One month post-diagnosis: Advice for newbies

[notjejune]

One month ago today I was diagnosed with HSV-2 (G). This was after a “first outbreak” – (one pinkie-fingernail sized blister close to my rectum) which the doctor remarked “looked like a repeated occurrence” and suspected it wasn’t my first OB at all – I just hadn’t noticed it before.

The symptoms leading up to the lesion appearing were general malaise, extreme fatigue, and a mild fever. (It’s hard to say whether that was a symptom of the herpes or if the herpes was able to attack me harder because of an illness and that’s why it chose then to appear.)

The first day after I found out was actually kind of okay. I informed my main partner of the last year of my Dx via text message; we had already talked in person when I told him I had a lesion… down there. He didn’t come to the doctor with me but he hung out with me the whole day afterwards and was generally supportive. But after a few days had passed, his contact was far less, and I got the feel he needed his distance. Understandable, right? It’s scary for anyone.

That’s when I found honeycomb. I was also terrified, full of questions. How could this happen to me? What was it going to be like? Would I ever stop hating myself? How was I ever going to someone who would want to be with me?

The first night I went to the chatroom it actually honestly made everything seem much worse. I asked questions and it didn’t really relieve my mind; other people were also kinda down for their own reasons; and there was another newbie who was just as scared and confused as I was. I was debating leaving and never coming back, but I really had nowhere else to turn. So I got out of the chatroom and dove into the forums.

The forums are an amazing wealth of information. And although no one can tell you what this will be like for you (as the virus affects various people in myriad ways), it does help to see what other people are experiencing, both in the short-term and in the long-run of this whole ride.

As for me, (what I believe to be) my initial OB took about three weeks to fade. I took antivirals for the first 10 days but it was already quite late after the appearance of the lesion, so I don’t think it helped much. The lesion itself (just one, not a rash) wasn’t itchy after it appeared, though it was in the couple days before it came; it only really hurt when I was directly spraying water on it in the shower; and then when I rode my bike it  (and the whole region, actually) was reallllly sore the next day. I haven’t had any symptoms since, even though I’ve gone through my period once (and I was really worried I’d get the next one then, like quite a few other women on here). I haven’t changed my diet at all, though I have been taking 1000mg supplement of lysine each day, just as a precaution. I'm not on suppressive antivirals due to a family history of kidney problems.

I’ve also been in the chatrooms almost every day. There are a few days when I think the company may have kept me from doing something dumb. In the long run, my “friend’ has turned out to be a jerk about the whole thing. (Ask more details if you want.) That has hurt far worse than the actual virus. I think the vast majority of us find the mental battle to be far tougher than the physical symptoms.

And then of course there’s the stigma. That’s really scary. I was terrified of dating before this started… now it seems impossible. And I used to be quite okay with being single (even at 30) – but now it seems really desperate. In my few attempts at dating so far (again, ask me if you want), that desperation has not helped me. But I’m still trying to get out there, perhaps with more motivation than before.

If you’re wondering how to meet people to talk to in person, ask someone in the chat to help you find local facebook groups. (I created a fake account with a fake e-mail.) They are secret so you can’t find them unless someone’s invited you. Unfortunately there aren’t many people in my area and that was a big bummer at first, but I’m also looking on positivesingles.com. It may be a little bit early for me to actually consider seriously dating someone, but it is kind of just nice to talk to people and feel like I might have a chance. And a lot of people on here have told me they have great success in the general populace dating pool and have good strategies for disclosing. I’m not there yet but maybe that will be my next post.

So now I’m a month in, and I’m still dealing with a bit of body loathing and fear, but it’s getting easier. I cried for the first three weeks straight, and then had about a week feeling better before I ended up in tears again at the end of a lonely Saturday night. But I have to remind myself – this is still early days. My life experience tells me – almost everything gets easier. And it will for you, too.

 

So, again, this is going to be unique for all of us… but I’d like to give you my top tips, one month post-diagnosis and as a regular member of honeycomb:

-If you go to the chatroom, understand that some people are coming there because they’re having a bad day and need the support to get it off their chest. Most days are not going to be like this, for them or for you.
-If you need to use the chatroom for support on the bad days – definitely do!! But I think the best use of the chat is to spend a short time getting it out, whether you need to be sad, angry, - whatever. But also use it as a place to laugh, sometimes to flirt a little, just to joke around. There are some really cool people who come around here. (Like yourself. ) Lean on them to help you cry/rage it out – and then to move on.
-At first, you are going to think every little itch, tingle, twinge, headache has something to do with herpes. Little things that you would not have even noticed before are going to seem like potentially major health crises. If you can help it, don’t overthink it! Stressing it isn’t going to benefit you in any way.
-Similarly, rest easy knowing that most people have fairly mild physical symptoms, especially over time. As you’ve probably read, in fact most people who have it (about 25% of the sexually active American population for hsv-2) are virtually or totally asymptomatic. The only difference is, you’re one of the 2-4% of the population who actually knows that the virus is in your system.
- Just remember, you’re the same person you were before. (In my case, I had a negative swab but a positive IGG test… meaning I’d had the virus for at least a few months already. So literally nothing had changed except my knowledge – and knowledge is power.)
-No one can control your feelings except you. And yeah, definitely wallow and be scared/sad/angry as necessary for a while. But get it out of your system and allow your life to start moving on. Of course you will still have bad days… but I’ll be shocked if you can show me a single human being who doesn’t have them from time to time – hsv+ or not.
-Find good ways to distract yourself. Take care of your body by exercising, read a book, write or create something… maybe even dedicate yourself to a great cause to remind yourself of all the good you can do in the world. Sometimes you have to force yourself to move on – fake it til you make it.
-You are not your diagnosis. You are so much more. 

