Sunday, January 23, 2022

Six Months On… ‘I Wrote About My Herpes Battle – But I Never Expected What Happened Next’

In a follow-up from her candid story about her herpes battle, Sarah is back with what’s happened since – and to say she’s been blown away is an understatement.

One in 500 million…

In February, just in time for Valentine’s Day, I wrote an article about something I never thought I’d be writing about. Herpes. Herpes and me, unfortunately. 

I say unfortunately but I actually feel pretty lucky. It’s now been seven months since my blind-siding diagnosis and four since I published my article on Capsule. That article resulted in dozens and dozens of personal emails landing in my inbox, good people from New Zealand and around the world sharing their own herpes stories. 

A diagnosis of an STI can feel incredibly lonely, especially a diagnosis of herpes, and here I was receiving messages of support, shared experiences, cries for help from the recently diagnosed and comedic retellings of blatantly unfunny situations. I’ve been so grateful for each and every one. (Please note: if I haven’t responded to you yet, I will get there! I haven’t forgotten you!)

And they continue to come in weekly – in fact I’ve received three in the last week. I’ve spoken to a woman in Mexico, one in the UK, another who felt life wasn’t worth living anymore, people living normal lives, some who have given up sex entirely, one who’s writing a book and others who don’t always tell their sexual partners they have the infection because they’re too ashamed. There’s been cheating partners and prostitutes and dating apps. So many dating apps. 

Everyone’s story has been similar to mine – shock, heartbreak, self-loathing and eventually, reluctant acceptance. And every story reinforced how unalone anyone with herpes actually is. Even though alone is exactly what we feel. 

So where am I at? 

I remain convinced that the worst part of herpes is the stigma. Herpes is simply part of the human condition and it is society that has put this negative conditioning on the virus. It is a virus most of us humans host – either upstairs or downstairs. The sooner we can accept this the better. Yes it’s contagious – and let’s be honest – nobody wants to catch a common cold from someone else, let alone an STI you’ll be carrying for the rest of your life on your nether regions. But 80% of those of us with herpes do not even know we have it – and that 80% is potentially passing it on at a much higher rate than the people who do know. You can’t necessarily avoid getting herpes and you can’t necessarily avoid passing herpes on – symptoms or not. The best thing we can all do is understand, rather than fear, the virus. 

At the time of writing my Herpes and Heartbreak article I’d had the virus return twice – and of course it flared up again immediately after the article was published. Flared up is a touch dramatic; it could easily have been an ingrown hair. I touch wood when I say this; it’s now been four months since I’ve seen any sight of it. But as I covered in my last article – the infection is a minor inconvenience at most; nothing more than a wee dot that I potentially wouldn’t spot unless I pulled out the torch and mirror and had a good mine around. 

I’ve grown in confidence in telling people too; my long-suffering colleague has had a full breakdown of my entire sexual history and who better to offload to about your sore vagina than the person you sit next to for 40 hours per week. What a great way to ensure someone remembers you. 

I pulled up an Instagram ‘influencer’ who made a ‘glitter is the herpes of the craft world’ jibe (ie it spreads everywhere, is impossible to get rid of and keeps reappearing). I slid right into her DMs, telling her the comment was unkind and ignorant because a good percentage of her followers would have herpes and this sort of carry on just stigmatises the infection further. And anyway, glitter is WAY more annoying than herpes (plus I’ve never found any on my fanny). 

Here’s what else I do:

– I regularly google herpes to see if all the scientists who were working so diligently on the Covid vaccine have now pivoted their attention to herpes. They have not. 

– I decided not to take anti-viral medication because I wanted my body to learn how to manage the virus on it’s own. It’s doing pretty well so far. I’m proud of it. 

– I stay in touch with the Herpes Foundation and the NZ Sexually Transmitted Infections Education Foundation teams. They are looking to set up a focus group to work collectively on a herpes destigmatisation campaign. Sometimes I talk about being New Zealand’s face of herpes – bus backs, bus shelters, digital billboards, Seven Sharp. And then I remember that it’s hard enough to find a good man as it is.

– The Instagram Lalalaletmeexplain has a fantastic herpes mythbusting Highlight with some eye-opening findings from her Insta polls including why ladies should be alarmed if a man ever tells them he’s caught his willy in his zipper. He (probably) has not.

– For the majority of us who have had a herpes outbreak, the subsequent symptoms are mild, if present at all. Recurring symptoms are rare – especially after the first year since diagnosis. Some never have it present again.  

– I try to educate through the stats. A quick recap for those in the back of the room: the World Health Organization (WHO) indicates that about 500 million people between 15-49 are living with genital herpes. More than 30% of sexually active adults in New Zealand have genital herpes. 80% don’t know they have it because the symptoms are so mild – or they’re symptomless altogether. 

I still look back at photos I’m in, photos before Tuesday 10 November 2020, and think “I didn’t have herpes then”. I’ve kind of split my life into Before Herpes (BH) and After Herpes (AH) but I guess that’s just part of how I’m processing things. 

On the whole, I get on with my life because why wouldn’t I. 

I’ve dated, a little. I’ve told guys I have the infection in the hope it would deter them from pursuing me (it didn’t). But right now I’m getting back to me and refocusing on what I want and what’s best for my heart. 

And then there’s Logan. Logan who unwittingly passed on the infection and who broke my heart somehow remained in my life. With his unique way of processing the world around him, his complexities and his beautiful mind, I just wasn’t quite ready to let him go. There’s been more than a few misunderstandings between us but herpes diagnosis aside, I knew the first night I met him he was always going to be special to me. I ended up falling for him. But that’s another story.

___________

PS – while still haven’t been brave enough add my full name and face to this story I am happy to talk to anyone who’s had a recent diagnosis and needs someone to talk to. You can reach me by sending an email to [email protected]

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