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Medical Ignorance I Experienced

I got herpes in 1995. I was 29 years old. Six of my friends were getting married, and I remember joking to a friend that there seemed to be a “marriage virus” sweeping our social circle. Little did I know that, a few months later, my life would be deeply changed by a different – and unwanted – type of virus.

I remember the exact day my symptoms started. It was May 10. I had just had a huge fight the previous evening with my most recent ex-boyfriend, Jay*, who had just moved out of our apartment a couple weeks before. It was his birthday that day, and I had offered to take him out to dinner. We got into an argument in his apartment when I found out he had a new girlfriend already. I screamed that she should take him out to dinner, and ran out. The next day we argued some more on the phone. I hung up, then threw myself on the bed and cried.

Suddenly I felt the strangest feeling down below. It felt like an electric current was drilling a hole into the left side of my labia. This went on for about a minute or two, then it started to itch. It itched so intensely that I had to scratch. So I scratched.  And I scratched some more, until it started to burn. Panicking, I ran into the bathroom and squatted over my hand mirror. It looked a little red where I had been scratching, but other than that, I could see nothing there. The burning feeling continued for the next couple of days. It was especially bad when I went to the bathroom. I confided in my best friend Ruth*, who was very knowledgeable about medical stuff. She said, “I wouldn’t worry about it. It’s probably just a yeast infection. When you get your period, it’ll wash it right out.” I got my period a couple days later and prayed it would go away.

Meanwhile, I went to see a doctor at the HIP clinic and told him my symptoms, which were mainly burning during urination. Without even examining me, the doctor told me I had a urinary tract infection and prescribed an antibiotic. I couldn’t see the gyn due to my period, but I made an appointment for the next week.

The next week my period ended, but the burning feeling did not go away. The gyn asked me, “Where does it hurt?” “Everywhere,” I responded, for indeed it felt like the pain had spread to my entire pubic area. He examined me and pushed on my abdomen.  “You have PID. Pelvic inflammatory disease,” he declared. “What is that? How did I get it?” I asked, but was not given a clear answer. He prescribed different antibiotics to me and I began to take those.

The symptoms went on for almost three weeks. I got used to the burning sensation, except when I had to pee; then it became almost unbearable. I took to rinsing myself off with a washcloth every time I finished urinating.

Finally, on the Friday before Memorial Day weekend, I really started to get worried.  I was supposed to go away for the long weekend and I didn’t want to wait until Tuesday to get it looked at again.   called the clinic and told them that the antibiotics were not working and the pain was still there. "Have you had any sexual contact?” asked the voice on the phone. “Are you kidding? I’m in too much pain to even think about that,” I responded. “Come in right away,” she ordered.

Making hasty excuses, I left work in the middle of the day and ran to the clinic. Where does it hurt?” asked the gyn, as I lay on the examination table. “Everywhere,” I answered, “Mostly on the outside.”  “Oh, on the OUTSIDE!” he exclaimed with a hint of attitude, as if I had been withholding information from him.  He called the nurse in and together they both stared between my legs. “I see a tiny lesion,” he announced. Oh, oh, I thought to myself. That can’t be good. The doctor told me to get dressed and go to his office. Nervously I sat down in a chair across from him.

“AIR-pez.  Airpez.” It took me a full minute to decipher the doctor’s French Haitian accent. When I finally realized he was saying “herpes”, I felt my heart sink to the pit of my stomach. “Are you sure?” I asked. “Yes, I am certain,” replied the doctor.  “I see this kind of thing all the time.” (Then why didn’t you notice it the first time I came here?  I thought to myself.) Instead I asked, “What is the incubation period?” worriedly thinking back on whom I could have possibly gotten it from. The doctor completely misunderstood my question. “No contact, no contact!” he shouted. I was stunned that he assumed I was asking how soon I could have sex! That was the last thing on my mind at that moment. Instead, my mind was racing over what little I knew about herpes: the only thing I knew for sure was that it was incurable.

I began to cry. The doctor’s reaction to my tears? “Don’t cry, or I will cry too.”  Then he wrote me a prescription and handed it to me, and that was it. No pamphlets, on information, no referrals to a support group or a herpes hotline, nothing. The prescription was for Zovirax cream, which I later learned was practically ineffective. Why the doctor didn’t prescribe Zovirax pills is a mystery to me. Perhaps the insurance company was trying to save money, or perhaps he was so behind the times that he didn’t even know about the meds.

