I had my usual stress nightmare today. In it, it is always the last day of the semester and I have to pack up my dorm room before the deadline to be fully moved out at noon. It’s 11am and I have way more stuff than I can carry, boxes of kitchenware and shoes and clothing and office supplies and uneaten snacks and appliances and bedding. Time is doing that weird dream thing where it seems to race by. My car is already full and my friends are missing. My parents live too far away to be of any help.
In today’s version of the dream, my current boyfriend is living next door but isn’t home. While I call him to see if he’ll answer, I see two very tall, almost otherworldly tornadoes approaching from downtown. My college dorm turns into a cottage and I run down the stairs to the basement, where I hide beneath the landing among the mice. One of the tornados tears through the house in a perfect horseshoe around me, and once it passes by I stumble up the stairs in shock. The walls are intact with cracks where the thin tail of the tornado broke in and then left. I go back outside to the street to see where the storm has headed, and when my feet touch the sidewalk, the house falls down behind me, sending clouds of dust puffing through the air. That’s when I wake up, groggy and feverish at three in the afternoon.
There seems to be a lot of symbolism in there: being unprepared, being alone, change, the pressure of a deadline, danger, failure.
The reality is more mundane. It actually happened to me, minus the natural disaster. I had my first herpes outbreak during finals week my junior year of college. It wasn’t over by the time the semester officially ended, meaning I had to lug boxes up and down the stairs from my on-campus apartment to my car. I was moving out under the wire, as I somehow managed to do every year. Each step made my healing skin scrape against the fabric of my jeans. It was the kind of irritating, stinging physical pain you discount in the beginning, because how bad could it be?
It was that bad. I don’t remember the drive home to my mother’s house or any other part of the day, only the slow slog up and down the stairs at the back of HiRise, feeling stupid and contaminated and alone. I’ve had a visceral, anxious reaction to moving ever since.
I am having my third herpes outbreak in the six years since that first one. It’s been four years since my second outbreak, and part of me assumed I would never have another one. Last Thursday I felt bumps down south and assumed I’d irritated my skin by wearing tight gym shorts on the treadmill, but alas, it was not so. This week has been a haze of fever, loose cotton pants and mortification I thought I had outgrown. Me, the retired Internet poster child of genital herpes, feeling like utter shit about myself. Doesn’t make sense, does it?
It turns out there is an old trauma that my body carries. It is a rift, a strange betrayal buried so deep that I could live without knowing it was there for years. When it came back I thought oh, of course, you are still here. Maybe there is something unlucky about my strain of genital herpes, how rarely it asserts itself. I have the privilege of dealing with outbreaks only in extreme moments of great stress, but this irregular frequency means it is a devastating surprise each time. I feel oddly connected to my younger self, like my body is some timeless in-between space during an outbreak. Spring is in the air too, so it feels like May at Wesleyan as the long dark of winter lifts. I am twenty-six and there is a smattering of blisters where my thigh meets my ass. I am twenty-two, sitting on my heels while working the TED conference for the first time. I am twenty and petrified, confusion tearing scars into my psyche as I move out of my dorm room.
During the years I wrote about herpes online, I became skilled at projecting easily consumable, eloquent vulnerability. I specialized in “it gets better” inspiration mixed with reliable information and advice, all of it genuine and deeply felt. When I reread my blog from 2015 and 2016, I see so much righteousness and care, so much youthful hope and simplicity. More than anything, I wanted to project strength—real, honest strength that people could look up to and strive for. I wanted to tell people that they are okay, they are valuable, they are worthy. Through that, I told myself I was too.
What is weird is that I haven’t actually had a herpes outbreak since becoming “internet famous” for living with the virus. That’s part of why I wound up stepping back from writing about it: it stopped being all that relevant to me. I realized I was taking up a disproportionate amount of space in the conversation about herpes considering how little impact the virus had on my life compared to others who had HSV-2 or oral HSV-1. The shame of the stigma became less personal, the topic more abstract. Herpes didn’t define my life, and it didn’t need to define me anymore as a writer.
I got drinks after work with a colleague last week. We went to happy hour at the local queer bar and I blushed over my $5 Bud Lite as she praised my writing and how effortlessly I talk about shame. That was the word she used, shame. It’s a theme that ties together a lot of my work but I didn’t notice it until recently. Mental health, bad sex, money, abusive relationships, disease, grief. The last few years I’ve felt blown off track with my writing by a series of personal events that have kept me drained. This reframing made it all look intentional, instead of me just being someone who copes with shame by trying to catch it in a butterfly net and stick it to a Word document. I felt a bit of my old swagger come back under her praise. She’s not wrong: I’m not immune to shame, but I find it fascinating. Where does it come from? How do we get over it?
