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The End of Sex

February 22, 2010

"end: noun ... 2 a: cessation of a course of action, pursuit, or activity ... 4 b: the object by virtue of or for the sake of which an event takes place ..." -- Merriam Webster's Online Dictionary

Somehow, about three years ago, my sex life pretty much came to an end. Not by choice, exactly. It wasn't anything I'd planned. In fact, at the time, I didn't even realize it had happened. It wasn't as if I woke up one day and said, "I'm not going to have sex anymore." While in retrospect the end was abrupt, it did not seem so then. After all, you don't know it's your last time until much later, when you can look back and say, "Yeah, that was it. That was the last time I had sex."

You may wonder how I simply lost something that most people think is a really important part of life. The truth is that I can't isolate a single cause. Instead, my sex life fell victim to a series of small blows, most of which were inflicted, directly or indirectly, by HIV. To mix metaphors, it was more like a long siege than a knockout punch.

First, there were the physical changes. I've written before about my lipodystrophy (Lipo: A Trophy?). The loss of fat in my arms, legs, hands, and butt hasn't done anything to make me more attractive, and it's hard for me to feel sexually desirable when I have a condition that makes me so self-conscious about my appearance. An added complication is that HIV can lead to a decrease in libido, and I think I'm certainly suffering from that.

Second, after getting my diagnosis, I made a conscious decision to be more cautious about sex. It only made sense, because I had to make sure I didn't infect others, and I had to protect myself from sexually transmitted infections [STIs] that might stress my now-compromised immune system. Although this focus on all of the possible STIs I might get from a sexual encounter may be completely rational, it doesn't do a whole lot to get me in the mood.

Then there's the problem of disclosure. I won't have sex without revealing my serostatus. As hard as disclosing might sound in the abstract, it can actually be even harder in practice. I have to be willing to reveal my most personal secret to someone whom I may not be sure I can trust completely. That takes some courage, and frankly, I sometimes just don't have it. Even when I do, I know that disclosure may lead to rejection. Of course, I understand that rejection is often the consequence of disclosure. In fact, the very purpose of disclosure is to give your prospective partner the opportunity to reject you, but that doesn't ease the sting. And even if I don't get rejected, disclosure is, shall we say, a buzz killer. If you ever want to spoil a moment of budding passion, just try telling your prospective sex partner that you have a potentially fatal and infectious disease.

The result of all this is that I've had no sex life to speak of for quite some time now.

I wish I could say I don't miss it, but I do. For despite all the sex I've had over the years, I can still be awed by the beauty of the experience -- the enticing sight of another man's body as he undresses, the warmth of his skin on our first embrace, the firm feel of his muscles, the rough brush of whiskers against my cheek, and then the softness of his lips, the sharp intake of breath as he touches me just so, the frenetic heat of the act, followed by its languid afterglow. When sex is good, it is a joyous and exuberant riot of the senses. Who wouldn't miss that?

But it's not just the physical pleasure that I miss; it's the deeper function of sex. What we often overlook (and sometimes simply refuse to recognize) is that, fundamentally, sex is a form of intimacy. It is the coming together of two people for pleasure, for comfort, for companionship, and sometimes, for love. At its best, sex can be the physical expression of love, a means of communicating by action that most precious of human emotions. But even an anonymous sexual encounter is a moment of intimacy -- an instant, however brief, in which two individuals acknowledge their need for each other. To me, there is nothing more human than that.

Unfortunately, in America's puritanical culture, we tend to denigrate sex and ignore the fact that it can help us achieve intimacy. Rather than seeing it as an expression of our basic human need for connection, and honoring its role in helping us form and maintain intimate relationships, many view sex as something dirty. Sex is an act from which we are advised to abstain, and it's considered almost incompatible with virtue. Indeed, to some, there's an inverse relationship between a person's virtue and the frequency of his sexual encounters. Simply put, people who have lots of sex are seen as "loose" and lacking in morality. In contrast, we hold up as paragons of virtue those who abjure sex completely -- monks, nuns, and ascetics.

Personally, I dispute the whole notion that abstaining from sex is a mark of virtue. (I can assure you that these past three "sexless" years haven't made me a better person.) We humans are social animals, and we all need some kind of connection with others. Abstaining from sex doesn't make us better people; it just cuts us off from a vital part of our human nature. Besides, I think we can all agree that fostering closeness and connection between individuals is a good thing. And if attaining closeness and connection is our goal, then sex should be celebrated as a means to that end.

