‘It’s in my Tinder bio’: Meet the women living with herpes and dispelling the myths

‘It has no reflection on our worth whatsoever. That’s all stigma’

3 years ago

Bella* was 19 years old when a casual uni night out changed her life forever. Bella is a student at a university in northern Scotland. She and her friends had been at a society social before going for a few drinks at a local Irish pub where she met an older guy. They got chatting before Bella and her friends moved onto the club. She’d had a few drinks and was dancing when the guy showed up. The next thing she can remember was being back in his flat sitting on the sofa unable to move. Bella woke up the next morning to discover she’d been sexually assaulted. And then a few weeks later, a trip to her doctors revealed she not only had the trauma of assault to deal with but she had also contracted herpes.

In the aftermath that followed Bella was dealing with the emotional turmoil of being sexually assaulted and coming to terms with being diagnosed with a lifelong sexual disease. Bella’s diagnosis resulted in her dropping out of uni for a period of time, being paranoid every time she stepped onto campus and hiding her diagnosis from members of her family.

The herpes simplex virus can be divided into two categories. HSV-1 is mainly transmitted through oral contact and causes oral herpes, and occasionally genital herpes. HSV-2 is a sexually transmitted infection which causes genital herpes and this results in blisters appearing on the genitals. There is currently no cure for either variation and it stays in your body forever. It’s incredibly easy to pass on even if you have no symptoms.

Bella is not the only student in the UK to have herpes. In fact a study conducted in 2015 of the 30,658 cases of genital herpes diagnosed that year found people aged 15 to 24 years old made up 41 per cent of cases. At this point in the uni term the majority of people have probably slept with someone and then probably gone to a sexual health clinic to get themselves tested. STIs and STDs can sometimes feel like an integral part of uni life. You haven’t really had the truest experience until you’ve been told disapprovingly by a nurse you’ve got chlamydia, handed a bag of condoms and given antibiotics to clear it up. Within two weeks you’re clear and it’s as if nothing ever happened. Whilst it’s not a badge of honour, being diagnosed with chlamydia during your time at university isn’t exactly shocking. And yet the same cannot be said for herpes.

Around 70 per cent of the UK population has HSV-1 and around 10 per cent of the population has HSV-2. Both are incredibly common and yet it is the one sexual disease that is continually stigmatised, laughed at and seen as an incredibly shameful thing.

We’ve come a long way in how we view HIV – the roaring success of It’s a Sin earlier this year is testament to the societal attitude shift the majority of the population has in viewing HIV positive individuals as completely normal people, as they should.

But watch any Hollywood comedy, take a quick scroll through Twitter or even your own group chat and it is abundantly clear herpes is still being used as an insult. The disease is seen as dirty, degrading and not something you should ever be proud of.

A number of herpes activists on TikTok are now trying to do something to change this perception. The herpes hashtag alone has over 215.7million views. And the top videos aren’t poor taste jokes but instead a number of creators using their platforms to answer questions and dispel myths around the disease.

via Instagram @suzbubs

Suzanna Brusikiewicz is one of these creators. She has over 60,000 followers and began sharing TikToks earlier this year after being diagnosed two years ago with HSV-2.

“I just didn’t realise how many people are out there who are suffering in silence with it. It can be such a comforting thing to realise you’re so not alone with it,” Suzanna told The Tab about the community that’s been built online.

She regularly shares videos discussing stigma which she believes is often targeted more towards those with HSV-2, “We don’t even see people often disclosing that they have oral herpes, or worrying that someone has oral herpes. So it’s interesting how the location is what determines the stigma.”

When Suzanna was first diagnosed she recalls crying hysterically in the sexual health clinic, believing her life was over. However both the doctors and sexual health support line she called afterwards were incredibly supportive and tried to put her mind at ease with how common the condition is.

Suzanna’s biggest concern upon finding out her diagnosis was how it would affect her dating life. She was in a relationship when she initially found out and stayed with her partner until she discovered he was cheating on her months later. Now Suzanna is dating again and regularly discloses her HSV-2 status on apps and has found the majority of her matches are receptive and non-judgemental. However she describes how common it can be for people’s self worth to plummet once they are diagnosed and how often they stay in unhealthy relationships for fear of never finding anyone again.

“We put up with relationships we don’t deserve or don’t see red flags or stay in situations we shouldn’t because we think we can’t find love after this or have a normal sex life. And it’s just completely untrue. You know, it has no reflection on our worth whatsoever. That’s all stigma.”

@suzbub💜. ##herpes ##hsv ##herpesstigma ##herpesawareness ##herpescheck ##herpesadvocate ♬ original sound – suzbub

Whilst it is great to see the awareness being spread on TikTok, this level of support wasn’t available to Bella when she initially received her diagnosis. Instead she was met with disapproval by her doctor and handed a bunch of condoms and told to go on her way.