The dramatic irony arrived the next day with a handful of little blisters, just in case I missed the point. I’ve been cloaked with shame for months now. The preferred coping mechanism of my early twenties doesn’t work anymore because there’s no rallying cry for grieving and stress. There are some things I can’t heal in public. You can’t have an audience when you’re dealing with the deep hurt, the really foundational stuff that directs the entire course of your life. Healing isn’t fun or narratively appealing: it’s a whole lot of pulling off scabs and dissecting long broken bones that didn’t set properly. It’s hard. I haven’t been enjoying it, but wanting to enjoy therapy is like wanting to enjoy a Presidential debate: if you think that’s the point, you’re fucking yourself over in the long run.
I’ve had an almost unbearably hard year. It is difficult to put that thought into words. There is nothing this world needs less than whining from a girl with good health insurance and a new Ralph Lauren blazer to wear to work tomorrow. But the pain of it finds other ways to express itself when I am too ashamed to verbalize it: I cry at anything now, at a dish clattering when I’m half-awake and clumsy, at my boyfriend jabbing the thermometer into my ear at a bad angle by accident. In the last few months I’ve gotten the flu, struggled with my libido, canceled plans, run a fever, slept too much or not enough. I’ve more than once just sat on the subway on my way to work and wondered if anyone would notice if I didn’t get off and instead rode the line all the way to the Bronx. In moments I have even heard the knifing little siren call of suicide radio.
Pain unexpressed finds other ways, takes root in the body and breaks it down organ by organ, brain and bone and nerve. You can ignore stress, you can power through the increasing load on your shoulders, you can say you are fine until your throat goes dry, but your body knows the truth. Behold, an outbreak and a fever of 101 degrees. Faint on the subway, get your Valtrex prescription refilled. Wonder how much you should tell your boss about why you’re taking a sick day.
(Jeez, listen to me go. It’s not that bad. It’s not that bad.)
I could write a list of everything that has gone wrong. It would be long, punctuated with names and dates and speeches at funerals and childish betrayals and writing checks and staring unmotivated at my computer screen. Would the list make this more legitimate? I feel this impulse to make the case, to prove I’m allowed to feel like this. Just a young woman with some dead friends and career doubt and a beloved car with a shot clutch. Just a girl who became the person she always wanted to be before she was ready and then flamed out, now living cranky and embarrassed by her lack of verve among the ashes. Melodramatic, selfish, mourning, exhausted.
Shame is a powerful goddamn drug.
I turn twenty-seven in May and I am moving boxes around in my mind in preparation. Does this career ambition bring me joy? Does this friendship still fit quite right? What about this weird food phobia, is it time to find it a new home? I need to make room for new stuff, for less screen time and a five-year plan and if New York City is the right place for me. I have new feelings that need to be stored in bubble-wrap so that they don’t break: commitment, and leadership, and grief, mostly. That raging sense of unfairness that comes from young friends whose deaths make as little sense today as they did six months ago.
I forgot for years that I feel shame about having herpes. That shame is not a logical thing; it is socially conditioned muscle memory. The trauma of it is fading, losing its color. That’s good, at least. I can both know that herpes is a common skin condition and feel the ugliness of that day six years ago. I can know that in another week I will feel fine and make some great jokes about outbreaks and be just a bit stronger than I was before because I’ll have survived again. But today a pretty narrative need not apply. This is between me and my body now. This young ugliness, when my skin contorts and ruptures, this is just me now.
Note: It is normal to struggle and to feel shame. It does not make you weak, it makes you human. When you are having a hard time, please seek our support from loves ones you can trust and tell them how you are feeling. Consider utilizing mental health resources as you are able to. It is possible you are living with depression, anxiety, or a similar condition. It is also possible that you are a person battling extraordinary circumstances who needs some help carrying the load. You are loved.
In 2020 I self-published my micro-memoir, LIFE RUINER, about my experience getting diagnosed with herpes. You can read it exclusively on my Patreon, along with other essays about intimacy, mental health and relationships.
Read a free excerpt here.
