‘I was depressed and anxious,’ says Suzanna Brusikiewicz. ‘I thought my dating life was over, my sex life was over, and that I’d never feel normal again.’
Suzanna, from Canada, was 34 when she was told that an ingrown hair was actually HSV-2, the strain of the herpes virus which spreads by sexual contact, and causes genital herpes.
If you’ve ever had an STI, you’re not alone. In 2022, almost 400,000 people in England were diagnosed with a new STI, many of which can be swiftly treated – antibiotics or creams can cure the likes of chlamydia, gonorrhoea and genital warts. National Sexually Transmitted Infections Day (STIQ) is observed each year on January 14th.
But herpes is different. There is no known cure, and the virus remains in your body for the rest of your life.
Yes, it sounds scary, and Suzanna says her own diagnosis initially left her feeling so ‘freaked out’, that she thought about suicide.
But the reality of herpes is very different. ‘It doesn’t really impact my daily life at all,’ Suzanna says.
‘And it’s so common. Most people will get herpes at some point in their life and you’ll probably never know.’
There are two types of herpes virus: HSV-1, the main cause of oral herpes, and HSV-2, the main cause of genital herpes.
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The infection can cause sores or blisters – which often occur during a ‘flare up’ – but many people are asymptomatic, and my never know they have it. In fact, seven out of 10 people will have caught one type of the herpes virus by the age of 25, and an estimated 491 million people aged 15 – 49 worldwide have HSV-2.
It’s caught by skin contact and transmission is very likely if bumps are present – and while not very likely when there aren’t symptoms, it’s still possible. People who have HSV-1 can also transmit it to the genital area through oral sex.
As Suzanna says, ‘a small percentage of people get flare ups, and we’re the ones who carry the burden of the stigma.’
Suzanna first noticed what she thought was a pimple or an ingrown hair during a trip to visit a long distance boyfriend.
She tells Metro.co.uk: ‘A couple of days into the trip I noticed the bump, and it hurt a little, but I didn’t think much of it.
‘I headed back home and it started to hurt me, and I also had some pain in that area as well. I just thought I was a little sore from being intimate with my boyfriend, or that I was getting a UTI.’
But when the bump became a blister, that alarm bells started to ring.
‘I went to a women’s health clinic. This was a day or two later, and I already had a few more blisters on my vagina.
‘They took a swab and a week later, they confirmed I had HSV-2, genital herpes.
‘I just burst out crying. I was very distressed.’
Suzanna says medics tried to reassure her that she had an extremely common infection. ‘I remember one nurse literally asked me outright why I was so upset. She was literally like, “it’s not that big of a deal.” But at the time, I just thought “How can it not be?”‘
In the weeks and months that followed, Suzanna’s mental health suffered. ‘I thought it would be debilitating,’ she says. ‘I thought no one would be interested in me or attracted to me.’
Herpes symptoms and treatment explained
Laura Domegan, head of nursing at Brook, tells Metro.co.uk: ‘Herpes is a sexually transmitted infection, caused by the virus Herpes Simplex (HSV). The most common symptoms are small blisters that burst leaving sores on around the genitals, anus, thighs and bottom. Other symptoms can include tingling, burning and itching around the genitals, as well as pain when urinating. The first outbreak of herpes can last up to two to four weeks, and the sores usually heal within five to 10 days without leaving any scaring.
‘It is generally transmitted through unprotected vaginal, oral or anal sex. Herpes is most likely to be passed on before or during an outbreak, so we always advise people not to have sex during these periods, and to wait a week after your symptoms have completely cleared up.
‘The symptoms will clear by themselves, but treatment is available and can help reduce the length of an outbreak and speed up the healing process. Herpes is treated with antivirals such as aciclovir, which comes in tablets. Other things you can do to ease the discomfort during an outbreak include using ice packs, taking cool showers, and drinking plenty of water to keep yourself hydrated.
‘There isn’t a cure for herpes, which means you may get outbreaks again in the future. These are often less sever and don’t last as long as the initial outbreak. They can sometimes be triggered when someone is unwell, run down or stressed.
‘Using condoms will help reduce the transmission of herpes, but it can still be passed on by skin-to skin contact during sex if the virus is present on parts of the body not covered by the condom. That’s why we recommend regularly testing for STIs, particularly if you have started seeing a new partner. Good communication is also important.
‘There does seem to be a particular stigma attached to herpes, and people can often feel upset or embarrassed when they are diagnosed with it. We always reassure people that this is nothing to be ashamed of. STIs are just like any other infection and can affect anyone. Herpes is treatable and it doesn’t mean you can’t have an enjoyable and fulfilling sex life.
‘The stigma surrounding herpes can make people reluctant to discuss it, but it is nothing to be ashamed of. Everyone should feel able to have conversations about STIs with the people they are having sex with. If you or your partner do have herpes, talking about it openly and honestly will make it easier to avoid having sex at the times when it is most contagious.
‘If people are concerned about herpes or any other STI, we’d encourage them to get tested as soon as possible. You can use our Find a Service tool to locate your nearest sexual health clinic, where you’ll be able to get free, confidential support.’
Suzanna told her then boyfriend shortly after her diagnosis. ‘I was actually worried and afraid that he would break up with me – I wasn’t even thinking that I might have got it from him. It can be hard to trace back when you caught it, as herpes can lay dormant for years, or even your whole life.
