A diagnosis that filled me with shame
It's time to end the stigma of getting sick - no matter what it is!
I’ve been wanting to write about this topic for YEARS but one thing always held me back:
SHAME.
Shame is such a fascinating human emotion that I am intensely familiar with.
At 20 years old I got a diagnosis that made me feel my life was over: Herpes Type 2.
It’s wild how you can take a word like Hermes (the silk scarf), which invokes the feelings of luxury and glamour, and switch the M for a P and you got a social fate akin to being damaged goods FOREVER. Ah, the power of a little P.
When I got infected, it was a story as old as time: a man telling a woman that he didn’t like the feeling of a condom.
He was ten years older than me, a “Sweden famous*” standup comedian and to my younger self, it felt like it would be cool to have sex with him. So I did. We went to his new apartment in a new neighborhood in Stockholm. When I asked if he had an STD he said no, although when confronted with my diagnosis later, he admitted he knew but that he didn’t think I would get it. The rest - as they say - is history.
*Sweden famous: A person well known to the 10 million Swedish population and unheard of in the rest of the world.
One thing that people don’t know about getting herpes is that some people get it and notice nothing. For others, like me, it was one of the scariest moments of my life. At first, I thought I had a bad cold, but it kept getting worse and worse and I needed up in the hospital. I remember sitting in the waiting room shivering with a 106 F fever barely being able to walk to the examination room. I had five Swedish Krona (roughly 50 cents) and it was enough to buy an apple from the vending machine (I hadn’t been able to eat that day). When I pressed the button, the apple got stuck in the dispenser, and I cried of exhaustion and futility. I felt so helpless.
When the doctor told me I had been infected by HSV type 2. More commonly known as Herpes “down there”, my whole being went numb. I was in complete shock and disbelief. There was no way this was actually happening to me.
According to Brené Brown shame is an “intensely painful feeling or experience of believing that we are flawed and therefore unworthy of love and belonging.”
On the inside, I already felt anxious and different (I was outwardly popular and did well in school), and adding this diagnosis to my situation deeply intensified the notion that I was damaged and had to hide who I was.
It also deeply impacted my ability to connect with and be intimate with men. I longed to be loved, accepted, and connected but could not manage to be truthful and open, the shame had me in a death grip and I hid my diseased, disgusting self in a thin, bubbly, perfectionist, exaggerated, overachieving personality. It was exhausting, disconnecting, and so painful. I was bad and there was absolutely nothing I could do about it. Herpes, the “mark of the beast” was permanently etched into my being.
All the places my healing journey took me…
When I arrived in NYC in 2008 I was a mess. But I was also ready to get healthy. It’s fascinating to look back at how the thing I thought was the worst fate in the world, having herpes, was the thing that put me on a path to quit my weekly binge-drinking-to-blackout habit. I joined AA and got sober, which had a huge impact on my overall health. (While I don’t identify as an alcoholic at this point, I drink very little and I am so grateful for the role of AA in my recovery.)
Healing enough to go from having outbreaks with every period (if I wasn’t on suppressive drugs) to once per year, which happened about 7 years ago, has been a powerful journey for my mind, body, and soul.
5 vastly different pitstops I made on my healing journey
💜 There have been times I’ve thought I only got herpes because I already had sexual shame and some New Age person told me only sexually damaged people are susceptible to getting STDs (NOT how viruses spread!).
💜 There have been times I’ve googled cures and ended up in horrible marketing funnels that lie to people about curing herpes forever and they take advantage of the stigma associated with herpes. As in, when it doesn’t work, no one will go public and share that it doesn’t work since that would mean outing yourself! So the grift goes on undisturbed.
💜 There have been times where I’ve been with people making herpes jokes – which are kind of socially acceptable to illustrate something or someone’s who’s gross and damaged – and felt like I wanted to disappear from shame and pain.
💜 There have been times I was sure I could cure herpes forever and that it was a submission to admit that there is no current cure - I thought I could use the power of my mind to heal myself completely and anything else would mean defeat.
💜 There have been times I’ve not told people I had sex with about having herpes because I was too afraid and ashamed too. This is by far the thing that I regret the most. And yet, I have compassion for my 22-year-old, deeply ashamed self.
My repentance
This article is my repentance for not being able to be truthful back then. Through this article, I hope to make clear that it’s OK to have herpes and to tell your sex partners about it. I am so sorry to those I hurt in the past.
It’s also a plea/invitation to the New Age community to stop making any medical diagnosis a PERSONAL FAILURE and saying healing is all about controlling your thoughts.
I am happy for those who find their power in the affirmations of Louise Hay (as an example) – but perhaps we can see that type of work as an invitation to look deeper at our illnesses/diagnoses and how we may grow and heal with self-compassion and an openness to both conventional and alternative treatments. No become rigid and judge one or the other.