Ella Dawson 
I was diagnosed when I was 24 (now 54) and married (my husband only person I had sex with). At first, I was in denial and then anger. I was so furious with him, I stayed anyway and we had two kids. He still cheated on me after all that, and we divorced. I would like to say it gets easier dealing with the depression, but it does not. I cannot bear to tell a potential date that I have it. I do not even want to talk about it. It weighs so heavy on my mind and heart, that its not uncommon for me to cry a few times a week from this. I may only have 1 small outbreak once a year, that’s it.
I hope and pray that the researchers find a cure for this.
Last week, at age 63, I came down with genital herpes for the first time. What I haven’t read from many is if anyone has experienced the excruciating pain I am experiencing. It has been like peeing razorblades or peeing acid. I have had little to no relief for days now. I was put on antivirals but likely started too late to really nip this in the bud. I tested negative for antibodies so this is a newly acquired infection and I know exactly when and how. The person had no idea they were carrying the virus. I have learned a lot but the pain is wearing me down. I would like to hear from others who had a really bad first outbreak and then later, had outbreaks not so bad. It did start with a fever and aches and what I thought was just irritation down there. I believe the etymology of the word herpes is “to creep”. Rightly so. I never ever knew this was anything more than a few bumps, I guess I never gave it much thought having only having had 3 partners since age 21 and then to get this so late in life. I am more than depressed and very anxious about going through this pain ever again. 😞
Hi Mae! You’re definitely not alone. My first outbreak was excruciating and deeply traumatizing. I’ve only had a handful of outbreaks since I was diagnosed in 2013 and none of them have even come close to how painful that first one was. I wrote a bit about it here if you’re curious: https://elladawson.com/2021/03/08/the-kind-of-girl-who-gets-herpes/
The virus sheds constantly. One is theoretically infectious always, but more so with symptoms and outbreaks.
I don’t understand why exposure doesn’t cause infections in this scenario.
I dated three women with genital Herpes, Two for many years and many opportunities to be infected.
I never caught it.Why I am not sure. I accepted the risk believing in the relationship as everlasting.
They didn’t. Now it is a deal breaker. I don’t want it. The relationships didn’t last.
The infection would join the sadness and be there forever.
Sadly many women don’t know they even have it. And men keep passing it on.
I’m newly diagnosed September 2019 and I’m severely depressed…
What do you do when you are in love with someone with herpes 1? And that person loves you back equally, but they internalize their diagnosis and push everyone away? I’m so frustrated. I love him so much and he loves me back. Even if I don’t push the envelope on sexual contact…. what can I say or do for him that will make him stop looking at himself like he’s some monster? Just because he’s positive doesn’t make him a bad person. I love him and I hate seeing him constantly sad. If he doesn’t want to be with me because of the risk, what else can I do to make sure he’s fully aware of how much I love and support him? I just really wish he knew how much he truly means to me. I hate seeing him burst into tears all the time. =(
You rock. I’m 57, Got it in college it’s barely impacted my life all these years. I have children, no problem giving birth. But I’m dating again at this age and I’m shocked at how ignorant people are and how much of a deal killer it is in relationships. it really doesn’t need to be. thank you for being you.
Hi Ella,
I’m so glad that I found you and everyone else who posted a comment. I was diagnosed with HSV1 10 years ago. I had my 2nd outbreak in 2010, my 3rd in 2016, and at least 1 outbreak every year since. The shame and the depression I feel during every outbreak is getting worse every time. I suffer alone because I don’t want my wife and kids to see me broken. I’m currently going through outbreak and I feel terrible. I just want to hide in a dark room until it’s over, but I can’t. I have 2 beautiful kids who look up to me and need me so I have to keep a smile on my face and show them that everything is ok. Reading your blog and everyone’s comments helps me to calm down a little. Thank you.
Thank you…(crying)
I’m 44
Nuff said
Hi! I’m not sure if you’ll read this or if anyone else will on this website. I’m 21 and was just diagnosed with HSV 1 both orally and genitally. My world has been crumbling, because of how society views herpes as. I thought I’d never find someone to love me and was honestly on the brink of suicide. Your blog and TED talk really helped me.. I’m crying tears of joy.
Thank you. Truly.