 

Below is a list of resources I’ve found really helpful. Newbies – please feel free to reach out if you need support or have questions!  Crew – please feel free to post some of your favorite resources or advice for beginners below. J

June

 

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Video

• You probably have herpes, and that’s okay: https://www.youtube.com/watch?v=aU4VcOQzQm0

Articles

• You probably have herpes, and that’s okay: https://www.washingtonpost.com/news/speaking-of-science/wp/2015/11/02/you-probably-have-herpes-but-thats-really-okay/?utm_term=.11856972b1b2
• What’s so embarrassing anyway?: http://loveinthetimeofherpes.blogspot.com/2008/10/whats-so-embarassing-about-std-anyway.html
• HSV 101 (Statistics, Prevention, Transmission): https://hsvblog.org/herpes-simplex-virus-101/
• Dating with herpes – Would you take a 1% risk?: http://loveinthetimeofherpes.blogspot.com/2008/09/would-you-take-1-risk.html

Testing center

• Low-cost STD testing service: https://www.std-testing.com/

 

Edited March 8, 2017 by notjejune

[LilyMae]

What a great post, @notjejune!

[Tulip1]

This was good for me to read. Thank you. I joined the group today. Waiting for my tests to come back. 

Lots of crying and disbelief here. 

My story... I was married 36 years until a year ago when my ex left for someone else. And swears he wasn't unfaithful....pretty sure that's a lie.

i am a 55 year old single woman fighting like hell to have a good life. Started dating a sweet man in Dec. he came out of a 33 year marriage about the same time. We felt safe with each other. We adore each other.  We are both very healthy people lots of exercise and fit for our age.

So the bad part: over a week ago I thought I had a yeast infection but turned into painful lesions. I went to the Dr she swabbed the lesions and took blood and urine. (Testing for everything) she says that they can determine if this has been laying dormant for awhile or if it's something new to my body. Boyfriend went this past week did blood test it came back hsv1 he doesn't even get cold sores. Dr told him he was probably first exposed 1-2 months ago. (I've never had a cold sore or mouth sores) but he hasn't been with anyone but me and I him. I most likely gave. it to him.

im expecting the test to show I have had it for over a year. He's lucky to only have type 1.

I'm hoping he sticks around but feel like he will leave me because why would anyone knowingly expose them self?  Im under so much stress with the disease but also the thought of losing him has me in tears. 

And side question do I need to avoid coffee? I dunk one cup a day and love it. This whole thing stinks. I just want my life back. It was just getting good again!

[notjejune]

1 hour ago, Tulip1 said:

So the bad part: over a week ago I thought I had a yeast infection but turned into painful lesions. I went to the Dr she swabbed the lesions and took blood and urine. (Testing for everything) she says that they can determine if this has been laying dormant for awhile or if it's something new to my body. Boyfriend went this past week did blood test it came back hsv1 he doesn't even get cold sores. Dr told him he was probably first exposed 1-2 months ago. (I've never had a cold sore or mouth sores) but he hasn't been with anyone but me and I him. I most likely gave. it to him.

im expecting the test to show I have had it for over a year. He's lucky to only have type 1.

I'm hoping he sticks around but feel like he will leave me because why would anyone knowingly expose them self?  Im under so much stress with the disease but also the thought of losing him has me in tears. 

And side question do I need to avoid coffee? I dunk one cup a day and love it. This whole thing stinks. I just want my life back. It was just getting good again!

Hi Tulip, and welcome to our little corner of the web!

First, the crying and disbelief are normal... but so is this virus. It can happen to anyone and is totally indiscriminate. There are people on here who have caught it from their first and only partner ever. It truly says nothing about you or your partner as a person. I'm glad that you found each other and although it's unfortunate you have to go through this, many people on here have said that going through these trials and tribulations can actually make partnership stronger as you support each other. I hope this is the case for you. And when you get your test results back, if you find out you have HSV-1 as well (which can manifest genitally), there's really no reason why he would need to avoid you out of fear of exposure, since he already has that (whether he's symptomatic or not).

Unfortunately it will be impossible to know exactly when you contracted the virus. The only real true indicator of length is if you have a positive swab/culture on the lesions, but a negative blood test. Then you know that you've been recently exposed because your body has not had time to build up the antibodies which would be present in your bloodstream. So unless that's the case for one of you, neither of you can really blame the other (since as you know, it can lay dormant in your system without showing symptoms for a long time). So try not to be too hard on yourself, or on him!

As for your side question, I wouldn't say you need to give up your coffee! I also drink just one cup a day and it seems to make no difference for me. If you end up having a longer, more intense outbreak, then maybe play around with your diet and try cutting some of the things that trigger others out (caffeine, alcohol, things high in arginine), but for now, I'd say just be in tune with your body. Most likely you'll have a very mild case and will only notice it a few times a year and you won't need to change your lifestyle at all. Don't worry - everything can still be exactly as you'd hoped!!

Please feel free to write again or stop by the chatrooms. The waiting is the hardest part and we're all here to support you if you need it! <3

[notjejune]

Another favorite link - info about transmission: https://herpesopportunity.com/downloads/herpes-opportunity-disclosure-handout.pdf