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Killing the stigma around Herpes

stephaniaaaahstephaniaaaah Posts: 117 Community Manager
edited April 2017 in Sexual Health
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? 


  • ElleBelleElleBelle Posts: 410 Community Manager
    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_wallswalk_on_walls Posts: 191 Mod Squad
    What about herpes do you think they're freaking out about? scared of symptoms? or that it's not curable?
  • CuriosityCuriosity Posts: 197 Mod Squad
    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.
  • MsBlueStreakMsBlueStreak Posts: 475 Rock Star
    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)
  • ElleBelleElleBelle Posts: 410 Community Manager
    @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.
  • stephaniaaaahstephaniaaaah Posts: 117 Community Manager
    @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_wallswalk_on_walls Posts: 191 Mod Squad
    @ElleBelle @stephaniaaaah thanks for the insights! I'd always wondered why they were called cold sores and now I know :)
  • Nurse_NettieNurse_Nettie Posts: 319 Mod Squad
    @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??
  • MsBlueStreakMsBlueStreak Posts: 475 Rock Star
    Thanks for sharing that young womans story @Nurse_Nettie - I read the whole thing, and it was just an awesome read.
  • Nurse_NettieNurse_Nettie Posts: 319 Mod Squad
    @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!  
  • MintMilanoMintMilano Posts: 181 Mod Squad
    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. 
  • EarthMamaEarthMama Posts: 149 Mod Squad
    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. 
  • stephaniaaaahstephaniaaaah Posts: 117 Community Manager
    @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!
  • PurplePurple Posts: 90 Mod Squad
    Hi @stephaniaaaah, so sorry to hear about your partners initial horrible reaction and also thanks for helping normalise it by talking about it! So many people have it and the stigma is just unfair & gross. Someone I know actually contracted herpes after being sexually assaulted and was suicidal and depressed for a very long time - it's disgusting that people joke about it when people contract STIs from being sexually assaulted, being cheated on etc (not throwing anyone under the bus who has an STI from having casual sex or whatever, just trying to demonstrate the many ways it can be transmitted). I have no idea how we can end the stigma though, considering the misinformation just seems to be continuing over the years. There are people like Ella Dawson and she is pretty damn awesome, but generally societies view doesn't seem to be changing :( 
  • EarthMamaEarthMama Posts: 149 Mod Squad
    edited 19-01-2018
    @Purple That is such an important point to raise and I can imagine what a lack of control that person must have felt from the assault and then of course, the diagnosis. I feel like the stigma comes under the umbrella of humans fearing things they don't understand and cannot control. If anything, education must give us the ability to recognise we all feel afraid sometimes and we are all also out of control i.e. susceptible to the hurdles life throws at us. 
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