I was diagnosed with herpes (type 1) about two years ago. I’ve spent thousands of dollars seeing one of the best sexual health psychologist in Australia. I have been taking antidepressants to get through this period of my life. My reaction to this has been dramatic and embarrassing – you would have thought something a lot worse than herpes has happened to me the way I’ve been acting. I am completely lost and I don’t know what to do. I was diagnosed as a result of my first night stand, he had no symptoms present and we used protection. I have friends that go out and have one night stands without protection and although this is a horrible thing to think, I feel so angry that I was so safe and still ended up with an STI and they can do whatever they like and not contract anything.
I remember the one and only time I’ve disclosed to someone they literally recoiled back in their seat, even though they themselves had type 1 orally. They didn’t want to see me again. There is so much misinformation out there and even though I know that it isn’t a big deal and literally 70% of people have type 1 oral or genital herpes, I feel like no one is informed about the actual statistics, or the fact that it’s rarely transmitted when using antivirals and condoms. People hear the word herpes and run away as fast as they can.
I feel like I’ve been punished and I’m considering a life of celibacy where I just never date again to save myself the heartache. Before herpes I was able to date and have sex as I like, now my life is full of medication, anxiety about disclosing and feelings of worthlessness. I have dated a few times since that disclosure but have always cut them off after a couple of dates. I can’t date anyone who I have mutual friends with because the fear of them telling someone else and this getting out is so frightening to me. I feel like when it comes to disclosing, the risk and embarrassment of being rejected is not worth the reward of a potential relationship. There are so many people with STIs that can disclose so well and it’s all fine, I remember the first time I disclosed I felt sick and I almost fainted. I can’t see myself disclosing again. I think it would be best to just put any sexual/romantic contact aside and focus on my career, friends and family from now on.
TLDR: I have type 1 herpes and am considering a life of celibacy.
Thank you SO much for being able to open up about such a sensitive (and like you were saying, common) issue! Firstly I just wanted to say that you should in NO way feel guilty about contraction HSV-1, you did absolutely nothing wrong at all. I can definitely relate to the shame and need to hide away from the world after being diagnosed though, I have INSANE oral breakouts far too often and like wow can I get a new face? What’s important to remember, is that it’s totally manageable and so many people go through exactly the same things as you. You’re not alone.
If you’re being as careful as you are taking medications and are informing partners of any STI you have, celibacy is definitely not something you need to resort too (unless you want to! consent matters too)!! Of course, focusing on yourself is great though!! Definitely, do that, but in doing that also embrace who you are. Who you are is NOT HSV-1, it’s just a person who is living with it.
I feel like I’ve ranted a lot about self-positivity here haha Also something that interested me if you don’t mind me asking, I didn’t know there were specific sexual health psychologists! How did you find out about that?
I’m going to leave some links below to some other threads where herpes was discussed and hopefully, that can highlight how truly common it is, and how talking about this stuff is okay too. There’s no shame or judgement here, you’re safe with us. You can get through this. :heart:
Hey @1234 thanks for sharing your story. I think what you’re feeling is extremely common among new herpes diagnoses – I was diagnoses with HSV-2 about a year and a half ago and I remember feeling like my sex life was going to be over. I was so upset, but I started taking the anti-retrovirals and talking to people about it and realised that a lot of people I knew actually had herpes, it just wasn’t something they talked about very openly. which is a shame, because if people did talk about it more we might not feel so alone and distressed during that period after a diagnosis.
I’m so sorry that you’ve had that reaction to your disclosure, that person was clearly uninformed about the realities of living with herpes. I don’t necessarily have any advice, but I can offer a better example – I’ve had two relationships since my diagnosis, and with both partners I was able to open up about having herpes, and they were completely fine with it because they knew about the realities and what it actually meant. I did have a few less favourable reactions, and it’s just made me aware to be a little more thoughtful about who I want to be in relationships/have sex with. It might make things a little more difficult, but you can still have a normal and health sex life if that’s what you want, so please don’t let herpes get in the way of that!
