Cold sores
This Sunday's column featured a question about cold sores, and at the end of my answer, "more about cold-sore etiquette" was promised on this blog. I'm not sure I really have more etiquette advice about it, though. You tell people, you hope they're cool. It's what I've been doing for about 15 years or so, and it's always worked for me.
Cold sores are herpes. According to the American Social Health Association's Herpes Resource Center, about 50% to 80% of American adults have oral herpes. About 20% have genital herpes. A large number--perhaps the majority--of people with genital herpes don't know they have it. The virus, once in your body, never goes away. There is no failsafe method of protecting a sexual partner from getting the virus.
Oh, and for the vast, vast majority of people who have herpes--the symptoms aren't that bad. Most people get a little flu-like for a few days when they contract the virus, get outbreaks somewhat often for a year or two, and then may never get another one.
Remember when sexually transmitted diseases were called "social diseases"? Herpes really is a social disease. Because physically, it's just not that bad. Herpes has caused me far less physical pain and inconvenience than my bad back, my hypoglycemia, or--especially these last couple of days!--my allergies.
The dis-ease is social.
I didn't really intend or want to come out of the closet about this, as Miss Conduct, although I pretty much did a while back, anyway. But then I called it "cold sores." And then I went and told this person who wrote to me that he had to be honest. So it just seemed wildly hypocritical of me not to be.
I have herpes. Have had, for as far as I know, about 15 years. I haven't given it to anyone else, again, as far as I know. When I found out, I went through a pretty rough time of it, emotionally. Most people do. The ASHA page I linked to has a good analysis of it, including this:
Why does such a common virus have the power to affect us? The major reason seems to be the fact that genital herpes is sexually transmitted. Growing up in our society, most of us come to view a sexually transmitted disease as a fate that befalls only those who have done something wrong. In addition, many people lose perspective about the medical implications of herpes. Too often, we see health as an all-or-nothing proposition: someone with a chronic infection is deemed unhealthy and somehow “imperfect.”
Not to make light of it, but it seems the basic fear and horror that people experience when they discover they have herpes is that people will know they have been having sex, which is bad, and that they will never get to have sex again, which is worse.
Herpes is a reality check. It's a demand for honesty, with yourself and with others. You can have a good life with herpes. You have to be willing to abandon shame and accept responsibility. You have to learn to accept your past, and your body, and the fact that people might reject you out of fear and ignorance and there's nothing you can do about it. But that's pretty much the only way to have a good life without herpes, too.
A disease as unpredictable, incurable, and physically mild as herpes shouldn't be allowed to ruin people's lives. It can only do so because of the power of stigma, of secrecy, of shame. As a society, we can destroy the power of herpes. We can't cure, but we can heal.
That's why I'm writing this post, which I'm still a little uncomfortable about. Not because I'm ashamed, but because there's really only one person in the world to whom my virus is relevant. But I feel that I had to do it for those of you out there who are feeling angry, and betrayed, and afraid, and embarrassed, and depressed, and alone. You're not alone. You're not being punished for something bad you did. You're not an outcast.
I think I've mentioned that my virus has a wicked sense of humor and likes to come on at the worst possible moments. The day of my first real date with Mr. Improbable--Pow! Right in the kisser! So he came to pick me up, and leaned in, and I shoved him back and pointed to the corner of my mouth and said, "Can't kiss! Cold sore."
He stepped back and looked at me critically. Then he pointed to the other corner of my mouth. "So can I kiss you on that side?" he asked.
People like to say dogs are great judges of character. Having both a dog and a disease, I can say with some authority that cold sores are even better.
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Just a big "thank you" for your honesty. With certain things, it's hard to know where the line is between maintaining privacy and perpetuating silence. And while we all want to keep certain things to ourselves, sometimes our silence can make us all feel more alone, when in truth, a lot of people understand your experience. I felt the same way when I had a miscarriage. It was so sad, I felt so alone. And yet, suddenly people came out of the woodwork, and it seemed as though nearly everyone I knew had gone through roughly the same thing. Why, I wondered, did I never know any of this BEFORE? And so I decided to be open about it (not that I introduce myself that way to strangers, but you know what I mean).
Anyways, just wanted to send a virtual pat on the back and a thank you for your honesty on this, and on everything else. It's really a breath of fresh air.
Robin says: Thank you, Liz! It was a tricky decision for me to make, whether or not to write about this ... but ultimately, I did feel that I couldn't go on perpetuating silence, as you say.
I'm not sure that it came across in your posting that herpes can cause severe debilitating diseases in those with weakened immune systems. While most of us are not particularly troubled by "cold sores" on our mouth, some people do get "cold sores" in their nose or eyes, which is much more painful. HSV meningitis is also a very rare but deadly disease which can happen in infants born to women with genital HSV.
