Help please! My 27 y/o daughter has herpes

[JoanM]

I am the mother of a beautiful 27 year old daughter who has just been diagnosed with HSV. She has a great career, was independent and happy until this. We have always supported her to the ends of the earth and support her with this as well, absolutely no judgement on our part towards her. She has had very few sexual encounters by today's standards and has been in only 3 serious relationships that just didn't work out for various reasons. She is so loving and trusting and such a wonderful person. She is devastated with her first outbreak and finding out what it is. She has not been in a relationship or had sex with anyone for well over 8 months now so it had to be something that was laying dormant in her system and popped up due to stress or illness. She's confused, beside herself and not thinking rationally. She lives half way across the country from us and we are worried sick. It's not easy to get to her with our busy work schedules and she works long hours too. She is so devastated, is convinced no one will ever love her, touch her or want to be a part of her life EVER. Therefore we are even more devastated for her. We don't know how to help her other than to tell her we love her, but we are afraid for her. What do we do?

[optimist]

@JoanM I'm so sorry you're daughter is having such a difficult time. Many newly diagnosed people experience the types of thoughts and emotions you're describing and most do feel much better after taking time to grieve and learn more about HSV. For me, that grieving process took 2-3 months but everyone is different.

 

I really like this infographic that outlines specific steps in dealing with a diagnosis and then moving on. https://68.media.tumblr.com/7936949ade77ef3e6d4fe314eeb89185/tumblr_inline_ohi27qB2PV1tf6lgo_1280.png

 

You'll notice it includes an intermediate step of using a STI specific dating site to gain confidence before returning to more "normal" means of dating. Take that for what it's worth as this infographic was promoted by an STI dating site. Many people do not find that step necessary. However, I think the infographic is otherwise excellent and a pretty accurate portrayal of the ways in which many people successfully move past a diagnosis.

 

(((HUGS)))

 

 

 

 

[JoanM]

Thank you optimist for you kind words. I'm sick inside for her, so sick. When your child hurts, you hurt twice as bad. I would be o.k. if she was reacting differently but understandably she can't. She can't think past tomorrow and when she does, she comes up with all these rejection scenarios in her head and says her dreams of a husband and family are dead. I can tell her over and over that that is not true but she doesn't believe it. My God, I've done so much reading myself and just cannot understand why testing for this isn't routine or why they can't come up with a vaccine for it .... hell, they had no problem coming up with a chickenpox vaccine. I hate the stigma. Nobody asks for this to happen to them, they didn't cause it, they were just the unlucky recipient. For her (because she always considered herself so safe), seems the only other solution is to never touch or let another person touch you. How sad that people cannot understand how vulnerable we all are to something like this and be more understanding!

[optimist]

@JoanM Hopefully she will educate herself and learn how very common this is, even among women with limited sexual histories. There is no reason to think she can't lead a normal life and continue to have intimate relationships. For example, in the U.S., studies have shown that 30% of pregnant women have genital herpes as a result of HSV2 and an additional unknown percentage have genital herpes as a result of HSV1. Overall, 77% of pregnant women have oral herpes, genital herpes or both. Because they are pregnant, we can assume they are at the very least sexually active, and I would assume most have intimate partners.

 

Yes, the stigma sucks. I agree with you there. For most people, the stigma is the most difficult aspect of herpes. Your daughter has been influenced by the stigma for 27 years, so it will likely take a little time for her to gain a different perspective, but it's likely she will do just that in time. In the meantime, I think it's important for her to feel her feelings as part of the grieving process. As a parent, I know that's hard, but I do think it's really important.

 

You may want to direct her to Ella Dawson's talk on the topic. She's a young woman with genital herpes.

 

 

 

 

[HikingGirl]

Hi, @JoanM, and welcome. I think it's really wonderful that you're reaching out, educating yourself, and looking for ways to support your daughter. Thank you for taking the time to learn more about herpes and speak with those who have it, because every time someone does that, it chips away at the stigma.

