Living with Herpes

Did you know…?! The vast majority of screening clinics do not routinely screen for herpes. Oh, you didn’t know? No sweat, that’s what we’re here for!

In the present article, I deconstruct certain preconceived notions related to herpes with the hope of helping to normalize it. I spoke with three people who have been living with herpes for a few years to present their points of view.

“I’d like people to understand that it’s not the end of the world and that they also have to take the time to listen. The person who has herpes will have informed themselves and will eventually know how to manage it. You have to give them a voice, which society just doesn’t do.” – Theo*

What is herpes?

Herpes is a sexually transmitted infection defined as chronic, which means that it can’t be cured and that people who carry the virus do so for the rest of their lives. There are two types of herpes, both caused by the herpes simplex virus (HSV) (BC Centre for Disease Control, n.d):

• HSV-1: Type 1 herpes often manifests around the mouth (hello, cold sores!), but can also be transmitted to the genitals.
• HSV-2: Type 2 herpes occurs mainly in the genital and anal area, and very rarely on the face.

Both types are transmitted in the same way: by skin-to-skin contact with an infected area, whether or not the person with herpes is showing symptoms. In most cases, it’s transmitted through oral, genital, and anal sex, or by sharing sex toys.

Understanding the two types of herpes is an important step towards normalizing this STBBI. In fact, it will help deconstruct the idea that having genital herpes is the end of the world—the worst disease to be diagnosed with—while getting cold sores on the mouth are no big deal. Both are caused by the exact same virus, and the symptoms are usually the same!

Théo has been living with type 2 herpes for almost a year now, and expresses that he still feels frustrated with the double standard:

“Cold sores are also herpes, but people don’t seem to think much of it. On the other hand, if your herpes is on your genitals, people condemn you.”

So, why does genital herpes have such a bad reputation when so little attention is given to cold sores on the mouth? Léa Séguin, diagnosed with type 1 herpes eight years ago today, has her own hypothesis: “We live in a culture that is generally very sex-negative, so if you contracted something through sex, it’s always seen as worse than if you contracted it through a non-sexual activity.”

This (unfortunately) makes sense. The stigma associated with genital herpes is usually much worse than the symptoms themselves, and can often have a negative impact on the psychological and sexual well-being of those who are affected (Scoular, 2002). A lack of sex education has far more repercussions than we may think.

Herpes, a collective infection

On a global scale, herpes remains one of the most common and widespread STBBIs… yet, ironically, one of the most misunderstood. Who knows how many people around us are affected by herpes?

Théo received the answer to this question when he started talking to friends and family about his diagnosis. Not only did his mother share that she had lived with herpes for decades, but many friends and acquaintances also told him that this was their reality as well.

Surprising? Not really, actually:

• According to a 2013 study by Statistics Canada, approximately 14% of individuals between the ages of 14 and 59 (at the time) were carriers of HSV-2. Just to give you an idea, 14% is approximately 5.4 million Canadians: that’s a lot of people!
• The prevalence of HSV-1, which is much higher, varies from one study to another. However, it is estimated that between 50 and 90% of Canadians are carriers (Singh et al, 2003).

So, if you thought you were alone, think again! The taboo that surrounds herpes, which is perpetuated through a combination of bad jokes and misinformation, unfortunately amplifies the silence around people’s lived experiences. How many times have we heard a comment like: “Oh, it could be worse, you could have herpes”?

It’s also worth noting that 80 to 90% of the people who do carry the virus will never develop symptoms!

In addition, many will only experience a single flare-up in their entire lives.

This is the case for Théo, but also for Leïla*, who was diagnosed three years ago. After experiencing their first flare-ups, , both remain asymptomatic to this day.

Leïla explains that, having had the occasional cold sore around her mouth since childhood, she has learned to recognize the signs of an upcoming flare-up as well as possible triggers. Note, however, that an absence of symptoms is not always synonymous with zero risk of transmission!  