And just as you can spread genital HSV even when you do not have a lesion, you can also spread oral HSV when you do not have a lesion. HSV is so ubiquitous in our community that most people have been exposed by the time they reach adulthood.
Scary but true!
Robin says: Yes, that's why I said that it's impossible to be failsafe about protecting another person from the virus. MANY people who have oral herpes have it from childhood, from being kissed by a relative or other adult who didn't realize that he or she was contagious at the time. And of course HSV can be deeply problematic for people with immunodeficiencies; that's the nature of immune problems.
There's also a form of the herpes virus that gives you a skin rash--I know because I had a rash on my hands that wouldn't go away. I turned out not to have the virus, but it was quite scary to think that I may have a condition that would give me terrible rashes (and I mean rashes so severe I could not hold a pencil, type, or zip my pants) on and off for the rest of my life. It seems like there are so many illnesses and conditions these days; everyone has something, and some people don't know that they have it.
Robin says: Your last line pretty much sums it up--except for "these days." Most illnesses and conditions have always been with us, we just didn't know what they were! My post is about herpes simplex--but chicken pox, and shingles, and probably what you thought you had are also forms of herpes.
Here's an embarassing cold sore moment:
I started dating my college boyfriend when I was 19 and one weekend he wanted me to meet his parents over lunch. Well, when I woke up the day of--guess what I had. I did my make-up very well and covered it up--but of course, make-up fades, especially when you're eating.
My most mortifying moment was when the boyfriend (always sort of socially clueless--but until then, in the I'm a future "absent-minded scientist" kind of a cute way) asked his mom about cold sores in front of me, and she got all concerned and fussy. The end of the lunch date was us all going to CVS and her buying a barrage of L-Lycine and cold sore ointment for him.
This mom, who greeted me with a big hug and was sooo happy to meet me, seemed to look at me like I was a plague who was probably doing all kinds of things with her mouth to my son! Meanwhile, I just felt annoyed at his lack of tact and couldn't believe that these people were carrying on like I had an STD--especially when most American women have or have been exposed to the cold sore virus.
Even 8 years later I still get the shudders thinking about that incident. For the record, I started breaking out with cold sores around the age of 15. Not sure where I got it--the guy who gave me my first kiss didn't have any lesions. Since leaving colllege, I very, very rarely break out. But I did at least a few times a year during college.
Robin says: Good grief! If you've read the novel "And Then We Came to the End," there's a funny story in it--it's set in an advertising agency--about an ad based on exactly that situation (having a cold sore when you're meeting the parents of your Sig. Oth.).
Not to mention the fact that cold sores/oral herpes seems to be passed on in families. I know in our bunch people have been getting them since elementary school. No behavioral choices or lack of disclosure from a partner involved - they're just there!
Another one who has been getting them since early childhood and now, despite being careful about kisses when I had them, my little girl gets them. :(
And isn't it fun that stress brings them on, yet they themselves are so super stressful....
Thanks as always!
Everyone has an embarrassing cold sore story, due to the fact that they can be triggered by stress and you can't call out because of one. Just about the only big event in my life that I haven't had a cold sore breakout over was my wedding, and that was because I put Lysine on my lips for a whole month before hand because I knew that all that stress would set the herpes free. Fortunately, I've never dated anyone who hasn't had cold sores. When I'd warn them I had one they'd say "Oh, don't you hate those? I get them after I'm sick too." I've never had a negative reaction, and if someone did I'd do my best to end that conversation and walk away. Poor Issybelle! Some people can't see past their own noses!
I never considered this to be an issue, until I met my wife. She's pretty anxious and self-aware about stds. While I respect her being so conscientious about this, she couldn't believe I was so casual about how I'd contacted it. A child I used to nanny had an occasional cold sore. Every night, I read to this child. Every night, the child was kissed goodnight. I still don't regret it.
Hey all,
That's okay, Noel! 8 years later (this seems like aeons ago, even though the whole experience gives me the shudders) I'm friends with the former significant other. He married the girl he dated before me. And the significant other is the reason I met my significant other--my husband. My then-boyfriend and my now-husband were roommates in college freshman year.
My husband and I have been together for 8 years and he's never had a cold sore EVER. I know his sister gets them because she had one right after giving birth (hormones flux a lot when you're giving birth) and I think my mom-in-law does too. Maybe that explains his thinking its really not a big deal. He even tries to kiss me when I tell him not to, because I sense it--but I don't get them nearly as much as I used to.
It is funny in a way that for us all going to college in Pennsylvania, we all ended up in Boston. The significant other did become a scientist too--he's getting his doctorate in a few months.