I left the building, walked outside, and crossed the street to the pharmacy. I felt dazed and numb. I remember the fleeting wish that I would be hit by a truck right then. I entered the pharmacy and handed the prescription to the girl at the counter. As I waited, I racked my brain trying to figure out where this had come from and who had given it to me.

How could this have happened to me? ME, Miss Safe Sex? Me, who had waited until two months before my 20th birthday to have sex? Me, who was always so careful, even during oral sex? Me, who always insisted on using a condom, except for one time back in 1990 with a guy I had a crush on, and the 3-month period in 1989 when I was on the pill and living with my then-boyfriend Fred*. Could it possibly have been dormant for that long? Something didn’t make sense.

Finally my prescription was ready. The girl handed it to me and said, “Have a nice weekend!” That almost set me off crying again. What the hell did she mean by that? Was she being cruel and sarcastic, knowing full well that I would not have a nice weekend? That I would NEVER, EVER have a nice weekend again? Or was she just simply repeating a standard phrase that management required her to say to all customers? Either way it shock me.

Somehow I made it back to work and made it through the rest of the day. The minute I got home, I began to cry. In tears, I called the guy I had a date with that night and said, “I have herpes. I can’t see you anymore,” and I hung up the phone. He did not call back. Then I called Fred, an ex-boyfriend whom I was still friends with, and he came over right away. He started going through the phone book to find information and help for me. He found the number for New York HELP, a herpes support group. I called and got a recorded message saying that no meetings would be held the entire summer. I hung up in disgust. (Years later when I became Coordinator of New York HELP, that was one of the first things I vowed to change.)

I called my best friend and told her what was going on. It turned out her old roommate Dee* also had herpes. She put me in touch with Dee, and she and I stayed on the phone for two hours. It felt good to talk to someone else who knew what I was going through, but it also depressed me even more because Dee herself was depressed. She had had herpes for two years and was still not coping well. It did not give me much hope, although she did tell me that she’d had some good experiences with men she’d dated who were accepting.

As Dee and I compared symptoms, she seemed puzzled. Mine were different from hers. “It sounds like you don’t have it,” she said. Both she and I became convinced that my doctor had been incompetent and that I was possibly misdiagnosed. She offered to take me to the public STD clinic on Tuesday morning.

I barely slept for the next 24 hours. My friends were on a “suicide watch”; they were afraid to leave me alone. When Fred left, a friend from work came over and spent the night on my couch. When she left in the morning, Fred came back and spent the day with me. Looking back, I am grateful that I did not suffer in silence and that I was able to reach out to my friends and confide in them. And they were there for me…well, most of them.

Still, I thought my life was over. My body was still living, but I felt like the rest of me was dead. I thought I would never have another relationship again. I thought no one would ever love me. I thought I would never have sex again. I washed my hands and clothes frequently and took showers, but I still never felt clean.

I asked the same question over and over again in my mind: “Where did this come from? Who gave this to me?” I could count the number of times I’d had sex that year on one hand. My live-in boyfriend Jay and I only been intimate with each other once or twice that entire year. In March I’d had a fling with Mike*, an old flame from back home in PA. The week after Jay and I broke up and he moved out, I’d had a one-night stand, my first ever. I’d used condoms with all three men.

Naturally my first suspect was the one night stand. After all, he was a stranger and I had been a bad girl for doing something so immoral. How could I have done something so stupid? I deserved to get a disease from something like that!

The only number I had for him was a voice mail number in Florida. I left a brief, harsh message telling him to call me back. To my surprise, he called me back an hour later. “I just found out I have herpes,” I told him. “I think it came from you. Why didn’t you tell me you had it?” He denied having anything and then became angry at me. “Why didn’t you tell me sooner?” he said. I told him I had only just found out, and besides, I hadn’t wanted to bother him before. Both of us calmed down, and he assured me that he did not have any STDS that he knew of, he got tested often for his job as an EMS worker, and that he would get tested again first thing on Tuesday. Then he asked me if I had been with anyone else. I told him nobody except one person two months before that. He seemed worried that I had gotten it from someone else and possibly passed it on to him! The more I talked to him, I became convinced he didn’t have it, and that I might not have it either. He promised to call me on Tuesday.

Resolving to get my mind off of this, I went to visit my friend Mary Ann* for the long weekend as planned. Coincidentally, Mary Ann was also the ex-girlfriend of my old flame Mike, and was still good friends with him. I told her everything. She was very sympathetic, and told me that she herself had had genital warts, so she understood how I felt. She also did me a huge favor by phoning Mike for me while I listened on the other extension. After some obligatory small talk, she blurted out, “So, Mike, do you have any STDS?” I had to cover the receiver to keep from laughing at her bluntness. Of course he denied having anything, yet I was grateful to her for speaking out when I was afraid to.