Our lives are enriched by all of our social relationships, but especially by our intimate ones. It's a mistake to deny the special role sex plays in forming and sustaining those relationships. Because when it comes right down to it, we spend so much of our lives just trying to achieve a little intimacy. And intimacy, to me, is the end of sex.

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Reader Comments:

Comment by: AK (Pleasanton, CA) Sun., Mar. 15, 2015 at 12:02 pm UTC
Spot on!
I have been living with HIV for a year and a half now (that I know of) and ever since then, it has been impossible for me to be sexual with anyone. It has not turned me into a saint (hah!) but I think one reaches a point where one finds oneself so deeply unattractive that sex begins to seem like a burden.
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Comment by: bowen (New York) Tue., May. 11, 2010 at 11:48 pm UTC
I really have no idea about this.
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Comment by: fogcityjohn (San Francisco, CA) Fri., Mar. 19, 2010 at 7:09 pm UTC
@ Alex in SF: I can certainly understand your feeling of being "liberated" by your seroconversion. In some sense, it is a relief not to have to worry about whether you have been or are going to be infected after a sexual encounter. To me, however, that sense of relief is far outweighed by the worries this disease brings. But I do think you are really on to something when you describe how great it is "to experience sexual intimacy in its natural state, without fear or artificial barriers." I think that's one of the reasons gay men choose to bareback -- they're looking for "intimacy in its natural state." Unfortunately, I don't know that anyone is talking about that emotional need or its implication for HIV transmission. Watch this space, because I think this is a topic I'd like to take on.
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Comment by: Alex (San Francisco, CA) Fri., Mar. 19, 2010 at 6:10 pm UTC
Interesting. I share a lot of your thoughts on sex, its meaning and value. I also relate to some of the more rarely mentioned effects of HIV infection, such as decreased libido. And I share the ethical restraints on sexual choices determined by my desire not to infect another person. But an HIV diagnosis, for me, had very different outcomes, in the end, than those you describe. After the initial shock and the ricocheting adaptation needs and the learning curve to figure out how to handle my health going forward, I found myself unexpectedly liberated from conscious and unconscious restraints, and I had far more and far better sex in the first few years after my diagnosis than in the previous 20, since my first sexual experience. I think moving to San Francisco was a contributing factor. This is a very sexual and sex-positive city, and the unfortunately large numbers of HIV-infected men here provide a vast pool of potential sex partners who cannot be infected with HIV. Freed from the fear of getting infected with HIV, and able not fear infecting another, I got to experience sexual pleasure and closeness with men (so many men), in ways I could have not imagined possible when I still thought I was negative. Now, that does not mean I would rather be HIV-positive than HIV-negative or that I advocate for guys to seroconvert. Any visitor of this site knows only too well what a scourge and source of lifelong distress and tribulation and affliction HIV infection is (physical, emotional, and mental). But being able to experience sexual intimacy in its natural state, without fear or artificial barriers, has been a very precious, if unintended, consequence. One that I am grateful I have had the opportunity to have.
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Comment by: fogcityjohn (San Francisco, CA) Thu., Mar. 18, 2010 at 3:49 pm UTC
@ Raymond in Oakland: Sex is great, but to me, intimacy is more important. It's nice to know that you and your partner have a relationship built on that kind of intimacy and commitment. That's what it's all about. And yeah, that Terron is a cool dude. If you know him, keep him close. He's a young man who's picked up a lot of wisdom the hard way.
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Comment by: Raymond (Oakland) Thu., Mar. 18, 2010 at 2:52 pm UTC
You are not alone my brother. My problem is compounded because I have a partner. Even though we may not have the same passion,our commitment to each other is stronger. Which lets me know that it wasn't about the sex. Special thanks to Terron. You made me realize the grass isn't greener on the other side.
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Comment by: Din Thu., Mar. 11, 2010 at 5:29 am UTC
I am touched with the way of your expression.
Why don't you look in to the partner with the same status? You might have many points..
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Comment by: fogcityjohn (San Francisco, CA) Fri., Mar. 5, 2010 at 4:05 pm UTC