My journey with herpes perfectly summarizes how both treatments can be useful and how one or the other doesn’t always provide the best options.
First I used suppressive drugs every day which make me feel like shit.
Then I made certain lifestyle choices that vastly diminished my outbreaks.
Then I swore to never use any medicine and felt guilty if I thought about using medication.
Now I rarely get a breakout because I work daily to manage my stress, prioritize good sleep, eat a varied diet rich in whole foods, and I’ve identified my triggers.
In the rare cases, I am under extreme stress and feel like I’m about to get a breakout, I allow myself to use medication immediately which usually results in a much lesser outbreak that disappears in a few days.
Final thoughts
You’re not bad for getting a disease, or any diagnosis, or a hormone imbalance, or aging, or an autoimmune disease.
You’re also entitled to your own personal journey to healing - there’s no “one size fits all” solution.
So, there you have it. My “dirty little secret” is out. Of course, I am pausing with some fear before pressing the publish button… my inner teenager doesn’t want you to judge me, shun me, or shut me out. My adult self is here, reassuring me that I have nothing to fear and that I am safe.
Do you know why?
Because LOVE is bigger than any virus, STD, disease, or diagnosis.
It’s as simple as that.
My love for myself.
My family and friends’ love for me.
The Divine’s Love for me.
It’s bigger.
I am so ridiculously loved. That’s why I’m ready to share this with you and shrink its power over me.
I’m tired of hiding and feeling ashamed! I’m done hiding!
Thank you for reading this. I sincerely hope it helps you feel like the secrets, diagnoses or shameful parts can have less of a grip on you and that more Love comes and envelops that part and makes it feel seen, welcome, and like it belongs.
Because it does. You belong here! All of you!
And nothing that you do or that happens to you can diminish the essence of who you are.
And my journey continues… thanks for being on it with me.
Much love,
Karna 💜
P.S. If you have or have had an STD that makes you feel shame or less than. I see you. You are not alone. Things will get better. There's hope for you!! I love you. Contact me if you need support!
✨Resources✨
Inspiration
👉YouTube Playlist from Kirsty Spraggon: Dealing with Herpes, STDs, and Stigma
👉 Herpes Could Never IG account via its co-founder Shana Singleton
Read:
Article - Living with herpes: Planned Parenthood
Article - Why not to freak out when diagnosed with herpes: I love my Gyn
Simple things that will help if you have herpes.
From the founder:
“I get frustrated by the stigma so many women experience about important health topics. After all, 1 in 6 women have genital herpes and 3 out of 4 women have had a vaginal yeast infection. I’m grateful that FemiClear provides a platform for women to learn about important health topics, connect with sources of support and community, and find products they can trust. Most of all I am inspired by our unstoppable, empowered community; their resilience proves that a healthy V and a joyful life go hand-in-hand.”
👉 Learn about foods low in Arginine and high in Lysene.
Potential Trigger/Making outbreaks worse foods:
Foods high in arginines like turkey breast, pork loin, chicken breast, nuts (peanuts in particular), pumpkin seeds, chickpeas, soybeans, dairy products, and lentils during an outbreak of herpes.
👉 Do eat foods high in Lysene and low in Arginine:
Cheese, yogurt, and other dairy products.
Fruits like apples, pears, and apricots.
Vegetables.
Fish.
Most poultry that isn't turkey breast.
👉 Take a Lysene Supplement:
Don’t take Lysine daily - just use it when you’re having life trigger stuff happening.
👉 Recipe and natural remedies ebook by Shana Singleton
👉 Life stuff that may trigger an outbreak:
Low sleep
High stress
Changing hormones
Overworking yourself
👉 Get support:
Join the free Facebook group: Herpes Could Never
Quotes from people living with herpes - why we have to break the stigma
“Even after his friends hype him up, Jamin Peckham still backs out sometimes. It’s not that he’s shy or insecure about his looks. Instead, what keeps this 27-year-old from approaching the cute girl across the room is a set of hypotheticals that most people don’t deal with.
“My mind runs ahead to ‘the disclosure talk’ and then all the way down to, ‘What if we have sex and what if I give it to her?’” said Peckham, an IT professional who lives in Austin, Texas.”
“Late one evening four years ago, Erica Spera, then 25, noticed two bumps blooming in her vaginal area. The discovery alarmed her because, a week earlier, after not having sex for about six months, the New York City comedian twice hooked up with a new partner. Spera believed she was generally on the careful side of the spectrum, landing there in part because, during college, a friend of hers had contracted genital herpes. She’d asked the man if he ever had a sexually transmitted infection, and he’d said no. But with nothing to be done about the bumps as she readied for bed, Spera decided to visit a walk-in medical care clinic the next day. When she woke up, the number of bumps had doubled, totaling half a dozen by the time she disrobed for the doctor.
“Oh yeah, it’s genital herpes,” Spera recalls the doctor saying evenly. “I see it all the time; it’s not a big deal.”
