Helping Victims of Herpes II Keep Their Perspective

Remember herpes?

A decade ago, it was a hot topic, the subject of magazine cover stories, bad jokes, gossip, fear and confusion. What could be worse, thought many sexually active singles, than a sexually transmitted disease with no known cure?

Then something far worse came along. AIDS, a fatal sexually transmitted disease with no known cure, bumped herpes from the headlines in the early ‘80s and has held them ever since. Now hardly anybody talks about herpes any more--except the people who have it.

Herpes may not be making news the way it once did, but it is still surrounded by confusion and fear. In a way, said a county man who has herpes, acquired immune deficiency syndrome helped put herpes in perspective. “It’s only a skin condition,” the man said.

But the advent of AIDS also brought more misconceptions about herpes. “Because herpes is often mentioned in conjunction with AIDS, a lot of people get the mistaken idea that the two are related,” the herpes victim said.

The man is a member of Orange County HELP (Helping Educate Loving People), a support group for people with herpes. At the group’s monthly meetings, a broad cross-section of people, from 10-year veterans to the newly diagnosed, get together to share information and help each other cope with the emotional trauma that comes with herpes.

The meetings begin with a brief explanation about the disease.

“Herpes is one of the most common infections in man,” said Alex (group members use their first names only) at the beginning of the January meeting. “There’s a lot of mass hysteria and misinformation out there about what herpes is and is not.”

There are several kinds of human herpes viruses, Alex said. Type I is what causes cold sores or fever blisters on the lips, face and mouth. Type II causes genital sores (although either of the two viruses can appear in either place). Type III causes chickenpox and shingles.

Another form, Epstein-Barr virus, is responsible for mononucleosis, and still another, cytomegalovirus, may cause no symptoms in adults but can cause birth defects in certain circumstances.

An outbreak of herpes usually begins with a tingling or itching sensation in the genital area, followed by the appearance of red bumps that change to watery blisters, which then rupture. The sores may be accompanied by pain or a burning sensation.

Herpes is transmitted only through intimate contact, Alex said. “You can’t get it from a toilet seat, a towel, a hot tub or a doorknob. You can get it in a Jacuzzi (if that is where the intimate contact occurs), but not from a Jacuzzi.”

Because mononucleosis, chickenpox, shingles and cold sores are a form of herpes, about 90% of the population has experienced it to some degree, Alex said, and as many as 1 in 5 may have genital herpes.

“Of course, I know it seems to you that you’re the only one,” he told the group. “Two-thirds of the people who have genital herpes don’t notice it because their symptoms are so mild.

“A lot of people come here afraid that their sexual life is over forever,” Alex said. “But fear is your biggest problem. Eventually, you’ll ask yourself, ‘Why am I worried about this?’ and you’ll resume your life more or less as it was before.” (In all but extreme cases, a sex life can safely be pursued as long as the sufferer communicates with his or her partner about the outbreak and there is no skin-to-skin contact of the sore until it is completely healed.)

Alex asked the participants to introduce themselves. About 25 were in this session, and next door a similar-size group was having the same kind of meeting.

“I’m Jeannie, and I’ve had it for five years. I got it from my husband, and I still have a lot of anger about that.”

She said she had become so withdrawn because of herpes that “I only kiss my cat now.”

“I’m Kevin, and I’ve had it for over 10 years. I’m handling it 10 times better now than I did in the beginning, but it’s still probably the largest issue in my life.”

“I’m Jennifer, and I’ve had it for six months.”

“I’m Kevin, and I was diagnosed right after Thanksgiving. It kind of drives you crazy when it happens.”

“I’m Chris, and I’ve had it for a year and a half. I’m curious if it does get any better with time.”

Usually, Alex said, the first outbreak is the worst, “because you have no antibodies then. Afterward, the outbreaks are usually less severe and less frequent. Studies have shown that stress--physical or emotional--can trigger an outbreak.”

Between outbreaks, all forms of the herpes virus hide in the nervous system, he said.

For those whose outbreaks are severe and frequent, Alex said, there is an antiviral drug, Zovirax, that can help control the virus. The drug, available in either capsules or cream, must be prescribed by a doctor.

“I had continuous outbreaks for almost nine months,” Carol said. “Finally, a few months ago, the medicine started working.”

One woman said she is in a relationship with a man who does not have herpes.

“Can you share with us how you told him you had it?” Alex asked her.

“I told him on our second date,” she said. “And his reaction was, ‘I wish I could tell you I had it too, so you wouldn’t worry about it.’ ”

Alex said he once planned an elaborate, romantic evening to break the news to a woman he was dating. But a few days before the date, she mentioned that she was cautious about dating because “I don’t want to get AIDS or herpes.”

“So I said, ‘Well, I don’t have AIDS,’ ” Alex said.

Although it is important to tell people you may become sexually involved with, Alex said: “Don’t make a big deal about it. It’s just an inconvenient condition. You have to reassure them that it’s not as bad as society makes it out to be.”

Jeanette, diagnosed seven months ago, was attending the group for the first time.

“I’m scared and confused,” she said. “I’ve been in a period of feeling sorry for myself. I just know I’m not going to find anybody now. Basically, I just can’t stand men now.

“Before I got it, I had a friend who told me she had herpes, and my reaction was to think she was the dirtiest person I’d ever met. And now it happened to me,” she said.

Jeanette said she has become withdrawn, staying home almost every night and avoiding her old friends. “They don’t know why, and I’m not about to tell them,” she said. “What would they think of me?”

“The silver lining is that you’re really going to find out who your friends are,” Alex said. “And it’s going to teach you a lot about relationships.”

One of the women in the group agreed. She told a man she had been dating, and he rejected her. “I realized from the way he reacted that this guy’s a jerk. And I might not have seen it otherwise.”

Orange County HELP meets the first Friday of each month at the Health Care Medical Center of Tustin. The group also publishes a monthly newsletter and has frequent social gatherings. Call (714) 953-8288 or write Orange County HELP at P.O. Box 4326, Orange 92613, for information.