Léa, on the other hand, had to manage several flare-up episodes during the first months following her diagnosis, which significantly decreased over time in terms of frequency and intensity. Currently in a relationship, Léa is also aware of and sensitive to the signs of an upcoming flare-up, and communication between her and her partner is seamless: as soon as she feels there might be a risk (e.g., a tingling or unusual sensation in her genitals), the two abstain from having sex (this “dry spell” usually lasts no longer than a week).

Paying attention to your body and being aware of what’s going on down there (taking a look from time to time, doing regular check-ups), thus becomes a must for most people who have ever experienced symptoms. That said, everyone should adopt this habit, whether or not they have herpes! Just saying. 😉

To tell, or not to tell?…

The process of discussing it (or not) with one’s partner(s) varies widely from one person to another. Even though disclosing one’s genital herpes status is a matter of personal choice, , it’s nevertheless encouraged by many health specialists: informing your partner(s) could reduce the risk transmission by over 50% (Schiffer, 2009).

Yep, communication works miracles! It can help you get informed and adopt certain behaviours (like using protection during a flare-up) that don’t need to dampen pleasure or passion.

Ever since receiving her diagnosis, Léa has never had a bad experience disclosing her status to partners. When she feels emotionally safe with someone, and always before a first sexual encounter, she brings it up with a certain lightness, explaining that she sometimes has cold sores, but that they are… down there! She claims to have never had any negative reactions from partners.

Unfortunately, this is not the case for everyone. And, to anyone who has been ghosted or rejected over this: your experience is valid, and if you need any, you will find several resources at the end of the article.

“Legally, it’s not mandatory to disclose it, but I still want to tell the person beforehand, so that they know that I respect them, that I am giving them the chance to say no if they want to, and that it’s an informed decision.” – Léa

Léa also considers that getting informed about herpes after a diagnosis can be very reassuring and even give you ammunition against certain people’s lack of education: “Let’s say that someone shoots something your way. You can rationalize or trivialize it with the knowledge you have accumulated on it,” she explains, before adding, “Knowledge is power!”

There’s no perfect way to disclose your herpes status to your partner(s). Trust yourself, and if necessary, try to draw inspiration from the following tips and key messages:

• Get informed. As Léa said: “Knowledge is power!”
• If possible, keep the conversation casual, without sounding alarmist or dramatic (because herpes is not dramatic!).
• Try to imagine yourself in your partner’s shoes. How would you like to have been told about it?
• If the person doesn’t respect you after your disclosure, too bad for them! Text them the link to this article afterwards. 😉 You deserve to have sex and relationships with people who respect and appreciate you for who you are.
• Remember: herpes does not define you, just like any other chronic condition such as asthma or diabetes!

For more tips, you can also take a look at our other article on how to disclose a positive STBBI status.

So why don’t clinics test for herpes?

Screening clinics don’t include herpes in their list of basic STBBIs to screen for. In fact, it’s not even recommended to do an HSV test when the person has no symptoms!

• Unlike many other STBBIs, genital herpes generally poses no long-term health problems.
• The blood tests performed to detect herpes in asymptomatic people are unreliable. Indeed, it’s not uncommon for results to be falsely positive. And no one wants that!
• A positive test result can’t pinpoint the area of transmission. Was it on the mouth? On the genitals? Unless the person experiences symptoms, they’ll likely never know.

So what to do when you notice symptoms (tingling, redness, burning, sores) after a few encounters between the sheets? Or, following a sexual encounter, your partner calls to let you know that they’ve just been diagnosed with herpes. What now?

• Go see a doctor who can advise you in taking the approach best suited for you. You can contact, for instance, L’Actuel, one of our partners for DépistaFest.

For support or information on herpes, here are some platforms and resources available on the Internet:

• The podcasts Life with herpes and Something Positive for Positive People
• The Instagram pages @my_boyfriend_has_herpes and @honmychest
• The blog Life with Herpes
• This genital herpes counselling tool from the Public Health Agency of Canada
• Don’t hesitate to seek counselling from sexologists and psychologists

*These names have been modified for anonymity.