Is the stigma worse than the disease itself?

[Inquisitive1986]

As I continue to learn about genital herpes I keep coming across a theme. That is that the psychological and social effects of contracting herpes are much more painful than the disease itself.  Please keep in mind I am not downplaying the discomfort of the sores or the intense symptoms some people experience. 
 

When I talk to people about the condition the things that seems to be of much more concern are the social isolation, stigma, difficulty dating and fear of never finding a partner. These same people have described outbreaks as more of an annoyance and discomfort than a debilitating disease.  Has this been anyone’s experience? The more candid you are the better. Thanks so much. 

[Thebiglobowski]

In my personal experience I'd say yes the stigma is 10000x worse then the actual disease at least for me. I've only had one outbreak since I was diagnosed 2 and a half years ago, but it's still a real bruise on my ego even though it's currently not a huge negative impact on my life thankfully as of now. It's just the whole stigma and myths that are created around it that make it worse then the disease itself. For most people it doesn't even affect their daily lives

[Inquisitive1986]

That’s what I’ve heard too. Old school sex education and comedic punchlines make it seem like it is life ending. Thanks for sharing your experience. 

[Flowerteacher55]

Hi!! 

Yes, stigma is very crushing. It really hurts so much. 

Honestly after I got herpes, I started to realize how often pop culture mocks herpes! Family Guy, late night hosts, and other shows make fun of it, and every time they do I wince a little or squirm in my chair. I mean, I poke fun at myself, but it's different when someone else does it, of course 😢.

If anything, overcoming the stigma and fear is one of the hardest parts about having herpes. However, self love and acceptance really carries you far ❤️.

Every time I start to say negative things to myself, I challenge those thoughts with positive, truthful thoughts: "I am worthy of love. I am clean. It's no my fault I have herpes. Etc..."

The amazing thing is this forum acts as a positive way to shake off the shame and guilt and obtain self love and happiness. And we help lift each other up, which helps us all heal!! ☀️🌻

Blessings,

Grace

 

[Starshine42]

I’ve only had one breakout too with genital hsv1. It’s awful because of the stigma. It’s really not that big a deal but people get scared when they hear the h word. It’s awful. 

[DeMar]

Here's my experience...

About to start a new sexual relationship my partner asked if I'd get STI tests and she did too.
In Australia, the doctor told me he did all tests except some that weren't relevent to my lifestyle (I assumed anal related as I'm herterosexual male).
Everything was good as expected but my partner noticed he hadn't tested for herpes.
So I had to go back to the doctor and he was very reluctant so I had to insist.

I got a blood test and I expected negative but it came back positive for HSV2.
I have never knowingly had an outbreak so I didn't know when I'd got this.
Anyway, for me the stigma meant nothing, didn't affect me at all. But what did (and still does) affect me was the fear of passing it on. My partner initially said we had to break up as she didn't want to risk it, but then, as we were crazy about each other, changed her mind and we were together for 2 weeks and ended up not using protection. My partner said she was "all in".

We live in different states and I returned home. My plan to return was delayed because of covid. But in the meantime, my partner go so intensely anxious that she manifested physical symptoms (except blisters, but everything else). She could not bear going to the doctor because of the shame. She was afraid of passing it on the her parents by touching surfaces etc. I spoke to her calmly about these things but the fear had taken hold and she had a very rough few months until she finally got a negative diagnosis.
But this anxiety and fear has eaten away at her. It wasn't helped by a friend of hers who has HSV2 and experiences bad outbreaks, telling her she WILL get it if she is with me etc.

So fear and anxiety is playing a big part.
For me, the social stigma is nothing. And luckily for me the symptoms are nothing. But I am afraid I am going to loose the love of my life through the fear of transmission.
And for my partner, the social stigma and (self) judgement and shame was a very big thing.

Personally if I could have the outbreaks but know I was safe on other days, I'd take the outbreaks. But it doesn't work like that.

[Flowerteacher55]

@DeMar Hello,

I am so sorry that your partner has been struggling with such debilitating anxiety. It is wonderful that she chose to be with you. It seems that external pressures from society and others in her life are causing her to feel worried and anxious. 

If it would help, you can take antiviral medication. Also, she could read this site or ask questions on the forum! Partners of those with HSV have posted on here, and we are happy to address any concerns they may have. 

If anything, remind her not to obsessively Google things about HSV. So many sources are unreliable or are not fact checked, and googling can lead to psychosomatic symptoms, anxiety, and getting lost down the Google rabbit hole of worry and fear. If she is someone comforted by information and facts, offer reliable resources, such as the New Zealand Herpes Foundation, at https://www.herpes.org.nz/

Another thing that helps is being rational. As someone with OCD, I completely understand her fear of contaminating services or infecting others. However, by reminding myself of the truth- that HSV isn't passed via clothing, hugs, doing laundry, etc- and that I am not bad, dirty, or have any reason to be ashamed, I get through the anxiety. 

She may be worried about the "what if" issue. Perhaps by addressing the worst case scenario, she may feel better. For example, she may be worried is she did contract it, she would be ugly, bad, worthless, dangerous, etc. Of course, none of that is true!! Maybe sitting down and addressing these fears would help her. 

Remember, love is stronger than H. It's stronger than anything!!!! 

I am praying for both of you! 

Blessings,

Grace

[Caiti]

Everyone’s experience with herpes varies. For me, my first outbreak was horrible. I had to go to the ER and could barely walk from the pain I was experiencing down there. I was put on heavy pain meds and found out that I had genital herpes. It really flipped my whole world upside down. Outbreaks after the first year tend to be less aggressive and some people experience not having outbreaks at all for a very long time. Outbreaks can be frustrating and embarrassing but the stigma you asked about can be crushing as well. People who are uneducated about herpes may not be as accepting and could be very quick to judge someone for having herpes instead of displaying empathy. Herpes jokes are common in tv series and movies which displays herpes as ‘gross’ or ‘disgusting’ which truly adds to that painful stigma. Education and compassion is really the only way to change the way the masses perceive herpes and brave people who are willing to discuss their herpes experiences openly. Ella Dawson is a writer and she also did a Ted Talk about her experiences with herpes and how she leads her dating life now. She also does a beautiful job of explaining how we can de-stigmatize herpes. 

[Flowerteacher55]

Hi, @Caiti!

I hope you are well!

Thank you for sharing your story. I am so sorry that the first OB was so painful. That is so terrible, you didn't deserve that! 😞  

I really appreciate how you addressed such essential topics related to stigmas! TV, movies, and comedy definitely mocks HSV. Literally, it makes me cringe when I watch something that mocks it! Also, people make jokes about STIs all the time, especially at the age I am (22). 

As you so beautifully said, education and compassion ARE the key ways to reverse the stigma. Advocating and supporting those with HSV also is essential! What is really cool is how WE (people with HSV) are the driving force being changing stigmas! Hooray for us! 

Ella Dawson is AWESOME! She is truly a blessing and she is so inspiring ❤️! 

Sending blessings and positive energy your way! 🌻

-- grace