Why!? What!? When!? How!? HUH!???

[golddust086]

This isn't something that I can easily talk about...I almost want to cry, but me being ME won't allow myself to cry. I'll explain. Herpes. The word itself instills fear in me. I know I had said that I would embrace it and just except the fact that I have it and I have. I've done my research. I still have my faith and dignity, well, what ever is left of it (lol) and I'm still alive and breathing and not in poverty or in degenerative health everyday to which I live in fear of death. So, I'm grateful for my life. But the word Herpes, the definition, the Google images! It pisses me off! I didn't realize until recently how this would drastically change my life. As I had said before I had gotten really sick when I found out...seriously, my family was afraid that I was going to die and so was I. It was pretty bad. And I had my doubts and I cried and I was angry and blah blah blah, I was so confused to put it plainly. But recently I have seen different physicians and apparently they don't know if I have it...which doesn't make much sense to me. The hospital that I was treated in did not run the test. They did a visual diagnosis and I wasn't treated for herpes until after 6 days when symptoms already start clearing up so I have been beating myself up over this. My family is extremely harsh and judgmental. And when I told my siblings of my diagnosis (because the doctor told me that I have it) one on of them said,"it's o.k. We've known people who have it and they live normal lives. Don't worry it's not the end of the world." And they urged that I take legal action on who ever gave it to me, but doing my research and looking up my symptoms and not knowing when or how or where I contracted HSV and to top it off the nurse at the hospital confided in me that she has hasv2 and thinking back on it, I'm like damn HERPES! That word just cuts right through me. I was scared when I found out...horrified I thought, SHIT! I'm going to live with this for the rest of my life! And really thinking of the conversations after finding out my family was soO negative and I just wanted to die, honestly. Even that nurse made me feel like shit. She had it and she made me feel like crap, when I really think about it I'm like wow! Now my sisters and mom and everyone who knows wants me to see a specialist and two of my sisters just had babies and one of them apparently has been speaking so harshly about me possibly having herpes, my mom sees me the most bc we live in the same city...and my mom took care of me when I was sick so, she doesn't want my mom over to see her grand kids until I get tested properly and send her a copy of my results. And the other sister says she has a child now and she can't have me around her because of this...and my mom the other day said she hasn't gone to see any of her grandchildren because of what I might have....ugh the word Herpes! It didn't hit me until recently how bad I feel. How sorry I am that I was so irresponsible. I had all the symptoms of it so I'm sure I have it. I have just been through an emotional roller coaster recently and it sucks.

I know I have it, there is really not a doubt in my mind that I do, but I just hate this negativity. It's eating at me and just knowing that people know, I feel like shame is oozing out of me and there's nothing I can do stop it. I just want to feel like it's o.k. because I'm still human and I still love and feel pain and joy and every other emotion and I'm still capable of living a "NORMAL" life whatever that means too...I mean c'mon, normal really??? I'm anything but normal, so I'll just say, I'm still f***ing human and this feels terrible. I honestly don't even want to talk to my family because I wasn't aware of how they really felt. I don't even want to show them my results when I get tested because I feel like I'm fueling the fire. My sister said she'll pray that I don't have it (which I understand. Do I want to have HSV? UGGGHH, NO. but if I do then I do!) And they are just so concerned about me now. And now they're concerned about how I have affected them...? I understand about skin to skin contact, but I am so awkward with my family, I rarely hug them and I never share drinks so that's out... And I wasn't even there for the birth of their kids because well, I just wasn't allowed to go because I'M SO CONTAGIOUS! I'm angry and probably shouldn't be posting this because well, you shouldn't say things out of anger. But I needed to this get off my chest because no one understands or knows how I feel. I know I have it and now then just want documentation which to me just makes this worse for me. I want to know too and yes, I am going to get tested, but like I said there's no actual test results yet and all this shit has been said and I don't know what to think and now I'm questioning my treatment and this anger is just building! How did this happen??? I feel alone and sad. And this seems like more of a rant than a discussion...lol. I don't know how people deal with this. It's so hard.

[WCSDancer2010]

@golddust086

 

First...... BREEEAAATHE friend!!!!

 

I am sooo sorry that your family are being jerks about this ... sadly you are not the first one on here with family who are mis-informed and acting out of fear because of it. What I suggest that you do is to take your mother with you to the doctor when you go to get tested and ask THEM to explain to her that you are not an oozing petri dish of viral particles just waiting to infect the nieces and nephews ... that if you have GENITAL herpes you can't pass it to them anyway (Oral herpes ... aka Cold Sores ... is likely what they are confusing your issue with ... and what they NEED to know is that 60% of young people get Cold Sores by adulthood FROM EACH OTHER! I got it by age 4 ... and it didn't kill me :/ ) Anyhow, take her with you, ask the Dr to explain how 80% of the population has Herpes (Oral) and if they are so scared for their children they better start wrapping them in Saran Wrap :p Hopefully if SHE gets it she will go back to them and tell them that you are not going to infect their children.