@ Rodger in Toronto: I can't relate to the "biohazard" idea either. I'm not a hazard to anyone else unless someone comes into contact with my blood or tries to have unprotected sex with me. The former is extremely unlikely, and the latter is just not going to happen. I agree that the whole "biohazard" idea just reinforces existing stigmas surrounding HIV.
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Comment by: Rodger (Toronto) Thu., Mar. 4, 2010 at 5:02 pm UTC
Yes, our courts have determined that you're at risk of charges that can stick if you place another person at "serious risk of grevious bodily harm" (which has been determined to include non-disclosure in the context of sero-discordant unprotected anal/vaginal intercourse). I'd never, ever do that. Charges have been placed a few times in lesser circumstances though (ie, just non-disclosure itself in the context of extremely safe sex), and the solution is to fight it, which a number of our organizations are doing. On another point, I've always been fascinated by the tattoos you mention in your same comment, with the biohazard symbol. Even if/when I may choose to be totally out about my status in the future, I just can't imagine employing that symbol. I get that for some there may be an "I'm dangerous/I'm a badass" component to it, but for me I guess the underlying theme to the biohazard concept is validating the concept that you are fundamentally harmful to others, particularly sex partners. And by choosing to protect other people (as well as myself), I just don't identify with that, and I don't think it's literally true then either. And I also fear that it's one more way to avoid talking about sex and risk -- ie, if one or both of us have that tattoo, then we can/should just go ahead and BB without any further discussion. And something about that just doesn't feel write for me either.
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Comment by: fogcityjohn (San Francisco, CA) Thu., Mar. 4, 2010 at 3:56 pm UTC
@ Rodger in Toronto: I know different people have different approaches to disclosure. I am only telling you what mine is. It's good to know that you are careful to take precautions so as not to expose others to HIV. I would advise you to look into the possible legal consequences of non-disclosure, as I understand that Canadian law imposes criminal penalties in some circumstances. @ Kevin in Topock, AZ: You may be kidding about the hankie thing, but there are guys here in SF who get a "medical hazard" symbol tattooed on their skin to show they're HIV positive. I heard about another guy who had "HIV Positive" tattooed on his bicep. I personally know a guy whose license plate is "HIVPOZ." Still other guys wear earrings with the "+" sign to reveal their status. As you can see, there are all kinds of disclosure strategies.
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Comment by: kevin (topock arizona) Thu., Mar. 4, 2010 at 3:17 pm UTC
john, thanks for your article. you hit the nail on the head as far as sex is concerned and your definition of basic human ned for connection. i wonder how you have/or are working on resolving our problem of disclosure. meybe we could come up with another color hankie? just kidding. thanks again. kevin
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Comment by: Rodger (Toronto, ON) Thu., Mar. 4, 2010 at 2:35 pm UTC
I never disclose, even with guys who disclose their positive status to me. I'm also fully aware of how to protect myself and others, and am consistent about not exposing others to genuine risk. I support everyone's personal choices around disclosure, but for me, the most important realization I've had is that disclosure is not required in order to prevent HIV transmission, and that when you disclose, you are offering yourself up unnecessarily as a target for the other person's unpredictable emotional response. I'm sure there are altruistic benefits to that, but I think there are a lot of risks to it to, and I guess I'm not as generous as others in offering myself up in that way. I don't believe the idea (I've heard commonly expressed) that I can't relate authentically to others unless I reveal this piece of personal medical data, and I'm completely emotionally at peace with the idea that I can protect myself and others from risk and that I don't owe anyone disclosure as part of that. It's served me and my partners well to date. But that's just me, and I acknowledge that everyone can have a different approach to this. I appreciate hearing about yours.
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Comment by: fogcityjohn (San Francisco, CA) Wed., Mar. 3, 2010 at 8:28 pm UTC
