General Message to Everyone
Let me start off that I have had this condition for alittle over a year now. I will be the first to say that I was alittle scared when I first found out. Anyway, most of you are really depressing. Sorry to be so blunt. Some of the post I read really freak me out. I mean I have had it and my recurrences are frequent, much less then a year ago, but still come and go from time to time, but I am not losing my head over this. Its not a death sentence. Its something that is managable. This is not HIV, its not Cancer, You can walk, talk, have relationships, have friends and do what everyone does. Once and awhile you feel alittle uncomfortable because of a break out, and over time you might not even get them again. What the hell is the big deal? The only thing i think stressing over stuff like this does is ADD to the stigma. I feel we need more inspirational posts. Not these posts of dispair. Something everyone really needs to think about. Yea it sucks. Yes I wished I didn't have it, but I do. I am dealing with it. Everyone will find that special someone. There is someone for everyone. Keep your heads up. One in every four people have this. Good Luck to all. I hope my point came across the right way. I don't want to offend anyone or make anyone upset but make some of the people on the board in better spirits and put this behind them.
Thanks for your words of encouragement. i got diagnosed last week and reading all this stuff really makes me so sad. i want to move forward, but sometimes it feels like everyone who has this seems to think they are doomed. I appreciate your words. and they do help...
there are several things to consider here. the ones who post here are the very small percentage of people who are infected who acctually know they have it and care that they do. I am one of 50 million americans. but I am one of 5% of the people with this virus who know and will admit they have it. secondly are you guys in relationships? I NEVER have symptoms, its not that that gets me down, it is trying to be in a relationship with someone and disclosing and the rejection an etc. etc. etc. yes someday I will hopefully meet that someone special and everything will be o.k. but I havn't yet and it can be very discouraging. Sometimes my post are so positve and hopeful, other times I am filled with dispare. That is what this website is for... encouragement, support, communication. We can share the joy when something positive happens but we need do our best to be supportive of others when they go through the bad times.
i have to agree wholeheartedly with what you all are saying. these forums really are depressing sometimes. sometimes i wonder why i keep coming back. maybe it is a bit comforting to know that there are many people out there who are in my shoes, but it's not so comforting to know that there are so many people out there that are not dealing with it well. perhaps if we were more positive in our outlooks and treated this disease for what it really is - a mild skin condition that recurs infrequently in most people, a condition that is more common and less severe than diabetes or asthma, a condition that exists in one out of 4.5 americans, a condition that can and does happen to anyone, regardless of race, social status, age, or sexual history - then we could erase some of this negative stigma. let's face it - it's the stigma that hurts more than the disease itself. without the stigma, it would be a piece of cake. if we stopped feeling so ashamed and stopped hiding, started educating others and letting them know that we are normal people too, then much of the burden of what this condition is would be lifted. we are not entirely victims here - the more we resolve to live life, love, be active, happy, and healthy, the more we can change the way people think about us.
k, i'll get off my soapbox now.
I think that so benign a description of H is inaccurate and even dangerous. For some people, that may be the reason they so casually go about spreading it. I?ve observed some posts by people who fear that they may have infected a sex partner and did not reveal their H status to the person. It has come out in their comments how little they actually know about the seriousness of H and possible complications. We can ask: If they had known how serious H can be would they have behaved the same way? If their partner knew how serious H could be, would they have behaved the same way by not using protection? If some of us who have presented to the medical care system with H had been treated by doctors and nurses who were educated about the seriousness of H, several experiences here would have been different. I will confidently say that there are people in this forum who know more about herpes than many trained doctors.
I don?t think that people in search of peace of mind should be lulled to sleep about a viral disease. The HIV infection rate slowed significantly in the U.S. after people started appreciating how serious HIV was. That PR campaign did not rely on happy, smiling, skipping-through-the-meadow images of the HIV-infected. Quite the opposite, it seems, drove the increased research, subsidized medical care, accelerated clinical trials and pharmaceutical access, and even evolution around privacy and law. Realizing HIV was serious, and giving that virus its due respect, actually affected people?s behavior in a beneficial way.
There?s this saying-- ?the only way out is through?. I think that could apply here. I think we have to deal honestly and completely with the worst part of H to earn the credibility and authentic right to overtly focus on the good part...
tohealth, i appreciate what you're saying. however, i have done much research on this subject, and the fact is, h is not considered a serious disease. it is only serious in cases where it involves immunocompromised people or infants. people with healthy immune systems are rarely seriously affected by this. this accounts for the high rate of h in our population - 90% of those who have it do not know that they have it simply because symptoms are mild or nonexistent. that's why it spreads around so easily. i'm not saying let's go around and pretend like h is nothing, but what i'm saying is that it is generally not a serious condition. just because you have h, it does not make you a freak or an unhealthy person. going around thinking that the world is over contributes to the devastating psychological effects of the disease. and yes, it is the psychological effects of the disease that are devastating, not the physical ones. hiv can kill you. herpes is not fatal and in the vast majority of cases, not debilitating.
