I Am Not “Suffering” From Herpes

5B6A8472I’m exhausted today. Someone I’m seeing came over late last night to, in his words, “fuck the shit out of me,” and by the time he left it was just shy of 1:30am. I took a shower and then lazed around in bed, smelling him in my hair and remembering how he kissed my neck, how he bossed me around. He texted me once he got home to confirm that the G Train had been running after all, and I fell asleep reading my Kindle in sweat-soaked sheets.

I don’t sound like I’m suffering, do I?

That’s how The Daily Mail, The Independent, Metro, The New York Post, OZY, and The Science Times describe people like me—people who have herpes. We’re “suffering from herpes.” We “suffer” the symptoms. We’re “sufferers.” It’s a widely uncontested trope of health writing, and in my opinion, it’s the best indicator that a journalist is not seeing his or her subjects as human.

I’ve always had a difficult relationship with labels of all kinds, so it’s not surprising that the idea of being called a “sufferer” is revolting to me. A label flattens someone’s identity to one detail, one moment, one feeling. While I have adopted the label of “abuse survivor,” I still struggle to feel like I have a legitimate claim to it. There is always someone who has survived something worse. But “survivor” is a label meant to empower and validate someone’s painful and complex experiences. A “survivor” is believed, supported and recognized. A “sufferer” is… what, exactly? Pitied? Exiled? Made to pay for their sins or the sins of others? There is nothing empowering about suffering, not in my agnostic and feminist opinion. Being referred to as a “sufferer of herpes” is an insult, plain and simple.

Let’s put it all out on the table. Herpes has the potential to cause painful, regular outbreaks. It can introduce new challenges to your pregnancy, new conversations to your relationships, and new medications to your daily regimen. In rare cases, it can lead to medical complications. I’ve gotten flack for making life with herpes “look easy,” a criticism that I respect but reject—I am writing about my experience honestly, and we need more voices to challenge the single narrative of herpes. But the truth is that for many of us, herpes shows no symptoms at all, or expresses itself just once. It shapes how we see ourselves and how we live our lives, but it does not prevent us from living them the way we want to live them. I know many herpes+ people who have spoken to how the virus changed their lives for the better, helping them form healthy relationships and understand their strength and value as individuals. We rarely hear from the people in the middle, for whom herpes just is. And we never hear from the millions who will never learn they have herpes at all.

I’m one woman out of the billions of people who have herpes, but I feel comfortable speaking for most of us when I say that describing us as “suffering” does more harm than good. The word “suffer” has dangerous implications. Every salacious article about how much of the world “suffers” from herpes makes getting diagnosed more terrifying instead of normalizing its possibility. Herpes rarely kills anyone, but stigma contributes to relationship abuse, dating practices based on abstinence or self-segregation, and in extreme cases, suicide. I know this because my friends and I have experienced all three. I have suffered as a result of herpes stigma. Herpes itself has done little to hurt me.

That may seem like a silly distinction to draw. Where would herpes stigma come from if not the reality of life with herpes? Some of us were cheated on and lied to, have painful outbreaks, have been judged and rejected and abused. To those of you who have suffered and want to claim the word, you do you. I don’t want to minimize or erase your experience. But when the mere existence of herpes is framed in a negative light by journalists, we have a real problem.

Stigma tells us we will suffer, and that suffering will define us. In my case, it is wrong. As a writer, I know the power of words to shape our experiences and our hopes. In the interest of clarity and self-definition, you should know that I am not suffering from herpes. I “have” herpes. I “live with” herpes. The only thing I suffer from is exhaustion, and I’m not complaining about that.

UPDATE: This blog post earned some snark on Twitter last night from the “kids today find everything offensive” crowd. This isn’t the first time something I’ve written (or more often, an article about me) was passed around as a hate-read by readers older than myself. It is, however, the first time a woman in the Wesleyan network with whom I have several mutual friends hate-shared my work and then questioned its legitimacy. In light of that, I haven’t stopped thinking of this post and thinking through what compelled me to write it.