@ Biff in NYC: As I've said a couple of times downthread, I think all of us are responsible for protecting ourselves from HIV and other STIs. Even if my partner doesn't disclose his serostatus or the fact that he may have another STI (Hep C, HPV, herpes, etc.), that doesn't mean I'm relieved of the obligation to take precautions. In some environments, such as sex clubs or bath houses, disclosure is far less common, and in those situations you have to act on the assumption that absolutely everyone is positive. I'm glad to hear that you've been able to stop blaming yourself for HIV. It's a disease and that's all. A viral particle makes no moral judgments and does not discriminate among "innocent" or "guilty" hosts. I'm also glad to hear that you've rediscovered the joy of physical intimacy. You need to remember that you deserve it, just like everyone else does. Oh, and thanks for the tip, but I assure that my anal canal is in the capable hands of a doctor at UCSF. ;-) @ PT in New York: Finding intimacy is made more difficult by HIV, but it's not impossible. I hope that my current predicament is only a hiatus, not the absolute "end of sex." And I agree with you about the disturbing trend towards criminalization of nondisclosure of HIV status. Perhaps I'll address that in a future post.
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Comment by: PT (New York) Wed., Mar. 3, 2010 at 1:18 pm UTC
Well well said. Yes, with the diagnosis of HIV +, ones sex life is severely affected. I have resorted to seeing "escorts" just to have some kind of physical intimacy. I have been rejected many times...sometimes very rudely. What happened to the attitude in the "early days" of this disease? Remember the AIDS quilts? There was compassion and caring for people with this disease. Now.....we are seen as disease spreaders and perverts, especially in the puritanical atmosphere of the US. In fact...we are being put in jail for now for non-disclosure. I have gone w/o sex for so sex drive has diminished a great deal....but then again thats probably the way society wants it.
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Comment by: Biff (New York City) Wed., Mar. 3, 2010 at 10:03 am UTC
I hear you John. A great post. I've been positive for about 20 years, so long ago I didn't think I'd ever live to see my 50th birthday last September. Sex has been so complicated since diagnosis. You are very noble in revealing your status before sex, clearly a boner-killer for many. In some anonymous encounters I've had, I have not said anything because I thought: "OK, in this day and age isn't it their responsibility to limit their own sex to what they consider safe? Shouldn't all casual hook ups assume the other is positive?" I still debate the issue but as you mention, sex is so rare these days that this becomes a moot point. On advice from a friend I have improved my mastubation techniques but I completely agree about missing that moment of intimacy with another body. I had left sex behind years ago then got hooked up with a rent boy. What was amazing was that this business transaction actually reminded me how much I had enjoyed sex in the past and had to try to find some way to bring at least some sex back. I think for me I had internalized so much homophobia and blamed myself for my status by having "too much" sex that my self punishment was to deny that I needed it in a healthy emotional way. Giving up some of my self blame helped me to stop denying how much I actually missed the touch and feel of another man. Now older, lipodystrophic, and not so attractive, sex is a very rare thing indeed. Enjoy what you can or try a positive dating site so there is no need for disclosure.
On a medical note, apporoximately 100% of HIV+ men have the HPV virus, some strains of which cause anal warts and others can lead to rectal cancer. The vaccine is currently available only to women but many ID doctors are giving it off label to gay men. HPV can be transmitted just through touch and thus its ubiquity. Get your anal canal checked!
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Comment by: fogcityjohn (San Francisco, CA) Tue., Mar. 2, 2010 at 8:00 pm UTC
@ Dennis in Mombasa, Kenya: If abstinence made us better people, I'd be approaching sainthood by now, and believe me, I sure as hell wouldn't deserve that honor. @ Almost a Virgin in Malibu: Getting tested is essential. You should also get a test six months after the exposure, since in rare cases it can take that long for antibodies to develop. Do you know your partner's status? Did you discuss HIV before having sex? If the answer to those questions is no, then you really need to reflect carefully on your sexual practices. It's important to talk about HIV and other STIs *before* having sex, and it's even more important that you protect yourself each and every time. Condoms are effective, and don't let any man tell you they're too small. My former partner was very well-endowed, and we never had any trouble finding condoms that would fit.
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Comment by: Almost a Virgin Again (Malibu, CA) Tue., Mar. 2, 2010 at 2:23 pm UTC