Early Tuesday morning I went to the STD clinic in Manhattan. Sitting in that waiting room for hours made me feel like I was in the dregs of society. I looked out of the corner of my eye at the other people around me and wondered what they had. Here I was judging them, but now I too was one of them. When my number finally got called, I was pleasantly surprised by the kindness and efficiency of the doctor. I told him the whole story, then he examined me. He told me that he could see no signs of herpes, but that I did have a raging yeast infection due to the many antibiotics I’d been taking the past few weeks. He took samples of my blood to test for other STDS (gonorrhea, syphilis, HIV) and also tested me for chlamydia. He told me that the public clinics did not do blood tests for herpes and there was no way for him to test me for it without symptoms. He then gave me some medication for the yeast infection and sent me on my way, with a follow-up appointment in two weeks.

When I got home, I called another number that Fred had found for me. It was the number of the Herpes Advice Center. The woman on the phone gave me the most concrete, helpful information so far. She told me that there was a brand new blood test called the Western Blot that would tell me whether or not I had herpes, and whether it was Type 1 or Type 2. She warned me that it was very expensive and that it was only done by one lab in Seattle. I didn’t care; I wanted that test!

I made an appointment and came in that same afternoon. I met with Lucy, the Physician’s Assistant, who explained a little more about the test to me. She said the Western Blot looked for antibodies in the blood, and that if I had only recently contracted herpes, I probably would not have any antibodies, and the test would come back negative. If that happened, then they would ask me to come back in two months and retest to see if any new antibodies had formed since then. If the second test came back positive, then it meant that I had indeed just contracted herpes. If it came back negative, then it would prove I had been misdiagnosed.

After the test, she told me briefly about some of the other medications for herpes. She was surprised that my doctor had only given me the Zovirax cream. She told me it didn’t work very well and that the Zovirax pills were better. She also told me about two new medications: Valtrex and Famvir. She was especially gung-ho about Valtrex and said it was much stronger than the Zovirax. She said it didn’t sound like I needed it right now, but if the herpes symptoms came back, she would give me some. Then she gave me a video about herpes and told me to expect the results in two to three weeks. I walked out of that office feeling the first glimmer of hope I’d had so far.

In the first few weeks after my diagnosis, I called ASHA’s National Herpes Hotline several times. Yes, they told me, it could possibly have been dormant for up to ten years. Ten years? Was I supposed to go back to each one of my old boyfriends from the past ten years and confront them? The prospect was daunting.

Then another one of the phone counselors dropped a bombshell on me. Yes, she said, it was indeed possible to contract herpes despite condom use. WHAT? I was shocked and incredulous. I had always thought I was having safe sex. I had read about AIDS and knew it was transmitted through bodily fluids. But herpes, they told me, was a skin disease that was transmitted by skin-to-skin contact, not by fluids. Since a condom didn’t cover all of the skin of the genital area, I had been at risk.

How could I have known this? Why didn’t anyone ever talk about it? Why wasn’t there a warning on the back of every package of condoms? I became angry and briefly thought about suing the condom manufacturers. Today there is more awareness of the fact that condoms don’t offer 100% protection against all STDs, but it is still not common knowledge in the general population or even in the medical community.

My Western Blot test results came back in mid June. I was negative for Type 1, but the test showed an “atypical reaction” for Type 2.  What did this mean?  Lucy, the P.A., said that it could mean that my body was in the process of forming antibodies to the herpes virus, or that something had gone wrong with the test.  either way, she said, the test was inconclusive and I’d have to take it again in August.

Meanwhile, I told my former live in boyfriend Jay what was going on and urged him to get tested.  He seemed completely unconcerned and refused to get tested. Then to add insult to injury, he told his new girlfriend and his parents that I had herpes, carefully omitting any mention of the fact that it might have come from him! (It took me eight months and a mediation session to finally convince him to get tested. He was negative.)

Around the same time, Craig* (my one-night stand) called to tell me that his test results were negative. Not only that, but he actually mailed me a copy of the results a few weeks later! I thought it was a very considerate, classy thing to do, and it really taught me a lesson about humanity. Jay, whom I’d been with for four years, didn’t care enough about me to get tested, but a guy I barely knew did care! Sometimes a stranger can behave more honorably and responsibly than someone you have known for years!

