For the past 10 weeks, I've been attending a shame resilience workshop which I describe as part class and part group therapy (just women). The curriculum was designed by Brene Brown, a professor of social work, the author of several books, and the speaker of a couple of very popular TED talks. As crazy as it sounds, discussing shame and how to build same resilience within a safe environment was outrageously therapeutic since my HSV diagnosis just over a year ago. (Regardless of whether or not you see herpes as a big deal, my diagnosis was a huge deal to me because it touched some areas within me which were already struggling with self-love, and feeling worthy enough to be loved by others.) My life has been forever changed for having this experience.
The final homework assignment was to choose a topic I've felt shame around, to write about how it makes me feel, and then ask for what I need. I knew we were going to share our assignment with the group (always optional, but most people did). Although I hadn't mentioned herpes for the first nine weeks of the class, and in spite of feeling pretty darn good about life in the past few months, I knew I had to write about my diagnosis. I knew I needed to share it among people I had developed trust with.
Below is what I call--for lack of better words--my herpes manifesto. I was following a template provided by Brene Brown specifically for this assignment, so if parts of it sound canned, that's why. Parts of it describe how I felt when I was first diagnosed, and other parts are still very pertinent to how I feel today. I spent six consecutive evenings writing this out and cried my way through most of the presentation (which was just reading it to a group of six other women), but I left that evening feeling a sense of peace I have not felt in a very, very long time. I don't know if I'll ever share it with anyone else ever again, but sharing it last week was profoundly healing for me. Since this forum has also been a huge source of healing for me, I wanted to share it with you too.
-HG
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I want to share my feelings with you about being diagnosed with genital herpes, because I want you to understand my struggle. I know that it's an awkward topic to discuss and you may not know anything about herpes; there are times when even I don't fully understand it and have a hard time expressing myself. This struggle has provoked very intense feelings in me and I fear that my reactions to these feelings might be misunderstood. I hope my ability to cope and your ability to understand will improve as I share my feelings with you. I want you to understand what I've been experiencing.
[Continued in part 2]
— — —
You may describe me this way: emotional, sad, distracted, irritable, nervous, aloof, closed and withdrawn.
**My diagnosis makes me feel alone and isolated.** In our culture, merely discussing sexually transmitted infections is taboo, and herpes especially is highly stigmatized. I don't know *anyone* with herpes. When I Googled "herpes support group," the results were dating sites for individuals with an STI. When I've reached out to people I trusted for support, I've been met with fear, indifference, anger, and being ignored. My only sources of compassion have been my therapist and an online support group of total strangers. For me, the shame and isolation has been far more painful than divorce, death of a loved one, depression, or childhood sexual abuse.
**My diagnosis makes me feel confused.** The amount of new information I'm learning--even today--is overwhelming. The fact that there are eight different strains of herpes, two of which can be transmitted to the genitals, and how those two strains are both alike and different, makes it really hard to keep it all straight.
Recognizing my own symptoms has also been very confusing. In hindsight, I attributed my very mild symptoms to yeast infections. So even one year post-diagnosis, I still question whether a symptom I'm experiencing is due to herpes or something else.
**My diagnosis makes me feel anxious.** I have no control over this virus because it's permanent and unpredictable. Medication can minimize outbreaks and reduce the chances of transmission, but there are no guarantees. Even with antiviral medication and using a condom, there is still a 1% chance per year of giving herpes to a future partner.
Every time I have an outbreak, it's like reliving the initial diagnosis all over again. I wonder when my next outbreak will be....how bad it will be...and how long it will last. I also wonder if the medications are safe for long-term use.
**My diagnosis makes me feel mad.** I'm mad at myself for not being better educated about herpes, even though at the time I started having sex, no one knew what we know today about how it's transmitted or how few people show symptoms. I'm mad that even today, herpes is glossed over in many materials attempting to educate people about STIs.
I'm mad at myself for getting tested, and mad at my healthcare provider for including herpes in the blood panel. Most doctors won't test for it unless you have symptoms, even if you ask to be tested for "everything".
I'm really mad at the drug companies for literally marketing shame and fear. Prior to the 80's, herpes was a nonissue. But drug companies created shame and fear with their 1980's ad campaigns so that more people would buy their drugs.
**My diagnosis makes me feel frustrated.** In spite of being the most common sexually transmitted infection--BY FAR--more than all Americans with diabetes or high blood pressure--most people believe herpes is reserved for the careless or the promiscuous. This stigma is unequivocally undeserved. The general public (including myself just a year ago) doesn't know basic facts like how common it is, how it's transmitted, and how most people who have herpes don't know they have it because they either don't have any symptoms, or they're nothing like the symptoms we see on the internet.