Hey! I loved what you shared especially regarding the intimacy part. Yes, we are human and need intimacy. John, you are sensitive and honest. I respect you. Notwithstanding the fact that America is puritanical, personally, I say it is a travesty!! Double standards to say the least. I stopped having sex 15 years ago, and met a man to whom I was deeply attracted.

Night before last we had unsafe sex. He said had no sex with a woman for two years. He was well endowed, and after 15 years of of no intercourse, well I felt like a virgin again because of the pain I experienced! The condoms I brought were too small for him; he tore it off!

However, I am concerned about the unprotected sex. I will go in for the HIV test in 6 weeks then again in 12 weeks. I will certainly carry large sized condoms now.

Thanks for your help.
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Comment by: dennis (mombasa-kenya) Tue., Mar. 2, 2010 at 8:31 am UTC
Its true abstaining doesn make one more good
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Comment by: Sam (Vancouver, BC) Mon., Mar. 1, 2010 at 5:54 pm UTC
@EB (NJ) : I can’t agree more with you. I know I am positive and I know my viral load is undetectable and I have not missed even one does of my medications. Although the possibility for me transferring HIV is not zero, it is very close to it. Adding to the equation that since I know I am positive and I disclose my status my sex partner is more careful about HIV transmitting as well compare to someone who doesn’t know/lie about his status. There was a research and it shows the number of new infected to HIV decreasing in Vancouver, one of the reason is the free treatment which makes it available to all in need. I agree with you on challenges, but what I wanted to say is my status put me on the situation of being used. I am not saying this happens to all of us, but I talked about my experience which wasn’t a good one. Maybe it hurt me much that I even do not like to think about sex anymore.
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Comment by: fogcityjohn (San Francisco, CA) Mon., Mar. 1, 2010 at 1:58 am UTC
@ EB in NJ: I agree that everyone needs to be responsible for his own health. It's a mistake for anyone to rely on a prospective sexual partner's claims about his or her serostatus. Some people lie about their status, and others simply don't know theirs. @ Sam in Vancouver: If you have a negative partner, he doesn't have to risk his health being with you. You can protect yourself by using condoms every time you have sex. For more information, you can check out Dr. Bob Frascino's forum on "Magnetic Love." And follow our new blogger Magnetic Mama as she recounts what it's like to be the HIV-negative half of a sero-discordant couple. @ Terron: Thanks for taking the time to read my post. Glad you liked it. You know what they say -- still waters run deep. :-)
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Comment by: Terron J. Cook (Oakland, CA) Sun., Feb. 28, 2010 at 6:24 pm UTC
John: WOW! I do not know just what to say, my friend. I never knew how passionate you were about so many things contained within. I am so glad that you have found a venue to where you can speak your peace freely. You deserve that!

This website is truly amazing. Always know that you have a good friend in me. Make it a great Sunday!

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Comment by: Sam (Vancouver Canada) Sun., Feb. 28, 2010 at 5:05 pm UTC
@ John: Thanks John, I guess you are right I have to try to change the way that I think. But the question is if I am normal why do I get anxiety when it comes to sex and relationship. I feel my HIV status will make me uncomfortable in a relationship specially if my partner is negative. I have been there and disclose my status honestly and he was happy at the beginning, but after few months he starts bringing the idea that what do I risk in the relationship!? He said he is risking his health and he felt I am not committed enough and risk enough to apply for his immigration. At that time I though had the feeling that my partner was trying to take advantage of me because of my status and thought he accepted me for immigration. Hard feeling but I was storing enough to get out of that relationship, and now I even more scare to get involved and getting into the same situation. Guess on the same page as what you are “No SEX”! And I agree with you, I am not supposed to see HIV as moral defect rather than just an illness.
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Comment by: EB (NJ) Sun., Feb. 28, 2010 at 11:05 am UTC
I've had HIV and been on successful treatment for 6 years now.

Can we just step back for a moment and consider the mindset of all the people who don't want to have sex with "us" once we disclose our status? These people all hang their hat on the answer to this one question...when in reality I would be a far less risky partner than someone who a) doesn't know his status, or b) falsely thinks he is negative but doesn't know, or c) was neg on his last test but has converted and is in the window period of HIGH infectivity. What all these people have in common is that it is THEIR ISSUE of faulty risk assessment, not ours.

I've had my share of times with NO libido, guilt, feeling dirty, undesirable, etc. And I've come out on the other side having met a fantastic partner (of 4 years) who is Negative--we're discordant--and it's not always easy but it is rewarding to be together.

