fed up

[ele3]

I live with 3 girls, all of us in our 20s, and naturally the conversation turns to sex often. The other night the subject of getting tested came up and the ignorance that surrounds the concept of "I always use condoms" infuriates me. I had that mindset too, before being diagnosed, and despite always using condoms I contracted this. They don't know my situation and I came close to talking about it because I felt it might give them perspective but then chickened out. Just venting I guess. I feel very ostracized when i come back to school...all of my roommates have men in their lives (granted, I can't blame herpes on not having met anyone) and it is a constant reminder of my situation. Especially when the idea of an STD is just laughable to these people; they treat it as if it's an impossible situation.

I just feel lost. Between this diagnosis and a bad breakout of acne that started a few weeks back, I feel as if I've forgotten myself and am becoming reacquainted with myself. Like most people in this situation, I have my ups and downs with accepting HSV. It's been 2 years since I've been diagnosed and I have moments of not caring and feeling as if I'm over it, and moments of total dismay, which is where I'm at now. I've been very weepy and volatile and I don't know what to do.

[PositivelyBeautiful]

Hi ele3,

 

I know exactly how you feel, and was just having a conversation yesterday with a friend about sex, and the topic of testing came up. She indicated that she had only been tested once in her adult life, and since has had numerous partners, but ALWAYS uses condoms. I jumped in a gave a word of caution, without saying anything about myself. I just casually made her aware that even condoms can't protect anyone from stds, and used herpes as a concrete example. I reiterated about asymptomatic carriers of any STD, and that testing is important not only for her, but to protect other people as well. I understand your frustration with the situation, because not a lot of people know the facts... at one time, we didn't either. Btw, just because your roommates are casually talking about sex, doesn't mean none of them are carrying anything. They may know and not feel comfortable sharing with everyone (like you and me), or they might not even know that they have something because they have not been tested. Don't assume anything, right? Perhaps you should voice up a bit in those situations, not divulging anything personal, but just casually explain the facts. It might not change anything since nothing likely changes until it happens, but at least you are trying to educate them.

 

I also suffer from acne... so I feel your pain too. It can be overwhelming to deal with everything at once... but if there is something that H has taught me, is that my beauty is far more than skin deep. You are a truly amazing young woman... and you know how I know that? From a post (yoga and self-love) of yours that I have read over and over and over again in my moments of hardship and weakness. It was honestly one of the most inspiring pieces of self-love that I have ever read. I have shared your post with my friends too; those who don't even have herpes, because what you shared from your heart because of your experience with H has the ability to resonate with so many people, for so many reasons. I have also been deeply inspired by some of the quotes you references in that post too.

 

You are feeling shitty now, but know that there is a tremendous amount of strength and love in you. That in these moments of despair, reach for that strength and love. Find ways to remind yourself that you are beautiful, and that life is still full of wonderful opportunities. The pain of this moment will pass, and you are not alone.

 

A quote for you:

 

"When you get into a tight place and everything goes against you, till it seems as though you could not hang on a minute longer, never give up then, for that is just the place and time that the tide will turn." - Harriet Beecher Stowe

 

Sending lots of love.

 

 

[fitgirl]

I think we all have the tendency to forget the way we saw the world before H. I would venture to say that every one of us was ignorant on some level because it wasn't our reality and it was something that we didn't understand. Once we get our diagnosis, we research, reach out and get educated. We become "experts" on the topic of HSV and we get enlightened. When people make jokes or seem careless, we have to show them empathy because we hold the knowledge and we know better. We know condoms don't protect you enough, we know that most carriers don't know they carry and we also know we can never go back to that ignorantly blissful place they are now. Instead of letting it get you down, try to take control of the emotions you are feeling and use the opportunity to educate. You don't have to disclose to educate, you just have to see the situation as an opportunity to challenge the others to learn more about all STD's. Herpes is one of MANY potential STD's and some of the others are far more dangerous! Herpes is a gift, it forces us to learn more about ourselves and the things we value. It forces us to be more authentic and mindful of our choices in relationships and sex. Herpes and acne don't define you, they are merely inconveniences. Your skin will clear and your outbreaks will come and go but your life will be full of amazing days where you are living, loving and laughing. Pay forward what you have learned and don't let a minor skin aggravation take away from being YOU

[Sil88]

I had the same conversation with some of my guy mates last week. They mentioned a nearby brothel and assumed it's safe with a condom, at which point I said condoms don't stop everything. My other friend mentioned crabs, so I followed up with herpes and hpv. They looked quite shocked (and one is a trained pharmacist), and said I seemed like quite an expert. I said it was general knowledge (It's not) and we moved on. I do hate the fact that other people get away with taking so much risk compared to me, and I too usually hope that any discussions related to sex or dating end quickly. Don't have any help on the matter, but just sharing.. I guess we all have to get accustomed to this convo.