Cas, you?re proving my point. Even when people believe they are thoroughly informed about H they often are not. I don?t know the nature of your research, but I know that your information is incorrect. I nearly died from H, could not walk for 2 weeks and do suffer permanent neurological effects from it. Moreover, I can have a recurrence of the meningitis that threatened my life for the course of my life. My health status at the time of contraction was superb and always has been.
I would note the following:
Central Nervous System Effects of HSV-2:
Cancer significantly compromises the immune system. 17.6% or 1 in 5.7 Americans has HSV-2. Lets assume that the HSV-2 infection rates for females and males are equal [this is arguably not true because women are several times more likely to contract HSV-2 from males than vice versa, making my numbers even more ?optimistic? than they likely are:
Hence, the probability that a female will have a compromised immune system while infected with herpes in her lifetime, is at least 2.3%, or 1 in 43.22 women. This is huge--by any scientific standard. If we assume a U.S. female population of 130 million women, this means that the number who will be at risk for serious herpes infection with complications is at least 3,007,866.73. I use the phrase ?at least? because (1) these numbers only represent women with compromised immune systems from breast cancer. This does not include the range of other immuno compromising illnesses--lupus, cervical cancer/HPV, HIV?some of which are more prevalent than breast cancer; (2) I developed these complications very quickly and right under the noses of doctors, and my immune system was not compromised at the time, so some percent of perfectly healthy women (with excellent access to healthcare) should be added to the 3,007,866.73.
Lastly note, there are diseases---with far less probability to affect 3,007,866.73 people---which have received far more research attention and funding per capita. The Genentech company, for example, has done breakthrough research on some diseases that affect only 6000 people in the world. Such research was correlated with an educated, organized lobby, real or de facto.
Where would we be if we didn?t treat H like ?genital acne? but gave H its due respect: (1) If we knew the health risks/potential complications (2) if we knew the risks for contracting other serious illnesses as a direct consequence of H. I argue that we should understand that these numbers are real and that real people are behind them. I argue that we acknowledge and confront the reality for what it is--no more, no less, vs. using the pretending-Uncle-Larney-isn't-an-alcoholic approach and focus, to our collective detriment, on the "good" part. It doesn't educate people and it doesnt help the infection rate go down.
i am sorry that you have had such a hard time with h, but i must stick by my original post and say that your situation is much more the exception as opposed to the norm. the common flu can have serious consequences given certain circumstances. none of any of the facts i have written is inaccurate. i have read books, talked to doctors, and spent hours online reading up on the subject. while i cannot disagree with you that certain cases of h can be serious and cause severe complications, that is by far not the norm. if it was, how could you account for so many people being unaware of their h status throughout their whole lives?
we are clearly coming from two different perspectives here, and i can completely understand why you feel the way you do. if i had had such a rough time with the virus, i would undoubtably be in your camp of thinking. i guess it just demonstrates the diverse nature of this disease.
No. Simply, No.
This is by far the worst thing to have ever happened to me, and it is so much more than the trivial bullshit that you have described it is.
Herpes DOES affect every aspect of my life, it has made my life for the past two years terrible. There are week-long periods where i cannot utter a clear word because my mouth and tongue are so clogged with bulging and painful ulcers and lesions. My penis feels as if i am constantly going through some sort of medieval torture, as if a thin spiked bar is constantly being twisted within my URETHRA - FOR THE LOVE OF ALL THAT IS HOLY. It has gotten into my eyes, and while i am not blind, it is still ungodly painful and embarrassing.
Unlike many of you, my face is never free from herpes. I have oozing, pimply, crusty areas all over my face and torso. I have flu-like symptoms every day, every week, non-stop. It has changed my very personality, my parents and friends have noticed the dramatic change (i have no friends anymore). My entire body is constantly in pain. Constantly. I am so scared that my life will not amount to anything, simply because i dont have THE ENERGY that a normal 21-year-old should have. I look like an 80 year old man, who simply has no vigor left in his body.
People underestimate this DISEASE. It drains you in all possible areas, sucking the very essence out of your human body. Fuck anyone that says otherwise, this is a curse straight from the hand of God towards the unfaithful, like me.
When LIVING becomes a chore and a burden, thats when the disease becomes sinister.
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