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Skin deep

By Will Alexander

The woman told me that she had not expected anything unusual to come up on her yearly gynecological exam. She was in good health, did not have a boyfriend and had never had a problem on prior visits. Her voice started to break as she relayed what the doctor had told her: the irritation she thought was a yeast infection was really the sexually transmitted infection called genital herpes.

In the three years that I worked on the National Sexually Transmitted Disease and AIDS hotlines (1-800-227-8922 and 1-800-342-AIDS), I talked to hundreds of men and women newly diagnosed with sexually transmitted diseases. While the people diagnosed with herpes were some of the safest from a medical perspective, they were also some of the most distraught callers.

Genital herpes is the nation?s most common sexually transmitted disease. According to the American Social Health Association, a nonprofit advocacy group that staffs NSTDAH, one out of every five adults in the U.S. has genital herpes, and every year one million people are infected with the virus that causes the illness. Up to 90 percent of people with genital herpes do not know they have it, experts estimate.

Biologically speaking, herpes simplex type 2, the virus that usually causes genital herpes, is similar to a well-known, less maligned virus?herpes simplex type 1, the virus that usually causes cold sores. Either virus can cause both oral and genital infections. The name of the disease comes from its location, not the responsible virus.

Whatever the location, herpes defies the popular black-and-white, win-or-lose notion of disease. Many people know the bad news: while treatments for symptoms exist, herpes is incurable. Especially during early infection, genital herpes can be exceedingly, even incapacitatingly, painful. I?ve talked to men who woke up to find their genitals, thighs and buttocks covered in blisters and women who resorted to urinating in bathtubs to reduce their pain.

However unforgettable these experiences must have been, they are not representative of typical herpes infections. Outbreaks do go away, after anywhere from a few days to a few weeks. Many people feel only mild discomfort or do not even notice their first outbreak.

Even without treatment, herpes generally gets better. Although the immune system lacks a mechanism to rid the body of the virus, it learns to recognize and destroy active virus, reducing the number and duration of outbreaks. Transmission, primarily linked with outbreaks, also becomes less likely the longer a person has herpes.

Herpes is not a malevolent entity with plans on murdering its host. Herpes does not shorten the lifespan or do permanent damage to a healthy adult. It is a skin virus that exists to reproduce itself. Herpes?s evolutionary success owes much to the fact that the virus is so mild; it is in the virus? best interest if more people are alive and sexually active to spread it.

Other conditions are defined by symptoms, not the presence of an infectious agent. The virus that causes chicken pox never truly goes away?recurrences among the elderly and the immune deficient are known as shingles?but when we refer to people with chicken pox we generally mean active disease. Specific viruses cause warts, yet no one talks about being ?diseased? when he or she wakes up with a bump on his or her hand.

The fact that so many people have herpes without knowing it inspires a rewording of the popular Zen question: if a person has herpes, doesn?t have any sexual partners to spread it to and doesn?t have any noticeable symptoms, does he or she have a disease?

Unfortunately, most people I talked to on the hotlines seemed to believe the answer was a resounding ?yes.? Even the mildest herpes case can come as a tremendous mental blow. Perhaps because of the virus? ?incurable? nature, herpes seemed to carry a stigma stronger than even that of other sexually transmitted diseases. I talked with newly diagnosed people who described themselves as ugly, disgusting, tainted and unlovable.

Although televised jokes about people getting AIDS would rightly draw national outrage, it is still socially acceptable for Jay Leno to joke about contestants getting herpes on a Fox reality show.

Despite their often-difficult nature, I found that some of my most inspiring calls came from people with herpes. People with herpes may not have finished crying by the end of the call, but many of them hung up determined to get on with their lives. Sometimes the hardest decision, in the absence of an easy answer or the possibility of praise, is simply to soldier on.

Will Alexander is a graduate student of medical journalism in the School of Journalism and Mass Communication.

Posted November 22, 2003 03:00 PM