I have a soulmate...there is hope. One must always be willing to challenge assumptions, take (emotional) risks, and keep fighting.
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Comment by: Chris (Colorado) Sat., Feb. 27, 2010 at 9:49 pm UTC
What a beautiful article! I empathize with your lack of desire that is not desire-based at all. I completely agree with your introduction of the psycho/social factors that we use to allow ourselves to minimize and even cauterize what is clearly a natural and basic human need for touch, intimacy, and sexual expression. I have long felt that the Sacredness of the sexual experience has been taken from the forefront of our North American mindset. Unfortunately, fear still hampers the social pariah from both sides- those who have HIV and those who don't. I include myself and my fear manifesting into hesitancy and reluctance in the collective human celibacy.
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Comment by: fogcityjohn (San Francisco, CA) Sat., Feb. 27, 2010 at 7:31 pm UTC
@ Sam in Vancouver: You mustn't say you're not "normal anymore." You certainly are normal; you just happen to have a disease. That disease has possible symptoms, and its treatment may bring side-effects, but when you talk about the "consequences" of your "wrong decision," I think you succumb to a mindset freighted with implicit value judgments. I happen to think this is unhelpful, because I believe it has a lot to do with the stigma that still surrounds HIV. Look, every day people drive cars, and they take the risk that they may be injured in an accident. If they happen to get injured, we don't judge them for it. They may not have been careful enough in driving, but we don't pronounce some kind of moral verdict on them. We just see them as injured. HIV is no different. Sure, it's an infectious disease and is preventable. We should do all we can to keep it from spreading. But please, let's not fall victim to the mindset that HIV is some kind of moral defect. It's an illness, and that's all.
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Comment by: Mark S. King (Ft Lauderdale) Sat., Feb. 27, 2010 at 12:44 pm UTC
Beautifully written, John, and so many truths in this piece. Thanks for sharing it.
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Comment by: Sam (Vancouver Canada) Fri., Feb. 26, 2010 at 7:41 pm UTC
Thanks John for your support, as I mentioned I started my medications about almost tow years ago and I do not see any changes yet. I decided to go to HIV center of Excellence in Vancouver instead of private clinics.Like anything else this has advantages and disadvantages, since i try to see only advantages I can say I am getting a very good care, my specialist is the head of International AIDS and someone that I can trust 100%. But the disadvantage is that I will see only HIV patients when I am there. It usually takes more than an hour which even makes me to see more and more in different circumstances and different medical complications, but somehow I see them as my future mirror that I see myself there. Understand that I amy not to go there, but my question is what prevents me to accept the fact that I am not normal anymore and should expect the consequences of my wrong decision. I guess it is hard to get there but I am hoping I will get there one day and left this behind and accept the fact and go on in my life.
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Comment by: fogcityjohn (San Francisco, CA) Fri., Feb. 26, 2010 at 2:27 pm UTC
@ Sam in Vancouver: I don't know whether it will calm your anxiety to hear this, but my understanding is that the majority of HIV patients do NOT develop lipodystrophy. My personal belief is that the percentage of patients who do experience body shape changes is higher than either the drug companies or some doctors will admit, but I don't think that you're doomed to have this problem. Take a look at TheBody's lipoatrophy resource center and go to the Ask the Experts section for more information. I'm sure one of the docs there can give you better statistics than I can.
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Comment by: Michael (Fort Lauderdale, FL) Fri., Feb. 26, 2010 at 1:54 pm UTC
You've captured my feelings completely about HIV and Sex. My feelings about Lipoatrophy and Lipohypertrophy. It is hard to feel or act attractive when one has to deal with those physical changes. Thank you for sharing.
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Comment by: Sam (Vancouver Canada) Fri., Feb. 26, 2010 at 1:21 pm UTC
And finally I agree with Pat, maybe that works
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Comment by: Sam (Vancouver Canada) Fri., Feb. 26, 2010 at 1:20 pm UTC