 

Sadly many people just don't understand the nature of Herpes and how it's spread ... and human nature seems to make people over react to anything like this (look at the public reaction to every "outbreak" we have until the news makes us understand the true nature of the beast ... like HIV, where people thought they could get it from toilet seats and such :( ) It's unfortunate that there is not a better Public Education system in place for STD's and Herpes specifically ... We have plans here to address that but there are a few other things ahead of that on the list just yet. But watch this space because at some point we will want to start a campaign and we will be asking people to get materials out there to stop the stigma from spreading any more.

 

It sounds like at least ONE of your siblings is a bit more rational about this

 

one on of them said,"it's o.k. We've known people who have it and they live normal lives. Don't worry it's not the end of the world."

 

Maybe you could also get THEM to help to back you up?

 

Also, we have the Handouts and the Video you can show them ... likely they have been on Google and have misinterpreted what they have seen ... the video and other materials should set them straight if they are at all willing to be educated...

 

(((HUGS))) .. I hope you can get them to come around .... ignorance is such a deadly disease and it hurts everyone around those who are "infected" with it every bit as much as any virus can :(

 

 

Handouts + disclosure e-book:

http://eepurl.com/b4IPP

 

Herpes facts video

 

[PositivelyBeautiful]

Hi Golddust,

 

The more you read about herpes from this site, the more you might feel at ease with everything. I am sorry as well that your family has not been supportive, as I suppose this has solidified some of your very negative perceptions and thoughts about contracting herpes. As dancer said, find positive allies, surround yourself and confide in those who you know won't judge you, but will support you and lift you up. I know this is easier said than done, especially so early on, but try to remember that nothing about who you are or what you have to offer this world has changed in any way. You are just as beautiful, talented, giving, caring and loving as you were before and equally lovable. Try to change you mindset around the "disgusting" stigma, because when all is said and done, it's just a skin condition. Like people who suffer from really bad acne, it is out of our control. We did not ask for this to happen, but now we have to deal. And in dealing with it, we can control our thoughts, and are given two choices: 1- put ourselves down, beat ourselves up, destroy our self-worth (that was built on years of growing and learning and perfecting), attack the very beauty of who we are inside and out, or 2 - forgive ourselves, accept what we cannot change, and know that there are far worse things that can happen to us in this life.

 

Having a positive attitude or at the very least, recognizing when negative thoughts are infiltrating our minds and destroying our hearts, are two sure ways to keep your chin up and come to terms with this. You might feel destroyed right now... but in time, herpes might just be the one diagnosis that makes you stronger than you ever thought possible, that makes you so self-confident in who you are and what you have to offer, that without it, you may not have seen how truly and deeply beautiful you are. And in case you are scared that no one will ever want to be with you, you are wrong. There are plenty of inspiring success stories on this site that will show you just how compassionate, understanding and caring some people can be when faced with a disclosure. The right guy will be intelligent enough to know that this is not a big deal and loving enough to recognize that he would be stupid to pass up everything you have to offer for a manageable skin condition... that 80% of the population actually already has.

 

Anyways, I hope this helps. Here is a good article I posted the other day, and I hope it brings more positive thoughts your way. You deserve to be happy, we all do, believe that.

 

http://www.marcandangel.com/2014/09/21/22-harsh-truths-that-will-jolt-you-awake/

[FF1]

 

Hello Golddust :)

 

Two things come to mind after reading your post; Ignorance and Judgement.

 

That you can't see your nieces/nephews because of your diagnosis... that you Mom can't see them because she cared for you when you were sick... that is ignorance on the part of your family. The word Ignorance sounds negative. Webster defines Ignorance as "a lack of information or knowledge". And I think that is what you have where your family is concerned.

 

I know how you feel. I recently tried to deal with someone who hadn't any knowledge on the subject. She relied on the internet for information without vetting the sites from where the information came. People who rely on Wiki for their information on this subject are destined to get the wrong information.

 

I would suggest providing your family with information from sources you KNOW are true and accurate. Dancer was kind enough to provide links to the handouts, eBook and videos. I took them all, dropped them on a flash drive and handed it over to the woman with whom I had the "talk". You can't make it any easier than that. I would suggest you do the same. I find people are lazy and unless you do the work on this subject for them, they will never get it.

