Several years ago I learned that my husband was having an extramarital affair. I began working aggressively toward a divorce. Needing to know, in my mind and heart, that I would be able to provide for our twin boys, then age 3, and myself. Following three months of bartending, I was prepared to take a stand and I asked my husband to leave. That night, we had a terrible fight, complete with physical and emotional abuse.
As soon as my husband had moved, I made a doctor’s appointment to be tested for sexually transmitted diseases. The relief that poured over me when I heard that the results were negative or inactive was overwhelming. I had escaped my marriage with little more than a bruised ego and a bout with cervical dysplasia two years prior.
My life would go on and did.
I met a wonderful local man, whom I would date for a year and half. I found myself in a great career as a buyer for a convenience store chain. This was just the antidote for what my emotions needed at that time. My relationship with this man was one that eventually grew intimate. For the next year and half I would live my life as normal. I believed myself to be disease free, battling only recurring urinary tract infections time and time again.
June of 1999 would put an abrupt end to that belief.
I awoke one summery June morning and prepared for a fun-filled road adventure to a race being held in Ohio. Being the feminine sort that I am, I used some feminine deodorant products that particular day, as it was going to be sizzling hot. While at the race, I felt pains like no other. At the risk of being too blunt, I felt as if I was urinating razor blades. At the time, I was convinced that I was having an allergic reaction to the products I had used earlier that morning.
First thing Monday morning, I called my doctor and explained the physical symptoms I was experiencing. He prescribed a steroidal cream to alleviate the allergic reaction he believed it to be. Three hours after applying the medication, things worsened drastically. My urinary tract closed off entirely, and even more intense pains were consuming my entire body.
Tuesday morning I phoned my local Planned Parenthood where I could be seen right away, thanks to a longtime friend who worked there. I drove to their office only seven miles away, but if felt more like a thousand. Upon examination the physician told me that I had herpes. I sat there in disbelief as I had been tested a couple of years prior and the results were negative. The only explanation, in my mind, was that I was being cheated on yet again.
As soon as my prescription was filled I returned home. I found myself searching for answers via the Internet. I needed to know how to stop the pain. I couldn’t care less about the diagnosis at this point; I just wanted the pain to stop. I found a chat room with real people; people who were living with the virus and who truly knew the pain that I was feeling.
After a great deal of reading, I phoned my doctor to ask how this was possible. It was then that I learned that standard STD tests are NOT complete. The tests only determines infections of common STD’s that are cured in a week with a pill. They do NOT test for herpes, HPV or HIV for that matter.
I was LIVID! That weekend, I spent much of my time behind the computer, I emailed every member of my state’s general assembly, Senators, Governor – everyone who had contact information to be found.
That weekend changed my life! I became an advocate – I became a warrior!
As months passed I found myself very active in support chat rooms for others with herpes. By helping those who were newly diagnosed and as afraid as I once was, I found a way to “heal” myself, both mentally and emotionally. The founder of a major online organization observed my efforts, which was the largest and most comprehensive online social resource at that time for people living with herpes, humanpapilloma virus (HPV) and other STDs. In July of 2000 I was asked to join their team, whose mission and goal was to educate all people affected by STDs and to let them know that it is possible to live a productive and fulfilling life.
As an advocate, I was called upon by major pharmaceutical companies to become a spokesperson – I was flown all around the country speaking to panels of healthcare providers – letting them know what it’s like – what it was like to think you were getting a test when you aren’t.
Dr. Ruth Westheimer, the famous sex doctor called upon me for statements in her book and much more. My story was featured in Marie Claire, Fitness Magazine, on local news syndicates. I was recognized in airports and out in public. Anyone who would listen, I was ready to educate them on STD’s, proper testing and how these infections are not just for the promiscuous – If it could happen to me, it COULD happen to anyone!
The community, HELP Groups and Social Support Groups helped me to gain the knowledge that I needed to empower myself to take control and live a productive life. Everyday I, and many others in the H World, try to help others with STDs know that support is readily available, and we help them to become educated and live fulfilled lives.
The most important message that I could give anyone who might be reading is this: realize that you are no less a human being than you were before you were diagnosed with herpes or HPV. You simply have a medical issue that needs attention. Everyone in today’s society has issues. Herpes is no different. With proper precautions, herpes can be controlled and you can minimize (though never eliminate) the risk of transmitting to a potential partner. Emotional support and medical knowledge is most important and will help you to make informed decisions affecting your life.
Herpes is unfortunately and unnecessarily stealing the quality of life from many individuals in the form of social stigma and fear. This virus will only become a self-proclaimed prison if one allows it to become so. I have chosen, along with the community of which I have become an integral part, to allow herpes to become only one of many defining factors, of who I’ve chosen to be.