When I was 18, I left the “big city” in the Northeast to move nearly 800 miles away to attend a small private university in the South. While it was challenging to leave my family and friends behind, the allure of independence and a fresh start was too tempting to pass up. Little did I know the trials and tribulations I went through in high school were merely practice for the challenging road ahead. Even though I learned a lot about myself and those around me throughout those four years, it wasn’t enough to prepare me for the mindsets I would encounter in college. At 18, I thought I understood everything about life, and was prepared to conquer any quest. I never realized just how unprepared and naive I was.
It never dawned on me how cruel the world could be until I was date raped two months into college. Not only did my date decide he didn’t need consent; he decided he didn’t need a condom, either. I was diagnosed with herpes two weeks later, after a very painful initial outbreak. I was too afraid to press charges and too ashamed to seek emotional support. Suddenly my views on relationships, potential partners, and intimate conversations had changed. Without telling anyone else, I immediately felt dismissed by society, marked with a giant stamp on my forehead that said “DISEASED.” I could feel the impending rejection, and lost all faith that any boy would ever find me attractive again. Following my diagnosis, I knew that every intimate encounter would hinge upon the same dreaded question: “Hey, you’re clean, right?”diagnosis that no one, especially not you, is prepared to hear? Picture yourself on that exam table as the nurse removes the metal clamp from between your legs, puts the swab in a plastic bag, and avoids eye contact as she says, “It looks like herpes.” Imagine being in my shoes when asked that most important, yet casually delivered, qualifying question: “Hey, you’re clean, right?” Imagine trying to hold your head high when you respond, “No, I have genital herpes.”
Incurable sexually transmitted diseases have been a focal point of our society for more than three decades. The AIDS epidemic of the 1980s ushered in an era of latent terror, in which every adult learned to fear a threatening, invisible consequence of an activity otherwise defined by feelings of pleasure. The fear, as we know now, was not unfounded: some STDs have no cure, and in the case of HIV, can be fatal. For a woman, an STD diagnosis often comes with the label of “slut,” regardless of her sexual experience or number of partners. Today, 35 years after the AIDS epidemic began, Americans are only beginning to become comfortable with those who have an STD. April is now recognized as STD Awareness Month, and magazines like People and Cosmo publish articles featuring wide-eyed women talking openly about their diagnosis. This increase in public attention to and discussion of STDs does not mean the stigma is gone, but there are many more outlets and resources for those struggling with self-acceptance and fear.
From the moment I left the student health center I struggled with my diagnosis. I cycled through all the stages of grief: denial, anger, bargaining, depression… I waited impatiently for the final stage of acceptance. I hated the body I had just begun to appreciate. I hated the physical pain I had to endure with this disease. I no longer trusted men and I didn’t know whom to turn to, or even what I would say if I did. I didn’t know anyone else with an STD, but I knew enough about the stigma associated with having one that I resigned myself to being an outcast. I didn’t think I was the stereotypical “girl with an STD,” but then again, who does? Perhaps I had my own unacknowledged bias toward those with the disease. I tried turning to friends and family for support; some loved me and cried along with me, while others expressed little empathy. I tried turning to boys, begging them to validate me as someone they could still consider beautiful. But to no avail. The rejection I received became too much to bear, and I slowly slipped into depression, full of self-loathing and fear.
Nearly a year went by, and while counseling and support systems helped, I began to seek out other answers. The virus was in my body, and it was difficult to find people who truly empathized with my situation. I have been in counseling since middle school, and my personal success with therapy had motivated me to enter college with the goal of one day opening my own counseling practice. I sought out a counselor locally, close to my college, to try to ease the intense anxiety and loneliness I felt. I had, and still have, an amazing counselor back in my home state, but it is hard to maintain the same therapeutic relationship from such a great distance.
The new counselor I met was young, with a vibrantly colored office, quite different from the black leather therapy couches I was used to. I’ll never forget sitting in her office on my first visit, tearfully recounting the events of the past year. She decided my issue was in my self-esteem, that I was viewing myself all wrong. She smiled at me and said, “You are going to find someone who loves you, warts and all!” It wasn’t until an awkward silence settled in the room that she turned pink and apologized profusely for pushing the herpes girl back into her shell of insecurity. I never went back to her office.
Crushed, I called my mother, who told me that her success in overcoming difficult moments in life came from writing in her journal. Desperate for comfort and inspiration, I bought one for myself. For a while, this seemed to work. I would sit for hours, writing line after line in my black book, and at first I did feel better. I felt confident and creative. I could handle this, and I didn’t need anyone else’s help, because I was enough.
I journaled diligently for about two months, but I wasn’t feeling fulfilled. I was still vulnerable. It wasn’t enough just to write for myself. I would read my words over and over again, cursing myself for being so reckless and stupid. I needed appreciation and validation from others; I needed confirmation that what I was saying was valid, that I was a good human being, even with herpes. I put my journal on my bookshelf and called my therapist from home. She asked if there was any sort of support community I could join near my college, sort of like Alcoholics Anonymous for people who are struggling with an STD. I was doubtful and afraid, but turned to Google. I was stunned by the thousands of results that came up.
It was here, online, that my new journey began with an unseen support group. It looked like a Twitter feed, with anonymous accounts posting short blurbs about their recent diagnosis, describing what they were feeling that day, asking questions about pain remedies. There was a community for everything ranging from alcoholism to eating disorders. After logging on to the site I was overwhelmed by the number of people who seemed to mirror the darkness I felt inside.