“Suffering from” is common terminology in health writing. It’s everywhere, and it is often a kind gesture: my loved one “suffers from depression,” my best friend “suffers from PTSD.” In some cases it offers respect and grace to a mental health struggle that doesn’t often get discussed. There are illnesses that truly make you suffer, and to say so is not insulting, it’s an act of witnessing. I have no doubt that there are people who would say they are “suffering from” herpes, either its physical outbreaks or the mental anguish of shame and isolation.

What I take issue with as a stigma reduction activist is the blanket assumption of journalists that living with herpes is to suffer. This lazy word choice is based on an ignorant and outdated understanding of the virus as physically debilitating and threatening to newborns (in which case, I ask you to read “What To Expect When You’re Expecting — With Herpes” for some major myth-busting). For the vast majority of us, herpes is a manageable skin condition. For even more of us, herpes presents no symptoms at all. Continuing to depict herpes as a terrifying virus that millions “suffer from” not only tells people who know their status that they should expect and deserve to suffer, it tells people who have not yet been diagnosed that they would know by now if they had herpes. Stigmatizing herpes discourages people from learning their status, contributing to its accidental transmission and to even more silence.

Furthermore, this post is about granting respect. Herpes is not a respected virus. It is mocked by journalists at reputable outlets all the time. Suffering can uplift an illness commonly left in the dark, but herpes is not left in the dark. Alarmist, irresponsible articles about herpes are the traffic fodder for sites as legitimate as TIME. These articles are never written for people with herpes, they’re written about us. And all too often, they are not even written by us. Who decided to have herpes was to suffer? Why am I “getting offended” when I suggest that they are wrong?

When people who do not have herpes tell me I am being too sensitive, I think I’ve made my point.

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7 thoughts on “I Am Not “Suffering” From Herpes

  1. While I don’t “suffer from herpes” I am currently aching through my third out break this month and I am in pain and I do feel anguish, and for that reason I would say I’m suffering, most likely because I’m not someone with HVS1 genitally who has one outbreak every few years but I have several a month. So while it’s good to raise positive awareness and speak as someone who has the illness. It doesn’t change the fact that people do suffer.

  2. I’ve always felt this way. It’s unfair to refer to people who happen to have herpes as “sufferers” and “victims” as if they are somehow less than human for having herpes. The only people who suffer are those who buy into the stigma and feel unworthy for no reason other than they feel they should simply because they have herpes. I fell into that trap for many years until I got tired of it and dropped it. Now I just live and don’t let myself fall into a spiral of guilt or negativity. There’s not enough time on this earth for that.

  3. Pingback: How a blog post about herpes led to a fierce debate about annotations, harassment, and free speech on the internet – hihihi.lol

  4. This article was beautifully written. At the end of the day I think you covered all the bases. Are there people who deal with painful outbreaks and or mental anguish? Yes. Are there people who have never had an outbreak and live unphased by stigma? Yes! There is no black and white here and I feel like most publications don’t care to write about the two sides of herpes . There are people who have herpes who love and live “normal” lives. The fact that some of the stuff they write Smells of stigma only influences more people to not get tested . I’ve spoken to many who feel the ” ignorance is bliss ” life is better in regards to knowing herpes status . I also know that a lot of people struggle with their diagnoses and I feel that articles like yours help . Your blog has done more for me than you would ever know . I just found out I may have had herpes for 2-3 years and all my ex partners don’t seem to have it or at least told me they don’t but I got it from somewhere and even though I don’t deal with major outbreaks, mentally it’s been tough. Reading trash hurts and makes it harder to cope! Thank you , Ella! Thanks a lot ! Please keep writing . You inspire so many of us and hopefully these people who choose to write pieces that pump fear and promote ignorance and stigma open their eyes and choose to retract and rewrite their pieces with facts . Anyway- thanks 🙂

  5. I hadn’t heard of the book about pregnancy and herpes. I’m currently expecting and when I told my midwife (midwives are more common than obstetricians in NZ and have more than adequate training) I had herpes she didn’t even blink, she just said it’s nothing to worry about and they will take a few precautions closer to the due date. I definitely do not see it as an issue and I’m glad there’s a book out there to confirm that!

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