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
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?
. 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
Q. So you can have herpes and not know it?
. 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?
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?
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?
. 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
Q. How did the diagnosis affect your life?
. 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.
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?
. Family and a few close friends. Everyone's been very
What was your most difficult moment?
. 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?
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
Q. What resource have you found particularly
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
Q. What do you know now that you wish you'd known at
. 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
Q. What is the most important thing people can learn
from your story?
. 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.