[In_The_Same_Boat]

You know… life can be weird. A few days BEFORE I had my first ever OB, I had a friend over. I asked her how a mutual friend was doing- who my friend knows better than I do. She told me that she was ok, but that she had gotten herpes, and for this reason, my friend no longer wanted to go to her house, use her towels, etc. I was just so surprised that this poor woman had contacted herpes, that I really didn't know what to say, except "oh my gosh… how?"

Meanwhile… throughout the evening, my friend kept telling me how amazing my new place was, and, would I possibly consider letting her move in with me, and be roommates…? Well, first of all, I don't want a roommate. But this all happened before I knew I had been exposed to herpes. When I had my first OB, complete with flu like symptoms a few days later, that conversation flashed through my mind. And guess what…? I knew exactly who NOT to tell! And guess what else? I know exactly who NOT to invite over when she needs a place to stay! She would be over here every weekend if I let her, not to mention the whole horrible "let's be roommates" idea. So, @ele3, I think it was wise not to share your situation with them- at least not yet- I think it sounds like they may not have the maturity to handle it. And you have to try to get out of your funk… Maybe just try to focus on school, interests, yoga, meditation, etc… I know people always say "don't compare yourself to others", but it's true… Don't worry too much about not having met "anybody" yet. You don't want to meet just "anybody", anyway… you want to meet somebody really worth meeting, am I wrong? Don't rush it… It will happen, but probably not until you are in a bit of a better place. So… get there! Take care and feel better.

[ele3]

@positivelybeautiful, thank you for your gentle words. I am glad that the article is helping to comfort people in our situation. You have truly helped turn my mood around and I'm grateful to you.

[ele3]

@fitgirl, you're absolutely right, and sometimes I forget how ignorant I was to STDs before I was diagnosed. It's not on the forefront of people's minds because a) it's an unsavory topic and b) they just don't worry about it, because no one talks about it.

Thank you for your kind words

[ele3]

@Sil88 I agree- I often hear people boasting about the number of people they've been with etc. and it's infuriating because you can do all the right things (not have one night stands, use condoms...) and still be affected. A voice inside is always urging me to be brave and share my story in hopes that it'll help others, but often I let the moment pass due to fear.

[ele3]

@In_The_Same_Boat that's unfortunate that your friend reacted that way. It's upsetting to see that side of a person, particularly when it's someone who you expect to be more open-minded and accepting. I'm sorry that happened to you, and hopefully you're able to surround yourself with more positive, uplifting, and understanding folks.

[fitgirl]

@Sil88 and @ele3 our peers don't get away with taking risks......they will learn their lessons the hard way (as most of us do). You are correct....we may be given this gift of herpes even if we did everything "right". the awkwardness and fear is normal. You don't have to disclose to make a difference, you can still be a leader and a voice. The conversations will get easier to have the more you have them. Test the waters, be brave and accept the fact that some people remain ignorant about so many things, herpes is just one topic of many where ignorance thrives (HIV, homosexuality, mental illness....the list goes on). if you learn to accept it. Own it and empower yourself, you will find that you no longer resent those people, instead, you feel sorry for them.

[caterpillarmonarch]

I think this is the fault of the "education" I (and most everyone got). We all were told that condoms protect you from everything.

[WCSDancer2010]

@caterpillarmonarch

 

There's a lot of truth in that statement ... that and the BS of "Abstinence" as the answer to everything. Yes they are right. If you don't have sex, you won't get an STD. But reality is, sex is fun. Sex is beautiful. And when you really like someone you may want to have sex with them. So it's not a *practical* answer.

