Stigma is overwhelming me

[Skye249]

Hi everyone,

I've had HSV2 for over a year and known about it for six months but it's my first time posting online here.

I live in the UK and have done a lot of research on herpes simplex, talked to the helpline staff at the Herpes Virus Association and recently attended a talk from a UK county head of sexual health who is an expert on herpes simplex. I have always struggled with the stigma element of the virus but I have become a bit obsessed with reading up on what people who don't have it (or think they don't) think about the virus.

I have found the amount of online abuse about people with genital HSV1 and HSV2 (particularly the latter), and the virus in general, absolutely staggering and overwhelming, even from those who appear fairly well informed about what herpes simplex is and what it does.

Nobody is going to dispute that HSV2 prefers the genital region and that it is more likely to reoccur than genital HSV1, but I'm finding it hard to work out why it has been labelled the demon of the two types for any other reason than pharmaceutical propaganda. I specifically asked the expert at the talk I went to whether there was any clinical evidence to support the theory that, location aside, HSV2 was more potent than HSV1 and he said there wasn't and that HSV2 is 'no worse' than HSV1,

I'm also frustrated with how the NHS seems to deal with it. I recently read their information about cold sores and genital herpes online and felt compelled to email then to inform them some of their information was incorrect. The biggest issue was that they said HSV2 caused genital herpes. I said this should be changed to acknowledge that HSV1 is now responsible for more than half of all genital infections in the UK. To their credit, they did this straight away and have changed all of their info pages to say that cold sores and genital herpes are caused by herpes simplex and that there are two types, rather than assigning the types to parts of the body. They still haven’t updated their cold sore pages to mention the risk of genital transmission though, amongst other outstanding updates.

I would like to know how other people have moved forward from the stigma.

I guess not reading vile comments from uneducated people online would be a good start!

 

 

 

[Unrequited]

I think how you are going about it is really comendable, and the main way is to really educate yourself, which you obviously appear to be doing.

Acceptance, and understanding, what society thinks is not correct.

I understand where you are coming from in regards to stigma though.

[keepsmiling:)]

Hi @Skye249

I completely share your frustration - I live in the UK also and have recently been diagnosed. I feel like the stigma way outweighs the pain and symptoms that HSV2 causes, but maybe that's because I get it more mildly than most. 

I completely did the same as you and spent a great deal of time looking at all the negative comments people had to say at the start of my first outbreak. There are so many ignorant people out there and I would not recommend wasting your time or energy looking at such opinions.

I think the main cause of the stigma is because of just how misinformed the general population is. In my opinion, the only way we can move past the stigma is if people start talking more openly about it and try to educate others. There are some really fantastic people posting about their experience with herpes on YouTube and trying to raise awareness about how common it is! 

[Lisajd]

There is a fb support group on the uk and they often have get togethers and the hva have mtgs as well.  I understand the stigma is ripe over there.  And the way I get past the stigma is just think of it as people who are completely uneducated and judgemental and basically don't let it affect me.   But the reality is you d9nt have to tell anybody else apart from someone who you are going to sleep with that you have it so why  be concerned about the stigma.  

[Skye249]

Thanks Unrequited, keepsmiling and Lisajd.

A lack of education was the reason my partner gave it to me and so I thought it was the first place I should start.

I started seeing a counsellor last year and she said that perhaps a lot of comments on the internet were unbalanced because unless these people had HSV themselves why would they go out of their way to make such comments. She suggested maybe they had an agenda of some kind. I will definitely try to stay away from reading stuff like that.

I'm a fan of Ella Dawson, who I think has been really exceptional in how she has addressed HSV, stigma and other related topics. Reading her blog helped me when I was feeling really low. In a way though, I think the fact she has HSV1 has made it easier for her to break down the stigma, because she doesn't have to first deconstruct all the arguments about how HSV2 is 'completely different' to HSV1.

I was celibate for much of my 20s so I was probably a bit naive about STDs and sexual health anyway, (funny that I went from worrying about being sexually inexperienced to worrying about having an STD!), but I'd honestly never heard anything bad about herpes. Now I have it I certainly am aware of the stigma, but I think it is worse in the US. Some people seem to treat it like its HIV in the US.

I have been to one HVA event, which is where I heard the doctor speak about HSV, and I think I agree with them that genital HSV1 should be treated the same way as oral HSV1, whichever type you have.

I don't know how realistic that is though and I am inclined to think that maybe a more feasible way to approach this would be to encourage people with cold sores to educate themselves more and disclose so that people start to make the connection between the types and realise you can get this anywhere on your body.

I was worried about the implications of the David Golding  case in 2011 when I read about it. I do understand he pleaded guilty to GBH, but apparently the case slipped through CPS guidelines and never should have gone to court. The concerning bit for me was that the judge listened to doctors giving evidence about how genital herpes has the same implications as oral herpes and still gave him a prison sentence. Apparently he was likely told nothing about asymptomatic shedding. It seems to me that in the judge's eyes the gravity of the case rested on the facts that a) he admitted he didn't tell her he had it and b) that he infected her genitally rather than orally. The HVA said it is unlikely another herpes simplex case would be brought to a UK court, but does that mean that those who disclose should get a signed statement from their sexual partner that disclosure took place.

 

 

 

 

[Skye249]

Sorry - meant to say genital hsv should be treated the same way as oral hsv, whichever type you have. 

[Disc0rdant]

2 hours ago, Skye249 said:

Sorry - meant to say genital hsv should be treated the same way as oral hsv, whichever type you have. 

I disclose OHSV1 before going "down there".  Just the right thing to do.  I dont get a signed disclosure.  Ridiculous.

[Disc0rdant]

But I havent had a bunch of partners either.  Been alone for about 6 months

[Skye249]

Agree it sounds ridiculous DiscOrdant. I believe that is a genuine fear though, that you could do all the right things and still end up in a legal battle.

I hope the people you've disclosed to appreciate your honesty.

I couldn't help but take a look at the 12 different products available for cold sores in my local Boots pharmacy recently. Not one of them mentioned herpes simplex on the back. I guess this is the same for genital creams though, if there are any sold 'on the shelf'.