 

@optimist gave you a lot of great information and she's right when she said most people have to take some time to grieve something like this. The obvious is that they're grieving a perceived loss (love and acceptance from others), even if that's not entirely true. But there's also a very real loss when you realize that bad things happen to good people, that I am one of "those people," and that there's a lot of things in life that we think we have control over (like the myth that condoms protect against all STIs), but we really don't.

 

Likewise, an HSV diagnosis has a way of bringing all of your insecurities and baggage to the surface. It's overwhelming, to say the least. I spent 8 months stuck in my own version of hell, before I finally went back to the therapist I saw after my divorce. It's only been 16 months since my own diagnosis, but today I can honestly say I would not trade a magical cure for herpes to go back to the person I was 16 months ago. I like the person I am today so much more.

 

When your daughter is ready, getting educated about herpes is tremendously helpful. Adrial has many wonderful resources on this site. I bought Terri Warren's book about herpes on Amazon (you can get it as a kindle version) and found that exceptionally helpful. She's an expert on herpes and explains everything in a way that's easy to understand. She has a short handbook here (https://www.westoverheights.com/herpes/the-updated-herpes-handbook/) although I highly recommend the whole book.

 

You'll see a lot of people on these forums talk about how helpful it is to take care of yourself--not just through the diagnosis but ongoing. Eating well, exercising, sleeping well, and doing activities you enjoy and can look forward to really help.

 

Finally, there is no substitute for the healing that comes from connecting with others who also have herpes. These forums were a godsend for me. I genuinely wish there were more in-person support groups, but they can be hard to find. Talking about it with close friends or family is helpful to some people, but my own experience so far is that not everyone knows how to help, what to say, or what to do--especially when they've been exposed to the same stigma we all have.

 

A few months ago I took a shame resilience class through a counseling center and I shared the final assignment from that class in a two-part post, linked below. In it I describe how herpes made/makes me feel, and how others can best support me. I definitely can't speak for all people with HSV, but some of the points I touched on are shared by many, and you might find it helpful in understanding what your daughter *may* be feeling.

 

http://herpeslife.com/herpes-forum/discussion/8700/healing-through-speaking-shame-my-herpes-manifesto-part-1-of-2#latest

 

https://herpeslife.com/herpes-forum/discussion/8701/healing-through-speaking-shame-my-herpes-manifesto-part-2-of-2#latest

[Katidid]

So glad you found us!!! Of course, we all know your daughter will be fine. It's a tough blow at first, but I promise she will be better than ok once she settles. She will do all the things in life she has always dreamed of. My story is in the veterans category on this site. I was just 23 when I acquired the H. I've had a fantastic 35 yrs since. I've seen much of the world, I workout 6 days a week, have a great carreer and wonderful family, have a glass of wine (or two) every night, have loads of friends, laugh a lot and most importantly have a man (who is my H negative husband for 21 years now) who I adore and vise versa. Life is good.....really good!!! Of course I have my curve balls every now and then, but it's never related the herpes. Kudos for educating yourself and realising it's really not a big deal. Your daughter is very blessed to have you as her mother!

[JeffH]

Hi Joan,

 

Thanks for coming on here, it really says a lot about how much you care to sign up for and post on this website. Thought I'd throw in my experience here, since it is remarkably similar to your daughter's.

 

I got this late last year at 26. Like your daughter I have a limited history and a good career with a bright future, great friends, and a family that cared a lot for me. What helped me get through the first six months was keeping those things in mind. I've relied on my friends a lot, put more effort into work, kept in touch with my family (who also live across the country!). Focusing on the positives have helped - there's still a lot to live for and plenty to enjoy in life. With time she'll see that too.

 

As for dating, that's person to person and there are a variety of valid responses. Personally I have completely stopped dating and I'm not sure I ever will again. I'm not afraid of disclosure or rejection at all, and I'm aware that there's people who'd still date me. Thing is I'm absolutely terrified of passing it to someone else, and that's why I don't know if I will date again. This is the thing that's caused friction between my parents and I. In my moms own words I need to "get over it." I know she's right, but I'm also so scared of passing it on. Just remember in terms of dating there's no clear right answer. I respect people on this site that still date, that's great for them and I support them. It's just not where I'm at now, and that's ok too.