But that experience will live on when I tell my own daughter someday my dating horror stories! It'll be hard to top.
Alyssa
my questio is how come there is no cure evern until now for herpes virus? its causing a lot fo trouble for people and i am wondering when will the cure be there for people wit the disease and also why isnt there anything yet
Oral herpes is not a big deal to most people. Many of those same people have no problem sitting in judgment of people with the same virus in a different location. There are millions walking around in shame and anger and loneliness because of the stigma against genital herpes. I am one of them.
Robin says: Then let's try to do what we can to change those attitudes.
There's no way to avoid being honest if it's right there on your face. But I agree that it's a good test of the character and the affection of your partner. If it's accepted, then few things say more than that. I got herpes from my grandfather, who went around kissing up the grandkids even with sores on his mouth, and we were too young to know. I calculated in my 20s that I spent 25% of my life with a humiliating sore on my mouth. How depressing is that?
I advise everyone who has cold sores to see a doctor and get a prescription for zovirax (or the generic acyclovir). It makes a huge difference. I wish I'd had it in my 20s. Two of those a day, or even just when you feel something coming on, and you can have your life back. There's no cure, but that doesn't mean there's nothing you can do about it.
First of all thank you for this post. I've had cold sores since high school and have tried everything under the sun to help them. I've even given myself a chemical burn from using too much ointment!
For the longest time when I would have an outbreak I would stress myself out and feel horribly self conscious, especially when I saw people looking at it. When I finally realized that they were here to stay I decided that it was best to "own it". No more feeling self conscious, no more stress and now when I see people looking at my cold sores I acknowledge it. I usually say something along the lines of "oh that's just a cold sore" like it's not a big deal (because it's not a big deal) and carry on the conversation.
Ah, you've jinx'd me - I felt the tell-tale tingling on my lip this morning and swung by home to pick up the abreva. It if full-blown now. :( Hmm...acyclovir?
Robin says: I jinxed myself, too! Apparently writing about the little buggers brings them on. Grrr.
i just got cold sore’s in and around my right nostril i’m 26 first time i ever got them even tho my parents had them very mildly threw my lifetime[i never notice it but they said they had it befor i was born].
earlier this year in febuary, i got real sick havn’t been sick like this since i was 12 for almost a month straight i couldn’t get out of my bed, i got no type of sores what so ever the time
i was sick but afterwards i been feeling fatigue with headache and slight naussea all the way to now and still feeling it
then like 5 days ago i saw a friend shook hes hand then not thinking picked my nose right nostril area, it was like 2:00 p.m. 6 hours later my nose started to itch didn’t look at it that night but the next morning i saw blisters
i was wondering if the virus can infect and spread that fast or if i could of always had it and it just appeared from bad luck???
truth is im very scared about it because i live basically a unhealthy lifestyle but i eat good, im an insomniac and work all day in the sun doing construction[plus sometimes get really dirty working] normally very stressed from every day life also get nervous twitches and itch [reason why i scratch/pick my nose that day]
i'm still in denile and hoping its impetigo or other type of infection :(
Robin says: You need to get tested so you'll know what's going on. If you have nervous self-picking kinds of habits and it is herpes, you can re-infect (not exactly the correct word, but close enough) in different locations. I wish you luck!
Hi Robin,
I'm really glad that you wrote this blog. I wish more and more people with authority would be honest and show to the world it's ok to have cold sores. Most of the time we hear people and the media make jokes on herpes and the whole topic remains taboo with today's youth.
The sad thing is these people don't know how much psychological damage it brings to sufferers. I just had my major outbreak this year, 4 outbreaks so far and still counting. This disease is no fun I can tell you this much. I really don't care if I look ugly for a week, what bothers me the most is I have the potential to infect my family and friends.
It's true that my life will forever be changed as I have to start making some lifestyle and diet adjustments. I will try to remain optimistic that one day a cure or a permanent treatment will be discovered. I just wished more and more celebrities would come out with the truth and raise awareness.
you guys realize most people have the cold sore virus? Like MOST...so its wierd if you dont lol...its just that some people are prone to getting recurrant cold sores...most people who have the virus dont ever get one...i was freaking out about geting one then my doc told me all this so whatever
Chiming in to add that I recently discovered that oral herpes outbreaks can also happen on the gums. I've been getting cold sores on my lips since I was 9 or so, but I've also occasionally had episodes where a portion of my gums would swell, then collapse into a nasty sore. I didn't know what it was for a long time, and assumed they were just irritated by a bit of stuck food or something. Then I realized that I was having the same peripheral symptoms as with a regular cold sore - swollen glands, mild flu symptoms - and looked it up online to discover that yes, they can happen on the gums. Now I'm careful not to kiss my boyfriend when I have that kind of outbreak as well.
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