I’ve recently joined many online support groups related to health issues, mainly my Crohn’s and my HSV2, aka Genital Herpes.
The stigma sticks out to me immediately in noticing how I used to talk about HSV2 and how I now talk about my HSV2.
And the first thing is that prior to my diagnosis, I called it herpes. After my diagnosis, I hate the word herpes.
In the groups that I’ve joined, and I’m not ever going to share information from these very personal and private groups, I’ve noticed sort of the same thing.
People talk about having HSV1 or HSV2. They may talk about the location, whether it is oral or genital located (both can be both, so “genital herpes” is a bit of a misnomer, though it is generally accurate).
And here is where we find the power of words.
Herpes almost sounds like HERRRRPEEEEEEEEES! And it has the deep organ playing in the background.
Seriously, watch the video… you really need the full effect…
Those with it, and those who are sensitive to those with it, will keep it more clinical, fact based, and fear reductionist.
I am going out on a limb here, but the emotional devastation, and it is emotionally devastating to most, is likely similar to HIV. For instance, most people who say “AIDS” will get immediate push back that HIV is not AIDS. But, I think the real push back is that the 1980s and 1990s stigmatized the term AIDS to the point that it’s almost a curse word now.
Now, let me say, those of us with HSV are not in any way comparing ourselves to those with HIV… but our problems are very very similar.
One advantage, if you can even call it an advantage, is that when you talk about HSV, most people have no clue what you are talking about. So, if we are talking to someone who has no knowledge of it, we have to say “herpes”.
And, we’re tensing up for the reaction…
And then we withhold our reaction…
And life goes on.
What’s interesting is that I have an immediate comparison because I’m so fortunate to have two incurable diseases. Note my sarcasm at fortunate.
I also have Crohn’s. And when I tell people about Crohn’s, I get this immediate reaction of “Oh, that’s so sad, I knew somebody with that, and I just hope it’s not so bad for you. How are you feeling?” Or, it’s something along those lines.
Sympathy, empathy, caring, concern, personal interest, and kind words.
That is NOT how people react when I say herpes.
So, in this article, I have two audiences. Those with HSV and other STIs and those who talk to those with HSV and other STIs.
If You Have An STI
First, you need to have a thick skin. Anyone you disclose to can react very negatively and judgmentally. People don’t choose to have an STI. And an STI doesn’t mean you are a slut or don’t use protection. But people are generally ignorant. Nobody blames someone for having cancer, Crohn’s, alzheimer's, or even the Flu (who likely got it because they don’t use tissues, wash their hands in the bathroom and before eating, and drink after other people).
In other words, the usual first reaction is that “Well, that’s what you get for…” insert whatever reason they come up with in their head.
And that brings us to the second point, be selective.
I’m a relationship writer. I’m going to be open. I’m going to put it in my profile. And people with HSV who say nothing about it in their profile will reach out to me.
But I’m not the normal. As much as I push people to be open about their ethical non-monogamous status, that at least is a choice.
Someone with an STI has no choice, ethically, morally, or legally, from disclosing at some point.
And that can make you feel like a cat backed into a corner by a german shepard. This leads to stopping dating, and isolation.
But start coming out slowly to selective people you know will care. Start talking to people and groups online. Start socializing with people of similar situation. Build up that thicker skin, and learn how to disclose in the safest and most accepting way possible.
If Someone Discloses Their STI To You
First, if someone is ever going to tell you that they are going to disclose something private to you, there is always two safe facial expressions to put on your face.
Not shock, not disgust, not surprise, not anger.
Either you keep a complete poker face of no reaction, or you have a reaction of concern.
Any other reaction is likely to hurt the other person. If you care about other people, you will care enough to keep this in mind.
You hearing about it is far less hard than them having it, living with it, and disclosing it to you.
But what do you say? That’s easy, you don’t have to say anything. You just have to ask questions.
And the best questions are how and what questions (more on this in later articles about mastering communications, but trust me on this, this is an expert opinion of world leaders in negotiations).
How are you feeling?
What does that mean?
How are you dealing with it?
What does your family think?
Those are all great openers. But, in that first conversation, the best thing is to not throw out your uneducated opinion, unless you are the doctor talking to a patient.
The person with the STI is already going to know far more about it 20 minutes after diagnosis than you likely have ever known about it. This isn’t always true, of course, as there are some people who educate themselves. But generally, this is true.
And even if you know a lot about it, most people are not disclosing because they are looking for help, and you are not likely the best source of help.
If you do offer your opinion, this can easily be seen as trying to control, manipulate, judge, or bully the person. It can be seen as patronizing and dismissive, even if you have the best intentions.
This is why therapists spend most of their time with their mouth shut and their ears open. It puts people at ease, and makes them feel listened to.
What do you have to do after that? Nothing. You aren’t responsible for their STI or solving their life issues. If you are a friend or family member, just remain their friend and family member.
If they need something else, they will be sure to reach out to you if they feel safe.
I can’t solve the stigma problem. That’s way bigger than me. But if I can encourage people to feel safer talking about it, and encourage people listening to do so with empathy, then the stimga problem starts to solve itself one person at a time.
Why should you care? You don’t have HSV?
Actually, 20–25% of you reading this article have HSV, and 80% of you with it have no idea because you have no symptoms and never specifically requested the test, and false negatives are common without multiple blood tests during peak symptom times. So, you might have more in common with the person coming out to you than you’d ever want to know.