I dove deeper and deeper into the support groups, exploring threads and making connections. It amazed and terrified me how these strangers could offer more warmth and comfort than my own friends, how well they could empathize with my situation.
I browsed the threads before writing a very brief, shy introduction and commenting on my recent diagnosis. I was immediately greeted with dozens of messages of love and support, offering quotes about self-care and appreciation as well as tips and tricks to ease the physical pain I was feeling. I dove deeper and deeper into the support groups, exploring threads and making connections. It amazed and terrified me how these strangers could offer more warmth and comfort than my own friends, how well they could empathize with my situation. For the first time since my diagnosis, I felt accepted and understood.
I stayed on the support sites for a couple months, until the buzz of being liked and accepted had waned. The anxiety started to creep back in as I realized that the feelings of security were not real, not based on my physical surroundings on campus. These people would write short blurbs of support, but did they really care? I couldn’t ask others to support me further without deepening my commitment to supporting myself.
Tumblr was the second link that popped up, after the original support group I joined, when I first Googled “herpes support.” If you mention the name “Tumblr” to a group of college students, many will acknowledge the blogging site with a positive reaction. Founded in 2007, Tumblr is home to over 282 million blogs, ranging in themes from fashion to food to 90s cartoons. As the site explains, “Tumblr lets you effortlessly share anything. Post text, photos, quotes, links, music, and videos from your browser, phone, desktop, email or wherever you happen to be.” While most Tumblr blogs are based on the interests of the blog owner, some are created with the intention of creating a safe space.
Tumblr has a growing community, known as “Herpblr,” to help those with Herpes Simplex Virus 1 (HSV1) or Herpes Simplex Virus 2 (HSV2) connect to others with the same diagnosis. The blogs can be anonymous, and throughout the Tumblr spaces users can participate in conversations about HSV on each other’s blogs, reblog resources and links, and share personal experiences, information, and support. The site excels at maintaining privacy and anonymity, promoting creativity, and providing a platform where members of stigmatized groups (such as those with herpes or a mental illness) can address personal issues without shame or fear of judgment. After scrolling through some of the blogs I was surprised to see many run by young women my age. Some even posted their identity and location, which instilled a sense of hope in me that one day I, too, could stop hiding.
Thus began my journey to create my own herpes support page. My page is titled Superior to the Stigma, and my very first post was a short account of my herpes diagnosis. I was proud of myself. I had written my story, even the painful parts. The writing seemed different this time. I wasn’t committing my narrative, with a broken heart, to a private journal. Instead, I was taking charge and displaying it for others to see.
I began following others’ blogs while also writing posts of my own. I loved the blunt humor of the blogs and the fact that these women were comfortable enough to joke about something that had once been so painful. Soon I was laughing along with them. My number of followers started growing, and in a short time I reached 100 blogs, all reading and subscribing to my posts. Other young women were reaching out, asking me questions, thanking me for my support, and praising the honest, humorous way I approached herpes. I was finally myself, exhibiting a blunt, unafraid, brazen, attractive, anonymous alter-ego. While I was still hurting and afraid of having another outbreak, my blog helped me deal with those feelings of insecurity, guilt, and fear.
While the stigma of having a mental health issue that requires therapy seems to be waning as people become more accepting of counseling, blogs allow their users anonymity and a chance for feedback and support 24 hours a day.
The idea of writing as a therapeutic release is arguably nothing new. Counselors often encourage clients to write about their feelings to achieve some creative and emotional release. However, the addition of an audience to the release is what makes the blog different. Human beings seek validation from others. While the stigma of having a mental health issue that requires therapy seems to be waning as people become more accepting of counseling, blogs allow their users anonymity and a chance for feedback and support 24 hours a day. By writing and submitting a post, the user not only feels the release of whatever emotion currently has a hold over them, but also receives validation and acceptance from whoever reads, reblogs, or otherwise acknowledges that post.
One of the challenges of herpes is that the stigma can be as bad as, or worse than, the disease itself. I have been lucky enough to have had only one major outbreak and haven’t felt the extreme physical pain since. However, the emotional pain—the rejection, insecurity, and bullying—is the real issue. Through my online voice and persona, I have changed the way I see my disease … and ultimately the way I see myself. I get messages from other bloggers asking questions about my life and experience, and by narrating my story I have come to recognize how much strength I actually have.
This newfound awareness of my own strength has impacted me deeply. Today I stand up for myself and others with the disease and speak openly to the community. I help the world understand what it feels like to be a young woman in college with an incurable sexually transmitted disease. I don’t cry when I disclose anymore, and I overcome being rejected when it occurs. And sadly, I do get rejected; it’s still a large part of my dating world, but I refuse to cower in the corner.
My blog connected me with hundreds of women in situations like mine. It allowed me to discover—to recover— my voice, my love for myself, and my dignity. It allowed me to be validated by others while simultaneously validating myself. I can make jokes about herpes, complain about herpes, cry about herpes, and even celebrate herpes. And that makes all the difference. Today, some of my posts have been liked and re-blogged hundreds of times and I have more than 500 amazing followers. As the blog grows, so does my own self-esteem and my small imprint on the world.
Zoey Anna is a senior at Elon University studying human services science under the mentorship of Dr. Rodney Parks, assistant professor of Human Services.
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