Hey @1234 I’m so sorry to hear that you’ve had a bad experience telling someone about your diagnosis. But that’s one person, and It would be a shame to swear to a life of celibacy on one person’s reaction.
Telling people is never going to be easy, but as @tea says, if someone can’t understand the realities (and just how common it is!) then they might not be the right person to be having a relationship with anyway. But, whatever you decide to do, focussing on yourself and the things important to you is always a good thing, and it will hopefully help to overcome some of those anxieties too.
I posted this on a thread the other day as well, but @nurse_nettie recommended this Ted Talk about someone diagnosed with Herpes. I found it fascinating to watch and hopefully it’ll help you feel that you’re definitely not alone!
@1234 Thanks for sharing your experience! Sounds like you’ve been having a really hard time, but it’s great that you’ve reached out for professional support & also that you’ve come here! I hope this little community can give you some comfort 🙂
The worst thing about herpes is the stigma which is based on bad information, as you know! Thank you, @ekoorb9 for sharing Ella Dawson‘s video. She has done such a brilliant job of representing the facts about herpes. I wish more people knew how common herpes is (most people have it!) & that it is nothing to be ashamed of.
@1234 you may already know intellectually what Ella Dawson says is true, but it can be hard sometimes to change how you emotionally feel about it. Getting a bad reaction from someone may strengthen the feeling that everyone thinks that way. You can’t control how people respond, but I do have some tips about how to talk about herpes to a new or potential sexual partner.
TIPS for disclosing HSV 🙂
1) Don’t set them up to be afraid
If you start the conversation by saying: “I have to tell you my most shameful secret. It’s the worst thing that’s ever happened to me & I don’t want it to happen to you,” they will be afraid! That might feel like the honest truth, but it actually reinforces that herpes is objectively terrible. Remember: most people who have herpes will have no symptoms or really mild symptoms that never get diagnosed.
2) Tell them the facts
For example: “I want to let you know that
I have herpes type 1. Do you know what that is? Have you ever had a cold sore
— that’s usually caused by herpes type 1. I’ve got it on my genitals, but it’s
the same infection. I’ve learned since being diagnosed that
most people have herpes type 1 — 70%! But because it often causes no symptoms
or super mild symptoms, most people don’t know they have it. I take antiviral
medication & use condoms which makes it really unlikely to pass on.”
3) Give resources
There’s a lot of really bad info online so point your love interest in the right direction:
Herpes.org.nz has practical, medically accurate, non-stigmatising info about herpes.
NSW Sexual Health Infolink provides supportive info, advice & referrals over the phone to health professionals & the general public about all STIs, including herpes: 1800 451 624.
Hope that helps!
So sorry to hear you’re going through this. We’ve also discussed killing the stigma around herpes here. You’re certainly not alone in this.
Thank you so much for your advice, I really appreciate the compassion you have all extended to me. @nurse_nettie you have been very informative and helpful and yes i guess i am going through a hard time. I also feel a lot of shame because I was raised in a fairly conservative household and I feel like this was my punishment for having a one night stand with someone I didn’t know 🙁 also I just feel that because they had no symptoms and I still contracted it that it’s a sign I really am supposed to be alone, because the chances of contracting it were so slim. I can’t change these thoughts for some reason, even though I am aware of how illogical it sounds. It just hurts because I don’t think the stigma will ever go away by society on the whole. there’s a select few that understand that it’s not a big deal, but generally i feel like most people are terrified by herpes. thank you @tea and @mintmilano for being honest and discussing your story too.
@1234 yeah, I know exactly what you mean about having those thoughts and being unable to shake that feeling, even though you’re still armed with all the facts. It’s easy to fall back into those feelings, and then end up feeling bad about feeling bad the you know you shouldn’t, and it turns into a bit of a downward spiral. Sometimes I think the only way that we’re ever going to fully eradicate the stigma is if we talk about it more and make it more common, but then that’s also easier said than done, and I have trouble talking about it candidly too.