That entire summer I was in limbo. I didn’t know whether I had herpes or not. I was hyper-vigilant to the point of hypochondria and examined my body constantly, running to the doctor when I felt the slightest twinge or saw the slightest blemish or pimple. Still nothing that resembled a classic herpes sore, blister or lesion ever appeared. As the summer wore on and no other obvious herpes symptoms recurred, it became easier to convince myself that I did not have it.

I tried to move on with my life. I started dating a nice man named Ernie*. He treated me like a queen. On our third date, I started to get worried that he would expect me to get physical with him. I started crying and told him I couldn’t see him anymore. He demanded an explanation from me, so I told him, in tears, that I might possibly have herpes, I wouldn’t know until August, and I was afraid to possibly pass it on to anyone and was afraid of how fast things were going with us. I was completely hysterical: it was a classic example of how not to tell a partner.

Surprisingly, Ernie took it well. He thanked me for telling him and told me that he occasionally got cold sores on his mouth. He said he would still like us to see each other and would not pressure me to go any further in the relationship. When he left, I was sure that was the last I’d hear from him.

To my surprise, he showed up at my door the next day with a beautiful basket of goodies from The Body Shop. “I did some reading about your condition on the Internet,” he said. “I read that stress can aggravate it, so I got you some stuff to help you de-stress.” Inside the basket were little bottles of bubble bath, candles, aromatherapy, lotions, etc. I was very moved.

Ernie and I continued to date throughout the summer. I refused to let things get sexual, partly because I was afraid of giving him herpes, but also because I wasn’t sure I was really attracted to him.

Meanwhile, I made occasional weekend trips to PA to see my friends, and I resumed my fling with Mike*. I didn’t talk to him about the herpes. After all, I rationalized to myself, if I didn’t have it, there was nothing to worry about, and if I did have it, it most likely came from him, so there was still nothing to worry about.

In August I went to get re-tested for the Western Blot. Three weeks later, the doctor’s office called me at work to give me the results. I was positive for Herpes Type 2. Looking back now, I am outraged at the lack of judgment the doctor’s staff showed. To give someone bad news of this magnitude over the phone – and at work – is inexcusable, in my opinion.

At that point in my life I became severely depressed. I could no longer be in denial: I had genital herpes. I called things off with Ernie because I didn’t want to put him at any potential risk if the relationship were to become more serious.

I also realized that I couldn’t keep Mike in the dark anymore. I summoned up the courage to break the news to him over the phone. I was terrified to tell him because I thought he’d be angry and judgmental. Surprisingly enough, he took the news well. He said, “That doesn’t change the way I feel about you.” Wow, I thought to myself, I didn’t know he had feelings for me!

Then he said, “It’s no big deal. I was with two girls in college who had it.” After hearing that bit of information, I became convinced it had come from him. I told him he might have it even if he had no symptoms. I asked him to get tested, but he refused, using the excuse that he was afraid of needles. Still, I figured it didn’t really matter as long as we were together.

A few weeks later, he dumped me for his new housemate, Marina*. She was someone I had known for years; a member of our social circle in Philly.

I became devastated. I decided I could not go on living when there was nothing to live for, so I started planning my suicide. Coincidentally, the day I had chosen as my last on earth happened to be the same day that the O.J. Simpson trial ended. Everyone at work was arguing about the trial, but I walked around in a daze.

After work I went to the lobby of my old school. I sat down and wrote out a suicide note and letters to all my friends and to Mike, who had just dumped me. After I finished, I took the elevator to the 11th floor, where I remembered there were really big windows that opened up wide.

At this point my memory is really hazy. I remember opening the window and sitting there for what seemed like a really long time. Then some people came by and I got out of the window. I honestly can’t remember if they pulled me out or if I climbed out on my own.

I left the building and walked over to my therapist’s office. Luckily she was working that night. She took one look at me and told me to wait. When she finished up with her patient, I told her what happened. She decided it was in my best interest for me to check myself into the psychiatric ward. She called my parents and told them what was going on, then walked me over to the hospital and had me admitted.

I spent one night there. The hospital was filled to capacity, so I had to sit in the brightly lit hallway the whole night. Sleep was impossible. I read a book and some magazines, and wrote in my notebook. It was an uneventful night, except for a hallucination I had – a vision of Nicole Brown Simpson. For a few seconds I saw her reach out to me and say, “Pray for me.”