‘When I told him he was very accepting and understanding.’
About a year later, the pair split up. ‘I found out that he’d been cheating and lying for the duration of our relationship.’
It was around this time that Suzanna also told friends and family about her herpes status, with a view to go public online. ‘Even at my lowest point, I always had an inkling I might speak publicly about this,’ she says. ‘I wanted to help other people.’
Suzanna says it took her a while to work up the courage to date. ‘I started by telling people on apps, as it felt easier. I was pleasantly surprised to find most people weren’t worried, or didn’t mind or weren’t afraid of it – and if they didn’t know much about it, they were keen to learn.
‘They appreciated my honesty, and saw it as a green flag.’
In March 2021, she posted on Instagram about having herpes – since then, her presence online has taken off, and she has over 295,000 followers on TikTok.
She says: ‘Herpes has very little impact on my daily life. It’s probably on my mind more than the average person, because I talk about it so much online.
‘There have been times when I have had more frequent flare ups – I used to have them every month as they can be triggered by stress and fluctuations in your hormones, as well as lifestyle factors like food.
‘But there are periods where I don’t get them at all. I also have periods where I take daily antiviral medication, which also reduces the frequency of the flare ups.
‘Most people get them a few times a year.’
Now, Suzanna is dedicated to breaking down the stigma surrounding herpes.
‘There’s this idea that if you have herpes you’re sleeping around, you’re not honest or responsible.
‘We look at herpes so differently when it’s oral – most people get it as kids when we’re kissed by our relatives.
‘But then when that person becomes an adult, and goes down on their partner and that partner gets genital herpes, they’re stigmatised for having an STI. It’s non sensical.’
In the UK, herpes isn’t routinely screened for in sexual health tests, unless you have symptoms – it can’t be checked for if you don’t have signs of the infection.
‘The mental health impact of knowing you have it, can be worse than having the actual virus itself,’ says Suzanna. ‘We need to break down this stigma.’
It’s a sentiment that sex educator, Emily Depasse, from the USA, agrees with. She had just graduated from university, with a degree in Gender and Sexuality Studies, when she was diagnosed with herpes.
She explains: ‘I had been sleeping with my partner for around two weeks.
‘There was one morning where I was like, something feels very different in my vagina. It sounds really silly, but I had got a new pair of underwear and it was a thong and I thought, maybe it rubbed me the wrong way.’
Emily called her mum, who suggested she go to the doctor.
‘The immediate reaction that the doctor had was, “this looks like herpes”. In that moment, it was, “oh, sh*t”.
‘Even with a background in sex education, I felt embarrassed, I felt shame, I felt disgust. And it was really painful, because I had lesions in my vaginal canal.’
‘You just think, this is incurable. You have it forever.’
At first, Emily says she felt some anger towards her partner – but has more compassion in hindsight. ‘I really don’t think he knew,’ she says. ‘There is a part of me that, that was very angry, but I’ve moved on. And I really think it was just a lack of education.’
In the aftermath of her diagnosis, Emily says she went through a ‘period of solitude.’
‘It impacted my work life and my overall self worth. I leant on alcohol way too much. I was really struggling. It was a very isolating experience.’
But Emily was also keen to talk about her herpes status. ‘I remember actually emailing my supervisor after I got the diagnosis. I wrote, “I can’t come into work today, because I tested positive for an STI, and I’m really not doing well.”
‘For me, it was important to be vulnerable and sort of speak it into existence.’
Emily says her relationship with her partner shifted after her diagnosis, and the pair split six months later, but she says friends and family helped her accept it.
She says: ‘You look at the stereotype of people with STIs or herpes and you compare yourself you’re like, “Am I this person? Do I fit into this?”
‘It was really important to have that external validation from people who knew me and could say, “Emily, regardless, you’re still you.”‘
Emily also takes antivirals and has learned the triggers that can indicate a flare up. ‘Stress is a big one for me,’ she says. ‘I’ve gone two or three years without having any symptomatic outbreaks.
‘I can feel the symptoms coming on, it’s kind of like a tingly sensation. And so I’ll just take a pill and it will either not come up or it will I’ll have very minimal symptoms.’
Emily, who had already studied sexuality, used her experience as a way to learn more about herpes.
She says: ‘I embraced it as an opportunity to learn and teach others. So, like many millennials in that time, I started writing about it. I had a blog and I made a Facebook post and I felt very empowered.’
As far as dating goes, Emily, who has recently come out of a relationship, is also open with potential partners. ‘I’ve always talked to people about it.
‘I’ve only ever had one person reject me. I find a lot of people want to know more before they make a decision. They want to be educated. That’s totally reasonable and wonderful.’
At one point, Emily did join a herpes-only dating app, but felt that only served to heighten the stigma.
‘After I was diagnosed, I felt I was only going to be able to ever date someone else with herpes.
‘It was a way for people to avoid rejection and confrontation, but it doesn’t necessarily support communication with your partners. These apps are just basically reaffirming that people with herpes only should date people with herpes.’
Now, Emily is also committed to breaking down stigma. She says: ‘I do most of my educating on Instagram and TikTok.
‘The one thing I want people to encourage people to do is just pause before they have a reaction to the idea of someone having herpes.
‘Before you think: “I would never sleep with someone with herpes”, just stop and think. Do your research.’
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