After her diagnosis, Spera endured depression, and her self-confidence “tanked.” She quickly lost 10 pounds because she thought, “You need to be really hot now,” or else no man would want to have sex with her. Then, even after questioning the honesty of the guy she slept with — who later tested positive for herpes simplex virus type 1, or HSV-1, one of two types that causes genital herpes — Spera briefly dated him again out of worries over constant rejection on the dating scene. Such emotional carnage is a direct result of social stigmatization of HSV-positive individuals.”
Interesting quotes about how it became so stigmatized - it’s really about a moral panic
👉 If herpes is such a minor deal, why does it come with such a pervasive stigma? In the first half of the 20th century, genital herpes was not on the public radar, and it wasn’t even recognized as a discrete type of herpes infection until the 1960s. But by the 1980s, it was slapped on the cover of Time with headlines like “Herpes: The New Sexual Leprosy.” What happened in the intervening years shows how a public sex panic is made. What’s still happening—herpes shame, fear, and confusion even now—shows how that panic can morph and persist.
👉 A 1973 article in the feminist magazine Off Our Backs quoted a doctor saying, “Such is herpes simplex, a common infection, barely a disease—so why talk about it?” In 1974, Abigail Van Buren, known as Dear Abby, reassured a reader, “My medical experts inform me that Herpes 2 should not (repeat not) be classified as a venereal disease,” since it can be spread nonsexually. “No need for you to be embarrassed,” she added. A 1976 New York Times Magazine story had an eminently reasonable conclusion: “For now, herpes viruses are part of our individual and collective ecosystems—like bacteria and pollution. We cannot get rid of them without getting rid of ourselves.”
👉 In the period in between the discovery of penicillin (which cured chlamydia, gonorrhea, and syphilis) and the first reported cases of HIV/AIDS in 1981, Americans had no reason to think they were at much risk from casual sex—but they were deeply ambivalent about the idea of having multiple sex partners for fun. An incurable, easy-to-spread sexually transmitted infection that (sometimes) produced visible marks on the body and (very rarely) killed babies really did feel to some people like divine punishment for having sex. Indeed, a national survey commissioned in 1983 by Glamour found that 25 percent of women thought that “higher incidence of diseases transmitted through sexual intercourse … is God’s punishment for sexual promiscuity.” Billy Graham practically gloated about herpes as a sign of God’s displeasure with casual sex, saying, “We have the Pill. We have conquered VD with penicillin. But then along comes Herpes Simplex II. Nature itself lashes back when we go against God.” As one commentator for the New Republic wrote in 1982, “If herpes did not exist, the Moral Majority would have had to invent it.” Herpes was the perfect MacGuffin for a society ambivalent about the sexual revolution.
About how drug companies are not to blame for the stigmatization of herpes
“Zovirax was a medical breakthrough for the treatment of herpes simplex, chickenpox, and shingles, and one of its inventors was awarded a Nobel Prize in part for the drug. But it was also the source of the internet’s favorite conspiracy about how the herpes stigma was born. To hear some advocates for HSV-positive people tell it today, herpes didn’t carry any stigma until pharmaceutical companies, hellbent on selling their antiviral drugs, engineered a fearmongering campaign around it. “Herpes Genitalis, it seems, was not always stigmatized; it was merely a cold sore in an unusual place until the 1970s,” wrote an administrator for Project Accept, a nonprofit promoting herpes awareness and acceptance, in a frequently cited post. “The stigma is a comparatively recent phenomenon and appears to be the direct result of a Burroughs Wellcome’s Zovirax pharmaceutical marketing campaign in the late 1970’s through mid 1980’s.” The Herpes Viruses Association, a support group based in the U.K., has also promoted this hypothesis about the origins of herpes stigma.
This belief has gone mainstream: If you visited the Wikipedia page for herpes simplex any time between 2011 and earlier this year, you probably read a version of this theory. In recent years, it has been picked up by Vice (“Did Big Pharma Create the Herpes Stigma for Profit?”), Teen Vogue (“How Our Fear of Herpes Was Invented by a Drug Company”), and Salon (“How Big Pharma Helped Create the Herpes Stigma to Sell Drugs”). Or you might have heard it on the popular medical podcast Sawbones. It has comforted people newly diagnosed with herpes and has repeatedly fascinated the “Today I Learned” crowd on Reddit. It is also almost certainly not true.”
Karna, I really loved this piece. I listened to a podcast with the comedian Erica Spera who is very open with her diagnoses. She talks a lot about how there’s almost zero support out there for those living with herpes and how she struggled with her diagnosis for years even though there are so many people out there that have it but stay quiet which adds to the stigma. You might be interested. You’re amazing, thank you for your work. A real gift. <3
Love this! Thanks for sharing your heartfelt and inspiring journey ❤️🙌