In the morning my parents drove up from Philadelphia to get me. The hospital released me, and I spent the week back home with them. I’m sure they thought they were doing the right thing by taking me out of New York, but in fact it was a difficult environment for me, knowing that Mike and his new girlfriend were a mere few miles away from me!

When the week was up I went back to New York, back to work and back to therapy. Although the immediate crisis had passed, the depression did not. I struggled for months afterward. I entered into a series of short-term relationships and encounters that all started with a quiver of hope but ended with me feeling rejected, lost and empty. I disclosed my herpes status to my lovers and sex partners, and they seemed to be OK with it initially, but they never stuck around. In retrospect, I see that my attitude about herpes was influencing things in a negative, self-defeating way. These men were picking up on my issues and they were scared off.

Finally, in the spring of 1996, two things happened that helped to slowly change my course. The first thing that happened was that I received a spiritual awakening. It was not earth-shattering or anything, but it was a start. The second thing that happened was that I finally admitted to myself that I wasn’t coping with having herpes and I couldn’t handle it on my own. I needed help and support from others with herpes. So I decided to go to a support group meeting.

My very first New York HELP meeting was a lecture by a physician. I was nervous about going, but the minute I walked through that door, I knew I had found my home. Everyone was kind and friendly and eager to talk to me and listen to me. Everyone had their own herpes stories which were so different from mine, yet so similar. I found that talking to these people was better than talking to my own doctors because they were much more informed about it. Through their own experiences and from doing their own reading and research, the other group members were able to answer several questions I had that no one else (including my doctors) had been able to answer up to that point. After the meeting, a group of us went out to a bar and hung out and talked for hours. I am still friends with some of those people to this day!

After that first wonderful experience, I started attending the weekly Herpes Recovery Anonymous (HRA) 12 step herpes support group meetings and made several friends from the group. I looked forward to the Thursday night meetings: they were the high point of my week.

I also signed up for a ten-week therapy group in the summer of 1996 run by Dr. Gerri Hirsch, a psychologist who specializes in herpes. The group was very helpful. She brought in a doctor from the Herpes Advice Center to talk to us, and also gave us tips and suggestions on how, when and where to tell a partner, and even had us do some role-playing, so that we could practice proper disclosing technique.

I learned a lot about coping with herpes, but my recovery process was only just beginning. I still had another rough year ahead of me.

In March 1996 I went to Los Angeles for a vacation and met a very special guy named Tom*. He and I developed a very intimate phone relationship over the next few months. I planned to move to L.A. and stay with him until I found a job and a place to live. In the summer of 1996 I quit my job and moved back to suburban Philadelphia with my parents. In October, I went out to L.A. the weekend to see Tom, and also for a job interview at another friend’s company. While I was out there, Tom and I had a horrible argument the night before my interview, which ended in him locking me out of his apartment and driving off. I had no choice but to try to sleep in my rental car, until his landlord took pity on me and let me into his house at 4AM. I spent a few hours sleeping on the landlord’s couch, then I took a shower and went to my interview, which, as luck would have it, got canceled due to illness. I flew back to Philly with the distinct impression that God did not want me to move to California.

I cried for a week. Tom and I never spoke again. (I still hope and pray that someday we’ll get back in touch so that I can have some closure.)

Two weeks later, as luck would have it, a former co-worker of mine fixed me up on a blind date with her brother, who had also just moved back to Pennsylvania from New York.  Ralph* and I hit it off right away. He was six-foot tall, blond, handsome, intelligent and funny.

After about a week, I started panicking about having to tell him about the herpes. One night his sister (my friend) came out to dinner with us, and she and I had a heart-to-heart talk in the ladies room. She was thrilled that Ralph and I were dating, and I told her how nervous I was about telling him I had herpes. She confessed that she had already told him, and that Ralph’s response was basically to tell her that it was none of her business and that it should have been up to me to tell him! She then asked if I was mad at her, and I said that normally I would be, but that since Ralph had been OK with it, that I was actually relieved that she had told him. However, this still left me with the problem of how to bring it up, since I was not supposed to know that his sister had already told him.

That night I stayed over at his place, and we started fooling around. I said that I was nervous because there was something I had to tell him. He said, “I have something I have to tell you first.” I figured he was going to tell me that his sister had already told him about my problem, but instead, to my surprise, he said, “I have herpes.”  “WHAT?” I screamed! I couldn’t believe it!  I was so happy! It was like a fantasy coming true! “Just one thing,” Ralph said, “Please don’t tell my sister I have it. She has a big mouth and she’ll tell my whole family!” We both burst out laughing, and then had really hot sex.