About the sex, I agree with john, same idea comes to me all the time when I have to disclose my status before having sex. Rejection comes first and more than rejection letting my top secret to go around makes me to feel not to have sex and leave my top secret as mine and not to share it with anyone else. But like john I need that intimacy as well. I think it may be much easier to find a HIV positive partner. I believe more than anything I can share my feeling with someone who can feel what I am going through, rather than jeopardize his health over love and maybe increase his expectation level because what he is jeopardizing with being with me. On the other hand I think I would feel I have to give way more advantages juts because I am positive. Am I getting the same intimacy if I get in love with a HIV positive guy? Will I feel more comfortable to go to bed at night? Am I looking forward for the night to come to cuddle my boyfriend in the bed? Will it help my anxiety if I live with a HIV positive guy? Or maybe it is just my thought and it will be the same after all.
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Comment by: Sam (Vancouver, Canada) Fri., Feb. 26, 2010 at 1:19 pm UTC
I have been diagnostic very early after I was infected on 2001 and on medication for about two years. Medication works well and I feel I am lucky that in Vancouver I can get one of the best possible medical care. Lipodystrophy is not started well, but I know it will come to me sooner or later and I thought about it a lot. When I bring it up to my doctor, he always smile and say he is not worrying about it since the new medications do not effect as bad as previous generation, but it does not make me to feel that I am safe. I was thinking about my possible physical changes and always I see the worst possible scenario. When I am in the clinic I see other patients’ changes and right away I see myself in their shoes. Although I am getting the best service from the medical center, and trust my doctor 100%, but still I get anxiety when it comes to the time to go there and trying to find a good reason to postpone it, just because I am scared of my journey! One time it comes to my mind that if it is the same feeling for patients who is suffering from other medical conditions that makes some physical changes, like someone with cancer? How much do they suffer? Am I suffering more because I like/have to hide my status to avoid stigma against HIV? Am I suffering more because I like to keep this as my top secret? Am I hiding it because I do not like to be judged? Or maybe I am hiding it because I like to ignore it and live normal? I am not sure for what reason, but as the matter of fact I know I like to keep it as top secret. Maybe if I get to the point to let it go, I may be more comfortable with me, myself, my life, and…..
More on the next (limit to 2000)
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Comment by: fogcityjohn (San Francisco, CA) Fri., Feb. 26, 2010 at 12:55 pm UTC
Today's comments seem to span the globe, and I am touched by all who have taken the time to write. I will try to respond to the main themes. @ sancia h in Africa: Like you, I'm not really interested in numerous casual encounters. Give me one special person with whom I can truly share myself both physically and emotionally. @ PJ in ATL: Agreed. Safe sex is a shared responsibility. If everyone protected themselves 100% of the time, we'd stop this epidemic in its tracks. @ william b in Malawi: I can understand your fear of the stigma that may accompany disclosure. I am sure this is a very difficult issue in Africa. I do believe, though, that if you can find someone trustworthy with whom you can be open about your status, it will help ease the psychological burden of dealing with HIV. It's hard to face something like this totally alone. @ Christa in Durban, RSA: I don't think HIV has to put an end to our sex lives. I know many poz people who have great sex lives. It makes things more complicated, as I've explained in the post, but I don't think my sex life is over forever, and neither should you. @ Bill in Ireland: I can't begin to imagine how you must feel. I hope that you are seeking counseling to deal with the emotional difficulties you're facing. Sorting them out is the first step. @ Alexander in Montréal: Like you, I've had difficulty verbalizing this issue with my doctor. He seems uninterested in it. I think I'll need to be more forceful in getting it addressed, whether that requires testosterone supplements or something else. But I agree that it's a hard thing to discuss. @ Pat in Edmonton: Here in San Francisco, we actually have a monthly HIV+ dance party called "Revolution." There are also a number of other poz social groups. So I can certainly meet other poz men. Given my lack of libido, however, I'm not sure what I'd do once I met them. ;-) You make a good suggestion, and I should probably take advantage of the opportunities here.
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Comment by: Pat (Edmonton , Canada) Fri., Feb. 26, 2010 at 10:16 am UTC
amen brother..word for word my present circumstance and feelings are the same.
So the question remains. What can we do to rectify the situation?
Here's my thinking. The std dating sites don't work in my experience. How about we organize a group of similar minded hiv+ guys and gals to meet and greet with one thing in mind.To pair off and restart each other's sex life. Sound far fetched? I don't think so.
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Comment by: Alexander (Montreal) Fri., Feb. 26, 2010 at 7:53 am UTC
Thank you for posting this. Since my sero-conversion in 2003, I have felt this way about my lack of and fear of sex but have had difficulty in verbalizing it to either my partner or my med support team.