Remember that the chances of contracting it aren’t necessarily slim – only chances of presenting with symptoms, and even then its not a curse or a sign from God or anything. Just a bit like winning a slightly unlucky lotto, I guess 😀 But please don’t ever think it’s a sign that you’re destined to be alone. You’re not alone: there’s plenty of people out there who live with herpes, and probably even more people who love those people with herpes. This is just a bump in your road – its not the end of the road by any means 🙂
@1234 thank you so much for sharing your story. I contracted herpes type 1 from a really bad casual encounter around 2 years ago as well, and I can remember feeling exactly the same way you described. I just remember bursting into tears at the doctor’s office when I got the diagnosis – I was so scared I’d never be able to date or sleep with anyone again. A few months later I started on antidepressants, which helped but I still felt really anxious about dating.
I think the kind words and advice from everyone here are spot on.
When I was on an overseas uni exchange, I had a terrible breakout and didn’t have any coldsore ointment with me. It was so anxiety inducing but then a whole bunch of girls in my flat had flare-ups at the same time. So we ended up all disclosing to each other and talked about how we discussed it with our partners, our favourite coldsore ointments, media representation and social stigma. It did so much for my confidence hearing about other’s stories and meant I felt way less alone. So I was also recommend finding personal positive stories on YouTube and getting strength from other’s experiences.
@1234 thanks for sharing – I know that everyone on here has given you some great advice and encouragement. Just want to let you know I am another person who thought my genital herpes would ruin me forever, and yes it is tough coming to terms with a diagnosis, but you can have a happy and healthy sex life – and you deserve to have a happy and healthy sex life <3
Hi all it’s 1234, I made a new account as I forgot the password to pretty much everything and am feeling a little overwhelmed at the moment. Thank you for sharing your story and to @peachy – I’m really sorry that you contracted it from a bad sexual encounter. I’m having a really hard night tonight, it’s my third outbreak and it’s been going for over a week with no sign of healing despite me doing everything correctly (I’ve booked a doctor’s appointment for Friday in case nothing improves until then). I’m back just feeling helpless and unlovable again, I can’t believe I’m still not really over it after all this time. 🙁 I’m just sitting in my room crying and I can’t tell my parents about it so they’re worried about me. I’m going to be okay it would just be nice to hear some kind words right now because no one in my personal life knows about it and I feel alone.
hey @12345, so sorry to hear you’re feeling so alone and helpless. We all have those moments though, and its completely normal, so don’t feel bad about feeling bad. I find in moments like that its better to practice a bit of self-care and self-love. Make yourself a cup of tea and have some chocolate, or read a good book. Outbreaks can be a bit uncomfortable but its nice to focus on other things and know that there’s plenty of aspects in your life that herpes can’t rule over or control, if you don’t let it. You’re not unlovable, and you’re not alone 🙂
@12345 I’m sorry to hear you’re struggling again. I think @mintmilano had great advice, but I’ll just add some reminders about the physical side of things. Antiviral medication will decrease the severity of symptoms & the length of time it takes to heal.They work best when taken within 24-48 hours of the first sign of symptoms or, taken every day, as suppressive therapy (I think you’re already doing that?)
Paracetamol and/or ibuprofen can help with the pain. If it hurts to pass urine, make sure you’re drinking enough fluids. More water will dilute the urine & make it less irritating to sensitive skin. Sometimes weeing in the bath is most comfortable option. Cotton undies are best.
It’s frustrating that you’re having symptoms again, but know that they will pass & once they do it will be easier to put things in perspective <3
I can totally vouch for @nurse_nettie‘s advice of weeing in the bath. I haven’t had an outbreak in a while thanks to the antirvirals I take, but when I did I used to really struggle with painful urination, or not being able to at all. Sometimes the only way was to run a warm shallow bath til my body relaxed enough to let it go.
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