My Personal Herpes Story

gaylaMy name is Gayla and this is my personal story……..

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.

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6 Responses to “My Personal Herpes Story”

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  1. brokenmom says:

    Gayla, I do not have herpes, I say that first all the time, however my young daughter was just diagnosed with herpes 2, I would rather it be me. I see her pain, stress, sadness, confusion and as a mother it kills me. I have searched everywhere and continue to gather information for her. I love the websites, chats, however is there any place to find someone to talk with? I have tried all the numbers given, even the one on this site national helpline, no one ever answers, some are no longer in service. how does one go about finding a human voice to speak with? She needs that. Also, how do we volunteer to help others? Can I become a human voice to speak with? I would be more than happy to talk to people.
    another thing I can not find is someone like me – a mother who feels the pain a mother who feels she let her daughter down, maybe I could have done something, maybe I didn’t tell her enough about sex trans diseases,, I know there must be other mothers like me, I have yet to find that?
    Thank you for taking the time to read this.

    • Gayla says:

      Brokenmom, First, I am so sorry to hear of your daughters infection. Thanks for bringing the lack of updated numbers to my attention. Let me do some checking around for updated numbers and I will get you in touch with someone. I am usually around on any given day – it’s just the last week through the coming week that we are so busy with a kid getting married and balancing our time for a vacation with our four kids working us into their busy schedule. I have your email through your comment here – I will find something for you and email you privately. Hang in there – I know it’s tough, but don’t beat yourself up. In time, herpes will be a simple bump in the road, you’ll see. I thought I would die, in my earliest days – now I realize there were much bigger things to fear. My thoughts are with you both.

      • brokenmom says:

        Thank you Gayle for your response, how nice that was to see. I know how busy life can be, congrats on the wedding, what a happy time. You are a beautiful inspiration. I will share this with my daughter. Happy 4th, thanks again
        Brokenmom (Sherri)

        • Gayla says:

          Sherri, I’m glad I could be of some help. Please let your daughter know I am here if she needs anything at all. I’m always available for support and advice. Just let her know, she will be fine and she is SO FAR from alone.

  2. ihaveittoo says:

    Dear Gayla,
    Did you find out if you have type 1 or type 2? I was recently diagnosed with HSV-2. I am 27, Female and your website has been very helpful.

    • Gayla says:

      Thanks for commenting. I did take a test at the Indy Gathering several years ago, just as a test specimen for others who were curious. At that time, I did find that I have type 2. It was something I already knew though. When you consider that each type has their own site of preference – Type 1 being oral region and type 2 being the genital/boxer short region – based on the number of outbreaks and severity you experience, you can figure out your own type. At least in many cases. There are some who experience mild to no outbreaks at all so that makes it a little more difficult to determine based on the symptoms and severity – but usually, you can figure it out on your own. Hope this helps.

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