“I was crying a lot and she wasn’t very sympathetic. She was kind of acting like it wasn’t that big of a deal. It was more like you got yourself into it. That was the kind of vibe that she gave off.

“There was a lot of judgement. They didn’t really ask if it was an assault, or anything like that.

“And I left the room with a packet of condoms, because that’s what she gave me when I left. And I was bawling my eyes out at this point. Like, I don’t want that. I’m scared now to go back to that doctor because it’s a horrible feeling,” Bella told The Tab.

But returning to the doctors is inevitable for Bella on account of the toll herpes has taken on her body. Shortly after her diagnosis she was incredibly ill with her first outbreak and didn’t take her exams around Christmas. An outbreak is when the blisters return and form on your genitals. The amount of times a person will have an outbreak is entirely dependent on the individual. According to the NHS outbreaks tend to happen less over time and are less severe. However for Bella ever since the initial outbreak her health has never been where it once was and two years on whenever she experiences an outbreak she will deal with pain in her tonsils, back and abdomen.

Herpes affects every aspect of Bella’s university life. Things many other students take for granted Bella is constantly thinking about. Going on field trips for her course requires Bella to fill out risk assessments – but telling your mostly male lecturers about your herpes isn’t exactly at the top of her list of favourite things to do. A classic night out look of jeans and a bodysuit is a no go for Bella due to the friction it can create and therefore a subsequent outbreak.

@suzbubI’m just trying to educate y’all even after $lut-shaming me 😂. ##herpes ##hsv ##herpesawareness ##herpesstigma ♬ WHY IS EVERYONE USING THIS – .

It is not only the physical impacts on her life but Bella has felt the intensity of the stigma of the disease for the last two years. Bella’s flatmate shared with a rugby boy Bella’s diagnosis and it quickly went around campus.

“He ended up telling other people so then obviously I did feel that stigma and I didn’t like walking around because I felt like people would know I didn’t know who knew at that point.”

She describes the feeling of loneliness she has often experienced as a result of people not talking about herpes, despite potentially so many having it.

But thanks to Facebook she’s found a positive community in a group of people who all have herpes and share their experiences. It was there she found out she could get her HSV-2 medication for free, when she had previously been paying for it.

As a student you’re not exactly rolling in money and for herpes there is currently no cure, but there is suppression medication available, although Bella was unsure if she could get it for free.

“I looked at paying for myself but it was going to be over a grand a year to get medication and I’m a student so obviously I can’t pay that. And I got herpes through sexual assault, it’s so harsh I’d have to pay for the medication.”

@suzbub ##herpes ##hsv ##herpesawareness ##herpesstigma ##herpesadvocate ##herpes ♬ original sound – KyleAndJackieo

A user in the Facebook group alerted Bella to a way of getting suppression medication on the NHS which now means she takes a pill everyday. This medication drops the transmission rate drastically making potential sexual encounters much safer.

And thanks to the medication Bella has now felt comfortable getting back on the dating scene and has been enjoying it. She’s set up a Tinder and even included her HSV-2 status in her profile, after seeing someone on TikTok do the same.

Bella has been on a few dates and found sharing her status a great way to weed out people who won’t be interested.

“It already cuts out everyone who’s like, ‘Oh, that’s gross’. And if they match with me, then they should have already seen it.

“But I do bring it up. Like I would say, ‘Did you read my profile?’. And then I would just get them to Google it at that point. I don’t need to, it’s not my place to offer you the explanation. Just Google it yourself.”

Her matches are usually pretty open to Bella’s condition having already seen it in her bio description. Bella’s insistence on her dates educating themselves is something we should all be doing, regardless of whether it pops up on our Tinder. Herpes isn’t included in the standard testing for STIs – you have to specifically ask for the test – many of us could have it in our bodies and have no clue.

Therefore there is a high likelihood that someone you know has herpes. So rather than making jokes at their expense, learn about the disease. Though herpes lasts a lifetime, it usually isn’t the physical impact that takes a toll on HSV-1 and HSV-2 positive people. Instead it’s the crude jokes, the gross comments and potential loneliness around it that really hurts.

In an ideal world Suzanna wishes everyone would be tested for it in order to show the wide spread reality of the disease. She said: “Everything comes as a result of stigma. The way that people might make ignorant comments about it, or shame people who have it. As soon as you learn and realise all these facts about it, you start to think, okay, maybe it’s not fair to shame people for having it because of how easy it is to get it. How possible it is that they might have it and not know.”

*Name changed to protect identity