Living With Herpes: An Interview With Tom

profile of man Tom, 38, is a school teacher from a Boston-area suburb who wasdiagnosed with herpes in 1992 and later became active in the localHELP support group sponsored by the American Social HealthAssociation (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 knewnext to nothing about herpes. I thought I might have contracted itfrom a former girlfriend who thought she might have had herpes. Ilater learned that you couldn't get an outbreak years later. If youget a primary outbreak it's because your body has no defense to theherpes virus which is completely inconsistent with it being dormantfor years. I discovered that the woman I was involved with forseveral years before the outbreak had herpes long before she met mebut didn't know it because she mostly shed (had lesions) on herbuttocks. I didn't get it right away because she didn't shed fromher genitals. She'd gone to her doctor but he didn't diagnose it asherpes. Q. So you can have herpes and not know it?A . It happens all the time. It's usually men who have itand get symptoms at very low levels; the lesions can be so smallthat you can't see them with the naked eye but you're stillshedding. So a lot of men don't know they have it until they infecttheir 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 doctorthere thought it was another venereal disease and gave metetracycline. After a few weeks it just got better on its own. WhenI travelled to the US a few months later, I had a blood testbecause I wasn't having symptoms. [A fingerprint test was developed since some blood tests will only test for the presence ofone herpes antibody.] Q. How did you feel when you found out?A. I was pretty upset. I was pretty sure I had herpesfrom the symptoms but had that little bit of hope that it wasn't apermanent disease. I was tested for HIV at the same time and thefirst thing they said to me was "you're negative" and they meantHIV not herpes, which gave me some perspective. Q. Where did you get healthcare?A . I went to a health center specializing in STDs. Thewoman I dealt with there was very professional and could answer myquestions. It was a positive experience. I got a prescription forAcyclovir which I didn't needuntil I had another outbreak six months later. However, as avolunteer for a support group, I hear horror stories about howpeople are treated by their doctors. They are belittled andmisdiagnosed because doctors don't know much about this disease.From the medical standpoint, it's not going to kill you. Thegeneral course of the disease is that you have a primary outbreakthat's pretty bad, and you have a few years when you're havingregular outbreaks, but they diminish over time. It's devastatingwhen you're diagnosed, but herpes manifests very differently indifferent people. Q. How did the diagnosis affect your life?A . I had to tell people I had herpes before I slept withthem; you've got to have that conversation. Of course you have tobe much more serious about having protected sex. The first times Ihad to talk with someone were really hard and I came pretty closeto not doing it. It gets easier every time. I didn't haveany bad experiences, but people do. More often than not, the persondoesn't leave. I've heard that only one-third of partners walkaway. There's also a big part of your life you can't talk about.Unlike other illnesses, when you're having an outbreak and havepain and itching in your genitals and are feeling like crap, youcan'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 havinga 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 verysupportive. Q. What was your most difficult moment? A . My wife contracted herpes and had these randomsymptoms we'd only heard about happening in a few other people. Shehad nerve damage and pain and it lasted for almost two years. Itgot better over time but the first year was really rough. We werecareful but one outbreak snuck up on me. The outbreaks are usuallyrelated to stress and lack of sleep. It was the end of the summer Iwas 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, vaginaldelivery of our healthy daughter in spite of the increased riskswith herpes. We were able to manage the disease so that we couldapproach the pregnancy with confidence and have it turn it outwell. Q. What resource have you found particularlyhelpful?A. Definitely the ASHA HELP group. My wife and I ended upproviding more support than we were receiving. We're managing thedisease well enough in our lives so it's nice to give back. We'vemet surprisingly few couples where one infected the other. We weresort of unique. Most of the people you see are unattached andreally up against the whole issue of talking about it withpartners. You have people who don't go out, and people who break upwith partners before they have to tell them. A lot of times we feltthat we offered a more positive vision: that you can work out arelationship even if you infect your partner. We experienced theworst case scenario and it worked out. A lot of people wanted tohear 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 havingherpes. My feeling was it's not the end of the world, I can takethat on. Q. What do you know now that you wish you'd known atthe time?A . I've become much better informed. There are so manysubtleties with this disease and so many potential ways to transmitit. For instance, if you contract herpes type II (the genital type)by performing oral sex on someone with an outbreak, you'll get oneoutbreak and that's it. Herpes type II prefers the genitals andtype I (cold sores) the neck. In a support group, when you firstshow up you get this exhaustive amount of information about herpes.It was great to get all that information and build on it as a groupfacilitator. It would be great if there was more informationavailable. Q. What is the most important thing people can learnfrom your story?A . Having herpes is not the end of the world by alongshot. It basically comes down to being an inconvenience. Everyso often you can't have sex for two weeks. You're not a leper, yoursex life and your life in general is not ruined at all by this. Youcan 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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