Herpes Sufferers Find the Fear and Stigma Lessening

Pat Taylor remembers the stigma surrounding genital herpes when he discovered he had the disease 15 years ago.

“It was almost impossible to talk about it,” said the Anaheim engineer, 45, at a recent meeting of a herpes support group called Orange County HELP. “You could not find anybody educated enough to not be scared to death.”

But Taylor, who has been married twice and dated in between while he has had the disease, said that today, things are different. He has learned how to educate his partners about his condition and they are willing to listen.

He avoids sexual involvement any time he thinks he may be contagious, but said he cannot remember one partner refusing to enter a sexual relationship because of his disease.

He has also seen the stigma surrounding herpes reduced. HELP has helped him learn how to educate partners about the disease and that there are “lots of ways to communicate behind the bedroom door. It forces you to learn how to communicate other ways.”

Today, Taylor suffers blisters about four days every four months and termed his condition more of a nuisance than anything else.

Relying on new tests that determine what percentage of the population carries antibodies to genital herpes, experts say about 50 million Americans have contracted herpes, a number that is not receding. The condition can still be physically and emotionally devastating, especially for new sufferers.

The experts add, however, that only one-fourth of those infected develop symptoms and that there is a general awareness that the disease is less serious than once thought. As a result, the fearful public reaction, which reached its zenith in the early 1980s, has subsided considerably, along with media coverage.

Part of that awareness is the result of education. The disease, signaled by sores on the skin usually in the genital area and sometimes accompanied by pain, itching or tingling, is transmitted by direct contact with the infected area.

Dr. R. David Miller, medical adviser of Orange County HELP, said many herpes carriers and their partners know they can prevent transmission by avoiding physical contact with the infected area during an attack. Although there is a slight possibility of contracting herpes when a partner has no symptoms, condoms and spermicidals between active outbreaks give added protection.

Miller is not the only medical expert who noted less fear about the disease.

“I think . . . the disease has fallen into a more appropriate perspective with the general public,” said Dr. Stephen Straus, head of the medical virology section at the National Institute of Allergy and Infectious Diseases in Bethesda, Md. “It is a common and not severe disease in most cases.”

‘Fairly Benign Disease’

“Back when it became well-publicized, the symptoms and consequences of genital herpes in the adult were sensationalized,” said Dr. Lisa Frenkel, a research fellow in the Division of Infectious Diseases of the Department of Pediatrics at the UCLA School of Medicine. “It’s really a fairly benign disease even though once infected, you have it forever.”

“Physically, it’s not that bad,” said Dr. Surekha Mishal, acting chief for Los Angeles County’s Sexually Transmitted Disease Program. “It’s painful, but some people have very mild recurrences and they . . . do quite well. Others have frequent recurrences and it’s quite painful. But it does not predispose a person to other diseases.”

Straus said several factors made the disease less alarming.

People Start to Relax

“One is the fact that when it suddenly became very frightening with all the media demonstrations of the worst cases, people came to realize that what they have is not as bad as it could be and they became more relaxed.

“Second, they began to realize that serious complications such as infection of the newborn and herpes encephalitis are quite rare.

“The third thing would be the realization that people who acquire the virus are not doomed to frequent symptomatic recurrences.”

Straus said the fear of frequent symptomatic recurrences of genital herpes was calmed by the marketing in January, 1985, of oral acyclovir, which is not a cure but which had a major impact on the often severe first cases and could also lessen the frequency of subsequent occurrences.

The public also learned that herpes was only a nuisance compared to far worse sexually transmitted diseases such as AIDS, Straus said.

Because they perceive genital herpes as a mild illness, many researchers are focusing on its potentially fatal transmission to newborns.

Transmitted to Babies

Dr. Kay Stone, an epidemiologist in the division of Sexually Transmitted Diseases at the Centers for Disease Control in Atlanta, said that the virus is transmitted to an estimated 400 to 1,000 babies a year. “Forty percent of them die with treatment,” she said. “Of the survivors, many are mentally retarded or have psycho-motor disturbances.”

Most newborns acquire the infection from the birth canal during delivery. Because studies show that cultures taken in the latter part of pregnancy may not reflect whether a herpes virus will be present during delivery, UCLA’s Frenkel recommends that doctors visually inspect the birth canal during early labor.

If they find evidence of herpes virus, or if cultures from previous days have been positive, a Caesarean section should be done. If there is no evidence, a woman may proceed with vaginal delivery, but Frenkel said cultures should be taken to monitor for the presense of an invisible herpes virus.

Two Types of Virus

Social concern about herpes simplex began in the late 1960s when researchers learned that two types of the virus infected humans. Type One caused the majority of oral infections, including cold sores and Type Two produced the majority of genital infections.

The viruses could be transferred through genital or oral-genital contact. Later studies indicated that they could be communicated by people with no history or visible symptoms of the disease.

In 1982 journalists noticed an incurable venereal disease attacking middle-class patients and poured out stories.

A computer search of 435 American and Canadian magazines for that year revealed 71 stories on herpes, including a Time magazine cover story that called the disease “Today’s Scarlet Letter.” Four years later, in 1986, the same magazines almost forgot the disease, printing only seven stories.

Meanwhile interest in AIDS grew rapidly. The 435 magazines increased their stories on the fatal disease from two in 1982 to 42 in 1985. The Christian Science Monitor, Los Angeles Times, New York Times, Wall Street Journal and Washington Post beefed up coverage of AIDS from six stories in 1982 to 647 in 1985.

The editor of the Orange County HELP’S newsletter said media attention produced a change in attitude. “In the 1970s, there was no attitude,” said Carol, asking that her last name be withheld. “Herpes was virtually irrelevant. It was something people with herpes had to be conscious of themselves not to spread it.”

In 1982, she said, around the time she contracted herpes, Time and other magazines published their stories and “anxiety hit an all-time high.”

“When the media blitz hit and we got that Time magazine cover, everyone panicked,” agreed Mike, 41, president of the Orange County HELP group, who contracted herpes in 1977 and also asked that his last name not be used. “If you are constantly berated in the media telling you how bad something is, you almost start to believe it whether it’s true or not,” he said.

When the media turned its attention to AIDS, life became easier for herpes sufferers.

Stigma Removed

“The stigma of herpes has been removed to some extent, which is the way I think it should be,” said Miller, medical adviser to the Orange County HELP herpes support group and director of the Division of Obstetric and Gynecological Infectious Diseases at the University of California at Irvine School of Medicine.

“Probably the sensationalistic approach to herpes caused an incredible amount of distress to people with the disease,” Miller said. “In other words, they were suddenly told ‘you have something terrible. Your life is at an end.’

“If we’d called this genital cold sores rather than herpes, I think the social impact and the distress would have been a great deal less.”