Herpes Shame

Taking my body power back - over forty years later

Prologue:

I’ve just read someone on here describing the importance of getting the right tone in one’s Substack posts. The suggestion is, just professional enough, but with something of the uniquely personal added in. However, she also argued against necessarily oversharing your deepest stuff. This is ringing in my ears as I contemplate writing this piece.

But… blurred boundaries and oversharing being my mileau for many decades …here I go.

Diving In:

The very fact that I question whether this piece is going to be too much or not, makes me realise that even in my sixties I still have very complex emotions about acquiring and living with genital herpes. The stigma and shame is very real and I have discovered that it is not just me who feels this way.

I contracted it aged 24 from my first husband, a charismatic addict; a disastrous man for me. The divorce took longer than the marriage lasted; 1 year. This is not irrelevant to my feelings around herpes. My contracting this (very) common virus is intricately tied into a traumatic and tumultuous time in my life. I am only now realising that every time I suffer a herpes recurrence, there is so much more going on in my body and mind than simply activating antivirus cells. Bad memories flood back, shame and stigma activate again, alongside symptoms that, although short lived these days, interrupt my normal life. The whole experience of a herpes attack then becomes imbued with emotional dysregulation, stress, shame and isolation.

The physical aspect is mainly extreme fatigue for me (I can only compare it with the early stage of being pregnant; that sudden tiredness that totally demands you rest and close your eyes even if for only 20 minutes or so). However, nerve pain can be present (like sciatica) and the small lesions can be very sore and itchy. I never share with others when I am suffering. If I need to offer an explanation, I lie and say it is a bout of cystitis or something else.

Certainly a taboo topic.

Whether my contracting HSV-2 was intentional, negligent, accidental or inevitable on his part really doesn’t matter at this stage. But the not knowing, adds another painful aspect to all the memory and history that is right back with me when I have an attack.

What really does matter is the timing of my contracting herpes. The mid 1980s was a period when the scaremongering in the media was at its height. For a year or two it went absolutely wild with newspapers emphasising the ‘incurable’, the ‘epidemic’, the sense of ‘dirty’ sexual promiscuity, and of course inviting sufferers into the shame. From the intense public panic that was created you might have imagined something more akin to Ebola or the plague! At one point my parents asked me not to visit, as planned, that coming weekend, such was their own ignorance and fear. (As a side note, this is a great example of where oversharing/blurred boundaries is really not in my best interests - lord knows why I told them?! )

One motivation to write this piece was my wondering why this remains so hidden and shameful? Are others out there keeping their own secret shame? Within my world, this topic is never discussed or even mentioned. And yet as soon as I looked for the statistics it is evident that many, if not most, contract herpes; some asymptomatically, some as a one-off infection and others, like me, where it periodically recurs.

“In the UK, 70% of the population will carry one type of herpes virus, HSV-1 or HSV-2, by the time they’re 25,”¹

HSV-2 is the strain most often associated with genital herpes and HSV-1 with cold sores but not exclusively.

I searched for ‘herpes’ on Substack, just to see, and up popped an abandoned publication: Herpes Dating. A stark reminder, that at one time people felt so scared, ashamed and ostracised by their infection that they needed to create exclusive worlds where they felt safe to be.

The following is from a woman in her 50s who wrote to Woman’s Hour ² in 2019 about her experience with genital herpes:

Since then, I have struggled with feelings of total worthlessness and an overwhelming shame about my condition. So much so that I have ruled out the possibility of any future relationship which would necessitate me divulging my medical status.

In my informal researches I did discover the root of this stigma and shame for a virus that is less dangerous than flu. And goodness knows it has made me feel very angry. Yet again our capitalist, patriarchal culture shows its true colours. Pre the early 1980’s “doctors knew that they were simply dealing with the manifestation of the common facial cold sore on a different site and they treated it appropriately”.³ It was nothing more, and nobody got het up about it.

That was until Burroughs Wellcome, who had successfully created a viable antiviral drug in the late 1970’s, began to consider marketing strategies in order to get their investment return rolling. The drug, acyclovir, was only successful with chickenpox and herpes simplex viruses, both of which were usually mild and therefore not requiring treatment. They needed to get their prescribing rates radically increased. So, in their wisdom, the focus was shifted onto genital herpes patients and their doctors as a possible fruitful source of revenue. Via a targeted marketing programme, they managed to completely re-frame the condition as a serious and life changing disease; the emphasis on the incurable and that it lived in the body forever. The campaign proved to be a P.R. dream.

They could not have wished for a bigger, more engaged and terrified response - it literally went viral!

In the US it was the cover story in Time magazine twice, in the UK the ‘red tops’ had a field day whipping up a frenzy of fear, disgust and alienation. And, somewhat unbelievably, it hasn’t ever really gone away.

It makes me truly sad to remember that what began to take the heat off the genital herpes hype, was the dawning awareness of another hugely stigmatising and stigmatised virus, HIV. The media moved on.

So I am left with the impression that the reason it hasn’t gone away is because, like all good taboos, it stays in the dark.

This piece is my personal spotlight.

Wishing any fellow sufferers their own body power back!

LOve Sarah

Photo by Miguel Bruna on Unsplash

1. https://herpes.org.uk

2. https://www.bbc.co.uk/sounds/play/m001020d

3. https://herpes.org.uk/how-herpes-got-its-stigma/