Hi Ella
I am 31 years young hehe I haven’t really been following but I’ve come across a few of your blogs via Google and just trying to figure out things about my diagnosis. I got herpes when I was 17 all I can remember from that day is the word herpes lol I couldn’t even tell you what type because that word just lingered in my head! I can remember feeling like my life was ruined i’m only 17 i’m not married! I have no kids who’s going to want me now!? I stayed in a bullshit ass rship I should have been left out of fear of rejection even had a baby with the jerk go figure . Anyway after years of being miserable I decided being alone and happy was far better then being in a rship that didn’t suit me. I still have those moments from time to time when I feel disappointed in myself only because my dating experience since hasn’t been so great. I still get a little nervous with disclosure and herpes sorta made me feel like my value decreased so ive been meeting semi douche bags. But recently ive realized something!! I’ve been hindering myself soo much and I sorta put my life and happiness on hold feeling like I don’t deserve certain things anymore but that’s just silly!! I am still smart I am still funny I am still beautiful and I am still amazing and anybody who wants to be with me is going to have to love me for me flaws and all, thank you very much for your reads they give me great incite and comfort on the topic
Like everyone else, i found tour TED talk and articles when i was diagnosed 2 years ago. They brought me so much comfort that i wasn’t the only one going through this and that everything i was thinking was normal was didn’t have to be the norm. You gave me the courage to speak up and talk to friends and family about it whenever i could, which ended up with me being an alt for friends who needed to confide in their diagnosis too. I still feel so much shame, and I’m not entirely sure that will ever go away. I hope you know in the low times how many people you made a difference to by sharing your struggles. One of my favorite quotes I’ve turned to in its entirety with each outbreak- this too shall pass.
Ella,
This post meant a lot to me. I have HSV1 genitally as well and statistically I am “only suppose to have the first outbreak”. Well it’s been a year and a half and I’m now on my 3rd. I got a tattoo after my first one and boom. Outbreak. I was exhausted and run down last week. Boom. Another.
Every time I get insanely depressed and wonder why me? I turn to your blogs usually to help reassure myself that I am ok.
This post actually meant the world to me during this time in my life. So thank you.
I was first drawn to your blog because I had become conflicted when I entered into a sexual relationship with a very amorous woman who does not have herpes II. I feel like her consent to expose herself to the risk is not sufficiently informed though I have tried to explain the nature of the disease. I became so conflicted and guilty that I considered a herpes dating website. The first item which I noticed in my online search was your criticism of these sites. This particular article has helped place the spotlight on the shame I have not adequately addressed. You do not have all the answers that I desperately want to questions that arise from all the gray areas associated with Herpes but you explore those questions and provide some insight.
I am very relieved and happy that I found your blog.
Ella, first I would like to thank you for your Ted talk – very inspiring. Hope you listen to it again now ….
Wish I didn’t have to be the bearer of bad news , but I have been “gifted” for 30 plus years, can pretty much count on getting an outbreak once or twice a year – typically if I lose the perfect balance of managing sleep, diet and stress. And every time, every SINGLE time, the shame rushes in just like it did when I was diagnosed. After 30 + years !! Sure, I manage the shame better, but it still rears it’s ugly head. So please , don’t beat yourself up too much, thank you for writing what you did today and give yourself permission to go into what I call “full pamper mode” for a few days. Create your own silver lining ! I know you know this, you will get through this, and you will be stronger for it.
Your post was so refreshing and such a relief. I’m almost 20 years strong and still fill the shame/depression with every outbreak. I went many years having few outbreaks but in the last 6 months they have increased most likely due to age and hormones. I try to remember that life is not over with the herp, just different.
I’m with you there, sister.
I still live the shame every outbreak I get, reminded of how I came about it. Every time I start to get along great with a guy, or take a shower and notice the bump at the same damn spot, maybe a fever or am I just exhausted?
It’s an emotional issue. I know it is. It just so happens to be the one I’ve had issues dealing with even before I got HSV 1 & 2. Here’s a positive: I didn’t know I had an issue and how deep it was until I got infected, so yay for figuring it out the hard way.
It gets better, we all know it. But I don’t know if I will ever lose that feeling of shame in the back of my mind…
Ella,
You were such an inspiration to me and such a light of hope during my diagnosis almost 2 years ago. I was having a horrible time with it – I had never been so depressed and I could not pull myself out of it. I used to listen to your TED talk about HSV literally every day at first, because it helped reassure me that I wasn’t all of a sudden some disgusting human being, that I was among literally millions of people with this damn virus. I’m so sorry that you’re having such a hard time. You are stronger than I am in that I take daily suppressives just to help with the fear of it possibly “popping up” again. And that is a large part of how I cope with it, by suppressing it both mentally and with medication. Thank you, for being so real and sharing both your ups and downs with the world. Much love to you in everything that you are dealing with ❤