Killing the stigma around Herpes

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I recently had an outbreak of genital herpes (it is high on my butt cheek near my lower back, generally comes out about the size of a ten cent piece whenever I am run down) and had to tell my then casual sexual partner who is 31 yo.  His reaction was so bad and immature, and he was very uneducated re transmission and the numbers of people that have herpes.  

According to this…  Genital Herpes is a very common sexually transmitted disease/infection. It is estimated that 1 in 8 Australians have it and that around 85% of people carry HSVtype 1 and 20% carry HSV type 2.

So according to averages, out of every 8 sexual partners you have, one will have herpes – As someone who lives with it, I am tired of feeling ‘dirty!! How do you think we should kill the stigma? 

[ElleBelle]

I had an outbreak of HSV1 while I was travelling abroad, which normally manifests as cold sores but because I’m a special snowflake I ended up with big painful sores on the inside of my mouth that took weeks to heal. I normally disclose before oral sex, as I know it can be passed on even though I haven’t had an outbreak since, and my partners have had varying reactions to it. People seem to freak out over the word herpes, even though most people already have “the cold sore virus” or “chicken pox”.

[walk_on_walls]

@stephaniaaaah
@ElleBelle
What about herpes do you think they’re freaking out about? scared of symptoms? or that it’s not curable?

[Curiosity]

I would be great to see sexual health education far more informative and consistent in schools. Other than the PE teacher from Mean Girls approach “don’t have sex. Or you will get pregnant and die. Here take a rubber (condom).” There is so much need to improve the education around it, its disappointing that so many people operate on myth information, particularly around herpes.

[MsBlueStreak]

It would have been nice if Herpes (and HPV etc) had received even a remote mention during the STI discussion.  

The only disease that received any form of mention was HIV (“Use condoms or you’ll catch it. It’s everywhere. You’ll die!” + viewing some Tom Hanks in Philadelphia)

[ElleBelle]

@walk_on_walls I’m not sure if there is any singular cause of the freak out. Possibly because it’s not curable, or because it sounds and looks scary. Most people don’t have another break out after the initial one, and those who do tend to get them when they’re run down or stressed. That’s why it was called a cold sore, people often got them when their immune systems were lowered with a cold or flu.

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@walkonwalls A combination of things, like @ellebelle said, it looks and sounds scary and it is not curable.  It is manageable though – if you manage your health well, you minimise the chance of breakout.  If you do have a breakout there is medication you can take to shorten the duration or take a suppressant medication all the time so you never have one (also reducing greatly any chance of transmission) 

I think that with better education (like @msbluestreak said) it needs to be in the general STI discussion so we can get some more awareness around it

[walk_on_walls]

@ElleBelle @stephaniaaaah thanks for the insights! I’d always wondered why they were called cold sores and now I know 🙂

[Nurse_Nettie]

@stephaniaaaah thanks for bringing up this topic & sharing your experience! I talk to so many people who feel devastated by a herpes diagnosis. Many of them only ever had mild symptoms so the stress isn’t about the infection itself, it’s about stigma & incorrect information! 

MOST PEOPLE HAVE HERPES! So why do we act like it’s shameful??

From a medical perspective, Herpes (HSV1 & HSV2 – both types can affect the genitals) is an incredibly common & rarely severe skin condition, nothing more! We tend to hear & read about the worst case scenarios, but in reality, for most people it’s so mild they don’t even realise they have it!

One of the biggest worries people with herpes tell me about is what it will mean for their sex life in the future! I love the way this young woman talks about what it means for her! What do you think??

[MsBlueStreak]

Thanks for sharing that young womans story @Nurse_Nettie – I read the whole thing, and it was just an awesome read.

[Nurse_Nettie]

@MsBlueStreak if you liked that article, check out Ella Dawson’s awesome blog! She is all about de-stigmatising herpes… through articles, a TED talk, MTV appearances…. she’s spreading the word!  

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So I had to have the conversation about my genital Herpes with my new partner on the weekend (because I had another outbreak) and he was just like ‘oh yeah, everyone has herpes, no big deal’.  FINALLY! So good to have a positive response instead of a negative one 🙂 

[MintMilano]

I had a similar discussion with my current partner. I was pretty nervous about telling him but he was just like, “oh, is that it? half the world has it, no big deal.” It’s good to know that there are people out there who get it and don’t perpetuate the stigma. 

I think it’s important to reduce the stigma not just for partners but also people who get it. An acquaintance of mine recently confessed to me he’d been diagnosed with herpes a few months ago and he’d been depressed and considering becoming completely celibate and was even a little suicidal at one point 🙁  all because even he himself was totally uninformed or misinformed of the realities of herpes. 

[EarthMama]

I am so glad to hear that positive reaction @stephaniaaaah and @MintMilano and I am so sorry that you ever experienced such an unfair reaction. I must admit that I’ve spent most of my life completely ignorant about how common and treatable herpes is. That is until a herpes diagnosis devastated my friend and it became really important to see the light. Thankfully, after research and discussion, She is now acutely aware of the commonality and treatment, and so am I. Thank goodness for education and communication- these truly are the best tools for reducing stigma. 

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@MintMilano I’m sorry a person you know went through that.  I feel as though both our stories reflect that people are starting to learn and the stigma is slowly dissolving.  Like @EarthMama said, unfortunately it’s not until you get diagnosed or someone close to you does that you find out just how treatable and ‘normal’ it is to have herpes.  The sexual health nurse that diagnosed me was incredibly helpful in letting me know the facts, and I think that even though I still get nervous disclosing, I feel empowered with information!

[Author]

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