversations that had just taken place the day before. And the illness didn’t go away.
Several doctors suggested that Ms. Treves might be depressed and should see a psychologist, but she knew that her illness was physical rather than mental. “I had no reason to be depressed,” she said. “My career was going very nicely.”
After meeting with several doctors and undergoing a battery of tests, Ms. Treves was finally diagnosed with chronic fatigue syndrome. At the time, she had never heard of the syndrome, although she was familiar with the term “yuppie flu,” which skeptics once called the illness.
More than a million people in the United States suffer from chronic fatigue syndrome, according to the Centers for Disease Control and Prevention. But it is believed that only 20 percent of people who have the illness have been diagnosed with it, said Marcia Harmon, communications director for the Chronic Fatigue and Immune Dysfunction Syndrome Association of America.
“It’s not rare,” Ms. Harmon said. “More Americans have this illness than have multiple sclerosis probably.” The illness can be incredibly debilitating, she said. “Many don’t know what’s the matter with them and they’re not being treated for the illness.”
According to the C.D.C., the syndrome causes severe fatigue, which does not improve with bed rest. Its symptoms are varied and include insomnia, weakness, muscle pain, sore throats, joint and muscle pain, headaches, and impaired memory and mental concentration.
There is no known cause or causes for chronic fatigue, which tends to affect more women than men, and there is no specific test available for diagnostic purposes. Full recovery is considered rare, according to the C.D.C.
Although the illness can be challenging to diagnose, research indicates that delays in treatment can be detrimental, Ms. Harmon said. Those who suspect they may have chronic fatigue should see a doctor sooner rather than later, she stressed.
Last year, the Department of Health and Human Services and the C.D.C launched the first national public awareness campaign on chronic fatigue. A component of the yearlong campaign has been a traveling photo exhibit called “The Faces of Chronic Fatigue Syndrome.” The exhibit features two chronic fatigue syndrome experts and eight patients, including Ms. Treves. The exhibit, shot by George Lange, has been traveling across the country. In August it was displayed at Penn Station in New York City.
The key to living with chronic fatigue syndrome is to acknowledge personal limits, Ms. Treves explained. “It’s hard, because I look well. I’m an A-type personality,” said Ms. Treves, who has curly dark hair and talks at a fast clip. “I like to do things. I have a big life.”
The daughter of Italian-Jewish immigrants who fled fascist Italy during World War II, Ms. Treves grew up speaking Italian. Although most of her family fled the country, her grandfather, Elia Emanuele Treves, died at Auschwitz. Growing up in New York and Connecticut, Ms. Treves always maintained close ties to her extended family in Europe, spending summers in Santa Margherita, Venice, the Alps, and Milan.
Before her illness, Ms. Treves had earned an M.B.A. in arts administration at the University of California at Los Angeles and worked for the Spoleto Festival in Italy, the New York Film Festival, and for the Italian film producer Dino De Laurentiis. She also wrote for the Italian and French versions of Harper’s Bazaar, and helped make documentaries on science, politics, and arts in the United States for RAI, the national television network of Italy. By the early 1990s, Ms. Treves had started working for herself as a freelance interpreter.
However, after Ms. Treves became sick, she could no longer work at the same pace she once had. “As you know, anyone who is an independent contractor, you’re only as good as your last job,” she said. “I could no longer do my best.”
For almost three years, Ms. Treves was bedridden. Over time, she slowly started to feel better, although she has never regained the energy she had before her illness. “I was lucky. I had a family who could help me out,” she explained.
One of her frustrations about the disease is its name. In England, chronic fatigue syndrome is called myalgic encephalomyelitis. “That is a far more dignified name,” Ms. Treves said. “The medical community does not take this disease seriously.”
In terms of illnesses, the C.D.C. did not officially recognize chronic fatigue syndrome until the 1980s, Ms. Harmon said, adding that it is a relatively new illness in terms of being named. Since then, there has been more than 20 years of research and 4,000 published studies on chronic fatigue syndrome. “Even skeptics are waiving the white flag saying this really is a legitimate illness,” she added.
Despite her long years of illness, Ms. Treves admits that if she never had the illness, she may have never decided to adopt her daughter, Allegra, at the age of 50. Her daughter is now 6 years old and a first grader at the Ross School.
“I’m definitely getting better,” Ms. Treves remarked. She has been able to take on some professional translation jobs, but has to work at a slower pace. “I could not probably do a deadline, but I could do a project.”
A collection of poems titled “In the Shadow of the Eclipse,” which Ms. Treves wrote during her illness, was recently published by iUniverse. She said she plans to donate the proceeds to raise awareness and provide more research on chronic fatigue syndrome.
“There is a rhyme and reason and a purpose for everything in life,” Ms. Treves said. Of course, there are better ways of getting to where you are in life. “But this role has been thrust upon me.”