True sexual intimacy seems to exist now only in memories.

Apart from the HIV element of this issue, your very healthy view of sex in general is a welcome beacon in the fog of current christian fundamentalism that pervades American politics and culture.
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Comment by: Bill (Ireland) Fri., Feb. 26, 2010 at 5:53 am UTC
I have the same symptoms. No libido, physical changes and the idea of being pos is still diff for me to accept.
I infected my wife and our son was born pos. I live with the guilt of my actions and find it very difficult to like myself...never mind another person right now.
I hope we both end up finding true love, but with this infection that will prove difficult.
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Comment by: Leejean (Singapore) Fri., Feb. 26, 2010 at 4:18 am UTC
I just came across your blog. Thank you so much. Your entries hit a cord on so many levels.
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Comment by: Christa (Durban, South Africa ) Fri., Feb. 26, 2010 at 4:04 am UTC
I couldn't agree with you more John....I know the feeling. I have just hit the 4 year mark, after living with the virus from 1998 Pls somebody tell me my well hasn't run dry? It is possible this is it with sex, NO MORE...???
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Comment by: willliam B. (Malawi) Fri., Feb. 26, 2010 at 3:41 am UTC
Disclosure of one's status is like committing suicide. You only invite stigma. It is important to keep secret to oneself and God . Do not trust any human being.
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Comment by: PJ (Atlanta) Fri., Feb. 26, 2010 at 2:05 am UTC
Abstinence is ABSOLUTELY NOT an option for human beings, or even animals, for that matter! When is the gov't finally going to wake up and realize this?
As for disclosure, it doesn't have to be mandatory. I wasn't disclosed to until after I was infected, and even then, I should have been more protective of my body, as should my partner.
What IS IMPERATIVE is safe sex all the way around. It takes two to tango, so everyone shares the responsibility to protect themselves and each other from STDs.
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Comment by: sancia h (africa) Fri., Feb. 26, 2010 at 1:42 am UTC
i can relate to that. you don't stop having sex intentionally, it just happened for me too. i also miss the intimacy more than anything but to find a person interested in the closeness thing is nigh on impossible now. i'm not interested in numerous casual encounters, i just want one person i can share special and not so special times with. thank you for your blog.
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Comment by: fogcityjohn (San Francisco, CA) Thu., Feb. 25, 2010 at 5:56 pm UTC
To all, thank you for the kind and insightful comments. @ Jose in Miami: I agree fully that we don't deserve this celibacy. In my case, it's partly self-imposed, so I don't want anyone to think I'm blaming others for it. @ John in NYC: Please don't misunderstand me. I'm not saying that full disclosure is necessarily mandated in every sexual situation. I'm only saying that *my* personal choice is to disclose my status before I have sex. And I fully agree that this is a two-way street. I have to take responsibility for protecting myself and others from STIs, but my sexual partner bears exactly the same responsibility I do. @ Jeff in Tampa: It's great to hear that your serostatus isn't stopping you from having a fulfilling sex life. It gives me hope. @ Peter in Copenhagen: Would have been happy to meet up with you during CROI. If your life should take you back to San Francisco somtime in the future, just drop me a line. And thank you so much for the complimentary words. I'm glad you find something of value in my blog, and I appreciate that you've recommended it to others. I know full well that my experiences can't be unique. There are so many others out there facing the same challenges you and I do. I'm just trying to give voice to some of the things we have to contend with.
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Comment by: Peter (Copenhagen, Denmark) Thu., Feb. 25, 2010 at 5:08 pm UTC
John, thanks for yet another blog that makes me feel that I have a soul mate 6000 miles away. I am a 52 year old gay poz man from Scandinavia, and just wanted you to know that your thoughts are carefully read over here, and that I have recommended your blog to several poz friends of mine. I have just been to San Francisco for the first time in my life for the CROI-conference (as you know the US has only just begun to allow hiv-positive people to enter the country), and was overwhelmed by your city's charm and the friendly attitude of everyone that I met. Only wish I had had the opportunity of saying hi to you also. Please keep writing. You truly make a difference.

My sex-life stopped in exactly the same way as yours and I even have a husband whom I love very much (yes, over here gay marriages do exist), but as you point out: one day your libido suddenly fades away without you even being aware that it is happening. I hope that scientists soon make a study of the sex-life of poz people (or lack of it) with the aim of bettering the deplorable unsexy state many of us find ourselves in.
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Comment by: Jeff (Tampa, FL) Thu., Feb. 25, 2010 at 4:28 pm UTC
I haven't had the same experience at all in my 3+ years of being hiv+ (but I haven't suffered any lipodystrophy). Though a couple of people have declined to have sex when I say I'm hiv+, most have gone ahead anyway, at least once, and some are quite willing to have an ongoing sexual relationship. My only real complaint is, I hate having to use condoms all the time, but that's just the way the world is these days.
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Comment by: John (New York, NY) Thu., Feb. 25, 2010 at 4:01 pm UTC
I understand why something like lipoatrophy makes someone self-conscious and feel not-so-attractive. I also understand the value of learning to think of sex as something more than just "scratching an itch." I agree that even a casual encounter is an act of intimacy in that it requires two people allowing each other to express their need and animal drive for another human, even if it is "only" for pleasure or stress release. But I don't agree that "full disclosure" is mandatory in every sexual situation. If a prospective partner expects to engage in unprotected, high-risk intercourse--it's one thing. But low-to-negligible risk sex, such as oral? Hmmm. Sex is a two-way street and both partners are responsible for their own choices. No one can assume or expect the other partner, particularly if s/he is a stranger (as in an anonymous encounter), to protect us or look out for his/her best interest. I agree it is wrong and immoral for an HIV+ person knowingly to put another at risk in a high-risk act (again, unprotected intercourse). But I don't believe it is "only" the responsibility of the HIV+ individual. The law is very inconsistent about disclosure from state to state, with many states seeming to acknowledge the individual responsibility factor in adult sexual relations.
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Comment by: Jose (Miami, FL) Thu., Feb. 25, 2010 at 3:27 pm UTC
Your blog is 100% percent on mark. Disclosure is the "debbie downer" of this disease, I still can't get anyone to become intimate with me - disclosure causes stress, anxiety, fear, depression and a lack of libido. Rejection is painful and if you don't disclose then you run into serious legal issues. I haven't had sex with anyone in 3 years as well - I don't think we deserve this celibacy!
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Comment by: francis (philadelphia, pa) Thu., Feb. 25, 2010 at 2:53 pm UTC
how true your blog is, the same holds true for me
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