 

Rather, they should be teaching *common sense* around sex. Teaching that even with condoms, you can get an STD. That getting black-out drunk is one of the best ways to get an STD because you do stupid shit when you are in that space. That you need to ASK about H testing (and tell your partners this too) to know your status. And that without SEEING your partners test results, you are taking their word .... which means you assume they really HAVE been tested for everything INCLUDING Herpes and that you can trust them to tell you the truth when their reality may be scaring them shitless that you will reject them :/

 

@Sil88 I agree- I often hear people boasting about the number of people they've been with etc. and it's infuriating because you can do all the right things (not have one night stands, use condoms...) and still be affected. A voice inside is always urging me to be brave and share my story in hopes that it'll help others, but often I let the moment pass due to fear.

 

Ahhhh ... FEAR .... that thing that keeps us from reaching our potential. If a bird never overcame their fear of taking that step off the next and into the unknown, they would never fly.

 

So I'm going to try to help you guys to just flap your wings a bit (and this is a warm-up for a new blog post that you have inspired me to write!) by giving you ideas of how to educate friends without "disclosing" ;)

 

1) One of the easiest ways is to say something like "You know, we had that talk the other night when you said you always use condoms, and I was sure I read somewhere that condoms don't protect you for everything. And so I figured I'd do some research for my own peace of mind. Turns out that Herpes and HPV CAN be spread with a condom and that it only gives us about 50% protection. I also learned that when you go for your STD test that they don't test you for Herpes unless you ask for it. And that 80% of people with Herpes don't know they have it and they can pass it on without symptoms. And did you know that if someone has a coldsore, they can give it to you with oral sex? That was all news to me!!!!"

 

Now, you don't have to pass ALL that on at once. Or you can start, and if they don't believe it, pull up the H Opp handout on your phone (you can say that was what came up when you googled STD's) and show it to them.... or if you are afraid they may read on here and figure you out, go pull up the Westover Heights Clinic booklet. Or the CDC pages. All of them are great resources.

 

2) Another way would handle it might be that when the subject comes up, say something like "Hey ... I'm confused.... I heard that a friend of a friend got Herpes from some guy who had no idea that he had it, and they even used condoms. I'm curious now. Lets look it up." Then put in the search words that will bring up the H-Opp pages. Or any of the other things mentioned above. If you work it out ahead of time you will know the search words that will bring up the result you want :)

 

3) Print out the handouts and just drop them somewhere around the house .... you don't have to admit that it was YOU that dropped it. ;)

 

You see, there's ways of getting information out without disclosing.... especially if you are prepared. :)

 

4) Now, the other option is to approach one person at a time ... starting with the most trustworthy person, and actually disclosing to them. a great way to start the conversation is like this:

 

"You know that conversation we had with Stacy and Brittney the other night? You know, about condoms and STD's? Well, I wanted to talk to you about it because I really care about you and some of the things that they were saying is just not true. I know because I actually got Herpes ... (while using a condom, from someone who didn't know they had it with no symptoms, from my long term BF, whatever your story is). I trust you to keep this to yourself because it's not something I am comfortable with having everyone knowing right now. I'm not ashamed of it, but when someone is ignorant, they can be cruel."

 

Now, *MY* experience of "coming out" was to realize that the people who are my *true* friends support me 100%. I have yet to have anyone be ugly to me to my face ... but if they were, or if I heard they were spreading rumors about me, I would just view it as a great message that they are not my friend and delete them from my life. I know that can be hard to "get" when you are more recently diagnosed... but 53 years and menopause have helped me to see a whole lot more clearly, especially with regards to who I will and won't allow into my life. And ugly, mean people aren't allowed anywhere near my inner circle any more :)

 

And finally, DO remember that at one time YOU were likely just as ignorant, (not necessarily mean, but perhaps unwittingly cruel). You never know who was in a room when YOU may have made an untrue statement about STD's and how people get them and what they are like.

 

I'm an Atheist, but a beautiful quote was when Jesus said "Forgive them, for they know not what they do". People are often cruel because they don't know better. Love them in spite of it. If they are cruel because they are just plain mean and nasty, just don't let them into your life. But don't take what ANYONE says about Herpes personally if they don't live with it themselves ... because it is their "ignorance" speaking ... and it has NOTHING to do with you or how beautiful and lovable you are :)

 

(((HUGS)))

[fitgirl]

@wcsdancer2010 as always, practical and informed advice, it is very helpful to the new members of the "club" to have tangible and practical tools to help them through the minefield they are negotiating through. It's hard enough to be young, trying to figure this life out. With support and education, we can change attitudes one ignorant and naive person at a time. The change in attitude starts with our own.