I am frustrated by the ignorance and misinformation within the medical community. It's common to get conflicting information or wrong information from trusted health care providers. Since herpes cannot be cured, it isn't problematic for most people, and no one is going to die from it, most doctors just don't care.
I'm frustrated by the overall lack of support. No one is going to bring you a casserole when you're diagnosed with herpes.
**My diagnosis makes me feel resentful.** Even though I'm grateful my ex-husband tested negative, it makes me very resentful that he did not get it after a 16-year relationship with me, but I got it with a small number of partners who always used condoms. I resent getting an STI even though I practiced so-called "safe" sex.
I resent the overblown stigma that exists for what's basically a nuisance skin condition and I resent that the CDC actually recommends against testing in the absence of symptoms. If everyone were tested, there would be no stigma because we'd see how common it is.
**My diagnosis makes me feel sad.** I have lost my sexual freedom. Every future relationship--if there are any--will require an awkward conversation about herpes. And every future partner will assume some risk, even if it's as low as 1%.
I am sad because before my own diagnosis, *I* have made jokes about herpes. I feel terrible for how much that must have hurt someone else.
I am equally as sad that I cannot provide support to others because we're all wearing masks of protection which prevent us from seeing and knowing each other.
**Most of all, my diagnosis makes me feel afraid.** I'm afraid if people knew I had herpes, they would treat me like a leper--afraid to talk to me, afraid to be seen with me, or afraid just to know me.
I'm afraid of being exposed and losing the respect of my peers or even losing my job. I'm afraid of being judged, labeled, rejected, and invisible.
I'm afraid that no one will love me.
You can help me. I know you care about me and I know that my diagnosis, especially my own interpretation of it, affects our relationship. My sadness causes you sadness; what hurts me hurts you too. Individually we both seem quite powerless, but together we can be stronger, and help each other through this sadness. This is how you can best help me:
**I need you to be calm.** Please fake it if you have to. A calm presence will help me to be my strongest self.
**I need you to respect my privacy.** Please do not share my struggle with others without my permission, even if I don't know the person. This is my story to tell, and I am the best person to decide when and with whom I'll share it.
**I need you to be informed.** Please help me to reduce the stigma, even a tiny bit, by learning the facts about herpes. Your willingness to learn means the world to me. It is a gesture of respect which says, "I can see you for who you really are, because I can see herpes for what it really is."
**I need you to reach out.** Please ask me how I am, especially if I seem sad or withdrawn. Please don't assume I need space and ignore me--this fuels my fear of disconnection and makes me feel even more alone.
**I need you to treat me the same as you always have.** Please help me to remember that I am not broken and my diagnosis does not warrant pity.
**I need you to stand up for me.** Please share the facts with your friends and family members when opportunities arise. Please do not joke about herpes or laugh at jokes that others make. Chances are very good that someone within earshot has herpes, and they need a champion too.
Encourage me to maintain my sense of humor and not to take life so seriously. Help me to be grateful for all of the things going right in my life, and remind me to focus on my strengths instead of my imperfections. If others share a similar struggle with you, please give them my name and contact information. I would like to be a support to them if they need it.
Eventually, I will move beyond the struggle of my diagnosis. I will never return to the person I was before, nor would I want to. From this experience I have become more empathic, compassionate, resilient and kind to others and, more importantly, to myself. I am grateful to you for listening and giving me your understanding.
Wow! Very powerful. As a thirty year veteran I can identify with everything you wrote. You should submit this to @adrial to include in the blog. Very well done, thank you for posting.
Thanks, @ihaveittooo. It was very empowering to write and read!
What a cathartic release! Thank you for sharing!
Thanks for sharing your wisdom and thoughts @HikingGirl. I can really identify with everything you write.
A lot of respect for you @HikingGirl for not only posting this, but for writing and sharing it in your group with others.
Hikinggirl, thank you so much for posting cause I feel the same way at times.
Hiking Girl, Thank You for sharing your story. I can imagine my daughter feels this way, that is why I ask questions, I want to have answers for her. It seems I am the one educating myself, more than she is. I tell her, you need to look into things, what could you eat, whats best you don't eat. Either she is terrified of finding things out, or I just don't know. I feel so much like you because I am terrified that the family will find out, and treat her like a walking desease and would want to stay away from her. I myself am afraid for her. So I am with you in all you said. May God Bless You and Give You Everlasting Peace.
She may just need time to process/grieve before she can move forward. It took me quite a while, and with the help of a therapist to start taking ownership for making things better. There's also the added factor of her age, and that's definitely an influence. Thankfully, the stronger I grow in self-acceptance, the less I worry about what other people would think if they found out. That's a big change for me since I wrote that post. Today, even though I don't tell people who have no need to know and I've only told people I trust implicitly and have earned the right to hear my story, if someone put a billboard in front of my house that I have herpes, I will go on being totally okay with myself. :-)
