Tom, 38, is a school teacher from a Boston-area suburb who was diagnosed with herpes in 1992 and later became active in the local HELP support group sponsored by the American Social Health Association (ASHA).
Q. What were your initial symptoms?
A. I had a full-blown primary outbreak—fever, aches, pains, tiredness, congestion, back pain and, last but not least, lesions on my genitals.
Q. Did you have any idea what it was?
A . I did but for the wrong reasons. At the time, I knew next to nothing about herpes. I thought I might have contracted it from a former girlfriend who thought she might have had herpes. I later learned that you couldn't get an outbreak years later. If you get a primary outbreak it's because your body has no defense to the herpes virus which is completely inconsistent with it being dormant for years. I discovered that the woman I was involved with for several years before the outbreak had herpes long before she met me but didn't know it because she mostly shed (had lesions) on her buttocks. I didn't get it right away because she didn't shed from her genitals. She'd gone to her doctor but he didn't diagnose it as herpes.
Q. So you can have herpes and not know it?
A . It happens all the time. It's usually men who have it and get symptoms at very low levels; the lesions can be so small that you can't see them with the naked eye but you're still shedding. So a lot of men don't know they have it until they infect their partners. And then they can be real jerks about it.
Q. What treatment did you get?
A. I was living in Costa Rica at the time and the doctor there thought it was another venereal disease and gave me tetracycline. After a few weeks it just got better on its own. When I travelled to the US a few months later, I had a blood test because I wasn't having symptoms. [A fingerprint test was developed since some blood tests will only test for the presence of one herpes antibody.]
Q. How did you feel when you found out?
A. I was pretty upset. I was pretty sure I had herpes from the symptoms but had that little bit of hope that it wasn't a permanent disease. I was tested for HIV at the same time and the first thing they said to me was "you're negative" and they meant HIV not herpes, which gave me some perspective.
Q. Where did you get healthcare?
A . I went to a health center specializing in STDs. The woman I dealt with there was very professional and could answer my questions. It was a positive experience. I got a prescription for Acyclovir which I didn't need until I had another outbreak six months later. However, as a volunteer for a support group, I hear horror stories about how people are treated by their doctors. They are belittled and misdiagnosed because doctors don't know much about this disease. From the medical standpoint, it's not going to kill you. The general course of the disease is that you have a primary outbreak that's pretty bad, and you have a few years when you're having regular outbreaks, but they diminish over time. It's devastating when you're diagnosed, but herpes manifests very differently in different people.
Q. How did the diagnosis affect your life?
A . I had to tell people I had herpes before I slept with them; you've got to have that conversation. Of course you have to be much more serious about having protected sex. The first times I had to talk with someone were really hard and I came pretty close to not doing it. It gets easier every time. I didn't have any bad experiences, but people do. More often than not, the person doesn't leave. I've heard that only one-third of partners walk away. There's also a big part of your life you can't talk about. Unlike other illnesses, when you're having an outbreak and have pain and itching in your genitals and are feeling like crap, you can't tell people at work about it. People don't want to hear it, just like you wouldn't tell them about gonorrhea. It's hard having a health issue that you can only tell a few people about.
Q. Who did you turn to for support?
A . Family and a few close friends. Everyone's been very supportive.
Q. What was your most difficult moment?
A . My wife contracted herpes and had these random symptoms we'd only heard about happening in a few other people. She had nerve damage and pain and it lasted for almost two years. It got better over time but the first year was really rough. We were careful but one outbreak snuck up on me. The outbreaks are usually related to stress and lack of sleep. It was the end of the summer I was getting ready for school, and not expecting an outbreak.
Q. What about your best moment?
A. The fact that we were able to have a safe, vaginal delivery of our healthy daughter in spite of the increased risks with herpes. We were able to manage the disease so that we could approach the pregnancy with confidence and have it turn it out well.
Q. What resource have you found particularly helpful?
A. Definitely the ASHA HELP group. My wife and I ended up providing more support than we were receiving. We're managing the disease well enough in our lives so it's nice to give back. We've met surprisingly few couples where one infected the other. We were sort of unique. Most of the people you see are unattached and really up against the whole issue of talking about it with partners. You have people who don't go out, and people who break up with partners before they have to tell them. A lot of times we felt that we offered a more positive vision: that you can work out a relationship even if you infect your partner. We experienced the worst case scenario and it worked out. A lot of people wanted to hear my story and how I told my wife. We told that story a lot. When I was diagnosed, I wasn't that freaked out about having herpes. My feeling was it's not the end of the world, I can take that on.
Q. What do you know now that you wish you'd known at the time?
A . I've become much better informed. There are so many subtleties with this disease and so many potential ways to transmit it. For instance, if you contract herpes type II (the genital type) by performing oral sex on someone with an outbreak, you'll get one outbreak and that's it. Herpes type II prefers the genitals and type I (cold sores) the neck. In a support group, when you first show up you get this exhaustive amount of information about herpes. It was great to get all that information and build on it as a group facilitator. It would be great if there was more information available.
Q. What is the most important thing people can learn from your story?
A . Having herpes is not the end of the world by a longshot. It basically comes down to being an inconvenience. Every so often you can't have sex for two weeks. You're not a leper, your sex life and your life in general is not ruined at all by this. You can lead a perfectly normal life with herpes.
Interviews were conducted in the past and may not reflect current standards and practices in medicine. Talk to your doctor to learn more about how this condition is diagnosed and managed today and what treatment approaches are right for you.
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