 

The other thing that concerns me is how judgmental your family is about you being H+. Personally, I've chosen to keep this a secret about myself. I've shared it with no one other than potential partners. That I share it here is no great feat as we are all anonymous.

 

I would thank your family for their prayers but I would also suggest they pray that God doesn't judge them as harshly as they have judges you.

 

FF1

 

 

[seeker]

hello goldust. im sorry that your family are being rather difficult about this. I have yet to tell any member of my family for various reasons. I will say this. you can either fight it, try to educate and help them deal with it or walk away. people stop talking to family members over lots of things, mainly because they are being bullheaded over whatever it is. I myself have not spoken to my father for over 10 years because of some issues. I just had to cut the ties and walk away. funny thing is I talk to his brothers and sisters still. anyway. don't sweat it, it may take some time to work itself out. I am less than 2 months since diagnosis and while much better now than then I still have my moments of WTF?

 

take the handouts or email them this site info or the handouts ( and yes make a stupid joke about not getting a virus from the links ;) ). that lady above my post, 2 kids while having Herpes ( both kinds no less) and they don't have it. so there!

 

I have a 12 y/o and as far as I know he doesn't have it and we play in the pool, snuggle still ( he is a bit of a retro kid, more naive at 12 in 2014 than I was at 10 in 1975). I don't let him use my towel nor do i let him eat or drink after me ( which is no big deal cause he is in that phase of not wanting to anyway) but I do that for MY piece of mind not because of contagion. believe you me when you are a parent with H it really worries you but I know what the chances are of casual transmission are ( almost none) and overreact cause its in my nature and helps me cope.

 

tell em you have a friend ( me) who has a buddy who has gone thru cancer 2x who hugs him and says its no big freakin deal.

 

rant on. this is the place to get it out little lady

 

my first OB was thought to be Mono with a bacterial infection on my 2 partners in crime down there. so doctors aren't gods. that's why they call it PRACTICING medicine. id suggest a blood test that does type specific. yes it doesn't tell you where but it does tell you what.

[golddust086]

Thanks for all the comments... really. I wish that I could sum up my emotions about all of this into words but it's like there's not much to say about how I feel. I know who I am and I know my world isn't going to change in a bad way because of this, but yes, I do feel like there is so much misinformation regarding herpes and it's really sad. When I was in the hospital my mom came in and she just had this look on her face of disgust and she just says, you have to tell your sisters. I'm a grown woman and it was as if there was no questions asked. She just very plainly she demanded that I tell them. So, I didn't really have time to let it sink in and I had stayed up the previous night reading what I could about it on my phone and I was trying to just process what I was just told. The thing is, I had a sore on my lip, just one and one "down there" but when I opened my mouth, the entire back of my throat was covered in white and had swelled so severely that I couldn't eat. I have had no prior medical history of illnesses or something life threatening so I think it scared my mom. The doctor even kind of laughed at her when she came in with her "expressions" and said mam you've probably come into contact with HSV on many occasions so don't worry about her having it. And her response later to me was, "well, if we have it, (WE being anyone in my family)we got it from you." is what she said. And my sister, the one that said," it's o.k. we know people that have it and they live normal lives" um, yeah, she's actually the one who told my mom to cut ties with me because she said it was my fault that I got it so, she was kind of being two faced. I have told my mom and my sisters to come on the site and read what they can and I told them NOT to look at google images, lol. The pics on Google are nothing to what my symptoms looked like. I thought it was strep or mono...it looked like I had one of those. But then the sore appeared "down there" and it was like ugghhh no it's something else. I told my mom that I Downloaded the all the info. from this site and many others and they just haven't budged. It's sad to say that ignorance is bliss and quite honestly this shows their true colors. And I think it also might have to do with the fact that my sisters and I are all a year apart and I'm the only single, college student, still enjoying it when I can and all my sisters are married and are now starting to have their own family so I am kinda the black sheep because I'm in no rush to settle down. I'm only 25 and my career path is still barely getting into motion, but I'm not going to get married and have kids yet....to me it's ridiculous so finding this out now was just the icing on the cake. But speaking to them and me finally having this fear somewhat is a defining moment for me. It wasn't really the outcome I was hoping for unfortunately by telling them and I don't think it's wise for me to continue trying to make them understand. I feel bruised mentally and I think space is needed because I can't force someone to try understand if they just don't want to. I seriously have been considering going to a local university here and getting info of possibly trying to inform college students about this because this is just ridiculous...we are not plagued or going to infect everyone we come into contact with. And the area I live in is among cities with the highest teen pregnancy rate, drunk driving rate, a high HIV rate...etc., IN OUR NATION. So, I know there needs to be more done to inform people on being safe and staying informed. I'm upset because this is just sad and ridiculous. And on a positive note don't worry, I know my post was pretty depressing, I don't let this consume my days....but, it's out there and people need to hear this stuff and hear the stuff that they say without any knowledge. I can't let this pass, it's unacceptable. My family means a lot to me. I have a younger brother who adores me and I can't let this define me in his eyes...I want to set a positive example for him and how can I do that if I don't know what he hears? It's unacceptable.

