September 3, 2015

What is it Like to Have Herpes?


shadow lady walking night dark woman

Love yourself first and everything else falls into line.” ~ Lucille Ball

Nearly seven months ago, I reached a major turning point in my life.

After a year of serious contemplation, I decided to come out to my family, friends, readers and the entire world, that I have herpes in a YouTube interview, with the creator of the Herpes Opportunity community.

Since then, I have been wanting to do a follow up story on my experiences after coming out of the closet, which I had been hiding in for the past four years.

Now that I have publicly disclosed having the herpes virus, I have a whole new perspective on life.

Although it was scary for me to share my greatest vulnerability, I knew in my heart it was one of my purposes in life to advocate for acceptance and awareness. Also, I wanted to show other individuals living with this virus that it wasn’t the end of the world.

Often times people will ask me, “What is it like to have herpes?”

While I cannot speak on behalf on the other over 25 million Americans who have HSV2, I can share my own personal experiences of what it is like to have herpes.

On a side note, according to the Herpes Opportunity website, “The amount of Americans with genital herpes virus is millions more than the entire population of Australia (21.5 million).”

Over the weekend, as I was scrolling through my Facebook, I came across a photograph of a girl holding up a sign with the words, “I hope she gives you herpes.” Although it wasn’t personal, the post was shared by a loved one who knows that I have herpes. It stung.

No matter how comfortable I am in my own skin, hearing herpes jokes bothers me. I may have herpes, but I would never say nasty things about another human being.

“Herpes is karma.”

“I caught herpes watching Pit Bull and Rhiana on the Super Bowl.”

“I hope she gives you herpes!”

“What happens in Vegas stays in Vegas. Unless it is herpes.”

“Eeeewww. Herpes is gross.”

Sadly, I have heard all of these from the people I love in my life. I know they are not being hateful, it is just shows you how strong a stigma is attached to having a sexually transmitted disease. It is no wonder so many people live in fear of others finding out that they have the herpes virus. Who wants their loved ones to think they are as disgusting as this false stigma?

While some may find the “I Hope She Gives You Herpes” photograph funny, I will tell you exactly why I don’t think it is funny.

I would never wish herpes on anyone. It can be devastating, lonely, filled with rejection, painful and paralyze you with fear. Not so funny anymore, now is it?

Imagine sitting on the receiving end of a herpes joke and knowing the secret that you are carrying inside. What will they think of me? Will I ever find someone who will love me? Will I be alone forever?

I can’t tell you how many times I have sat through movie trailers with a new date and a stupid herpes joke fills up the screen. While he is laughing along with the rest of the theater audience, I am absolutely mortified that he will either laugh at me or run for the hills if he finds out I have herpes.

If I have one request, please think twice before you tell another hideous herpes joke. There is a one in six chance that the person you are telling it to may actually have the virus.

Guess what—of those one in six, 80 percent don’t even know they have the virus because they are asymptomatic. This is how I contracted the herpes virus. I was in a monogamous relationship with a man I was very much in love with. He didn’t know he had the genital herpes virus.

Ever since I publicly disclosed my herpes status, I have been overwhelmed with the amount of support I have had from friends and readers of the blog. It turns out, I am not the only one living with the herpes simplex virus. Handfuls of loved ones confessed to me that they too have lived with the shame and stigma of having herpes. Sadly, most of these beautiful people have never told a soul and their secret is safe with me. Many have shared their fears, loneliness, pain and journey after discovering their herpes diagnosis.

Trust me, I felt the same way too. I was afraid that I would never find the love of my life or no one would ever want to touch me again. I feared I was going to be a leper the rest of my life. I was so wrong.

By being completely transparent, I was overwhelmed with unconditional love by all the right people. No one should ever feel alone. Do you really want to be the source of sadness by embracing ignorance? What could you do to erase the shame?

I have had my share of rejections, but no one has ever been cruel. In fact, most people have shown be compassion, love and support. I have even dated men who didn’t care that I had a virus and understood that my awesomeness was not eclipsed by a cellular flaw.

Along the way, I have even educated many friends, family, readers and men I have dated on the importance of knowing your sexual health status.

Let me tell you from firsthand experience, most people are completely ignorant when it comes to sexually transmitted diseases, have not been tested recently or know that herpes is not on the standard std board and you must ask for a specific blood test.

I have dated men who decided to get tested and discovered they were already carrying the HSV1 or HSV2 virus. You could have even been carrying the virus for a decade, but just started to show symptoms. Herpes is a sneaky little virus. There is a good chance several of you reading this blog post is a carrier of the virus, but don’t know it because most people do not show symptoms.

As I posed the question earlier, “What is it like to have herpes?” I would like to share that it is nothing like I see in the fear mongering sex education lessons on the internet. I am just speaking from personal experience. I don’t experience frequent outbreaks, and when I do it is more of an inconvenience. I have had colds that were worse.

Recently, I decided to go on daily suppression medication, because one day I would like to be in a relationship and want to take all preventative measures.

Honestly, as the years pass, the less I think about my herpes. I have too many other things in life keeping me busy—more than a silly virus. Now that I am out in the open and everyone knows, there is less anxiety for me. If any date Googles Cicily, guess which video is at the top of the search engine? I actually feel relief that I no longer have to keep this a secret. It makes the hard conversations much easier. I wish I had known all of this along time ago, but you live and learn. I hope that my honesty and openness will give you insight.

Now I want to ask you a few questions:

Have you had at least one sexual partner in your lifetime? Do you have oral sex? It doesn’t matter if you are monogamous or have several sex partners, it is imperative you know your sexual health status. Enough with: “I am clean. I got tested.” Trust me. I have heard those words. Now I am sharing my story. Do not gamble with your health.

Even though I have an STI, I want to know the sexual health status of my future partner, because who knows what he might potentially give me. Before you say, “Not in my backyard,”know that herpes does not discriminate. It is time to educate yourself.

Just this morning, I received a letter from a woman who feels absolutely broken and felt as if her life was over. She asked how I was able to deal with the rejection that often comes with living with herpes. I know her pain because I once felt her pain. I have experienced countless rejections, just as much as equally as I have experienced acceptance.

This is what I told her: “Listen…the person who is meant to love you will love you. All of you. There is nothing wrong with you. If someone doesn’t want to be with you because you have herpes, then that person isn’t the one who was meant to love you. You have to love you and be good with yourself first.”

A year ago, a beautiful man named Adrial, the creator of the Herpes Opportunity, told me the exact same thing. I am forever grateful to this wonderful human being who changed my life for the better.

Isn’t it ironic that such an ugly stigma allowed me to discover my true beauty? In a way, I am grateful that herpes allowed me to filter out what and who really matters in my life.

Far too often we spend our lives worrying, “What do people think about me?” Now I am asking myself, “Why does it even matter?” I know for a fact that I love the hell out of me. That is the only opinion that matters.




Living Single With a Sexually Transmitted Disease. ~ Anonymous



Author: Cicily Bilecki

Editor: Catherine Monkman

Photo: Thomas Leuthard/Flickr


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