[JoanM]

My daughter got her blood test results back. They are both negative, the IGG and the IGM. How can that be? It's been 8 months since any sexual contract with anyone and I have read that if you have herpes, it will show up in the blood.

[optimist]

@JoanM How was she initially diagnosed? By swab or visual inspection? If by swab, did they specify type? By that I mean HSV1 or HSV2? HSV1 is usually (but not always) contracted through receiving oral sex from a partner with oral HSV1. HSV2 is almost always contracted through intercourse or skin-to-skin genital-to-genital contact.

 

IgM tests should never be used. After 12 weeks, IgG tests will accurately pick up 70% of HSV1 infections (and will miss 30%) and 95% of HSV2 infections (and will miss 5%). The least reliable diagnosis is visual (wrong something like 40% of the time). The most reliable blood test is the Western Blot (after 16 weeks). Positive PCR swab tests are considered definitive, but negative results can mean there wasn't enough virus present at the time of the swab test at the location swabbed.

[JoanM]

She got both IGG and IGM and they were both negative. Doctor did not do swab, why, I don't know, and just said that's herpes. Told her to come back in 4 weeks to do another blood test but no matter what the blood test says, she has herpes. I don't get it! First she tells her it's probably been in her system for a long time, in which case, I would think the blood tests would have picked up on that and then she says to come back again for another blood test in 4 weeks, but even if it's negative, her visual should be considered accurate.

 

 

[Tina94]

@JoanM I know doctors think that herpes is herpes. But there is a BIG DIFFERENCE between HSV1 and HSV2 in the genital area. Where HSV1 will give maybe 1 outbreak a year (for most people none after the first), HSV2 can (and often will) recur a lot more. HSV1 sheds a lot (!) less than HSV2 since it does not prefer the genitals. So herpes is not just herpes. Yes, the stigma is there even if your daughter "only" has HSV1. But if she does have genital HSV1, I can tell you that she will have far less issues with the virus - maybe no outbreaks ever again.. So it does make a difference. Some people might even say that you won't have to disclose if you have genital HSV1 because transmission rates are extremely low - less than 1% I think (don't remember the exact number).

 

Have another blod IGG test done again in maybe 4-8 weeks. If another outbreak pops up have it swapped asap. If it's HSV1 - she has won the 'herpes lottery'. If it's HSV2 things will be okay in the end!

 

Wish you all the best, Tina

[optimist]

@JoanM If she has merely had a visual diagnosis, that is not enough to know if she is positive or negative. I would encourage her to have a swab test if she ever gets a recurrence. She could also look into the option of a Western Blot. Maybe @HikingGirl has info on that to share.

[HikingGirl]

@JoanM, I agree with @optimist. There's no way I would accept a visual diagnosis. There's so much room for error there. Personally speaking, if my doctor insisted on maintaining their visual diagnosis, I would seek out a new doctor for this issue. If I were in your daughter's shoes, it would be really difficult for me to move forward if there was any uncertainty or confusion about my diagnosis.

 

Now is it possible she has genital HSV1 and the IgG test missed it? Sure. So if it really is herpes, it's invaluable for your daughter to know the type. Like @optimist said, the doc could do a PCR swab with a new outbreak, or you can pursue the western blot (a much more sensitive blood test for HSV that is considered the gold standard). The western blot is not a common test and is only done at the University of Washington. If you can't find a doctor that will order it for you, Terri Warren can help you order it. I had one done before she closed her clinic, but she still offers help with getting it at the clinic website: https://www.westoverheights.com/hsv-video-consultations/

 

 

[JoanM]

Thank you all for your kind comments. I'm so danged confused and so is she. Distraught and confused. I so appreciate the support you all have given!