by Curtis S. Phinney, Sc M; Rockville, Md March, 2004
My initial diagnosis for genital herpes took place in December 1993. The symptoms of my primary episode looked like acne to me at first. By the following weekend a cluster of lesions had formed that defied denial and was frighteningly unfamiliar. An appointment with my family doctor was a priority for the following Monday.
Almost immediately upon seeing the sores on my genitals, my doctor said “That’s herpes. I know you don’t want to hear that, but I’ve seen a lot of this.” I stood in stunned silence. Subsequently, my doctor took a culture, and explained the existence of antiviral treatments. Shocked, I said that I was an unlikely candidate for genital herpes infection. I told him that I was in a relationship that I had assumed to be committed and monogamous. My doctor told me that he had heard variations of my story many times before. Shaken, angry, and frightened, I left the office in a state of dazed disbelief.
I had to cope with a shattered self-perception of my sexuality. I felt dirty, unlovable and untouchable. I had been divorced some years earlier, and had been active in the tumultuous world of adult dating in metropolitan Washington. Suddenly, I felt that a successful outcome was now impossible. The certainty that I was now “damaged goods” would no doubt prevent me from ever having a mutually satisfying relationship with anyone again.
HOW did I start my recovery from genital herpes? Honesty, an acceptance of my condition and the associated responsibilities to myself and others. Openness, the release of anger and resentment, allowing me to become teachable. Willingness, a deliberate effort to actively participate in my own recovery. The willingness to participate in my own recovery was fundamental in breaking the emotional cycle of stress-induced outbreaks, as well as preparing me for telling another person that I had herpes.
Telling a potential sexual partner was one of the first and most difficult problems that I had to face. I had to face the possibility of rejection, social stigma, and vulnerability. Effectively dealing with this challenge, however, started me on the path to recovery. Telling a potential sexual partner was important for several reasons. First, the chance of transmission to somebody else was considerably lower if we were both aware of the condition. In addition, I was relieved of the stressful burdens of fear of discovery, guilt, and secrecy. My partner was allowed to accept a degree of responsibility by making an informed choice and by accepting some of the risk associated with transmission.
I soon saw that I had a considerable amount of control over how somebody else would receive the news. Self-acceptance of my condition was of paramount importance for acceptance by others. Emotional trauma over herpes infections is quite as contagious as the virus itself. HELP groups were very effective in the development of my personal information base. A well-informed, confident delivery can lend considerably to the chances of a positive response by the other person. Becoming informed about herpes before telling a partner was important because I could certainly expect questions! I also had to be willing to allow time for others to adjust, just as I had needed time to adjust myself. With some form of sexually transmitted infection affecting more than one in five U.S. adults, many people are delighted to discover a fulfilling relationship in spite of one or both partners having some sort of STI.
I resisted my physician’s first efforts to prescribe daily antiviral therapy, based in part on my perception that this treatment regimen was reserved for the worst cases. However, I was to discover that the regimen was both easily tolerated and very effective. Stressful events that would surely have triggered an outbreak earlier passed without any indication of new activity. Suddenly, I felt once again at liberty to pursue life goals and activities that I had previously considered too risky. The physical cycle of stress-induced outbreaks was broken at last. Almost immediately, the emotional cycle, i.e., causing stress by worrying about outbreaks under stressful circumstances, was broken as well. I felt like I was in control of my life again, and the connection between the self-perception of my own sexuality and clinical symptoms of genital herpes was broken.
Suppressive therapy during my first year allowed me to develop coping mechanisms without the anguish of repeated, severe, or unexpected outbreaks. The temptation to deny the existence of the condition or lie to partners was greatly diminished. In addition, the period of highest symptomatic and sub-clinical viral shedding passed, reducing the chance of traumatic transmission to a partner. While valid arguments might exist for continuation of a conservative approach to using suppressive therapy, the undisputed existence of hundreds of thousands of new cases every year underscores the urgency of developing a new, proactive approach to the management of this disease. I do not approach this type of treatment as something that I have to do forever or for the rest of my life. I take suppressive antiviral therapy, just like other aspects of recovery with genital herpes, one day at a time.
As a member of the local HELP group, I heard stories from other people with herpes regarding their infection, management strategies, and relationships. It soon became apparent to me that the secrecy and stigma associated with genital herpes was of little benefit to us. This burden of shame and secrecy prevents us from being able to be honest and open with sexual partners. As a result of these personal observations, I volunteered to join a small group of individuals who were willing to break their anonymity with regard to having genital herpes. Some time later, I was contacted by the producer of a nationwide talk show and asked to participate in an episode based on “STD’s other than AIDS/HIV.” The message that other HELP of Washington DC group members and I tried to pass on was simply that there is help and information available to herpes sufferers, and that information and support had enabled us to enjoy life, love and relationships after herpes. The interest that the show sparked was remarkable. There is an unfulfilled demand for information and support that exceeds the resources known to the general public. When I characterize the condition to a lay audience, I always emphasize five key points. They are that genital herpes is Serious, Chronic, Contagious, Preventable, and Treatable.
As I have traveled along the journey of recovery with genital herpes, I have found the experience characterized by a variety of choices. We are almost immediately called upon to choose one of two paths. One is the acceptance of the condition and the associated responsibilities. This predisposes us to developing the honesty, openness, and willingness necessary to enjoy life, love and happiness after genital herpes. The other, suppression and denial, shuts us off from growth, information and support. New people can be drawn into this vicious cycle of bitterness, resentment, and anger by the transmission of the virus. Promoting acceptance and honesty, using antiviral therapy where indicated, and finding social support and information positively affected not only my recovery, but the health and well being of others as well.
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