 

[PositivelyBeautiful]

Golddust,

 

Those are some very powerful words, FULL of courage and strength. Life has a funny way of steering us in the direction of true fulfillment... I sincerely hope actions follow your words. Your mission resonates and could truly and positively impact a lot of people. I commend you for these powerful thoughts, and hope your family one day recognizes how misinformed they are in light of your life-changing efforts... good on you!

[WCSDancer2010]

I have a younger brother who adores me and I can't let this define me in his eyes...I want to set a positive example for him and how can I do that if I don't know what he hears?

 

How old is he? If he's old enough to be sexually active perhaps you can just take him aside and tell him that you need to inform him of the truth but that the rest of the family won't approve of you talking to him. Then tell him what he needs to know and (most importantly) give him this site and the CDC website with links to the other STD's so he has the information. Kids are tech savvy now so it won't matter what the rest of the family says, once he has the links he will know how to get the info....

 

Sorry your are dealing with your stubbornly ignorant family. Hopefully one of them will wake up sooner rather than later :(

 

(((HUGS)))

[avigail]

Hey golddust, looks like we are both in the same boat. I too attend college and I wish I had the courage to tell my parents that I have Herpes but I know they would hate me and judge me more than they already do. I'm only 22 and I'm still living with my parents and I know if I was to ever tell my siblings they will pretty much bring it up whenever they get angry at me. writing this comment to you made me cry because I'm the person who has always been picky in every way possible I never drink from anyone cup couldn't eat from the same spoon as someone else, and to top it off I got Herpes and I have only been with one person in my entire life and probably staying that way forever. I understand how you feel and believe me you're one strong person, I was diagnosed with Herpes 5 months ago and it took me all that time to start thinking straight and realizing there are people going through a lot of worse things like Cancer. I live in NYC and I think no other city is more judgmental than this one, I know your pain. Feel free to message me it would really help to have a normal convo with someone who is going through the same thing. I admire you're courage to tell your family and deal with it as a grown women but remember no matter how grown you're we still have feelings and emotions we cannot always control. Hope to hear from you :)

[WCSDancer2010]

@avigail

 

I live in NYC and I think no other city is more judgmental than this one, I know your pain.

 

Honey, I promise you, Herpes is plenty prevalent in NYC .... you are FAR from alone there and you should be able to find a Herpes Support Group pretty easily there... ;)

 

http://herpeslife.com/herpes-support-groups/

 

 

[golddust086]

Hey everyone,

Honestly, after leaving the doctors office, in my mind I said to myself, "oh crap, I'm not telling anyone!" . But as soon as I walked out of the drs. office. I called the person I had been with and immediately informed him that a physician told me that it looked like I had herpes so he should get checked. I told him because I thought it would be so irresponsible if I didn't tell this person. And him and I had a pretty great relationship. He's actually a very understanding person considering the fact that I kinda dropped a bomb on him. He was very supportive and still is. I know the first feeling you get is that oh shit feeling then shame and sadness and guilt, but I don't keep anything from my family. When my mom asked what the doctor told me, I just told her. And I would have eventually told my sisters, I just needed time to tell them. My family and I can deal with bad news. It may take some time to heal and understand but I know when to back off with them, but in time they'll come around because we're family and my sisters know my loyalty to them is never ending. I really don't have much shame now as I did before when I found out and that kind of settled in quickly for me because how was I to know if someone else had it? I really couldn't bare the weight of carrying anger of me having it because well, I just didn't know. I am angry because of the stigma of herpes, but that is just because of misinformation and yes, ignorance. I was shocked to find out that you have to request the test to be done on herpes. I have seen my obgyn for paps or getting checked or whatever and I always thought by them checking for STDs that meant CHECKING FOR EVERYTHING! That in my opinion is just insane. And trust me, I am definitely not letting this slide. I spoke to friend already about maybe trying to get something going this coming Spring Semester but becoming as informed as possible on the science of things is key right now. I wouldn't go in head first and be misinformed.

