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Peony3

Modern Healthcare Article: Herpes Stigma

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Peony3

Hello - I was diagnosed with HSV-2 two years ago.  The ensuing depression led to a 30 lb weight gain (I was fit and happy before that, it was more of a hit than I could take).  I went to a doctor for blood work, just to rule out any other possibilities re: the weight gain.  I told her about my situation and her response was: "Was this a forcible situation? Because your reaction is way out of proportion." It wasn't, and I tried to explain the stigma and how psychologically damaging it can be.  Her response: "See, this is why I tell people to not even get tested." I, of course, was not given that option since I had a first outbreak and they said they had to test to confirm.  I sent that doctor a subsequent email laying out all the problems with our conversation. It fell on deaf ears. So, I talked to a reporter who writes for a publication read by health care providers. She worked to make sure the patient perspective was reflected and remains interested in helping people understand this issue.  I'm a little late, but wanted to share the link here.  If you have any thoughts or suggestions, her email is sluthi@modernhealthcare.com. Article here: https://www.modernhealthcare.com/providers/lack-knowledge-unreliable-testing-feed-stigma-herpes 

And, if you really have time on your hands, this was my email to the doctor in case anyone ever finds themselves in a similar situation:

I see my test results all came back fine. I do want to elaborate on one aspect of our conversation. You questioned why this diagnosis has had such a significant mental health impact for me and suggested my response has been out of proportion to the issue. I hope by outlining it a little bit better, it might help with any future patients you see in the same situation. I do not want a response, I simply hope you'll give it some thought.
 
As you noted in our conversation, HSV is incredibly widespread, with approximately 1 in 6 Americans suffering from HSV-2, as I do. You also said you agreed with the CDC’s recommendation that people not get tested for the virus because it just stresses them out. If it is so widespread and minimally concerning from a health perspective, why would that be?

According to the CDC, “there can be can be considerable embarrassment, shame, and stigma associated with a herpes diagnosis that can substantially interfere with a patient’s relationships.” In fact, a 2012 NIH study found that people with HSV-2 are twice as likely to suffer from depression. The study does not speak to whether it is a correlational or causational relationship, but anecdotally I can tell you I was not depressed prior to this diagnosis. There are countless postings on HSV community websites echoing that sentiment.

Given the psychological ramifications, I can almost see why the medical community has elected to spare the 85 percent of people who are either asymptomatic or don’t recognize their symptoms as being HSV-related the knowledge of their status. The problem with that is they are nevertheless capable of spreading the virus to other people who may or may not have that same luxury. Studies have shown that asymptomatic people shed the virus 10 percent of the time and the majority of new infections are acquired from people who don't know they're carrying the virus. Therefore, the medical community is essentially advising people to maintain their blissful ignorance even if it means putting others at risk. If they don’t know their status, they have no responsibility to disclose and no opportunity to maintain an anti-viral regimen. The CDC sums it up this way: “without knowing the benefits of testing, the risk of shaming and stigmatizing people outweighs the potential benefits.”

So what happens when you are the unlucky 10-15 percent who have the virus and know it? Because the CDC and the medical community have decided to allow the vast majority of people to remain unaware of their status, those of us who have no choice bear a disproportionate burden in terms of the stigma and responsibility to disclose. By advising against testing, medical providers have taken the burden and responsibility away from people who should be sharing it – and perhaps educating themselves a result – and piled it that much higher on the unlucky few. Just to be clear, it is considered completely unacceptable within this community (and by the CDC) not to disclose.

So, getting back to the asymmetry between the medical implications of my HSV diagnosis and my emotional response. My emotional response stems entirely from the profound social implications that are evident in countless punchlines, casual insults, and the relegation to HSV-only dating sites and anonymous message boards.

I’m one of the people who are suffering more than they should have to because the medical community doesn’t want to risk shaming and stigmatizing others, even when they’re carrying the virus. Would there be the same shame and stigma if doctors weren’t encouraging millions of people to stay in the dark?

Again, I do not want a response. I just hope you'll consider the perspective of other people like me and not simply assume they're overreacting - especially given the role the medical community plays in contributing to the stigma we deal with.
 
 
 
 
 
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blurneworder

This article completely misses the mark when it comes to HSV1. There are two types of herpes!

Also, I was disappointed it did not discuss the physical effects beyond cold sores.

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T9000
3 hours ago, Peony3 said:

I told her about my situation and her response was: "Was this a forcible situation? Because your reaction is way out of proportion." It wasn't, and I tried to explain the stigma and how psychologically damaging it can be.  Her response: "See, this is why I tell people to not even get tested."

Thanks for doing this. I often wonder if some of these healthcare providers are secretly counseling their kids about getting their partners hsv blood tested before sex. I would LOVE to have been counseled to do this when I consulted with my NP about it-more than once-prior to contracting it. I understand that physician's care first and foremost about the physical reality of the virus, but that doesn't magically preclude the psychosocial effects of it. There's no way they don't really know what it does to people.

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Lulupazoola

Good for you to have shaken things up a little.  There have been so many stories ive read on this forum that i feel should be part of a detailed health article in the NYT or Washington Post. They have health articles periodically, often about obscure conditions--why not about herpes, affecting millions of Americans both physically and mentally/emotionally and to which a nasty stigma is attached?  I always read their health articles although i dont subscribe to a health magazine.  I am one who resents the downplay of symptoms in most articles i read about herpes.   The standard treatment doesnt work for me, and if i werent able to keep it mostly-suppressed with some non-standard methods, i believe i would be mostly disabled by it.  Anyway, thank u for helping to shed some light on at least some of the complications of this disease.  And i hope things get better for you.

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      I think it is very important for you to find out whether you carry HSV-1 or not. If you do, then any concerns you may have about HSV-1 are negligible. Many people carry an oral HSV-1, like your partner. This will be the only region of her body infected, that is the mouth in a practical sense. No contact with the mouth means no chance of infection for you. Hence there are zero issues with vaginal sex and you giving her oral. Kissing and you receiving oral sex are the feasible transmission possibilities. Perhaps the second is of minor concern, but your choice. If you decide you're never going to kiss a girl because she has HSV-1 orally then that will be your loss. Most girls have HSV-1 and all the cute ones!
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      I disagree, we have made a significant contribution to keeping it on track and ensuring the OP has the correct information to cogitate upon. Let's keep the good work up!
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