Unfortunately the herpes (and sex) alone was not enough to keep the relationship going. It turned out that we did not have much in common besides herpes, except that we both liked to sit in the front row at the movies. His attitude about it was completely different from mine. He had never been rejected for it, and had never even used condoms with his partners. When I told him about the HRA support group and Dr. Hirsch’s group, he ridiculed me, saying that he didn’t understand why anyone would need something like that.

We broke up two months later, on New Year’s eve, and I moved back to New York in January 1997.

A few months after I returned, I found out much to my dismay that the weekly HRA group had lost their meeting space at the church. I couldn’t bear the thought of the largest city in the U.S. no longer having a weekly meeting. Where would people go who were in my situation? I got myself an AA Alanon meeting book and started calling all of their meeting locations to see if they had space for us. As luck would have it, the fourth place I called (Cabrini Medical Center) gave us a free meeting room on Wednesday nights.

Four of us from the original group worked hard to revive the group. One by one the other three dropped out, but luckily the new people started to get more involved in helping out.

Volunteering to help run the support group turned out to be one of the best things I did -- for myself as well as for others. Helping others pulled me out of my depression and self-pity, and it made me feel good to know that I was giving back to the group that had given so much to me when I needed it.

In May 1997 I met a guy who also had herpes. We met on a ”herpes cruise”, a social event organized by Lenny Sobel, publisher of the H.A. newsletter, SLN’s precursor. Both of us were glad to be with someone else who had herpes, and not having to worry about giving it to each other was a relief. During our year-long relationship, we were NYC’s “herpes poster couple” and were a fixture at almost every support group meeting and social event.

After we broke up in the summer of 1998, I became involved in a relationship with someone who did not have herpes. He was very accepting of it and liked me for who I was. We stayed together for a year-and-a-half. He did not contract herpes from me during the entire relationship, although we did have a bad scare at one point that turned out to be a false alarm.

Both of these relationships, although not perfect, helped me cope with having herpes by reminding me that I was still attractive and lovable.

Since my original diagnosis, I have learned many things about herpes, from both a medical and emotional/social perspective. I learned that there is still love after herpes, and, perhaps more relevantly, there is sex after herpes. I learned that I am still the same person I always was: I still look the same, I still have the same sense of humor, I’m still intelligent, caring, and fun to be with.

Physically speaking, it’s been a mixed bag. On the one hand, I am very lucky because I seem to have a very mild strain. I hardly ever get outbreaks. In fact, I’ve only gotten two major outbreaks since the initial one over seven years ago. On the downside, in the fall of 1996 I developed a chronic condition called Vulvodynia (vulvar and vaginal pain) which I believe is due to nerve damage from post herpetic neuralgia. Like the herpes, it was misdiagnosed several times. I didn’t find out this condition had a name until four years later. Vulvodynia makes sex painful. It also makes it difficult to wear jeans, panty hose, tight pants and certain types of underwear, or to sit for long periods of time. That bothers me more than the herpes, but I’m learning to cope with that too.

In 1999 I was diagnosed with HPV and level 3 cervical dysplasia. I had 2 LEEP surgeries to remove the pre cancerous tissue. (I will tell my HPV story in more detail at another time.)

I am not going to lie and say my life is perfect. I have had problems with relationships and I still struggle with chronic depression and anxiety, just as did before I got herpes. But when problems do come up, I do my best to handle whatever comes my way, and I am very lucky that I have places to turn to for support. My support system includes many good friends, namely from the herpes community and the spiritual community I belong to.

What keeps me going now is actively working to help others with herpes and HPV and to educate people and erase the social stigma associated with this virus. I am a Coordinator of both the New York HELP support group and NYC’s herpes social group, and I help to publish Silver Lining News. Once a month I also chair the Herpes Recovery Anonymous weekly support group meeting. I also attend the monthly HPV support group meetings at Planned Parenthood in NYC. I also moderate yahoo groups for Herpes, HPV and Vulvodynia. I have made many friends in the global herpes community, both in person and on the Internet. I try to speak publicly about herpes whenever I can, because our silence has been part of the problem. I’ve been interviewed on TV and in magazines and newspapers as a herpes patient advocate.

It is my hope that there will be a cure for herpes in my lifetime, although realistically I am aware that it may not happen. But in the meantime, I will do whatever I can to ensure that the next generation of herpes sufferers are spared the pain, stigma, shame, embarrassment and medical ignorance that I experienced.

*Names have been changed to protect the innocent (and the guilty).

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