 

WCSDANCER2010

hi, my younger brother is 11 yrs. old. I did my best explaining to him what hsv was and I used "HSV" because well, he's my brother and not my son and my mother didn't want herpes to be a word in his vocabulary. lol. He's very young I didn't go into much detail of how it's contracted and what not. I made him aware of symptoms and reassured him that I would be ok and it's nothing to fret over just something to be aware of. My brother isn't interested in girls yet or even questioning anything regarding sex, the other day he was excited to find hair on his arm pit so I'm not going to worry him especially if he does hear what they say about me....that is something that a child really shouldn't be concerned about so I just won't get involved with that. I'll lead by example instead.

 

Inka

hey, yes that's me on my profile pic. And thanks for the compliment. Um, yeah, I know they can be harsh. It sucks really. My sisters and I are very jealous of eachother actually. It's in our nature I guess to be competitive and my family in a whole is very challenging and they strive for the best. I guess they see herpes as something self inflicting because they assume it's just an STD. So in other words, to them, a person puts themselves in harms way to get it by being irresponsible. So, because I did something out of wedlock or in way that wasn't taken seriously it would be my own fault because I put myself in that situation to contract it....you know what I mean.? That is how they view it. I've done my best too see it from their point of view and I get it because I was there. I felt the same way they did before I knew I had it. It really hits home for them and because of misinformation unfortunately this is the outcome. I don't regret telling them. And I'm sure they'll come around...."...FAMILY MEANS NOBODY GETS LEFT BEHIND;)"

[WCSDancer2010]

I have seen my obgyn for paps or getting checked or whatever and I always thought by them checking for STDs that meant CHECKING FOR EVERYTHING! That in my opinion is just insane.

 

Welcome to the club! You don't want me to get on THAT soapbox!

 

And trust me, I am definitely not letting this slide. I spoke to friend already about maybe trying to get something going this coming Spring Semester but becoming as informed as possible on the science of things is key right now. I wouldn't go in head first and be misinformed.

 

All the info in Adrials handouts and e-book are from reliable sources.... so feel free to use them ... this is exactly why he created them... We've even had people on here whose Dr's requested that they be able to copy them to hand to their patients ... Adrial is connected with Dr Peter Leone who is one of the foremost Dr's in the Herpes field ... you can see an Support Group talk with him at the link below. Let us know if we can do anything to help you with this....this is one of the things on our list - to get info to college health clinics, etc...

 

Handouts + disclosure e-book:

http://eepurl.com/b4IPP

 

http://herpeslife.com/doctor-answers-questions-about-genital-herpes-hsv-and-hpv/

[WCSDancer2010]

@inka

 

I would have given her hell for that ... you could say that you actually KNOW you have H but it would be entirely possible that you wouldn't have known and that by her not including Herpes when you asked for "everything" she could have put your partner at risk.

 

*SMH* ... I tell people all the time if they see me on a Police Blotter it will be because I went postal on some ignorant-assed Doctor. And people wonder why I avoid them like the plague. :p

[WCSDancer2010]

She said "there is no reason why you should be tested for HIV, we only recommend it to gay men and people who have sex with prostitutes". I said I still wanted to be tested for it because my ex had cheated on me with someone I didn't know. So I wanted to be safe rather than sorry. She was very mad that I insisted on it.

 

THIS is why I may still end up on that blotter ... please don't give me her name and address... X( X( X(

 

LOL

[Jennie]

When I asked to be tested for everything they included HIV the only one I had to specifically ask for was hsv

[whitedaisies]

Hey Golddust

 

Similar stuff happened to me....I didn't read through all the posts....sounds like you are getting lots of support on the forum so that's great....

 

I reacted badly to hsv1, still undiagnosed, waiting infectious disease specialist appt next week. My family has basically shunned me...I am not allowed to see my beautiful nieces (cousins to my children) because I have this virus. Family holidays are non existent now (Cdn Thanksgiving)...no one is getting together. My parents are supporting my siblings decision to shun me. I don't even care about me...it's my kids. Why can't my kids see their kids wtihout me? I am willing to do that....how can people be that cruel? How can family be that cruel?

 

I feel for you and know I am going through the same thing. I am thinking of going away Canadian Thanksgiving which is usually my favourite holiday because I don't want to be in town to feel that horrible lonely feeling you can only feel when your family abandons you in teh most fundamental way. Christmas is one year since I was infected and that holiday along with new years will be ruined and I am not planning to spend Christmas with my family either.

 

My therapist told me that when I gain more support in my life through other people, surround myself with healthier people for me, the pain of the rejection from my family will fade as I will have a better support system for me. So I suggest, during this time you work on building your support system. You started by posting on the forum which is a great start, maybe you can get a herpes buddy and start surrounding yourself with authentic genuine people that support YOU.

 

Good luck